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

(134 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?

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 Urologist...to seek further treatment/consult on this potential urethral diverticulum...in 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.
Xx

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:

www.allergyuk.org/common-food-intolerances/histamine-intolerance

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

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