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?

[carolineinthegarden]

Happy Easter everyone!

Just a quick message to say hello and let you all know that I'm doing okay, all things considered. I've been having major problems with my long-term boyfriend, am busy writing the final essays for my degree and have been doing a lot of cleaning and clearing out as our house has just gone on the market. Because of this, it's not really surprising that my bladder is playing up a bit after a really good couple of months. I'm hoping that it's just a stress-related flare and will pass soon.

Nancyfighting - thanks for the information about Estriol! Are you taking it at the moment? How is it going? Do you think it's helping your bladder or vaginal symptoms at all? I really hope so. Did you have a hormone test in the end? I've heard that NHS testing is woefully inadequate. My oestrogen levels always fall within the normal range, but if the Internet is to be believed then this range is far too broad. Anyway, please keep me updated on how you're doing. I'm keeping my fingers crossed for you.

Hi again, nmg85. The preparations for your wedding must be in full swing by now - how is it going? I hope you're not finding it too stressful and that the monthly instillations are helping keep the bladder in check at this important time. I must confess, I've never done much exercise. I've been doing quite a lot of walking recently and I do think the fresh air helps, but I can't really comment on the effect of going to the gym!

Thanks again for your messages and support. This thread has been a source of great comfort for me and I really appreciate everyone taking the time to chat about the woes of bladder problems.

All the best,

Rosie xxxx

[nmg85]

Hi carolineinthegarden

Sorry to hear you are having a stressful time. Yes the wedding is just over 3 weeks away so trying to keep calm and complete the last bits. My bladder is up and down, i do find the osteopath helps me. I managed to do a 2 hour car journey the other day with only 1 stop which is big progress from a year ago.

Hope things improve for you soon :-)

[carolineinthegarden]

Hello, nmg85

By my calculations, your wedding should be any day now, so I just want to wish you the very best of luck with everything. I hope that it's a really special day and that your bladder behaves itself.

Please let me know how it goes, and CONGRATULATIONS!

Rosie xxxx

[nmg85]

Awww thanks Rosie :-) It is tomorrow so on the countdown in hours! I am hoping it behaves as well but then it only needs to last 20 min really. Hope you are well? xx

[Lindsey42]

Hi,
I have read bits and pieces of threads on interstitial cystitis . I am 42 and I was first diagnosed at the age of 19. I am fortunate that my interstitial cystitis went into remission after I had children . I can tell that you do have to avoid caffeine all cost and anything acidic. I use to sit on heating pads to help relieve pain. One doctor I can recommend is doctor simon mirleman in Birmingham , alabama. He is one of the top urologist that deals with interstitial cystitis. The is a website called ic help that has a list of foods to eat and avoid , along with items you can buy to help with ic. Diet is the key and the right doctor. I hope this helps.

[carolineinthegarden]

Hi everyone!

I'm so sorry it's been such a long time since I updated this thread. I've finished uni now and graduated with my first class degree (yay!) so hopefully things will calm down a bit now. My bladder has largely been quite good - I still have urgency, frequency and retention, but they're no way near as bad as they used to be. I actually managed to sit through my two hour graduation ceremony without being too uncomfortable, which I thought would be impossible a year ago.

nmg85, I'm dying to know how your wedding went, so please update us if you get a chance.

Hello Lindsey42 I'm so sorry that you've been suffering with bladder symptoms from such a young age, but I'm delighted that your IC has gone into remission. I find it immensely reassuring to hear stories about people for whom pregnancy didn't make their bladder worse, as I'd sort of resigned myself to the fact that having children would be impossible, or at least immensely painful, for me. Thanks for the information about diet - as much as I miss caffeine, alcohol, fruit etc., I am determined to stick to my strict elimination diet as it seems to be helping somewhat. I might look into getting a proper heating pad, too, as at the moment I only use a small hot water bottle occasionally. Thanks for the recommendation about Doctor Mirleman, too. Unfortunately, I'm based in Kent in the UK so he might be a bit far afield for me! However, I'm happy to put my faith in my medical herbalist at the moment, as whatever she's doing, it seems to be working.

Sending all the best to anyone/everyone who still reads this thread. I hope you're all as well as you can be and that you've found the right healing path for you.

Rosie xxxx

[nmg85]

Hi Rosie,

Sorry for my delay in replying!

Congrats on graduating you must be so proud! A degree is hard enough with out adding in IC as well.
The wedding was lovely, a small flare in the afternoon but nothing major. The day went v v quick!
Hope you are enjoying life out of uni xx

[Silviaz22]

Hi Rosie !
I know this is Soooo old , I just read all this story ,some how they kind of helped me a lot , but yet I can't help to wonther how are u now ? I wish to know if you found more pices of this crazy puzzle ?
I wish also to share my storiy ,
But I don't know if anyone it's still here ?
If so I ll will do ,
Defenatly in need of some help 🙏🏻
All the best

[SJP135]

Hello. I know this is a really old thread but I'm going through exactly the same problems and would love to know the outcome of the posters condition and if she got a diagnosis? Also to Silviaz22 I would be happy to chat :)

[nmg85]

Been awhile since anyone has posted but still around if need to talk :-)

[Dacresmallwilly]

Just came across this- I was one of the earlier posters but have since name changed. For anyone still suffering, I cannot recommend prof malone-lee enough. I've been receiving high dose antibiotics for over a year after several years of hell and my quality of life severely compromised by 'IC'. I firmly believe that most people with these symptoms have a bladder wall infection that can only be sorted out with antibiotics. Other 'treatments' may improve symptoms but won't get rid of them.

[maloney123]

Hello!
How are you doing now Rosie? I found this thread while feeling v low and found it a really helpful read x

[carolineinthegarden]

Hi to everyone who might be interested in my daughter's progress since I started this thread around five and a half years' ago. It's now June 2019 and I'm delighted to say that her life has turned around completely.
She stuck to her policy of eating a 'no sugar' diet for about four years and was very strict about this. It included no alcohol, which was extremely difficult as it basically alienated her from friends. No potatoes or anything that the body converts to sugar. She didn't eat wheat/gluten or dairy products either because these can be difficult for the digestive system. No caffeine, but enjoyed herb teas and just good quality water (not tap water unless it's filtered). She took a combination of really high quality probiotics, combined with natural antibiotics, natural anti-inflammatory products and other gut-healing products. Some of these were difficult for her system to cope with and she had to have tiny doses of certain ones, gradually building up to higher doses. She did have guidance for the first three years and eventually continued along the same path herself, rotating the products every few weeks so that her system didn't get too used to them.
The most difficult thing along the way was the attitude of other people. They mainly felt that she should just go to the doctor and endure all the rather invasive tests. Few of them were interested enough to learn that even if IC or similar bladder conditions are diagnosed (a loose term, diagnosis as it's really just an 'umbrella' condition rather than a specific medical condition), there's not much that could be done anyway. And possibly the investigations would make things feel worse for the sufferer.
She also went to a kinesiologist and had Vega-testing. This was heartening and not meant to be diagnostic in terms of a specific condition, but just for her (us) to be reassured that we were on the right sort of path. You go down this health-boosting route without really knowing if it's going to help. Both of these people, mentioned above, came up with similar results - that she was intolerant as soon as they tested for anything containing sugar (honey, sucrose, etc).
It seemed that she just needed to take everything back to basics in order to allow the gut to heal the body. Our immune system is in the gut. Nature wants us to heal, but many products stop this process from happening. Candida (yeast) tends to grow out of control if it gets the chance and it feeds off sugar. Once the natural immune system has been disrupted (often through the over-use of antibiotics), it needs to be re-built.
Gradually, she felt better. It was slow and steady. Some days she felt worse than others but she has now put it all behind her and says she doesn't even want to think about it. We don't mention IC any more, hurrah!
Her diet is now completely normal. She makes sure she has leafy green vegetables regularly and is always aware (mentally) when her diet hasn't been very good. However, she eats absolutely anything. She has friends again and no longer feels the odd one out.
I do believe this has made her into a stronger person and she is certainly empathetic for people who have health conditions, particularly those that are invisible to the naked eye.
I'm really proud that she endured this horrible condition, stuck to her beliefs, even when people were mocking her, and came through the other side. She managed to achieve a 1st Class English degree along the way and now works full time. She certainly found out who her friends were, as some stuck by her, even when the going was tough.
If you are reading this, you are probably suffering too. I wrote this update when another reader of the thread asked me to do so.
My message to you all is not to give up. Try not to be downhearted when things feel so awful. Try to understand what this condition could be caused by - I'm sure everyone is different but something in your history must point towards why it started. Don't expect a quick fix. Don't cheat if you decide to change your diet - there's no point in cutting out sugar if you give yourself a day off here and there. Your time for celebrating with champagne and chocolates will come!

[Heats85]

Hello everyone,

I was reading a previous thread from Rosie @Carolineinthe garden about the suffering brought about by Painful Bladder Syndrome. I am suffering from a particularly horrendous flair, brought about by a nasty kidney infection 9 weeks ago. It has left me with lower abdominal pain (like toothache) and urethral pain which is nothing short of agonising: Acute Symptoms:
•Severe pain in the urethra – feels like an open wound/ inflamed/ throbbing/ intense pressure/ sudden jolts (like an electric shock) like my urethra is suddenly being pulled out of my body. Like a knitting needle is inside my urethra, constantly pricking.

•Bladder feels very heavy/ pressure/ constant feeling like I need to urinate. Bladder spasms.

Sharp stabbing pain in left ovary.

Extreme muscle pain and soreness

Unable to sleep due to pain.

I have become a member of the COB foundation and the nurse I spoke to over the phone was absolutely lovely, but the forum itself has completely terrified me: so many people in long term agony, which doesn't offer much comfort. I hope and pray that some people do recover or find a way to manage the conditions so that they can lead a normal life. My world has become so small, as the pain is that severe currently, that I can't go out, work or do anything really. I feel like an invalid confined to my home and it's seriously affecting my mental health. Having this constant pain and not being able to find any relief from it quickly wears you down and takes you to some dark places/ thoughts. I'd be really interested to hear of any success stories/ strategies that might support me in finding a way to manage this condition/ find some pain relief from this flair. I will document my history with IC in a later thread. Thanks everyone

[Shehasadiamondinthesky]

I had IC in my 30s and honestly thought my life was over. Then suddenly after 3 years it went and never came back. I'm 60 now. I dont really know what caused it but I've always suspected it was sex related. When I became celibate it didn't come back but Im not sure tbh.