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?

[LittlePeasMummy1]

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]

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]

Hi everyone, Rosie here

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]

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!! :) 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
xx

[LittlePeasMummy1]

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]

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]

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

[Swannykazoo]

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]

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 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 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]

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]

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]

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

[VivaLeBeaver]

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]

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

[Swannykazoo]

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]

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

[Swannykazoo]

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

[Swannykazoo]

Amongst many other conditions ? (posted too soon)

[carolineinthegarden]

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

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]

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]

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!!
Nx

[VivaLeBeaver]

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]

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]

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]

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

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: iris.ucl.ac.uk/iris/browse/profile?upi=JGMAL68. 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

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