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?

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

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

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

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.

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.

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.

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 .

Sorry! Cardamomginger

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.

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'.

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

ClaraFox:
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.

Cocolepew:
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...

Cardamomginer:
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.

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!

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.

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.

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.

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

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

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

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

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.

*lining

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

www.royalfree.nhs.uk/pip_admin/docs/cystistat_1186.pdf

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

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

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