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

[carolineinthegarden]

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?

Hiya

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...

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.

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.

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!

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

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.

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.

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.

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

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.

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.

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

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...

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.

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.

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.

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.

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.

Thanks for the tip, Fairylea
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!

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!

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.

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.

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!

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