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HELP! Has my daughter got Interstitial Cystitis/Painful Bladder Syndrome?

(169 Posts)
carolineinthegarden Thu 02-Jan-14 19:58:29

Hi everyone, I'm new to this - I hope I'm doing it right.
I read some useful stuff on here about interstitial cystitis but it's all quite old and I wonder if anyone has got some current thoughts to share.
My daughter is 19 and she had bacterial cystitis twice last autumn. Ever since the second time she feels she needs to urinate ALL THE TIME. Not just frequent, but every second of every day (no pain though, just the ultimate in discomfort). She has had four urine cultures which came back negative for bacteria, but the symptoms don't go away.
We have tried homoeopathy, acupuncture and herbal medicine (from old recommendations I found on here) alongside all the normal tests (STI screening; ultrasound; x-ray; blood test). Not yet had the cystoscopy as we fear it might just make everything worse. She is now on a strict, mainly vegetable diet, and has not had any sugary stuff or caffeine/alcohol for almost 2 months.
We are all feeling despairing. The prognosis for IC patients seems very bleak and we don't want to admit that this might be her life from now on.
Does anyone have any idea what might work, or how long things like diets might take to make a difference?

lfoatw2 Thu 02-Jan-14 20:33:22


sorry to hear about your dd - my life was awful when i suffered and was constantly having to run to the toilet for no reason. mine never seemed to be caused by bacteria but i eventually worked out that my problem was concentrated squash. completely random and my doctor had never heard of it but i was drinking it every day and a within a few days it had gone and i have never had any symptoms since - several years later! i went on a strict alkaline diet for a while too as it seemed to be the ability that was the problem - a quick Google search lets you know foods that turn alkaline in the bladder which will ease any burning at the very least...

MrsSteptoe Thu 02-Jan-14 20:37:26

You're not going to like this, caroline... mine didn't go till pregnancy, and there is a bit of broader evidence to suggest that IC calms down during the second and third trimesters, though it's a bit hither and yon.
Having said that, I had a cystoscopy and subsequent bladder instillations (which usually involved being emptied via a catheter, because it also caused quite bad retention to the point where I could have an absolutely full bladder and not be able to release any urine), and the instillations continued up until I realised I was pregnant. It is therefore not out of the question that the instillations were helpful - but because it coincided with pregnancy, I can't be sure.

MrsSteptoe Thu 02-Jan-14 20:39:43

lfoatw2 were you partial to any particular flavour? I would swear that mine has recurred (sorry, carolineinthegarden) since I started drinking concentrated orange squash, and your post would seem to reinforce my suspicion.

lfoatw2 Thu 02-Jan-14 21:07:02

i used to drink orange mainly, sometimes lemon. i did make it quite strong but if i use something that isn't concentrated i can have it just as strong with no problem. the relief was incredible when i cut that sort of squash out of my diet!

Queenofknickers Thu 02-Jan-14 21:13:03

Sorry to hear your daughter is going through this. I was the same at her age and it was actually being caused by kidney stones - has she had her kidneys scanned with an IVP? I also had a cystoscopy (not pleasant but worth it) which found a deep infection in my bladder which 6 weeks of strong antibiotics got rid of. Hope she finds some help x

MrsSteptoe Thu 02-Jan-14 21:38:30

Thanks, lfoatw2. Mr Steptoe has been instructed that henceforward, the drink of choice at Chateau Steptoe is suitably light-coloured tea until further notice. Will give it a shot.

Basketofchocolate Thu 02-Jan-14 21:44:49

Another one here who can't drink squash! Get frustrated watching DH and DS downing refreshing glasses of high juice! I manage a couple of mouthfuls but if drink a glass or two for couple of days I get 'inflamed'.

Have also suffered with a type of eczema in the urethra area. This gave me UTI symptoms for years but only sorted once found a doc who realised no bacteria meant couldn't be infection. Was pure accident to be diagnosed. Was given an unusual cream that I can't remember (sorry) which sorted it but now use a very mild one like hydrocortisone when (rarely) necessary.

Basically tight trousers or cycling (or sex) can mean sensitive skin gets agitated and it makes me feel like I need to pee constantly.

Lepreporn Thu 02-Jan-14 21:45:44

Hi my mum suffers from this. She gets Botox treatment once a year on her bladder. It sounds crazy I know. This treatment has changed her life. We joke that she has the best looked after bladder in town.

Fairylea Thu 02-Jan-14 21:50:20

Has she been on any long term antibiotics?

I am on cefalexin 500mg every night and have been for the last 20 years. It seems to keep most bouts of it at bay. Occasionally it will flare up (mostly if I am run down in general) and the gp said to up the dose myself to 3 times daily.

Just knowing I have a big supply of antibiotics makes a difference to me. But your dd will need to go to a urologist to get these.

I have no side effects and no long terms issues from taking them so long. I've even taken the cefalexin during both my pregnancies with no problems.

Honestly with cystitis and IC antibiotics really are the best way to go. In my opinion anyway

kitsilano Thu 02-Jan-14 22:00:02

You shouldn't assume IC without proper diagnosis. I had exactly these symptoms for almost a year after a history of more typical cystitis. Constant feeling of full bladder, urine tests all came back clear. Eventually got a referral to a urologist. Had a bladder biopsy which showed infection deep within the wall of the bladder. Several months of antibiotics but I was then fine.

Please, please push for more investigation or your daughter could suffer needlessly for years.

DontCallMeDaughter Thu 02-Jan-14 22:02:12

Just wanted to add my support for your dd. I was diagnosed with IC and vulvar vestibulitis in my early 20s and it was easily the most miserable few years of my life.

I was incredibly lucky and a total lifestyle overhaul similar to what your dd is doing really helped me. I lost 5st and cut out all of life's edible pleasures (inc squash). It took 6 months to have any effect though. I eased off the strict diet after a couple of years and reintroduced most things and can more or less live normally now. But I live in fear of any form of recurrence.

It was really tough on my mental health and I also required treatment for depression during the worst of it. I was in pain a lot of the time as well as having the need to wee constantly.

So I can't suggest anything you aren't already trying, but hopefully offer some hope that it might not be forever. thanks

MrsSteptoe Thu 02-Jan-14 22:04:09

Hah. The evidence against the squash is looking overwhelming. Don'tCallme, the fear of recurrence haunts me.

carolineinthegarden Thu 02-Jan-14 22:47:38

Wow - I can't believe how quickly everyone has responded. Thank you so much.
ifoatw2/Mrs Steptoe: I don't think the squash thing is implicated in this case, but very interesting to hear about your experiences with it.
QueenofKnickers: The scan didn't show any kidney stones - but the deep infection sounds feasible. Perhaps she'd better have that cystoscopy after all - particularly after hearing about Kitsilano's infection within the wall of the bladder.
DontCallMeDaughter: Thank you for the kind words of hope - really pleased to hear about your success after the diet. If she loses 5st she will disappear completely! I can fully understand why you needed treatment for depression. It's such an awful thing to have to deal with.
Fairylea: She had four different lots of antibiotics but not Cefalexin. How did you end up being put onto this as a long-term treatment? Did they find an infection that nothing else could treat? i.e. were bacteria present in your urine samples?
Incidentally, the medical herbalist she's seen said the four lots of antibiotics together with the birth control pill are probably to blame as they (apparently) have caused overgrowth of yeast in the gut (Candida presumably). I think this inflames the gut and therefore everything else in the vicinity. Has anyone else had any experience of treating it through this type of method (i.e. herbal anti-inflammatory/anti-fungal medication plus diet)? At the moment we would try ANYTHING.
Thanks to you all. Keep them coming - really helpful to know we are not alone...

condaleeza Fri 03-Jan-14 00:40:34

I once read that stretching the bladder by drinking lots of water and holding on for a while may help 'desensitise' the bladder walls. Cranberry juice used to be recommended as well.

RaspberryRuffle Fri 03-Jan-14 01:06:23

Cranberry juice can help bacterial cystitis but isn't usually recommended for IC as it's acidic. Your daughter could try cutting out some common IC triggers to see if it makes any difference (tomatoes, squash, tea, coffee, cola). Fwiw barley water is supposedly more 'gentle' than regular squash. Do tell her to drink something, the temptation is not to drink to avoid the full bladder feeling but this just makes urine more concentrated. It might not be IC. Will her Dr let her try any medication for her symptoms? She is only 19, get her to try one or two things at a time, there are lots of treatment options which can feel overwhelming, but means sooner or later something will help. Try looking at COB foundation website, though don't automatically read the extreme cases and think this will happen. Hugs for you both. I've been in her position, was helped by eliminating some foods, I also had accupuncture and cranial osteopathy, and used other alternative therapieswith varying success before trying medication, cystoscopy, instills. If possible see a consultant who deals with bladder and gynae issues (urogynaecologist). Try to keep both your spirits up, easier said than done. If you want to ask anything specific PM me.

MrsSteptoe Fri 03-Jan-14 09:37:11

I second the drinking thing - because my bladder wasn't voiding properly, any residual urine was just concentrated pee that was hanging around, a haven for breeding bacteria.

carolineinthegarden Fri 03-Jan-14 09:39:06

Thanks RaspberryRuffle. Have wondered about cranial osteopathy. She's been drinking JUST mineral water, up to 2ltrs per day, hoping it might help. She's seeing a conventional urologist as well as the herbal specialist (the latter of whom is very expensive). She tried Vesicare for overactive bladder, but it didn't help. As you said, we think it's best to only try one or two things at a time but don't really know how long to try them before moving on to something else. Will look at the COB foundation website. Also look for a urogynaecologist to replace the urologist. Will PM you as interested to hear more. Thanks again everyone.

Fairylea Fri 03-Jan-14 10:53:43

I don't mean to pee on your parade (pun intended!) But I'd be really careful about going down the alternative route without having gone to the gp and asking for a referral to a urologist and having all the tests (I haven't read back but if I'm right you say she hasn't had these yet?)

I had all kinds of treatments and I just found it make me so miserable, all the watching what I ate and drank all the time. It's no fun as a young woman. It's also not necessarily true that it works depending on what you have.

I had all the tests at hospital. They found my kidneys weren't emptying my bladder completely every time I went to the loo so I was always keeping some urine behind and this was constantly getting infected. So they put me on the cefalexin. I'm not saying your dd needs the same thing but it really works for me.

I saw one of the top specialists in the UK about it and he also gave me the tip that if I am really struggling to have a very strong double expresso followed by lots of water an hour later. The caffeine irritates the bladder and encourages you to empty it and the water flushes it through. It really works for me but no alternative therapist would dare recommend this!

Please go back to the gp, have some tests done and get a proper diagnosis.

carolineinthegarden Fri 03-Jan-14 11:04:21

Thanks for the tip, Fairylea smile
She has been to referred to urologist and had x-ray, ultrasound, blood test and STI tests through him - everything seems to be normal. Only thing left is the cystoscopy/biopsy - we are reluctantly going to go ahead with this as soon as he's back from his Christmas holiday.
Really interesting about the caffeine - I always found that black coffee helped me 'flush through' bacterial cystitis, so you might be onto something there. Do you happen to have the name of the specialist you saw?
Thank you again for taking the time to reply! thanks

MrsSteptoe Fri 03-Jan-14 11:05:39

<takes notes>

Fairylea Fri 03-Jan-14 11:25:15

I know it's hard but try and be positive about having the tests... hopefully they will make her better once they've done them! Fingers crossed anyway.

The specialist I saw was based at kings college hospital in London but this was in the 1990s (1994/5ish) so I have no idea if he is still there anymore unfortunately. I later relocated and now live in south norfolk and I am under the care of the urologist at norfolk and Norwich and they have a very good department there too.

I have found once you have a proper diagnosis from the hospital the gps are much more helpful and willing to give you larger batches of antibiotics in one go which is nice as you can have a stock ready. (Waiting overnight to get to the gp with a bout of it used to be absolutely awful, I'd be hunched over in tears and in pain).

The caffeine thing definitely works. For me anyway!

carolineinthegarden Fri 03-Jan-14 13:20:56

Fairylea, big thank you for all the info. Not convinced that antibiotics are the way to go if there are no bacteria present (which it doesn't look like there are), but will definitely keep that in mind. Thanks for the reassurance about the tests, as well. After having heard so many horror stories about the cystoscopy making IC symptoms worse, it's hard not to be a little dubious... But we will try to take your advice and stay positive!

Thanks again, everyone, any suggestions are a huge help and much appreciated. My daughter is also very grateful.

ILoveAFullFridge Fri 03-Jan-14 13:33:46

Have they considered over-active bladder? My (much younger) dd has this and has been helped enormously by taking oxybutinin.

Her condition flares and subsides, and we struggle to identify any triggers, but when it flares up the symptoms are very similar to what you describe in your dd.

carolineinthegarden Fri 03-Jan-14 15:54:14

Thank you, ILoveAFullFridge (great username!) - she has tried Vesicare, which I think was in case of overactive bladder syndrome, but will ask urologist if he thinks Oxybutynin might help. Just seems mad that she could have developed something like that from one UTI! confused

IndigoBarbie Fri 03-Jan-14 19:46:27

By the time I had been referred to urology, they wanted to start off with urodynamics testing and bladder retraining. This was counter-productive, since, I had no issue holding a lot of urine in my bladder. However, I was told I had to follow this retraining programme to assist my diagnosis - looking back, it didn't help. It made me feel much, much worse. The first urologist I saw had never heard of IC, and after a cystoscopy thought I might have something which is called a urethral diverticulum, as there was never any bacteria found in my cultures. He wanted to 'stretch'my bladder using a potassium wash, to see if this helped my symptoms. I actually said to him before the cystoscopy NOT to stretch my bladder, as it didn't require it. Thankfully, he listened. He put me on a course of vesicare, but these didn't really touch the pain.
I was then sent to a specialist seek further treatment/consult on this potential urethral between times, I discovered that the start of my issues had occurred whilst on a 'juice' fast. All of the ingredients were very high in potassium. Thus, I had self-diagnosed and started to cut out all of these types of food from my diet. By the time I saw the specialist, he agreed with me not to go back in with camera, but to see if things settled. They did. He agreed he felt this was IC. If I feel a flare up coming on, I can take an antacid and this helps to see me through, until it fades away. Also, what I have discovered is, if I get symptoms the best thing is to urinate to get the pressure away. It took me a very long time to discover how I could manage this....very life upsetting in many ways. HTH, and good luck

carolineinthegarden Fri 03-Jan-14 22:47:11

Thank you IndigoBarbie - sounds as if you have had a pretty difficult time - not helped much by the urologists. It's scary to find that you basically found the answers by yourself, whereas one would hope that the 'experts' would be able to suggest these causes. I suppose it just goes to show what a vast unknown area this seems to be.
How long did all this take for you? It sounds like a long, long process.
I'm so pleased I have discovered MN, it helps to know there are others out there...

carolineinthegarden Mon 06-Jan-14 12:32:10

Just an update for any more sufferers who might be reading - my daughter had her second appointment with the urologist today. She is going to have the cystoscopy and a bladder biopsy to look for mast cells next week - apparently they don't normally find anything, but it has to be done in order to get treatment. Then he will try her on a drug called Solifenacin (although I think this might be the same as Vesicare which she has already tried), and then a 6 week course of bladder instillations. If anyone has any experience of any of these treatments, please get in touch! Thanks everyone.

Namecforthis Mon 06-Jan-14 21:40:44

so much sympathy - I have been here. 2 years of tests and waiting months between appointments to see urologist. I did end up suffering from depression and anxiety and it escalated to a constant urge as your daughter has now. Unfortunately anxiety has a huge effect on the bladder and who wouldn't be anxious when you don't know what's wrong with you and if it will ever end! It's a vicious circle. I'm really just posting to say there is hope and treatments and she will NOT have to live like this for ever. I was eventually diagnosed with overactive bladder after paying to see urologist privately (but going back through NHS for urodynamics testing) I was prescribed tolterodine (for the bladder muscles) and fluoxetine (prozac for the anxiety) and I got better. Had 5 blissful years now it has recurred but it's not as bad and I don't think it will get as bad as I'm no longer worrying myself stupid. Couple of things I think have triggered it this time - reemergence of IBS the two seem to go hand in hand and starting smoking again - nicotine is definitely a trigger! Please reassure your daughter that she will find someting to help and it won't last forever, in the meantime anything she can do to help her relax and maintain her mental health will help. Keep pushing with the NHS

Namecforthis Mon 06-Jan-14 21:43:42

Whoops sorry just seen the update - all the best smile

heather1 Mon 06-Jan-14 21:49:42

Hi, your post sounds just like my symptoms. I had an unltrasound scan today and off to my Gp tomorrow for the results. I feel for your daughter as it's rubbish feeling like this all the time.

carolineinthegarden Tue 07-Jan-14 09:42:15

Namecforthis - thanks for your lovely long comment. How did your symptoms begin? Do you think they were triggered by anxiety or was there something before that which made you anxious? You're right, a vicious circle is exactly how I'd describe this! I have read a lot of stuff about yeast being the underlying cause of both IBS and bladder problems. Did you ever investigate this possibility? Best of luck with it all - I think you're definitely right, a positive mental attitude can work wonders for some people.

heather1 - so sorry to hear you are suffering as well. What are your symptoms exactly? Feel free to contact me if you'd like any info about things we have tried/researched.

ILoveAFullFridge Tue 07-Jan-14 16:47:20

Was thinking about dd's diet today, which reminded me about this thread. Does your dd eat a lot of tomatoes? Some people think that they can be itritat

ILoveAFullFridge Tue 07-Jan-14 16:49:26

tating to the bladder. They are also dd's favourite veg! TBH we never came to any conclusion regarding tomatoes with her.

Tomatoes are IIRC from the same family as sweet peppers, aubergines and potatoes, so if avoiding one its worth avoiding the others, too.

ILoveAFullFridge Tue 07-Jan-14 16:51:43

Another thought: there's clearly an emotional component in this condition - not that it's psychosomatic, but that it causes stress and stress worsens the condition, which increases stress, and so on.

Have you considered trying hypnotherapy or CBT to help cope with it and manage it?

carolineinthegarden Tue 07-Jan-14 17:56:22

Thanks for your thoughts, ILoveAFullFridge smile my daughter is on a strict IC/alkaline/anti-yeast diet at the moment so hopefully we've eliminated most food irritants. She says tomatoes are the only 'normal' food she doesn't miss, as she's always hated them! The urologist did mention that some people find that tomatoes, sugar and spicy foods make bladder symptoms worse, so you're probably right to be wary of them.

Hypnotherapy is actually the next thing on our list of things to try - great minds think alike! My daughter's stress seems to be a bit more under control at the moment, but will definitely look into CBT/hypnotherapy as and when necessary.

Thanks all thanks

carolineinthegarden Tue 14-Jan-14 19:48:00

Rosie has begun to have days where she feels marginally better now. After asking the acupuncturist about this earlier, it seems that the occasional lessening of symptoms might mean she is finally making progress. Interestingly, this has happened since she started taking Deborah Grant (medical herbalist)'a herbal supplements and especially since she has been taking probiotics. Remains to be seen whether this improvement will continue or if it is just a temporary relief. Will keep updating this thread in case there are any more sufferers reading out there - the acupuncturist said she had seen 4 new patients with the same symptoms since Christmas, so it is obviously more common than we ever realised!

Hi caroline I've just caught up with your thread and wanted to add my experience. I have had IC symptoms in the past (tho by the sound of it not as bad as your DD).

It sounds like she's doing all the right things.

I'd really echo namec's advice. In my experience anxiety plays a part in this as you get caught up in a vicious circle. I had symptoms at the beginning of last year which lasted for several months, and was very stressed by it. Following a watery, alkaline diet and lots of camomile tea eventually seemed to help resolve it. Recently, symptoms popped up again and because I knew it would go if I did all the things again (and I am also on anti-depressants), I was much less stressed, and it has disappeared much more quickly.

Anyhow I do appreciate that your daughter's situation is more severe, but I would say if budget allows, then regular reflexology or massage would be a good investment.

Wishing you both all the best

carolineinthegarden Wed 15-Jan-14 09:48:26

Thanks ColouringInQueen, it's very reassuring to hear about your positive experiences smile
Reflexology is definitely on our list of things to try, although can't try it at the moment as the acupuncturist recommends no other physical therapies while she is treating my daughter.
Rosie is trying very hard to control her stress levels - almost impossible when she is worried she will be stuck like this forever, but she's trying! I suspect you are right about it being easier to get better if you're not so anxious all the time - that's certainly what the acupuncturist believes.
Anyway, thank you again for your kind words.

yes caroline I do know from personal experience how hard it is to manage your anxiety in those situations. Good hobbies helped me.... Sounds like you have a good acupuncturist too. All the best

cardamomginger Wed 15-Jan-14 20:57:14

Over active bladder?

cardamomginger Wed 15-Jan-14 21:01:59

Or an immune response problem?

Is she hypermobile, or does she have things like IBS, Raynaud's, (too young for prolapse), postural hypotension, allergies?

I've had bladder overactivity, on top of persistent bladder wall infection (where no amount of antibiotics can shift it) and am currently being treated by an immunologist who specialises in this area. He says that they are starting to understand (last 5 years or so) that things like hypermobility, gastric problems, hard to shift UTIs, etc etc can cluster together for certain patients and that underlying at least some of these conditions is an immune response problem.

carolineinthegarden Wed 15-Jan-14 21:58:29

Thanks cardamomginger - I think they have tested for over active bladder, and seeing as Rosie doesn't have urinary frequency (only constant urgency) and her bladder capacity and kidney function are normal, it doesn't seem that likely. Have wondered about autoimmune - I am starting to believe that all these things are linked together, like you said, and maybe caused by an overgrowth of yeast. Yes she does have IBS and Raynaud's symptoms (very interesting to hear they might be linked, as the GP said the Raynaud's was totally unrelated) which can also be linked to yeast. Thanks so much for the food for thought - very interesting indeed.

cardamomginger Thu 16-Jan-14 00:08:14

Has she has an US scan of the bladder wall? If the wall is thickened, this could indicate overactivity.

If she gets a full immunological blood work up, that would show whether there is an immune response problem - whether that be an overactive autoimmune response or a poor immune response to infection.

I feel for your DD so much. Since having DD just over 3 years ago, I have had stress incontinence, urge incontinence, and this sodding infection. It's utterly miserable.

carolineinthegarden Thu 16-Jan-14 08:26:01

Yes she has had the US, they said it all looked normal. Will ask about testing for an immune problem - she insisted on having a blood test (none of the 7 doctors she's seen wanted to give her one) and they said her white blood cell count was a bit low, but they said that was expected given that she'd just been on 4 lots of antibiotics. Could that actually indicate a poor immune system? She has asked for another blood test next week so maybe that will shed some light on it.

Big hugs and sympathy to you - if we ever find anything that works, I will keep this thread updated so that other people might be able to benefit from it too. Wishing you all the best thanks xx

carolineinthegarden Thu 16-Jan-14 13:15:18

Rosie has just been tested for food allergies/intolerances using the Vega machine - really really interesting and would really recommend it to anyone with any kind of mysterious health problem like this. Seeing as Rosie has never been allergic to anything in her life, we were expecting it to be a bit of a waste of time, but instead it seemed to confirm exactly what we have recently been suspecting: Rosie has candida overgrowth, which was shown by an intolerance to yeast, candida, sugars and honey on the Vega machine. What this essentially means is that we are doing the right thing by following a strict, no sugar diet and that hopefully once the candida gets back to a manageable level, her urinary problems will go away. At the very least, it will make her body stronger and her overall health better.

I now feel that I am able to give you all a better idea of what happened. I believe the yeast overgrowth started when Rosie took the morning after pill, and shortly afterwards started taking the contraceptive pill, in August 2013, although it could have been building up for longer due to too much sugar and a very stressful year. This made her more susceptible to cystitis, which she developed a month afterwards. The antibiotics she took for this cystitis got rid of the bacteria (or most of them) but made the yeast overgrowth worse. A month later, she got cystitis again - either a new infection or the old one coming back with a vengeance. The 4 lots of antibiotics she took for this made the yeast overgrowth even worse, knocked out her immune system entirely and made it impossible for the inflammation caused by the infection to heal.

By starving the yeast (depriving it of sugar/other things it thrives on) and killing it with herbal antifungal tablets (I think she is taking ones that contain oregano) along with coconut oil (also a good natural antifungal), she is trying to rid her body of the candida overgrowth and therefore let the bladder heal.

I have no idea if this will be of use to anyone else but I do hope it is - the Vega testing lady we saw was Christine Wilson at the Berkshire health clinic. She was absolutely lovely and can help people determine their problem and provide them with a suitable diet plan.

Will keep updating on Rosie's progress in the hope that one day, her problem can help someone else xx

cardamomginger Thu 16-Jan-14 17:57:05

The full blood work up to look at the immune system involves about 12 vials of blood! If she wanted to look at this, she'd need to see a proper immunologist (and preferably one who takes an interest in allergy as well) as it's much more complicated and subtle that just looking at her white blood cell count.

Has she had her biopsy results back? If there are MAST cells present in the sample, that could indicate an immune system response problem. These problems are usually multi-factorial. MAST cells in the biopsy could indicate a problem with her response to histamine - either her body is producing too much of it, or that she is responding too much to histamine (I forget which - it really is very complicated!).

If she wants to start eliminating foods, looking at this might be useful:

I did an exclusion diet for IBS a number of years ago. It was hard and annoying to do, but it was quite interesting and I found out some things that would not have struck me as affecting me - e.g.potatoes were disastrous, but sweet potatoes were fine; lettuce was a no-no, rocket was good.

Has she has skin-prick or blood tests for allergy?

Sorry - am reading your posts out of order and consequently things are occurring to me randomly. You said that no bacteria are present (I presume in her urine). Testing is done to detect bacteria at a certain level and my uro-gynae explained that the bar for most testing is set too low (I cannot remember what the numbers are) and that when you test 'negative' urine to detect bacteria at a lower level, you get a positive result. Even then, a negative result might not mean that no bacteria are present in the sample. He also said that with infections that involve inflammation of the bladder wall, the bacteria can happily reside there even though there may be no bacteria showing up in the urine. So, again, a negative urine sample doesn't necessarily mean no infection.

In my case, abx keep the bacteria at bay. The keep the levels low enough that my symptoms improve and I pretty much feel normal. If I come off them, within a month, the levels have risen and are high enough for my symptoms to return. This could be what is happening with your DD. Which antibiotics has she been on? How long for? Has she been on different ones in rotation, or just the same one?

It's horrible. sad.

carolineinthegarden Fri 17-Jan-14 10:58:38

Oh wow. An immunologist will have to be added to the list of things to try if the current treatment doesn't work out, then.

She has not yet had the cystoscopy or biopsy - scheduled to have it next Thursday, although she's considering cancelling it if she continues to see improvement.

She is on a very strict diet and has eliminated almost everything that could cause a problem - the list of things that she CAN eat is less than a page long! Diet doesn't seem to affect her at all - she doesn't get 'flares' like most IC patients, although the exclusion diet does seem to gradually be having a positive effect.

No skin prick or blood tests for allergy - what do these show? Are they something that a conventional doctor would do to determine food allergies, as opposed to intolerances (as shown by the Vega machine)?

We have thought long and hard about the idea of a low level infection - she has been off the antibiotics for nearly 2 months now and seems to be gradually improving, which indicates that the problem is NOT bacterial. Nevertheless, we have contacted someone who tests for low level bacteria and that is also on the list of things to try!

She had Trimethroprim, Macroboid nitrofurantion (sp?) and two lots of Amoxicillin over the course of about 3 weeks back in November.

Thanks so much for all the advice, and I am so glad you've found a way to feel 'normal' again. I believe that antibiotics - as well as being very helpful, of course - do a lot of damage to the immune system. They almost certainly caused Rosie's yeast problem. So I strongly recommend taking a probiotic at the same time, if you don't already.

Wishing you all the best. Thanks again xx

therzinosaurus Fri 17-Jan-14 18:10:06

caroline - has your daughter been tested for coeliac disease? you mention she has IBS symptoms, just a thought as there is a link between coeliac and interstitial cystitis as they are both autoimmune disorders. your GP should be able to get a blood test done for it.

carolineinthegarden Fri 17-Jan-14 21:30:39

Thank you therzinosaurus - she has not been tested for coeliac but I will definitely bear that in mind. She is not currently eating any gluten (or anything at all that might be irritating her) so I imagine the IBS symptoms can't be related to diet, but it would be very interesting to find out. She's asked for a blood test next week so maybe we can ask then. The Vega machine showed she was fine with all foods other than sugars and yeasts, but obviously this is not quite the same as getting a test done by the GP. I'm not sure that IC is an autoimmune thing - I don't think anyone really knows what it is, but I've read plenty of theories that say it's autoimmune, and plenty that say the opposite! All very confusing and frustrating. Anyway, thank you so much for taking the time to reply smile

carolineinthegarden Thu 06-Feb-14 12:31:10

Sorry to bother you all again, but this is a message from my daughter, Rosie:

I am feeling completely and utterly desperate. I have been on the anti-candida diet for 2 months and seem to be worse now than I was a month ago. I am starting to think that maybe candida is not the problem... So if anyone knows of any reliable way of testing for systemic yeast overgrowth, no matter how expensive, invasive, embarrassing etc., please let me know. Likewise, if anyone has any theories about what causes interstitial cystitis/constant urinary urgency (I still haven't been officially diagnosed), no matter how crazy, please leave a comment. All my own theories seem to have hit a brick wall. I would do absolutely anything to get my life back, or at least to get back to a standard of life that is actually liveable. At the moment, I wake up each morning to 'discomfort' (although that isn't really a strong enough word to describe the agony), miserable that I have not died in my sleep. I suffer all the time. I'm not someone who tends to make a fuss about nothing - this really is that bad. I'm really sorry to complain... I just feel helpless and thought I would ask on the off chance that anyone here has any ideas that I haven't previously considered.

Again, I'm sorry to 'bump' this thread, but we are all feeling despairing and Rosie is determined to use her life's savings to fund a trip to a euthanasia clinic in Switzerland... So please, if anyone could direct us towards anything that might help, send me a message.

Thanks so much.


Mama1980 Thu 06-Feb-14 12:51:20

Have sent you a pm. ( probably useless but maybe worth a shot?)

Matildathecat Thu 06-Feb-14 15:09:25

Dear Rosie,

I'm so sorry you are having such a hideous time. I have no experience of this particular problem but I do have a chronic pain problem. Please do not give up hope. Many things can help even if you are not cured ( and you may well be).

You don't mention what pain medication you are taking. If you haven't been to a specialist pain clinic please insist on a referral. I found a pain management course really helpful and am doing things I didn't believe possible, not through any drugs or treatments, just a decision to do it anyway. We learned Mindfulness which helps, too.

I still have pain. Sometimes it overwhelms me but I treat it like an angry lion. We have to live together. It's better that we get along. I need to keep a close eye on him but overall we manage.

My life is better than ok, it's good. Spend your savings on good things: hot stone massage, champagne, a consultation with a top pain specialist.

I have felt despair. It passed. It's not the life I thought it would be but it's pretty good.

Don't go to Switzerland.xx

rugbychick1969 Thu 06-Feb-14 15:12:56

Am in a similar situation with cystitis symptoms since beginning of December although I think mine is associated with some sort of prolapse although GP thinks otherwise!

I have been taking D-Mannose powder on and off and it seems to be helping only downside is the windy tummy feeling but that could be just me?


VivaLeBeaver Thu 06-Feb-14 15:22:07

I have it. I take a low dose of trimethropin every night. If I miss a cople of doses the symptoms come back but with it I've been fine for past few years. So apart from paying £7.80 a month or whatever it is now everything is good.

Sunnydaisy Thu 06-Feb-14 18:35:19

I can fully sympathise with Rosie. I have had the same problem for the last 10 months and it really is very debilitating at times.

Mine started just at the time we were going through fertility treatment and whilst all the tests done by gp were coming back normal, the clinic where we were having treatment cultured bacteria - if a sample is normal on a dip test with no white blood cells present then the nhs won't try and culture anything because it's unusual to have any infection present.

I was prescribed antibiotics but I don't think the course was long enough as it didn't really seem to knock the infection on the head.

Since that time I've been back and forth to my gp and each time I've thought I've had an infection, the dip test has been clear - I'm not convinced. When it hasn't felt like a full blown infection I still need the toilet most of the time and have horrible bladder pain.

I'm now under the care of a lovely urologist and am having a cytoscopy next week. She thinks I either have IC or an infection deep in the lining of the bladder. I started taking a low level dose of antibiotics (one that was sensitive to the original infection) and I have to say I feel so much better. Whether that's because they are reducing inflammation or dealing with a lingering infection who knows.

Did your daughter have a cytoscopy and if so, did the biopsy show anything?

It is such a horrible thing to have. I'm so tired from all the nightly trips to the bathroom and fed up with the discomfort during the day.

Rosie has to stay hopeful that this will be resolved or at least managed so that she can enjoy life again. It's worth getting a second opinion from another urologist if you're not convinced with what you've been told to date.

Sending you both lots of hope.

carolineinthegarden Fri 07-Feb-14 09:43:58

Thank you so much, everyone, for your kind words. Rosie has read all your messages and really appreciates them.

Matildathecat - I am so sorry to hear that you are suffering, but impressed that you have learnt to cope. Rosie does not have pain as such, just an agonising urge to urinate all the time. She finds this incredibly frustrating as there are no meds she can take for it. Thank you so much for your message... Just a few words really can make so much difference.

rugbychick1969 - thanks for suggesting D-Mannose. Rosie actually tried this back in November, and it does sound like a brilliant product. However, since we learnt that Rosie does not have a bacterial infection, she has stopped taking it. I do think it sounds like a brilliant way to get rid of bacterial cystitis, though, so I really, really hope it works for you. Other things I've read are good for getting rid of bacteria are uva ursi tincture, cantharis and pulsatilla (homeopathic remedies). Best of luck with it all.

VivaLeBeaver - that's really interesting. Do you think your IC is caused by bacteria? Have urine samples tested positive for bacteria? Rosie seemed to feel worse while taking antibiotics (they often made her sick), but we are keen to investigate the possibility that IC is caused by a long term, low grade infection.

Sunnydaisy - My heart goes out to you. Thank you so much for the lovely message. In Rosie's words, "It's nice to feel that I'm not completely alone". GOOD LUCK with the cystoscopy - I would be really interested to know how it goes. Rosie has not yet had a cystoscopy - she was seeing a couple of 'alternative' practitioners who told her it would make her worse. Her urologist also said the only thing he would offer her after the cystoscopy was a series of bladder instillations... Which, again, she was worried might make her worse. I think you're right - maybe we do need to consult another urologist. The cystoscopy is still very much on the cards for the future, but we wanted to give her body a bit of time to stabilise first (her white blood cell count is low and her emotional state is all over the place). Rosie says "I am keeping my fingers and toes crossed for you that the cystoscopy goes well and that you manage to get to the bottom of this horrible condition".

Thank you all so much again thanks

VivaLeBeaver Fri 07-Feb-14 18:40:23

The depth of knowledge from these guys is amazing. Join the group and ask for advice. They're in contact with a professor in London who specialises in IC and has all sorts of theories.

VivaLeBeaver Fri 07-Feb-14 18:41:29

The general thought seems to be that for a lot of people it is bacteria. I think mine probably is, just don't know which bacteria. The abx I'm on are enough to suppress the symptoms but not enough to kill the bacteria.

Fairylea Fri 07-Feb-14 18:50:32

Please, please, please go back to your gp and get referred to another urologist and have the tests they recommend. I say that as someone who (as per previous posts) has serious long standing kidney problems and cystitis that I take long term antibiotics for (and they do not always need to be for bacterial infections, even if there is no bacteria present they can help prevent any bacteria creeping in and can make her feel more comfortable just by changing the acidity of the urine).

Be extremely careful consulting alternative practitioners. I really mean that. Before I was treated at the hospital I went down the vega machine route, gluten free route, coeliac investigations and homeopathy. They all said various things. Nothing they gave me made any real difference.

Also perhaps your dd would benefit from being on a low dose of antidepressant? I'm not saying that to be patronising, I know how desperate she must feel, but antidepressants slow the physiology of the body down and tends to help with urinary and ibs symptoms. My dh takes one for ibs alone.

You must keep pushing the nhs for help. They can be reluctant to help at first but once you are in the system having all the tests they can be very good.

carolineinthegarden Sun 09-Feb-14 12:32:27

VivaLeBeaver - Rosie has joined the group and asked me to thank you so much for the link. It sounds very informative and useful, and we are going to try and get her a referral to a doctor who can grow a broth culture asap. THANK YOU.

Fairylea - thanks so much for the info. We are definitely going to ask for a referral to another urologist (or even a urogynecologist), but Rosie does not want to have any invasive procedures yet if not essential. But it will definitely be good to get a second opinion - I've heard some urologists can diagnose IC based on symptoms alone, without the dreaded cystoscopy. I've read in a couple of places that antidepressants can help, and would definitely consider this if it was what a GP/urologist thought was best. We are, of course, taking everything we hear from the 'alternative' medical community with a large spoonful of salt! Rosie is considering having several tests for candida, including a blood test, to see if they corroborate, as no one test/practitioner can be totally trusted. Anyway, thank you again, you have been so helpful.

DrinaDancesInParis Sun 09-Feb-14 14:32:38

I am sorry you are so miserable, Rosie.

Has your doctor tested you for chlamydia? It has almost identical symptoms. They should have screened you for it when you first presented with these problems, but thought I would ask just in case. It turns out I had it when my symptoms were at their worst. It is very easy to treat. I still get occasional flare ups, but nothing like before.

Even though you have already tried D Mannose, I would also suggest getting in touch with Sweet Cures as they are real experts and committed to helping women in your situation.

Best of luck.

carolineinthegarden Sun 09-Feb-14 15:49:34

DrinaDancesInParis - yes I have had a full STI screening as recommended by my urologist... If you'd told me a few months ago that I'd be praying I had chlamydia, I'd never have believed you, but I was! Sadly I tested negative for all STIs. Thank you so much for suggesting it, though, and I'm so glad you're feeling better now. I have 'liked' the Sweet Cures page on Facebook and will keep an eye on it as I really do think D-Mannose sounds like a fantastic product, but seeing as I do not seem to have an e-coli infection at the moment I'm not sure it's for me right now... But thank you, thank you, thank you for your help. Rosie xx

VivaLeBeaver Sun 09-Feb-14 17:59:02

I'm glad she's found the FB group helpful. I keep meaning to do something about asking for a referral but I'm so busy at work I don't have the time to go to London and as the abx are helping I'm just not bothered at the moment.

VivaLeBeaver Sun 09-Feb-14 18:00:21

I didn't find the d-mannose helped. I think looking at diet to some extent might help. A lot of people report worse symptoms when drinking tea and coffee and I've noticed I'm worse if I have a lot of tea.

Drink loads of water Rosie and good luck!

carolineinthegarden Sun 09-Feb-14 21:20:43

Thank you, everyone, I feel a lot calmer now than I did a few days ago. I'm researching the bacteria theory alongside candida and the affect of hormones. I'm on a super strict diet (no caffeine, alcohol, sugar, carbohydrates, dairy, gluten, but lots of organic green vegetables) and am sure you're right about caffeine being bad for bladders, VivaLeBeaver! "Fun" fact - I also read that green tea actually contains caffeine (was drinking that for a while which was probably not helping). Anyway, thank you and good luck to all of you. Rosie xx

carolineinthegarden Wed 26-Feb-14 12:27:39

Hi everyone
Just updating this thread to keep things fresh. My daughter, Rosie, is still pretty much the same, although sometimes she does have better days. She is keeping a chart and rates her symptoms according to how she is feeling, and perhaps this month is slightly better than last. But she says it's difficult to know as she forgets exactly what it was like to start with.
On a scale of 0-10, with 10 being the worst, she is generally around a 6. She still has the urgency, but not the pain thank goodness (she never had this symptom). So far this month perhaps her symptoms are averaging around a 5. If only we could all understand what's going on, it would be easier to bear.
Rosie is sticking rigidly to the anti-Candida diet together with anti-bacterial and anti-fungal meds plus probiotics. She is heartened by contacts made on the FB group and is hoping for a referral to the London specialist in the future - although she doesn't want to abandon her current treatment and one conflicts completely against the other.
If only we could all look into the future and see whether we are on the right track, life would be easier. So if any of you have a crystal ball, perhaps we could share it.
I read recently that parents are only as happy as their unhappiest child and I feel this is so true...

Orangeanddemons Wed 26-Feb-14 12:36:42

I had this for 2 years. I had repeated attacks of cystitis that became harder and harder to shift, until eventually it never went at all.

I had a bladder stretch, and was put on Elmiron. Neither of which did anything.

I tried homeopathy, accupuncture, herbalism everything, and nothing worked.

I then decided to have one last go to get rid with reflexology. Unbelievably this worked. 6 sessions and it was gone, after 2 years of misery

carolineinthegarden Wed 26-Feb-14 13:43:42

Orangeanddemons - WOW! I'm so pleased you found something that worked for you. Did you see a reflexologist who specialised in IC? (Is there such a thing?!) And do you have any idea how reflexology helps the bladder?

Orangeanddemons Wed 26-Feb-14 15:28:51

No, I have no idea how it helped, and no she wasn't a specialist. Whenever she touched the bit on my foot relating to the bladder I squealed in pain.

She was in Yorkshire if you are anywhere near...

Orangeanddemons Wed 26-Feb-14 15:29:20

I was also very cynical about the whole thing, but it did the trick.

helzapoppin2 Wed 26-Feb-14 18:03:52

Just to throw another idea into the pot, I went on a weekend to Belgium with a bad case of cystitis. Saw a pharmacist who asked what I had been prescribed (trimethoprim), and said "This is what we use" and handed me a pack called Monuril, also known as fosfomycin. It did the trick, has to be made into a drink and taken last thing at night so it can work on the bladder.
It is available in the UK, but might have to be ordered in from a hospital pharmacy. It seems well tested and tolerated.

carolineinthegarden Thu 27-Feb-14 09:10:34

Thanks Orangeanddemons, I'm so glad it helped you.

helzapoppin2 - am I right in thinking Monuril is another type of antibiotic? Very interesting as Trimethoprim seems to be ineffective for so many people these days. Not sure it would help Rosie as she doesn't seem to have a standard bacterial infection, but definitely something to bare in mind... Thank you.

To anyone that might be reading this thread in a similar situation, we have recently (spurred on by the brilliant Facebook book recommended by VivaLeBeaver) been investigating the theory that IC is an ongoing bacterial infection, but with the bacteria hidden in a biofilm so inaccessible by normal doses of antibiotics. There are currently two doctors in the UK who treat with long term antibiotics according to this theory, and lots of people on the group seem to have had great success. If anyone wants more information on this, feel free to PM me.

Cocolepew Thu 27-Feb-14 09:31:52

Does your DD have any signs of an autoimmune disease? You mentioned Raynaurds and IBS. Does she have any joint pain, hair loss, fatigue, weight gain or loss?

helzapoppin2 Thu 27-Feb-14 14:39:01

Caroline, my problem, thanks to the Belgian pharmacist, was nowhere near as long standing, but I was also told by the doctor there was no bacterial infection.
I threw in the suggestion as something else to try, yes, it's a broad spectrum antibiotic. I was flat out for a day after taking it, but it cleared up the problem, whereas I was on my second course of trimethoprim which wasn't doing anything.
Good luck to your daughter. It must be awful for her!

textbook Thu 27-Feb-14 15:15:02

I have had something very like Rosie for the last 3 years. It is hell. I was discharged from urology while pregnant last year, but had a cystoscopy and biopsy done around 2 years ago, with normal results. I've tried vesicare and toviaz, neither of which did any good, but I've controlled around 80% of my symptoms by taking 20mg of amitriptiline daily. I had pain as well as frequency, but it eases both. Might be worth a try - I started on 5mg a day and gradually increased as it gave me terrible headaches on 10mg initially.

I've asked to join the Facebook group, so thanks to the person who posted the link thanks

Hope you find something that works for you soon.

carolineinthegarden Fri 28-Feb-14 08:26:59

Cocolepew - she does feel tired all the time, but doesn't have any other signs of autoimmune. Some people think IC is an autoimmune disease in itself... No idea what to believe to be honest!

helzapoppin2 - thanks for the clarification. Rosie took several other broad spectrum antibiotics (as well as the standard ones like Trimethoprim) back when this started in November, and they seemed to make her worse, if anything! I think it's incredibly different for each person. Will definitely add fosfomycin to the list of things to try, though... Thank you, and I'm so glad you managed to get your problem under control so early on smile

textbook - so sorry to hear you have been suffering too. Many people seem to have had success with amitriptyline, so it is high on our list of things to try. Rosie is just reluctant to try the 'standard' medicines that aim only to cover up symptoms at the moment, as that means accepting that this is something she will have to deal with for the rest of her life. Really hope you find the Facebook group interesting - I know Rosie has benefited hugely from it, as there are so many positive stories on there. I think they have a waiting list of about 30 at the moment, so don't be surprised if it takes a while for your request to be approved. Please let me know how you get on!

Massive thanks to everyone for replying thanks

Cocolepew Fri 28-Feb-14 12:11:50

I was asking because I have Raynaurds and bowel and bladder problems due to Lupus. IC in Lupus patients used to be called Lupus Bladder or Lupus IC, so you might be right about it being an auto immune disease on its own.

I hope your DD gets an answer soon flowers

cardamomginger Fri 28-Feb-14 13:15:33

Could well be, coco.

I'm seeing an immunologist after approaching 3 years of pretty much constant hospital strength abx failed to clear up my bladder infection. He says that there's a group of patients who have things like IBS, allergies and intolerances, Raynauds, other connective tissue diseases, hypermobility, pelvic organ prolapse and hard to shift UTIs (I tick most of these boxes!). Seems that, at least in respect of the UTIs (and some of the other stuff) there is a distinct autoimmune element playing a part.

He's put me on new meds, and I feel SO much better. I've been off the abx for about 5-6 weeks now, and so far no flare up. Usually I'd be ill within 2-3 weeks of stopping them. Hopeful that he is on the right track and that I'm finally getting shot of this thing.

As an interesting aside, I usually get every single cough and cold going each winter. This year, I've not been ill once. Could be a coincidence, but perhaps my immune system is finally working properly.

carolineinthegarden Sun 02-Mar-14 12:44:47

Thanks Cocolepew, that's really interesting. I didn't realise there was a recognised link between Lupus and IC - that's a good thing in many ways, as one of the failings of conventional medicine is that problems like IC are generally treated separately, and not as a part of a wider condition.

cardamomginger - so glad you've found some relief. What are the new meds your doctor has put you on? Really hope you're still feeling good! Thanks so much for taking the time to share your experiences.

ClaraFox Sun 02-Mar-14 13:05:45

I'm not sure that I can be much help but anything is worth a shot isn't it?

I'm 42 now but between the ages of 15 and 21 ish I suffered with this. It started with an attack of cystitis at 15 ( although I had no idea at the time that that was what it was! ) and it quickly became something that I suffered from almost constantly. I can still remember an attack coming on when I was a mile from home and I was literally unable to walk. I lived with constant discomfort, pain, the urge to go ALL THE TIME and it was just miserable.

It eventually just ...went. Since being pregnant at the age of 26, I've never had another attack.

Anyway... What helped me ..

A book by an author called Angela Kilmartin. Now, this is an old book but I religiously followed what she suggested and it did help. Check out whether her books are still available - she really is a wealth of knowledge on this subject.

Washing with cool water after the toilet and never using any soap etc. ensuring clothes are washed in the purest non bio . Using own towels.

Bicarbonate of soda in room temperature water

No alcohol ever

Regular antibiotics. I know you've probably heard enough of that though!

Oh and do check out the Zoe harcombe way of eating. Read her book. You might find it useful.

Sorry I can't be of more help and I'm not able to offer any advice about medical procedures but I've posted on the basis of any little bit of help might just provide a little bit of relief.

Cocolepew Sun 02-Mar-14 13:08:52

Your're welcome.
Thats interesting cardmonger, I have had allergies, intolerances, IBS, endometriosis, UTIs, adrenal fatigue and pelvic organ collapse. I still have terrible problems with my bladder., even after a hysterectomy and a bladder repair.

Unfortunately stress plays a big part of auto immune disease, but if you are in pain you are naturally going to be stressed. Its a vicious circle .

Cocolepew Sun 02-Mar-14 13:09:51

Sorry! Cardamomginger blush

cardamomginger Sun 02-Mar-14 13:11:52

If there is an immune system problem it very much depends on which bits of the system are screwed up. In my case I needed a pneumovax vaccine, and am on sodium cromoglicate and ceterizine. Things things are usually multifactorial and encompass both autoimmune responses and an inadequate immune response to infection.

cardamomginger Sun 02-Mar-14 13:14:01

Coco - if you are in London or Oxford I can recommend my immunologist. He's really clued up. Got all excited in a geeky way when I was going through my history and symptoms, because he recognised me as being one of 'those'.

Cocolepew Sun 02-Mar-14 13:18:55

Im in Northern Ireland, thanks anyway smile.
I see an rheumatoloist and have a very good 'alternative' practioner.

carolineinthegarden Mon 03-Mar-14 23:00:55

Thanks for that information. Amazing that it just went away after 6 years. I have heard of Angela Kilmartin and will have a look to see if her books are still available.
I've not heard of Zoe Harcombe - will look at that too - although I imagine it might be similar to the strict diet that Rosie is on already.
It's encouraging that yours didn't progress into anything worse - it seems that so many people develop auto-immune-type things later on. Perhaps if you manage to treat the problem early enough in an appropriate way - maybe through diet and other anti-bacterial controls -it doesn't end up undermining your immune system and leave you open to an ongoing catalogue of health problems.

It sounds as if you have had to endure an awful lot of problems. Poor you. I just feel that all these things must surely be related? If the body's immune system is compromised for any reason (Candida?) it stands to reason that one thing leads to another - or does it? It seems short-sighted of the medical profession to treat everything as an entirely separate issue. But perhaps I'm being too simplistic...

Really interested to hear about your immunologist. If you don't mind I will PM you for details (we are accessible to London). Rosie saw a different GP today as she has come home from uni. for a couple of weeks. She is having another blood test to see if her white blood cell count is still low - also asking for homones to be tested for imblance - also Vitamin D, as we have read that all these can play a part in the bladder problem. The GP said that if the WBC count continues to fall, she will be referred to an immunologist.

Interestingly, the GP said it could be urethritis, which could be an oestrogen deficiency thing. So at least it gives Rosie some other avenues to think about - each little clue gives us a bit of hope. She has also asked to be referred to the London specialist who looks into the biofilm possibility.

Anyone got any experience of urethritis?

Thanks to you all.

Cocolepew Mon 03-Mar-14 23:09:09

Yes I think all my problems are related, going back years. I took IBS after a very bad bout of gastroenteritis. I had chronic fatigue and was intolerant to wheat and sugar. Anything I craved ended up giving me fatigue and thrush.
Ive had problms with my hormones from the day I started my period.
I think all these problems over the years have ended up as Lupus, my body cant figure out whats good and whats bad!

Cocolepew Mon 03-Mar-14 23:15:59

If you google magnesium deficiency and magnesium deficiency and the bladder, it shows that bladder and urinary tract problems include bladder spasms, problems emptying or holding on.
If she thought it might help your DD should take about 500mg for about 4-6 weeks and then 200-250mg after that, but continue to take it.

carolineinthegarden Thu 06-Mar-14 22:10:11

Thank you Cocolepew. She did Google magnesium deficiency and it was interesting. There are so many things she could try, she just doesn't want to try everything at once as it might be a recipe for disaster.
It's definitely 'on the list' now. It's a long list.
Thanks again.

carolineinthegarden Mon 31-Mar-14 01:02:24

Just an update for anyone who might be following this thread: Rosie does seem to be seeing some sort of pattern emerging which appears to relate to her monthly cycle, which leads us to believe that hormones must play an important part in this illness.
She generally seems to experience better days just after her period has started, then there are a few spikes during the month and it gets worse on the lead-up to her next period. She is keeping a diary of symptoms, which are pretty much the same as back in November/December: urinary urgency but no pain. Fortunately, so far anyway, her symptoms have not got any worse. She feels a lot more healthy in a bodily sense, since she's been on the anti-Candida and IC diet (no sugar/wheat/dairy/very few carbs). So maybe this, together with the herbal meds, fish oil, probiotics etc. might eventually enable her immune system to start working and perhaps help her heal.
Does anyone know of a good endocrinologist who specialises in urinary/bladder/IC problems who might be able to balance her hormones?
Thanks to you all, always interested to hear any related experiences.

Mrsbaconandbeans Mon 31-Mar-14 11:23:46

Don't know if this has been mentioned in the thread but after two years of suffering from interstitial cystitis a was prescribed antihistamine . Symptoms
Went apparently something to do with dampening down the immune response . May be worth a try as you can buy them over the counter? Check with pharmacist if they are suitable
For you

carolineinthegarden Tue 01-Apr-14 11:19:28

Thank you Mrsbaconandbeans. It sounds almost too simple, so definitely worth a try. Which type did you take?

nataliekitch Fri 18-Apr-14 10:34:24

Hi carolineinthegarden, I'm so sorry your daughter feels like this. I hope she gets better soon.

Two things I would suggest which helped me immensely:

Multigyn: there could be a ph imbalance down there which has weakened her immune response. This is a gel which you apply topically and it repairs the damaged flora which is so important for fighting bacteria.

Stopping the pill: you mentioned this may be hormonal. Is she on the contraceptive pill? If so, I would recomend stopping it. Many women stop having the pill to try and conceive and find that their utis stop. Hormones and the bodies defences are very interlinked. Just a little research would show this. Stop it for 3 months and see what happens

All the very best

carolineinthegarden Fri 18-Apr-14 19:47:00

Thank you, nataliekitch, for your really helpful comment. I will definitely investigate the multigyn gel - Rosie is taking probiotics to rebalance the flora of her gut, so this could be very relevant. We are certain the contraceptive pill is partly to blame for this mess as Rosie's symptoms began within a month of starting to take it, so interesting to hear of others coming to the same conclusion. However, she stopped taking it 5 months ago and hasn't miraculously recovered - so obviously it can't be entirely hormonal! Thanks again. Xx

Tranquilitybaby Sun 20-Apr-14 20:21:00

I have IC and when it flares up for a long period, I follow the IC diet until it calms down.

I find tea, coffee (especially decaf so don't assume it's just the caffeine, it's the acidity), citrus foods and drinks, sometimes chocolate, alcohol, coke, lemonade, most dizzy drinks in fact. Cranberry is like acid to my bladder.

Apple juice is soothing for me, lots of water and camomile tea.

Ibuprofen for the pain can also irritate the liking of the bladder too.

I now have prolonged period of being fine, no pain, no urgency so hopefully things will improve.

Tranquilitybaby Sun 20-Apr-14 20:37:57


Sunshinenow Sun 20-Apr-14 20:48:52

My bladder was chronically inflamed. Awful

My urologist sorted bladder instillations. Once- week for 6 weeks, then every month for the past two years.

An amazing difference. I hint worth exploring

carolineinthegarden Fri 25-Apr-14 23:40:00

So glad you are now pain free, Tranquilitybaby, and long may it continue! Sadly, following the IC diet doesn't seem to help Rosie, but I am very glad it works for you. Cammomile tea is very calming!

Sunshinenow - that's so interesting as I have never heard any positive stories about bladder instillations, although they were among the first things the urologist recommended. You don't often hear from people who were helped by these first line treatments, as the Internet forums tend to be filled with those who are still suffering. So thanks for the insight.

Rosie is still pursuing natural treatments, but we have a list of things to try after her current treatment plan of herbs and a very strict diet, and every suggestion that has been made on this thread has been added to that list.

Thank you smile

nataliekitch Thu 29-May-14 00:18:49

Hi Caroline -- please try this if you havent
-- a vaginal ph test is very neccessary as if this
is even 1 ph higher it can cause discomfort similar to cystisis symptoms ! Antibiotics kill all good bacteria which is necessary tonmaintain the optimal ph of 4.5. Once this is surpassed ,
the bad bacteria can thrive and hence the discomfort. There are many treatments over the counter for abnormal ph. Including multi gyn which I mentioned. She should wash frequently and apply ccopious amounts. This was the case with me and I ddidnt see a drastic difference with multigyn until I did a ph test and after a lot of persistence I have to say I am so much better.
you can buy a set off amazon easily and there's litmus paper swabs which show this. Please try if you haven't. Gynaecological perspective is just as. Important as the urological when it comes to things like this. All the very best

nataliekitch Thu 29-May-14 00:24:07

My urologist , which insurance paid around a grand
for , and tons of gps , never even suggested this.
I had a cystoscopy and they found nothing wrong with my bladder and then they gave me drugs
for over active bladder !! I just knew that wasn't the case. There really needs to be more research on this. Its shameful and the attitude of some specialists is shameful.i recieved à poor temper
and many arrogant objections. Dont lose faith! They wwre definite it was mmy bladder but it had nothing to do with it

LittlePeasMummy1 Thu 29-May-14 10:50:41

Hello, I have had IC for 7 yrs. Mine is a definite diagnosis as I have had a cystoscopy and bladder biopsies. Its conventional medicine all the way for me I'm afraid..the only 'alternative' route I would consider would be to manage stress because this and anxiety play a big role in IC.
There is a definite link to the menstrual cycle..I think that all women experience this to some degree but if the bladder is inflamed as in IC, the peaks and troughs are more noticable. My symptoms are very cyclical, I really suffer around the time of ovulation and just before my period, and my best few days tend to be just after my period has started, with the rest of the month somewhere in between depending on what else I have been doing. I also suspect there is a candida link, I have always been prone to thrush and I notice that when I treat with fluconazole it settles for a bit. I am going to discuss this with my lovely and very sympathetic urologist at my next appt, and if he agrees, will try a longer course of fluconazole. I'm not sure how much evidence there is that an 'anti candida' diet actually works, although cutting down on sugar is sensible. I have also had bladder instillations with Cystistat (didn't do much for me but can help some) and another medicine called 'Iluaril' which seems to work a bit better. I cannot tolerate any alcohol at all now as it results in miserable cystitis for days afterwards. NSAIDs and multivitamin supplements also trigger a flare (common according to my urologist), as do citrus fruits and possibly tomatoes. I'm sure other things in my diet irritate my bladder but I've never actually worked out what they are, although in the past have suspected fairly random things like red cabbage and beetroot. If things are very bad, I get some relief from a very unhealthy 'brown food' diet that consists mainly of toast. Its not the best!
I really feel for your daughter, I was 30 when mine started and that was bad enough. I hope the information above is useful to help her pinpoint what is going on and what some of her triggers might be. There are various medicines that can be given, and what I would say is that my symptoms started like hers (mega urgency)- which I did a great job of ignoring for a long time and then even when I got help, I resisted treatment because I was having IVF and I though it might hold that up. In the meantime my symptoms got somewhat worse and I now also have frequency and pain . I'm not saying that it is a progressive illness in everyone, but I think that the sooner she can get a concrete diagnosis the better. The bladder insillations work really well for some people, so as the first course of action are probably well worth a try. Also, I can see why she might be unkeen to go down this route, but if the symptoms are hormone-related then an oral contraceptive may be helpful.
Good luck Rosie, you have all my sympathy.

LittlePeasMummy1 Thu 29-May-14 11:40:11

Just one last thing..I have always found that although the IC support groups on the web are very well meaning , they can also be very scary as the people who post are a sort of 'self-selecting' group, often with very extreme symptoms and horror stories, as well (often) as health anxiety- therefore you can get a very skewed idea of how bad things are for most people and also whether a paticular treatment is likely to work.

Oh and finally, I have found that drinking marshmallow root infusions help me a bit. I can tolerate any other type of tea, herbal or otherwise, Chamomile makes me pee for England!!

carolineinthegarden Thu 29-May-14 14:00:54

Hi everyone, Rosie here smile

Firstly I just wanted to thank everyone who's commented - this has been seriously tough for me and I need all the help/advice I can get, so thank you for your time and kind words.

I'm still being treated by a herbalist in London at the moment - her name is Deborah Grant and she specialises in treating 'IC'. There are times when I think this treatment is working - I had a whole month when the constant feeling of needing to wee lessened from 6/10 to 3/10 - but overall I'm still feeling doubtful about my chances of ever being able to live a normal life. I'm considering asking for a referral to Professor James Malone-Lee, also based in London, who believes that 'IC' is a biofilm infection so treats with long-term, high-dose antibiotics. If anyone has any experience with either expert, please get in touch!

I'm very interested in what you have to say, nataliekitch, as I've researched BV a bit and wondered if it could have something to do with my condition. I've just ordered some vaginal pH testing strips from Amazon, and if they indicate a problem, I'll definitely ask my doctor about treating for BV. I'm so glad you found the answer for your problems eventually.

I agree that the attitude of some urologists is abysmal. I've just got off the phone with my boyfriend, and we both ended up crying in frustration/despair about how no one takes bladder problems seriously enough - maybe it's because they don't tend to be life-threatening, and largely affect women. The lack of research (and concern!) astounds me. I feel like 'IC' has well and truly ruined my life, and yet is regarded as a 'trivial' problem by the majority of the medical community.

Hi, LittlePeasMummy1, I'm so sorry you've been suffering for so long. I've done loads of research about the role hormones play in 'IC', and it seems that progesterone can cause/increase urinary frequency. Like you, my symptoms are generally worse when my oestrogen levels are low. Some people believe that this is because bacteria thrive in a low-oestrogen environment, and use it as evidence that 'IC' is really a biofilm infection. I'm not quite sure what I believe yet, but I definitely think that hormones play a part, because my problems all started after taking oral contraceptives. Within a month of starting the combined pill (Rigevidon) I got my first ever UTI, and within another month, I'd developed 'IC'. I'm off the pills now and would never touch them again, but sadly, I don't think the damage can be undone so easily.

I strongly believe that a healthy diet (whether anti-candida or not!) gives us the best chance of recovery (if there is a chance at all). I haven't had any sugar, carbohydrates, gluten, dairy, alcohol or caffeine for 6 months now, and I do feel healthier overall. As you said, LittlePeasMummy1, the link between food and bladder health seems random and unpredictable, but I'm persevering with the diet in the desperate hope that it will help.

I'm still reluctant to try the scary, conventional treatments - as far as I'm concerned, the fewer drugs, the better. I figure that anything that has side effects such as making your hair fall out can't be good for you! However, when I've given up on finding a 'cure', I will happily take all the drugs the doctors throw at me to cover up the symptoms, in the hope that I can get some quality of life back.

You're so right about the IC support groups being scary. That was why mum and I decided to post on here - COB and the ICN are full of people who've been suffering for years, whereas Mumsnet seemed to give a less biased sample!

Anyway, thanks again, everyone, and I'm sorry for the essay. I find it quite hard to convey how I'm feeling - I don't think they've invented words yet that adequately describe the despair and depression I've experienced throughout the last 7 months! I hope this has made some sort of sense, though - please feel free to contact me, via mum's account, if you've got any questions.

Wishing you all happiness and health,

Rosie xx

LittlePeasMummy1 Thu 29-May-14 14:39:44

Hi Rosie,

I'm so sorry for you. I know how horrible all of this is and how desperate you must feel. My perspective is slighly skewed as I am in a clinical job, and so I do not fear conventional medicine!! smile I have investigated the alternative route myself but i am completely unconvinced by anything on offer (apart from Marshmallow root tea-def worth a try-you buy the root and infuse it in hot water and drink). FWIW, I am also rather unconvinced by the biofilm theory. I am willing to stand corrected but I think that the larger statistically robust studies have shown little correlation between IC and evidence of bacteria in the bladder. However, I am fairly convinced that IC is not a single disease, more an umbrella term for a group of symptoms, which explains why not everyone has all of them. So a subset of IC patients may well have a bacterial infection as the route cause. Sadly though, I think for many people this may just be wishful thinking. My IC clears up completely when I take steroids but this is not a long term soloution- apparently this only works for about 50% of patients so further evidence for the 'not a single disease' hypothesis.

Did you know that the bladder instillations are not of a drug but of a natural susbstance- hyluronic acid. This coats the bladder wall and allows it to repair- it gives you a bit of respite from all of the irritiants that come through in your pee and contribute to the cycle of bladder inflammation. So while it is not technically a cure, in some people it can work very well to initiate the healing process. As for elmiron, yes, hair loss can be a side effect but I think that is much rarer than the forums might suggest. That said, I have never taken it either and will only do so if i feel i really need to.

The other thing that I would say, and I hope I'm not being presumptious here, but I see quite a lot of my personality in you. It is a great thing to be very focussed on trying to get your self well, but not so great if the illness becomes a major focus. I know because of the constant relentless nature of IC, it is impossible to carry on a normal life, but i do find that when I'm being super strict with my diet, keeping diaries etc, my symptoms are miles worse because it really is all I can think about. The single most important thing I think is to try and control your (by that I mean 'one's') stress levels because that is the worst thing for an IC bladder. I am currently considering going down the amitryptiline route, partly for that reason. I am a complete stress head!

Its an odd thing IC, because last night I was literally crawling round the house in agony. Right now I feel alright . In an hour, that may all have changed. It comes and goes like that, and while you feel okay its very easy to dish out cheeful advice and forget how bad things can get. However, its always good to know that someone else understands.

The other positive thing is that, as many have said on the thread, in a significant number of people, IC just remits as quickly as it appeared and they never get it again. Unfortunately, I don't seem to be one of those, but you might well be. I have everything crossed for you.

Good luck, and gentle hugs

LittlePeasMummy1 Thu 29-May-14 14:43:02

PS- re the hormones- I don't think its as simple as low oestrogen/high progesterone= symptoms

I always flare at ovulation- high oestrogen, low progesterone

I have also taken tonnes of fertility drugs which involved high oestrogen and progesterone and they were definitely not good for the old bladder!!

Also, high oestrogen encourages candida overgrowth so you really can't win

ozymandiusking Thu 29-May-14 14:46:11

I have suffered from interstitial cystitis for over 20 years, but have periods of remission. Your daughter has my sympathy.
But, do not despair it can and will get better.
Things to avoid, Pineapple, which have an enzyme that destroys protein. Bananas, acidic fruits, tangerines,oranges(,kiwi fruits Particularly bad)anything like these fruits. Don't drink any fruit juice.
Cut out caffinated tea and coffee, and switch to decaffinated yes you can get used to them.
Start taking a cranberry tablet, I take one frrom Healthspan. Cranberry juice is to acidic and upsets the bladder.
But the cranberry will help to stop bacteria from adhering to the bladder wall.
Don't wear tight clothing across the tummy.
Don't try to hold on too long before going to the loo.
I was told by my consultant that if there is no infection, there is nothing to be achieved by drinking pints of water, it just makes you want to pass urine more often.
Finally join the Cystits and Overactive Bladder Foundation, they are on line, and produce a quarterly magazine, very helpful.
I do hope some of this helps.

ozymandiusking Thu 29-May-14 14:53:06

Hi, sorry forgot to mention no to tomatoes.
I also take amitryptyline even now. it helps with the pain and aids sleep.

puggle01 Thu 29-May-14 14:57:11

Hi - please don't believe people who say they can diagnose IC without cystoscopy! Whilst one can make an educated guess based on symptoms, a cystoscopy is essential to exclude other causes (though rare in a young woman) such as bladder stones, bladder endometriosis, and rarer things such as TB etc.

carolineinthegarden Sat 31-May-14 10:59:41

Hi all, Rosie here again.

LittlePeasMummy1 - thanks for your long post. I have tried marshmallow root tea to no avail, but I'm really glad it helps you. Like you, I am sceptical about alternative practitioners who claim to be able to cure the incurable, but I'm willing to give anything a try! I would never rule out something that might help just because it doesn't fit with my particular belief system, so I intend to try everything on offer - conventional and alternative. I appreciate the advice about not letting 'IC' control my life, but I'm not sure how anyone could possibly concentrate on anything else with this all-consuming overwhelming urge to wee all the time! If you can ignore your symptoms and live a normal life, then you are a much stronger and better person than I smile let me know how you get on with amitryptiline, as this is something I'm very keen to try. Thanks again for all your advice.

ozymandiusking - sorry to hear you are suffering as well. I haven't had any fruit (other than 1 apple or pear a day) or caffeine in 6 months, and it doesn't seem to have made a blind bit of difference! I'm curious about the cranberry capsules - if IC isn't bacterial, how do they help exactly? I've joined COB and found their newsletters to be very interesting smile I'm pleased that amitryptiline is helping you - does it help with frequency/urgency, or is it just the pain it relieves? Hope you are coping okay and thanks for your help.

puggle01 - I haven't had a cystoscopy so haven't yet been officially diagnosed with IC. I had lots of other scans, though, to rule out bladder stones etc., which were all clear. I was never told that the cystoscopy could be used to rule out endometriosis or TB - how exactly does this work? I was told that the cystoscopy was merely to look for inflammation, alongside a biopsy to identify mast (?) cells. That's why I haven't had it yet - I was given the impression that all it would tell me was 'you have an inflamed bladder', which I already know!

Thanks, once again, for all your comments, it really does mean a lot. Hope everyone has a lovely weekend xx

LittlePeasMummy1 Sat 31-May-14 20:15:49

Hi Rosie. I've been thinking about you this weekend. I just wanted to double check that you are not taking a vitamin supplement? I can't tolerate them at all and neither can a lot of IC sufferers. Also, I'd be tempted to stop eating apples, just cut out for a few days and see if it makes any difference. I hardly ever eat them these days and suspect they may cause me a problem. Finally, I know that you don't get pain per se, but the constant urge to wee might be caused by your bladder nerves being over active, in a similar way to what happens with pain. The reason why I'm telling you this us that I've found that when my bladder feels particularly 'nervy' if I take a single tramadol, it seems to break the cycle of nerve over-stimulation and gives me a bit of respite for a while. You'd have to get these from your doctor and you can't use them all the time as they are very addictive. But as a strictly 'one off' treatment, ( I do this literally once every few weeks, and only take one which is a low dose) I've found that they can work very well. If you don't fancy that, codeine containing painkillers are the best over the counter drugs for this.

SarahMumsnet (MNHQ) Sat 31-May-14 20:29:29

Hey Rosie, hope you don't mind an MNHQer posting on here. I've been through precisely this, and am now entirely symptom-free. Do PM me if you'd like to chat; there is hope!

LittlePeasMummy1 Sat 31-May-14 21:07:02

Hello Sarah, I'd love to know how too please!

VivaLeBeaver Sat 31-May-14 21:13:05

Rosie, I'm going to see the Prof for the first time next week. Will post again after I've seen him and let you know how it goes.

LittlePeasMummy1 Sat 31-May-14 21:13:44

Ps Rosie, I really hope you didn't think I was being flippant by suggesting that you try not to make this the sole focus. I think your symptoms are a bit different to mine, in that I have good and bad hours most days and in the good ones I can get on with things. Yours sounds relentless and that must just be horrific

puggle01 Sat 31-May-14 21:53:18

Hi Caroline - the cystoscopy is the only way to check out the bladder wall - scans can't do that reliably. If someone has symptoms of urgency/pain etc the inner lining of the bladder wall needs to be inspected -it might look abnormal. A biopsy would then need to be performed to confirm the findings (as we don't have microscopic vision!) TB and endometriosis are rare sure though there are some other common conditions that are important to exclude- ~I'll not list them all as its probably not helpful and could cause you to worry. However, I have seen someone with classical IC type symptoms who's cysto + bladder biopsy showed schistosomiasis (a rare in the UK "tropical" infection though I'm not saying this is relevant to you) History alone is not enough!

VivaLeBeaver Sat 31-May-14 21:58:10

The professor says that cystoscopies for someone with these symptoms is unhelpful and pointless.

puggle01 Sun 01-Jun-14 09:22:10

Completely disagree with your professor! How can he/she exclude other conditions as mentioned including CIS?

puggle01 Sun 01-Jun-14 09:46:04

Amongst many other conditions ? (posted too soon)

carolineinthegarden Sun 01-Jun-14 09:54:29

Wow, I can't believe how many replies there are on here now - thank you all so much for taking the time to comment.

LittlePeasMummy1 - I hadn't been taking any vitamin supplements until very recently when my herbalist prescribed me Vitamin A, so, sadly, I can't blame this for my symptoms! I've tried my diet with and without apples, but it doesn't seem to make any difference - but thanks for the very sensible suggestion. I have tried medication for an overactive bladder but never tramadol - I will definitely look into this if I feel in desperate need of some short term relief. Please don't worry, I know that you meant well and am so grateful for all your help.

SarahMumsnet - of course I don't mind; the more the merrier! I've sent you a PM.

VivaLeBeaver - GOOD LUCK! I'm eagerly awaiting an update on your appointment with Professor Malone-Lee, who sounds like a wonderful, dedicated man. There isn't a smiley for 'keeping my fingers crossed', but that's what I'm doing smile

puggle01 - thanks for the information re: cystoscopy. I'm quite confused now, as every doctor's opinion seems very different. My urologist certainly didn't tell me the cystoscopy was necessary to rule out other conditions, just that he needed to have a look at the level of inflammation. I'm starting to believe that there is no wrong or right when it comes to IC because it's such a mysterious disease - maybe in a few hundred years time when they finally find the cause, we'll know whether a cystoscopy is necessary or just barbaric!

I know I'm repeating myself here but thank you all so much for your input. Love to all xxxx

LittlePeasMummy1 Sun 01-Jun-14 11:57:34

Just to also add, my urologist agreed with puggle, re the cystoscopy, that's why I went down that route. Also, if Hunners ulcers are found, they can be resected which apparently can lead to great symptomatic relief.

Nadinez9 Thu 05-Jun-14 14:39:17

Hi Rosie, I hope you don't mind me joining in with your thread. I am going through exactly the same as you and have read with interest everyone's responses which have all been very helpful. It is such a shame we have to try and solve this puzzle ourselves! I understand your concerns about the cystoscopy but also understand it is the only way of gaining a confirmed diagnose. My symptoms started in January and I had the procedure in March. I am not a great advert for it as I found the procedure extremely painful! They did diagnose me with IC but at a very early stage. Like you I don't have pain, just urgency and frequency. After the cystoscopy I unfortunately started to feel pain in my bladder which I feel was from stretching it. I am searching for alternative treatments to help with pain but also like you want to find out what has caused the inflammation in my bladder. I would be very keen to find out more about Prof James Malone Lee. There was a professor in America who helped many IC patients by doing urine broth tests which looks deeper into bacteria. He also believed IC starts from bacteria and yeast and by identifying specific bacteria he could then prescribe the correct antibiotic. I am sure you already know of the book "along the healing path" by Catherine M.Simone, she discusses this in her book.
You also may not have IC. A close friend suffered with all of your symptoms for over a year. The urologists couldn't find anything wrong with her so diagnosed her with IC. She went for a second opinion and was put on antibiotics for 3 months and has luckily never looked back. I hope this happens for you too.
So sorry for such a long message!!

VivaLeBeaver Thu 05-Jun-14 22:56:55

I had my appt with the Prof yesterday. I've been prescribed high dose antibiotics and have to go back in two months. Very thorough appt with loads of explanations of how the bacteria hide away iniside your bladder cells and don't get picked up often by lab tests. I was in my appt over half an hour.

I can ring or email them at any point with any new symptoms, questions or if I need a new prescription.

Prudence89 Sat 07-Jun-14 14:30:02

Hi Rosie
I do understand, I am now 47 have had this illness since I was 19. I was told it was all in my head by Gp etc. it is terrible that there is so little understanding. My flares would usually be brought on by a UTI then this would go and a flare would start. I have had many years of remission, currently in a bad flare now after uti and near period, which always makes it worse. I am hoping to see uro soon. Like you I have thought of assisted suicide in moments of desperation, this is no the answer, we deserve better. Hang in there xx

Slugpickeruper Sun 08-Jun-14 22:07:33

Hey Rosie

I have bladder problems too since I was 17. i am now 27. Mine started the same way as yours - with a minor UTI I woke up with one morning. I went into remission during pregnancy with my daughter and then afterwards only had 1 month flare when she was 2, then I had my son and suffered with recurrent vicious UTI which would not clear when pregnant with him. I was fine for years afterwards. Until 2012 when a bad UTI set it off again and I have now had 2 years of symptoms, the longest I have ever had.

I have not yet had a cystoscopy as sometimes my symptoms are quite mild, so I don't want to rock the boat. I would like to know what is going on in there though.

I have at times the constant urge to go and hyper-spasming bladder, burning pains, urethra pains.

I have found the GP and urologists pretty crap so far but then again I have not been assertive enough about the impact this has has on my life (I have been suicidal at points). So when I next see them in July I am not going to leave until they listen to me. I would be up for trying hydrodistention, ami, instills maybe (although I don't fancy them much), and even bladder removal I would consider (although I don't think they would do because my capacity is normal on scan).

I have found that taking cod liver oil and high dose kyolic garlic tablets helped a little.

I also drink kefir which is a strong natural probiotic. It does not seem to irritate my bladder even though it is on the "caution" list of the IC diet.

As for special diets, I have tried a few. I tried gluten free for a month and nothing changed so went back to normal. I tried a raw foods juicing diet and I felt constantly tired, hungry and all the juice flared my bladder. Now I am following the IC diet - I use the IC Network Diet Sheet and I eat all foods from the "safe" column and small amounts of some foods from the "try it" column but I NEVER touch any of the foods from the red list. It seems to help with the intensity of symptoms and burning but not so much with spasms and pains.

I am also interested in the thrush aspect as i constantly have thrush even though I have not taken antibiotics for 2 years, the hormone aspect because I have severe PCOS , and also the bacterial theory because it makes sense that an infection triggered it so maybe it is a "hiding" infection.

I hope you are OK as can be in the circs and that you post more about your experiences.

carolineinthegarden Mon 09-Jun-14 16:02:12

Hi everyone, sorry I haven't been very active on here - been having Internet problems. Anyway, thanks once again for all the replies smile

Nadinez9 - I'm so sorry you're going through this as well. I find it very worrying that your pain began after the cystoscopy - I think I'll definitely delay having the procedure for as long as I can, and only go down that route as a last resort. If you are interested in finding out more about Professor Malone-Lee, some of his findings are summarised here: Are you referring to Doctor Fugazzotto in America? I believe that he was the first one to investigate the bacteria connection, and helped lots of people right up to his death in 2008 (I think!). I absolutely loved reading Along the Healing Path - it was the first thing that really gave me hope after this nightmare began. Thank you so much for your post and your kind words, and please feel free to contact me if you ever need someone to talk to. Praying that you find some relief soon.

VivaLeBeaver - good luck on your antibiotics journey! Keep us updated on how you're getting on smile

Prudence89 - I'm shocked that you've been suffering for so long. This must have been so awful for you; I'm so sorry. Do you have any idea what sent you into remission? All I can really say is good luck, and please do keep posting. I hope your urologist can help you go back into remission asap.

Slugpickeruper - I'm so sorry you've been suffering for 10 whole years. You must be incredibly strong to have coped for so long - I feel like I'm losing my mind after just 8 months! I have to agree that conventional doctors/urologists have been pretty awful in my experience. I don't think that IC is taken very seriously, because it's not life-threatening... When in reality, it has an arguably equally devastating impact as some terminal illnesses. Good luck with your appointment in July. I think bladder removal is only considered as a last resort, but I, like you, would do it in a second if I was sure it would help. I'll keep my fingers crossed that something helps you before you get to that stage. If garlic tablets help you, you might want to investigate the possibility that you have a biofilm infection, as garlic has strong antibacterial properties. Then again, it's also meant to be a natural anti-fungal, so it could just be helping with the thrush side of things. Either way, I'm glad you've found some things that give you a bit of relief. The diet question is a tricky one - I think everyone's triggers are probably different. I'm happy following my elimination diet (no gluten, no dairy, no sugar, no carbohydrates, no caffeine, no alcohol, etc. etc.) for the time being, while I work out what my personal triggers might be, but I'm glad you seem to be okay eating a slightly more varied diet. From everything I've read, it seems like you need to try diets for a long time (months or years) before you know whether it's working or not. What a pain! Anyway, thank you so much for your lovely message and please do feel free to contact me if you need some support.

Lots of love to all,

Rosie xxxx

Vb911 Tue 08-Jul-14 17:52:36

Hey everyone!
Rosie I feel like I have absolutely the same thing as you do and hope u don't mind me writing��. I always used to get cystitis before and normally it was always after sex and antibiotics used to get rid of it pretty quick. Recently I started taking pill for the first time and after month I stopped and got cystitis (as usual) and it went away but after a month I got it again and got cefalexin which didn't work...well it got rid of bacteria and symptoms got better but never went away completely! I had so much antibiotic taken but non of it helped. It's like my worst nightmare and I felt so desperate. I have done sti checks and utrasound and everything was fine exept I had scar on my kidney( which was hurting recently) but I have never had problems with kidneys before. I read about IC and now terrified it won't ever go away!
However, I do believe this is something to do with stress..and taking the pill?!anyway I was wondering if it is worth doing the cystoscopy? And have you done it yet?
Feel so so sorry for everyone who is going through this...I only have it for a month and already about to climb up the wall! Wish everyone to get better!

carolineinthegarden Wed 09-Jul-14 09:20:34

Hi vb911, I'm glad you found my thread. I am so sorry that you are going through something similar - it's really awful, isn't it? I can't believe how many people suffer with problems like this, or how little doctors understand about our condition. Of course I don't mind your message - feel free to post, or to PM me, if you ever need to chat with someone who understands the thoughts and feelings you are having.

It's really interesting that your 'IC' (I am only using this label for want of a better term, not because I think you have an incurable bladder condition!) started after taking the pill, too. From what I've read I gather that the pill increases our chances of getting UTIs due to hormonal imbalances, but obviously what you and I are suffering with is a little more than a standard UTI. I know lots of people think that the pill, or other contraception such as the implant, was a factor in them developing 'IC', but I don't think a link has been scientifically proven... Yet. There are so many hidden dangers in the medicine we take that have not yet been fully explored - I used to think the pill was completely safe, but since I've been ill I've heard horrific stories about it. I'm not sure if you're still taking the pill or not, but if I were you I'd come off it!

I still haven't had a cystoscopy. In all honesty, I think it's a bit barbaric to shove a camera up into an already inflamed area, so only want to have it done once I have exhausted every other possibility. There are lots of doctors (my herbalist and Professor Malone-Lee included - more information about them should be listed in another post on this thread) who think that 'IC' can be treated, and even cured, without a cystoscopy. If you would like to have the cystoscopy done for your own peace of mind, that is entirely your own choice, but it seems to be about 50/50 as to whether it will help or make things worse.

Personally, what I think has happened to me - and to you - is that our infections have become biofilm infections, making them undetectable by normal culturing methods. This seems to be the only logical explanation as to why an infection could 'disappear', but leave behind a condition with identical symptoms. There are many theories about what causes 'IC' - candida, inflammation, leaky gut - and perhaps they all play a part, but the biofilm theory seems to fit best with my symptoms. There are people who have recovered from agonising cases of 'IC' with long-term antibiotic or herbal treatment. I am feeling 60/70% better some days, after 8 months of herbal treatment. Perhaps this is something you'd like to research further if you think the biofilm theory might apply to you.

One other thing I would recommend is reading Catherine Simone's book 'Along the Healing Path'. If nothing else, this helped me realise that even with a diagnosis of extremely severe 'IC' (a diagnosis which neither you nor I have got), recovery is possible. Catherine Simone suffered for a long time with truly debilitating symptoms, and she got better... So why shouldn't you or I?

(Sorry to keep using the 'IC' label, btw. I don't believe that you have 'IC', because I don't really believe that it exists - it's just a generic name for a lot of treatable bladder conditions that aren't yet widely recognised.)

Sorry that this post is so long, but I hope something I've mentioned will help you, or at least give you hope. Hoping and praying that you find some relief soon. Xxxx

Vb911 Fri 18-Jul-14 21:33:06

Hey Rosie! Thanks so much for your reply! It is so comforting to hear from someone who is going through a similar thing! And thanks so much for sharing your experience it helped to look at other possible ways of why this happened to us!
Something really weird happened to me recently as my symptoms went away during my period!( at least I managed to have few normal days!) I started to think it could be something to do with hormones! Will have to go back to doctors nowsad
However I really believe it could also be something to do with my my mum had kind of similar situation but she had constant pain in her stomach and problem with digesting for 2 years. She has lost so much weight and got really depressed but all doctors said she was 100% healthy..She started doing yoga and stoped stress get to her she cured her condition. Also I found that there is a condition that is very much like cystitis that could be caused by stress! One doctor from back home (I am originally from Russia) told me that. Maybe you can relate to that too.. once I feel something in my bladder I can't stop thinking about it and get so scared that only one thing I wanna do is sleep.
I don't think my symptoms get worse or better because of my diet...I ate no 'triggers' for a month and nothing changed! I started eating practically everything and nothing changed :/
Though once I think asparagus made it much worse?! I would never think it would that! But then read that you shouldn't eat it during cystitis...
Also r you going to herbalist in London? I'm currently strugling to find a good doctor! sad
Praying that this thing would leave us alone!

carolineinthegarden Wed 23-Jul-14 09:35:23

Hi again, Vb911 smile

It's interesting that your symptoms disappeared during your period, as my symptoms always improve around that time of the month. It would definitely be worth getting your hormones tested - I've heard that an oestrodial blood test is more reliable than the standard one a GP will offer.

Stress can definitely be a contributing factor as it weakens our immune system and makes us more susceptible to pretty much anything... I've tried doing a bit of yoga etc. and it didn't seem to help me much, but I'd be interested to hear how you get on!

Regarding the diet, I didn't seem to have any particular 'triggers' either. However, since I've started eating really healthily and cutting out any potential triggers (gluten, sugar, simple carbohydrates, cow's dairy etc.), I've noticed a very gradual improvement - it's been 8 months now and I'm feeling 60% better most of the time. I believe that eating healthily gives my body the best chance of recovery, regardless of whether foods directly affect the bladder or not... But that's just my opinion!

I eat asparagus regularly and haven't noticed any ill effects, although it does tend to make urine smelly, so it could easily impact on the bladder. Everyone is different, so perhaps it would be wise for you to steer clear of asparagus for a while, just in case.

Yes, my herbalist is called Deborah Grant and she operates from The Hale Clinic in London. Feel free to PM me if you want her details.

Once again, I am so sorry you are going through this and feel free to talk or rant to me anytime. Really hoping you find some relief soon - this is such a horrible condition and I wouldn't wish it on anyone.

Lots of love. Xxxx

Dunn1993 Fri 05-Sep-14 09:29:53

Hi carolineinthegarden,

I have the exact same symptoms and they started when I was 19 too. Its been a long battle but I finally got diagnosed last year with Fowler's Syndrome which is urine retention in women. Although I go to the toilet all the time and constantly feel like I need to go I only release 200ml of urine so the rest is stored in my bladder hence why I need to go all the time. Maybe it would be worth getting your daughter to do a bladder diary and seeing how much her intake and outtake is. I asked my consultant if it could be Fowler's Syndrome and he dismissed me however when I saw a specialist at UCLH in London under uro neurology thats when it was confirmed. Apparently it takes on average most patients 5 years to see her as they get dismissed by their GPS and other specialists. It would be worth having a look in too.

carolineinthegarden Sun 14-Sep-14 08:50:43

Hi Dunn1993,

Poor you. It must be awful suffering for so long, from such a young age. How are you able to manage or treat Fowler's Syndrome now you've finally got a diagnosis?

Rosie did have an ultrasound and do a voiding chart last December, which were both fine, but she feels she may have developed retention since then so probably a very good idea to do another bladder diary. Do you know if your problems started with an infection, or did Fowler's Syndrome just develop on its own?

Thanks very much for the info - I've never heard of Fowler's Syndrome before so your story is very interesting! Hope things have improved for you xx

Sunshinenow Sun 14-Sep-14 09:00:38

Hi Rosie

Tis me again, about the bladder instillations. worth trying, as they are not invasive (apart from have the stuff squirted in).

I can't tell ou how how bad mine of was. In my many cystoscopies the inside of my bladder looked like a bleeding moonscape. Had 32 confirmed infections in one year. Was incontinent from over active bladder. Horrible, horrible, horrible.

I will never know if it calmed down itself, or cystistat worked. But worth a try, I had no confidence at all, I just did I'd as my consultant urologist was all out of ideas. Here at leeds, not a moracle cure, but some reasonable results for some people.

Sunshinenow Sun 14-Sep-14 09:03:07

Miracle, not moracle! Small keyboard.

carolineinthegarden Mon 22-Sep-14 08:02:44

Hi Sunshinenow smile

Poor you - sounds like you had a very severe case of IC. I'm so glad it's calmed down now, and long may your remission continue!

I'm definitely open to trying bladder instillations in the future. My plan is to start off with the safest/least invasive treatments first, and then progress down the list of treatments until I find something that works.

I am currently seeing some progress taking herbs combined with a strict diet. If this progress doesn't continue, I plan to try other treatments, including the instillations smile

Thanks so much for commenting,

Rosie x

foxinorangesocks Mon 22-Sep-14 20:02:20

I've stumbled on this thread and wanted to add things, just in case they could be of any comfort. Rosie I'm so sorry for your ongoing bladder issues. It sounds as if things might be getting a bit better and I really hope so. I apologise if some of this is a bit frank but here we go.

I had my first uti at 18 after starting a new relationship at uni with lots of sex and going on the pill. This began an eight year ongoing cycle of cystitis, antibiotics then thrush then cystitis again. Eventually I had cystitis all the time and no bacteria was showing up. I remember sitting on the net at about 26 reading IC forums and seriously thinking my bladder needed removing.

For me, Angela kilmartins book literally saved me. I adopted her washing method (bit grim but it worked for me), I came off the pill and stopped wearing g strings and only cotton underwear. I started taking potters antitis and things slowly got better. I also split up with that partner not too long after that so who knows what combination worked there but, bar a couple of bouts, I've been largely cystitis free for a decade now though I guard against it every day and drink loads of water. I don't know if me and him were 'incompatible' but he was rubbish at foreplay and I don't think that helped. My older self would not be doing uncomfy sex ever! There are lubes and patient men who are caring in bed but I didn't know that at the time (sorry!)

I doubt any of the above advice is new but you did ask for any advice, even if it was embarrasing and sex hasn't been discussed much here but I realise it's all a bit delicate being a daughter and mum thread so hope this isn't out of order and apologies if it's a bit much.

Mostly I want to say that it is a bloody wretched, depressing, lonely condition and you are being very very brave. But I was there, had all the voiding/kidney scan tests, you name it. And I did get better. I hope you manage to find your answers very soon thanks

maiscout Tue 23-Sep-14 14:53:35

Hi Rosie,

I'm so sorry you're suffering with this! I am also suffering with recurrent UTI's (along with many other symptoms sad) and am about to embark on the anti-candida diet too. I know from reading above that the diet didn't cure you, but did it help with symptoms?

I'm at my wits end and don't know anybody else who has ever done this diet. plus, everyone's stories of doing this diet I can find never follows up whether they recovered or not!

Hope you're doing better. Many thanks,

maiscout Thu 25-Sep-14 14:25:42

Also, I didn't check the full thread to see, but have you been checked for Mycoplasma? I read that Mycoplasma hominis can cause IC and is immune to a lot of antibiotics. If it's not candida, then it might be something like this.

Hope you're doing well.


carolineinthegarden Fri 26-Sep-14 18:20:46

Hi everyone, Rosie here. Sorry I haven't been very active on here recently - I've just moved into university for my third and final year (hooray!). When I first got this illness I was convinced I'd never finish my degree, so I'm amazed and delighted that I'm so close to finishing.

foxinorangesocks - thank you for your lovely message. Absolutely no need to apologise - I've become so used to talking about bladders, sex, cystitis etc. that it doesn't even embarrass me anymore! I'd already been with my boyfriend for a year when my problems started, so I don't think I can blame him. Sex is something I haven't even contemplated for the last 11 months so sadly I don't think that's a factor anymore, although it could, of course, have caused the problem in the first place.

I'm really interested in Angela Kilmartin - I might ask for her book for Christmas! I've heard lots of people mention the bottle washing technique and it's reassuring to hear that it helped you. I'd never heard of potters antitis before but I just looked it up and it sounds very interesting. I took uva ursi for a while to start with and didn't notice any improvement, but I'll add the antitis to my ever growing list of things to try!

Anyway, I'm so pleased you're feeling better now. Your kind words mean a lot to me and it's really lovely of you to take the time to comment. Thank you smile

maiscout - I'm so sorry you're suffering from recurrent cystitis. I'd be interested to hear how the anti-candida diet works for you - you're so right about people never updating after they've recovered. I think people tend to get better and then are too busy living their lives to come back and update threads etc.!

My treatment is herbs and the anti-candida diet combined, so I can't really pinpoint whether the diet itself is helping or not... However, the good news is that I'm definitely feeling better overall. I think eating a healthy diet can only help your body; whether you believe in candida or biofilms or anything else, the best way to help your body fight any illness is to give it all the nutrition and healthy food it needs. So you're doing the right thing.

Interesting about the mycroplasma - I've heard of it, but always thought it tended to be asymptomatic (I know a girl with IC who was treated for mycroplasma to no avail). It's definitely something I'd be interested in being tested for at some point, if my current treatment stops working.

Finally, you might want to have a look through this thread for the information I posted about Professor Malone-Lee. He treats women for biofilm infections which can cause IC symptoms or recurrent cystitis. The theory is that instead of recurring infections, you have one, lingering infection that hides in a biofilm, releasing planktonic bacteria every now and then. You might have already investigated this, but just in case, the link to Malone-Lee's website is somewhere on this thread.

I really hope you get some relief soon, and do update me on how the anti-candida diet is going. GOOD LUCK flowers

Once again, many thanks and lots of love to all smile xxxx

maiscout Mon 13-Oct-14 12:07:59

congratulations on making it into you third year! that is quite an achievement with all you've had going on! smile hope you're enjoying it!

Anti-candida diet is so-so. I feel a little bit better but the progress is slow, sometime I'm unsure whether I'm doing the right thing.

I just wanted to ask, since all the diet plans are so vastly different, what diet plan are you following? My naturopath said all veg including carrots peas and sweet potatoes are fine, and that it's also okay to eat lentils and beans and nuts etc which a lot of other people say are not okay! wish it was simpler than this!

Hope you're getting better,

carolineinthegarden Sat 18-Oct-14 09:17:51

Hi again Mai,

I'm so glad you've seen some improvement on the anti-candida diet. You're right, progress IS slow - I've been following a stict diet for nearly a year now and I'd say I'm around 50% better on a good day. So hang in there!

I follow a very specific diet designed by my herbalist. I eat a lot of salad, most vegetables (no peas, potatoes, beetroot, parsnips, swede), most meat and fish, most grains, one handful of seeds/nuts a day, a very limited amount of certain fruits, some sheep and goats' dairy products, almond milk, herbal teas... And, of course, I drink a lot of spring water. I think this diet is designed to give me all the nutrition I need, so that I can be on it long-term, without feeding the yeast too much. Perhaps your naturopath has recognised that without grains and nuts, your body might struggle to get what it needs. I know what you mean, though - it is SO confusing!

Please do keep me updated, and good luck with the diet. I hope your improvement continues.

Rosie xx

Vb911 Mon 27-Oct-14 16:51:39

Hi Rosie

I haven't replied to you sorry! but just wanted to let you know how i have progressed..

I am not completely back to normal but I'm doing much better. thank god!
I have seen private urologists but it didn't really answered any of my questions.(and costed me thousandssad ) lost my faith in docs tbh.

I have followed pretty strict diet for a bit but it only made me more miserable so now I eat everything. I quit smoking when I became ill and i think that helped a lot. I also stopped drinking coffee and alcohol for a while but recently started consuming those again and if I'm drinking a lot of water it doesn't bother me. I think my major reasons for stress have gone and that impacted on my health overall.

I drink aloe vera pills and cranberry pills everyday (I don't know if they help or its a placebo effect either way it comforts me) Antihistamines also helps when it gets worse. I also use progesterone gel in the first part of my cycle (not too much and i put it on the lower part of the tommy) - i believe it helps me. And of course plenty of water!
Btw i don't know if you have flown anywhere but airplanes make it so much worse for me (Thankfully not for long)

Most days it doesn't bother me but sometimes it gets worse and I don't really know why. Symptoms are not consistent(the only symptom that is almost always there is that i can feel burning when I'm weeing) and sometimes something makes it better, other times it makes it worse.

sorry if i bored you! haha

I hope maybe anything from my experience might help you. I wish you will be 100% symptom free very soon! its wonderful you started your third year! Just don't let it put too much stress on you!


carolineinthegarden Tue 11-Nov-14 11:49:10

Hi, Vb911 smile

How nice for you to be able to have coffee and alcohol again. I'm very jealous! I really hope the aloe vera and cranberry pills continue to be helpful. I've heard good things about aloe vera in particular, especially the Desert Harvest brand. Have you ever tried D Mannose? It's similar to cranberry pills in that it contains the active ingredient from cranberries which helps prevent UTIs. It's only effective against E.coli bacteria, though.

I can completely understand aeroplanes making you worse. I think my travelling days are well and truly over as I couldn't even contemplate getting on a plane in my current state - the coach journey to and from uni is bad enough!

Thanks for your kind words. Of course you haven't bored me - any advice is always so appreciated. Keep me updated on your progress if you get a chance - it sounds like you're improving overall; long may it continue smile

Rosie xx

rastagirl9 Wed 19-Nov-14 00:04:53

The sad news is that IC does not go away, you have to learn to manage it. Drink a lot of water. For me, sugar, caffeine, chocolate, carbonated drinks and anything acidic causes me to flair. There is a great book called Along the healing path. There is a pill called Prelief that helps to get rid of the acid. She will learn what she can eat and what will cause flares. It's not fun. I also get UTI's more often now. There is an IC national website and the gal that runs it is really good with ideas. I refused the drugs the doctor wanted me to have, I did have a Cystoscopy and it is very uncomfortable but may be necessary. I was in very bad shape when I had mine. There are also support groups everywhere. For me I went the natural way.

carolineinthegarden Fri 21-Nov-14 14:54:40

Hi rastagirl9, Rosie (Caroline's daughter) here smile

Yes, after more than a year of suffering I've learnt that IC doesn't go away, although I live in hope. Catherine Simone and many others have 'healed' their bladders through natural treatment, and even those who go down the conventional route can hope for periods of remission.

I am a member of both COB (the Cystitis and Overactive Bladder foundation) and ICN (Interstitial Cystitis Network) and both are invaluable resources, particularly for those choosing to go down the conventional route. Along the Healing Path is a fantastic book and really inspired me to persevere with the natural route.

Thanks so much for the advice about the cystoscopy - I haven't had one yet, but I know I will probably have to in the future. Did you feel that yours helped, exacerbated your symptoms or made no difference? If it made you worse, was this a permanent worsening?

Re: your frequent UTIs - have you considered the 'biofilm' theory? Lots of people have posted useful links and information on this thread, so if you feel your problem might stem from an underlying infection, their posts might be worth reading.

Thanks so much again for your words of wisdom. I hope the natural route is working for you and that your symptoms are improving.

Rosie xx

Padar Sat 22-Nov-14 11:16:50

Dear Rosie and Caroline and other mums / daughters with IC : I'm the mum of a now 16 year old who's been a year off school , has had a cystoscopy last week and has been diagnosed with IC . She doesn't even want to see her friends as she is too embarrassed . I'm homeschooling het .I would very much like to talk to you . Rosie , what's your age ( I've been to impatient to read the whole thread ). I'm going to join the COB forum soon . I would very much like to talk to you , and maybe for Rosie to drop my daughter a line , so she knows she's not alone ? She's struggling coming to terms with the diagnosis . Is there a way here I can give you my mail and email privately ? Otherwise I'll post my e mail here .

Padar Sat 22-Nov-14 11:23:49

I have read the thread now . My daughter is starting the installations soon . We will def try the diet. I'm going to get that book now .!

Padar Sat 22-Nov-14 11:26:08

Ps the cystoscopy is used for diagnosis .no changes afterwards .we will let you know about the treatment when it's started .

carolineinthegarden Sat 22-Nov-14 19:43:27

Hi Padar, I've sent you a PM (private message) smile

Rebecca199021 Sun 23-Nov-14 22:39:31

Hi Rosie,

I came across this thread whilst researching IC. I have suffered with the symptoms of IC on and off since I was 18 ( I am now 24) - I have had three urethral dilatations and cystocopys an although I have had some relief in the past, the most recent dilatation has not helped by symptoms at all.

My most recent flare up was also linked with some severe stomach problems - bloating and stomach pains and I believe the two are linked. I noticed that you are seeing Deborah Grant at the Hale clinic and I have also been for an initial appointment last week. I am at my wits end and I am desperate to find some relief for my symptoms. Did you find seeing Deborah useful ?



carolineinthegarden Wed 26-Nov-14 22:06:35

Hi there, Rebecca199021,

I am so sorry that you have been suffering from such a young age. How do you cope on a day to day basis? I'm pleased you've had some relief in the past - at least that proves that you can feel better, even if you don't at the moment.

I have been seeing Deborah for nearly a year now and on the whole I think it's been helpful. I will PM you with more details in a minute smile

I really hope you get some relief through following Deborah's treatment plan. We will get there in the end, I'm sure.

Sending healing rays,

Rosie xxxx

Rebecca199021 Fri 28-Nov-14 23:13:03

Hi Rosie,

Thank you for your kind words and thank you very much for your PM.

Well when I have a flare its been pretty hard to cope, keeping busy helps, as I find that the more I think about this ' problem ' the worse it is ( probably the stress that is caused by thinking about it ). However, as we all know this can be extremely difficult when a flare is happening and this one has been lasting for a while sad

I try and drink a lot of water although I am not sure this helps and I also try not to go to the toilet too much - I know this is hard as it does offer temporary relief but unless the pain / urge is too much I try to hold for as long as possible as this sometimes helps in regulating my bladder again. I am unsure of anything else to help it, it usually comes and goes at will !

Do you have any tips ? As I said before I have gone through periods when this has not really been too much of an issue for me and I am trying to pin point what exactly has changed. Have you ever been able to pin point what started yours off ?

As mentioned in my PM I plan to see Deborah again and I will keep you updated.

Sending healing rays back !


carolineinthegarden Fri 05-Dec-14 09:26:34

Hi again, Rebecca smile

I know I've only just sent you an email, but thought I'd reply to your message on here too in case anyone else is reading and can benefit from it.

I drink a lot of water too, because nothing is worse than sitting on the toilet, feeling desperate, and not being able to go at all. I think staying hydrated in general is good, although Deborah advises not to drink too much (i.e. 3 litres or more), as this might make things too diluted.

I know lots of people benefit from taking a teaspoon of bicarbonate of soda dissolved in water, but this has never given me much relief. Others take Prelief before food, which I have never tried. I don't really have any tips myself - when I'm feeling awful I just tend to drink lots of water and eat a paleo diet because I'm scared that grains etc. will irritate my bladder.

My problems started with an infection which eventually stopped showing up on urine tests but (in my opinion) never really went away. There are some great links on this thread to doctors such as Professor Malone-Lee who believe that IC is really a biofilm/intracellular infection, and I'm fairly sure that this is my problem. However, I don't want to take long-term, high-dose antibiotics unless I absolutely have to, hence I've gone down the natural route!

All the best, and I'll speak to you soon smile

Rosie xxxx

Nancyfighting Sun 28-Dec-14 08:45:10

Hi Rosie,
I am new here and seek for some advice. Glad to know I am not alone......And thank you so much for sharing your experiences.

I am suffering from frequent urination for several months. I am now considering having cystoscopy since the UTI reoccurs all the time. My obgyn told me that the reoccurrence could caused by the deep seated infection. But just like people's doubt, I am worried that the cystoscopy may make things worse.
Do you go routinely to check your urine? What is the reason that you don't want to have cystoscopy

Wish we all could feel bettersmile

ihavenonameonhere Sun 28-Dec-14 13:21:10

Hi there.

I have had IC and vulvadynia since I waa 19. I'm 33 now and things are a lot better but I do have flares. Had a terrible one last week after sex but it calmed down after an hour.

Glad you found IC network I found it a very useful site.

carolineinthegarden Sun 28-Dec-14 20:58:06

Hello Nancyfighting and ihavenonameonhere (great username),

So sorry to hear that you've both been suffering.

Nancyfighting - if you have a deep seated infection, the cystoscopy might not be the best way to deal with it. I strongly recommend that you Google Professor Malone-Lee and Dr. Anderson, who specialise in biofilm infections. Both of these doctors believe that a cystoscopy could introduce new bacteria and/or lodge the infection deeper in the bladder wall. This is one of the reasons I haven't yet had the cystoscopy, the other being that I am reluctant to have invasive procedures that involve antibiotics etc. until absolutely necessary. I hope that helps a bit and that you get some relief soon, one way or the other.

ihavenonameonhere - I can't believe you've been suffering for so long; I'm truly sorry that you've had IC from such a young age. Have you found anything in particular that helps with your symptoms? I know lots of people go into 'remission', has this ever happened for you?

I really hope that things calm down for both of you soon. Christmas is a horrible time of year to be suffering as we're all supposed to be happy! I hope that you both managed to get a bit of rest, anyway, and enjoy yourselves.

Rosie xxxx

Chrissy42 Sat 03-Jan-15 23:39:12

Just spent a fascinating hour reading this thread from beginning to end. So glad Rosie you are feeling more positive. I had a uti in July, my one and only, which has left me like so many on here. Bladder pain, especially when filling up, urethral irritation and frequency. Urologist said overactive bladder. On betmiga tablets once a day that help a little with frequency, but not pain or irritation. He wants to do cystoscopy end of January, but very reluctant. Before christmas I was suicidal. Husband had to give up work as I could not be trusted to be left on my own. Started taking anti depressants, which admittedly helped to raise my mood. Initially was on diazepam, sleeping tablets and amitriptyline at night. One day I just decided I cannot carry on like this. I sent off for an anxiety programme to follow, hypnosis tapes for my ibs, I have had for 20 years and difficult to control, relaxation tapes to try and deal with the stress. I am following the ic diet, drinking loads of marshmallow and camomile tea, taking quercetin, removing all additives and preservatives. Like everyone says we all have to find our own way through this. I keep telling myself try and stay positive ( very hard at times. ) whether I get it cured or some control is a matter of time. So glad so many have offered help and opinions. I do not know anyone with this problem. When I say I can't go for coffee and cake and try to explain I just get told ridiculous! Have given up explaining now and just say no thanks.
Xx chrissy

Elibean Tue 06-Jan-15 11:12:11

Just to add another voice to the IC community here smile

Mine started with minor bladder infection, then the blood in urine continued with symptoms of infection but the white cells disappeared - ie infection apparently gone, but blood and pain ongoing. After a couple of months I had a cystoscopy, and for those who've asked lower down on the thread: it made things worse for a day or two, then went back to same or slightly better. No permanent worsening at all.

They found oedema and inflammation but nothing nasty (ie not bladder cancer, and kidneys also scanned and ok) and I tried antispasmodics for a couple of weeks which didn't make much difference.

My GP agreed with me two weeks ago that it is IC, and apparently recent research shows a link with contraction of pelvic floor muscles - so physios trained to help with gynae problems can help, by showing you the muscles that are in spasm and teaching you to relax them. I've not tried that yet, but it made sense as mine is better when warm and relaxed, and worse when tense or cold. She put me on amitryptaline (10mg) which helped a little, and then doubled the dose (20mg) which helps a lot.

Most of all though, changing my diet makes the difference. Avoiding chillies, spicy food (sob) and fizzy drinks, and too much chocolate. And caffeine, though I do drink the occasional weak cup of tea. I don't drink alcohol anyway, but expect that would be one to avoid too.

Mine comes back and hovers when I eat the wrong thing, but otherwise is far more manageable at the moment - fingers crossed. It really is depressing and awful living with the constant pain and urgency when its there, so my heartfelt sympathy and good wishes for a less painful year for all on this thread x

lawrenson1810 Wed 07-Jan-15 21:16:53

I have also spent the last hour reading this thread which has brought back the awful memories of when I first started with my IC symptoms. I too had suffered recurrent UTIs from my early teenage years until I had my children in my 30s when it seemed to calm down. I had a hysterectomy at 40 after suffering years of heavy bleeding and fibroids, I also have always suffered from terrible hormone problems (bad mood swings etc) and the Consultant suggested I have my ovaries removed. I have since been on HRT patches. 3 years later I had a UTI which wouldn't go away and like Vb911 it was unbearable and I would have done anything to get rid of the pain but also the awful FATIGUE which was debilitating and a constant FOGGY HEAD, does anyone else suffer with this as well as the urgency and pain. I also saw a consultant urologist privately in London who diagnosed me but didn't really answer any of my questions about the fatigue/foggy head. I had the urodynamics and didn't see any difference and then tried a gluten free diet which after two days made a huge difference. I was then free from symptoms for 6 months and then it returned !! I now think that the gluten free diet was flucky. I have now had 2 flare ups in a month and I am desperate to find a solution to this awful tiredness and pain. I also think diet isn't a problem with me as I have had flare ups when being good and when eating what I like. After reading some of your posts I am wondering if my HRT is significant. Would love to hear from anyone that suffers with fatigue as well and anyone on HRT
Thanks Sue

Nancyfighting Fri 09-Jan-15 15:48:13

After having the cystoscopy, I found out it's not that scary and painful. The key is a experienced doctor!!

carolineinthegarden Sun 11-Jan-15 10:41:03

Wow, hi everyone! It's great to see that this thread is still so active.

Chrissy42 - your post is heartbreaking; I am so sorry you have been suffering in this way. How are you feeling at the moment? Have you decided to have the cystoscopy? Hopefully that will give you some answers, or at least a definitive diagnosis. As you can see from this thread, there are loads of different treatments to try. I read a few days ago that 50% of people with the symptoms of interstitial cystitis recover, which is promising. But, as you say, it's hard to stay positive when you're feeling so horrible. Please feel free to PM me anytime if you need to chat - bladder problems can be very isolating, so it's always good to speak to people who understand. Sending big hugs.

Elibean - hi! I am so pleased that following the IC diet has helped you. I find it very confusing that diet seems to make such a huge difference for some people, but no difference at all to others... But all the same, it's wonderful that it improves your symptoms! I've heard many good things about Amitriptyline, but am a bit worried about the side effect of urinary retention. I already have quite bad retention and don't want to make it worse... Have you noticed this side effect at all? I really hope that you continue to improve in 2015; thank you so much for your kind words and advice.

lawrenson1810 - I'm sorry that this thread has brought back bad memories. It's interesting that pregnancy helped your symptoms; do you think your problem was hormonal? I do know of a couple of people who suffer from what they call 'brain fog' alongside bladder problems. One girl found that her brain fog disappeared while on long term, high dose antibiotics to treat a biofilm infection in the bladder. I'm not an expert on hormones, but I imagine that the HRT could be very significant. I've read a few things saying that only bio-identical hormones are safe to take. One of the IC support groups I'm a part of recommends a hormone specialist in Bristol - here is her website if you're interested: I really hope you find some answers soon.

Nancyfighting - I'm so pleased that your cystoscopy wasn't scary or painful. Did it show anything?

Sending hugs, healing rays and prayers for a happy new year to everyone,

Rosie xxxx

Nancyfighting Tue 13-Jan-15 10:26:33

The cystoscopy result shows typical Ic data. Fortunately my Ic symptom doesn't become worse after the examination. My volume of bladder becomes bigger to 400ml after the bladder dilation. Although sometimes I still pee not much. And now I can stop guessing what is wrong with me.
I am now taking Urosan which is basically the same as Elmiron. I don't know if it will work or not. But I realized that we can't keep being controlled by IC. I always feel better when I forget or ignore the symptoms. That's Ture!!!
Girls plz have faith in yourselves! We must believe things will become better.

Bolshybookworm Tue 13-Jan-15 11:33:34

Hi ladies,
Haven't read the full thread, but just wanted to share my success story. I started getting cystitis like symptoms in my mid-twenties (I think possibly triggered by a real UTI after sex). No bladder pain but bouts of acute pain and urgency (the pain was urethral, IFSWIM). In between the bouts, I had constant burning vulval pain, it was agony. I repeatedly went to the GUM clinic but never tested positive for bacteria, STIs etc. once tested positive for thrush (after stupidly self treating with hand cream- was desperate at that point). No one was willing to refer me either, I felt stuck and very depressed. Was able to see a urogynae friend of the family who put me on long term antibiotics (cipro and metronidazole to start with (think the hand cream gave me a skin infection) then cefalexin) and steroids for the skin. I also stopped wearing trousers (sob) and tights (now I cut a hole in the crotch!), stopped drinking anything other than water and if I drank alcohol, accompanied it with massive amounts of water to dilute it. I also went on the low oxalate diet for a while as high oxalate foods made the pain worse. Stopped the pill (hormones definitely have an influence on my pain levels). And of course, when I did manage Dtd, went for a wee and washed afterwards. I also tried to stretch out times between going for a wee, partly because it hurt so much!

It took a long time (was on ABs for several years), but I am now pain free. Still have to be careful and avoid trousers, cycling etc, but it's a small price to pay.

You all have my profound sympathies. I know I lost crap friends because they couldn't understand (and I was too embarrassed to explain) why I could no longer go out all the time and was suddenly so miserable. The pain can be so all consuming. At least it sorts the wheat from the chaff, partner wise. My problems started a couple of months after I met my boyfriend. We are now happily married with 2 small children smile. I hope you all find the treatments (and doctors!) that work for you.

As others have said, be wary of alternative practitioners- most aren't medically trained. Once you have your diagnosis, use them to support and supplement your treatment, rather than replace it.

Elibean Tue 13-Jan-15 12:15:23

Hi Caroline! No, it hasn't affected urine output in any way. But I had a scan to check retention, and as long as I wait long enough, shift position etc I'm alright on that not sure if it would otherwise.

My only side effects seem to be vastly improved sleep, and a bit of sleepiness in the mornings - small price to pay!

Wishing you all the best of health for 2015 xx

Chrissy42 Fri 16-Jan-15 23:00:30

Thank you so much for your lovely message. Things are improving slowly. I am sticking rigidly to the diet. Off the sleeping tablets. Off the amitriptyline as it did nothing. Take a diazepam at night occasionally. Antidepressant kicked in and feel more positive. Waiting for results from food intolerance testing. Onwards and upwards hopefully. Hugs to all fellow sufferers. Xx

carolineinthegarden Thu 22-Jan-15 09:04:31

Hi again, everyone.

Nancyfighting - I am really glad that the cystoscopy gave you some definitive answers and that the dilation has increased your bladder capacity. That is certainly good news. I really hope that the Urosan helps you - does it take a few months to take effect, in the same way that Elmiron does? Let us know how you're getting on - I'd be really interested in the Urosan as my urologist told me it's difficult to get hold of Elmiron in the UK.

Bolshybookworm - I love your username. I'm so, so glad that you've managed to get your symptoms under control. It's great to hear of another 'success story' on long term antibiotics, as this is the next treatment I intend to try. Do you think your problems were caused by an underlying infection? Thanks for your good advice re: alternative practitioners. I always check the qualifications of anyone I consult (alternative or conventional) and would only ever pursue a treatment if I understood and believed in the science behind it. Anyway, thank you again for your kind words; your story is inspiring and reassuring. I hope that one day I can be pain free and have a family, too.

Elibean - I'm glad you're not experiencing bad side effects from Amitriptyline. The improved sleep sounds blissful; I can't remember the last time I felt rested! I hope that things continue to improve for you.

Chrissy42 - I am so pleased that things are improving. Long may it continue. Keep us updated on your test results and how you're feeling. I'm always here if you need a chat.

Another huge thank you to everyone who's posted on this thread - you've all been insightful, sensitive, thoughtful and reassuring and I appreciate it so, so much.

Sending all my very best wishes,

Rosie (Caroline's suffering daughter) xxxx

Nancyfighting Fri 23-Jan-15 08:52:53

Dear Rosie,

Yes, the Urosan works like Elmiron which needs to be taken for few months to show its effect.
My GYN also told me my vagina area is red and it could cause the urethra and bladder problem .She prescribed me the estriol cream which is usually for menopause women. However I am only 26.....I would like to discuss more with the doctor.....Although estriol is a much safer estrogen. and some Ic patients did become better after using estrogen.

I will keep updating my condition here, wish can do some help for anyone who suffer from this complicated problem.

All the best!

nmg85 Fri 23-Jan-15 11:06:38

Hi all,

I am 29 years old and have suffered with IC since April 2012. To say that it has affected my life is a understatement I don't have the life I want but I try desperately to have a life. I have tried most tests inc US, urodynamics and 2 cystoscopies. So far I have tried 10 drugs and 2 types of instillations. I am currently in a ' severe flare' despite having 2 ok months of manageable symptoms. I have no idea why this has occurred and would just like it to go as quickly as it arrived as the confidence I have gained over past few months is quickly disappearing. I have tried alternative therapies and I have a an appointment with a osteopath next week. If anyone would like to chat about treatments or just talk to someone who might understand please feel free to message me

bubsxo Mon 26-Jan-15 03:48:10

Hi all,

I've read some of the posts on here but as it's quite late and I'm tired I skipped through quite a lot. But I'm definitely going to re read it all tomorrow and look into suggestions, books, and diets that you've all posted smile

I've just been diagnosed with IC last week after suffering with urine frequency for the past two years or so. It is terrible and definitely makes you very depressed. I felt embarrassed and it affected my social life, my relationship, and my work life.

I'm going to keep it short for now and wont to into details about my history or symptoms but I just wanted to say those who are worried about cystoscopies please have a think about having this procedure. I had one just before Christmas and spent the weeks leading up to it terrified by Google answers, and crying. I thought about cancelling but my mum whose seen me suffer bless her refused to let me. With my anxiety and panic attacks worsened by the thought of it i tried to leave the hospital several times before.. I'm so glad I didnt! The doctors before kept giving me antibiotics for years and years as I'd suffer a lot with cystitis pain and I was sent for the same scan of my bladder over and over. It got so bad that I couldn't hold the 2 pints of water that they required me to drink before hand and I was a nervous crying wreck.

I'd never been put to sleep before so was incredibly worried about that and luckily my auntie who works in theatre was able to hold my hand as I was put to sleep, but all was fine. I did suffer from really bad pain after my cystoscopy and the need to go even more was increased, they did give me an antibiotic when I was under but I think that because they stretched my bladder during the procedure it was very inflamed and I required further antibiotics.

It was painful for a few days to "pee" and I thought it had made things worse, but it definitely helped as it settled down to normal (well what I considered normal - definitely not normal for most people!) and I was given the diagnosis of IC. It also ruled out any other serious problems that they couldn't of found without looking at my bladder.

I'm due to have bladder instillations once a week starting from next week for a month, and then monthly for 9 months. I'm terrified as Google has brought up horror stories (i need to stop doing that!) but I'm going to discuss this with my GP on Tuesday.

I'm so glad I went ahead with a cystoscopy and would advise it to people for sure. I finally feel like I'm being taken seriously now, as many doctors would just give me antibiotics based on my symptoms (i now know i never actually had an infection all those times!) or not take me seriously. Although I'm scared of what the future will hold with IC as I know there is no known cure I would of still been given multiple antibiotics and depressed that I had no diagnosis.

Looking forward to reading through the thread properly tomorrow and hopefully finding successful ways to manage this horrible thing and I hope all those suffering have some relief, for today at least smile xxx

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