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?

[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.

[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

[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!

[maloney123]

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

[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.

[nmg85]

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

[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 :)

[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

[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

[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

[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.

[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

[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]

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]

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 I am okay thanks, Had my monthly dose of Parsons Cocktail instilled in my bladder today. The wedding is on the 3rd May so just under 8 weeks to go.

Has anyone else seen improvement when doing exercise? I have been getting fit and trim for the wedding and do seem to feel better. Sometimes I pretend I can run the condition off on the treadmill haha.

Hope you are all well ( well as good as you can be)
:-)

[Nancyfighting]

Dear Rosie,

Sorry I didn't state clearly. Estriol (also oestriol or E3) is one of the three main estrogens produced by the human body. So it's indeed bio-identical. I had discussed with my doctor. She only prescribed me small dose of estriol cream, thus it is low risk. Moreover, in the research paper, it seems no big side effects to the patients. I don't know if it will help in my case, since I don't take the birth control pill for a very long time. However, my symptoms did come out a month later after I took the pills for my irregular menstruation. Meanwhile, I also have vaginal symptoms, which is usually treated with estrogen cream. So...I just give it a try.

But please be aware of the dark side of estrogen. It's really hard to say if estrogen is good for ic patients. Some scientists think estrogen activates the master cells in bladder and progesterone is the one to reduce it. I must say I really can't figure it out.

Right now I am thinking of having hormone test. Maybe it will help to get a best formula of hormone therapy.

[carolineinthegarden]

Hi all, sorry it's been a while since I updated! I've been really busy with uni and, thankfully, my bladder has been behaving itself. I still have constant symptoms, but they've been fairly low level. I decided to give up all fruit and dairy at the end of January and this has coincided with a slight improvement in that I haven't had any major flares. I don't know if this is just a coincidence or not, but I had a small amount of goats' cheese and butter yesterday and felt pretty rubbish afterwards, so I'm going to steer clear of it for a bit longer!

bubsxo - what a wonderful idea for a tattoo. I hope that it's healed by now and that it serves as a reminder that illness can only beat us if we let it.

nmg85 - I'm so glad that you found the osteopath helpful. How are you feeling now? I hope that you continue to improve and that your wedding is amazing - when is it?

Nancyfighting - thanks so much for the information. That's so interesting, as I am certain that my initial infections were caused by low oestrogen as a result of taking the contraceptive pill. I know that many people take bio-identical oestrogen to alleviate their IC symptoms...definitely something to research further. Bit of a long shot, but I don't suppose you happen to know whether estriol is bio-identical or not?

I really hope that you are all well - or as well as you can be - and enjoying the beginning of spring. Let's hope that this marks a positive change for all of us.

Lots of love,

Rosie xxxx

[Nancyfighting]

Hi everyone,
There's a research shows the results after estriol treatment. It seems to be a safe estrogen.

Find the following research paper if you are interested in.
"Effects of local estrogen therapy on recurrent urinary tract infections in young females under oral contraceptives"

[nmg85]

Hi carolineinthegarden I have now had two osteopath appointments and I have found some improvement in my overall health. I am also out of my flare and back to the bog standard annoyance level I usually have which I guess I am happy about. I don't have pain just frequency and urgency, I guess I am lucky in that sense. I am now back to planning my wedding and hoping I can stay flare free for awhile. Hope you are all well.

[bubsxo]

I do agree that it is a horrible procedure just to receive a diagnosis.. However I am glad I had it done to rule out any other problems and to finally get a diagnosis! my first installation is this Friday and I am so nervous but will update you on how it went :) I'm currently suffering with tattoo pain now from one I got on Thursday. its an anchor wrapped by the infinity symbol saying "I refuse to sink" just a reminder to myself not to let this horrible thing or the other illnesses I'm dealing with get me down!

Hope this message finds you all as well as can be! xx

[carolineinthegarden]

Nancyfighting - Hi! Is Estriol a bio-identical oestrogen cream? I've heard that bio-identical hormones are far better than others. I'm not sure if I've already posted this link, but there's a doctor in Bristol who deals with hormone issues and has a number of patients with IC. This is her website if you're interested: www.drannieevans.com. Please keep me updated on how you're doing, especially if you manage to speak to your doctor more about oestrogen - I'm sure that hormones play a part for me but, like you, I think I'm too young to be affected by menopause.

Hello, nmg85, and welcome to the thread that everyone wishes they weren't a part of. I'm so sorry that you're flaring at the moment. On the bright side, at least you know that you are capable of feeling better after the two months of improvement. It's just a case of finding the magic formula to help you get back to that state! I'm not sure what your symptoms are, but if you suffer from bladder pain it might be worth trying acupuncture as an emergency measure to reduce your pain. How did your appointment with the osteopath go? I am currently seeing an osteopath but feel that he is better at treating my overall health rather than my bladder problems. Sending you big hugs and really hoping that you feel better soon.

bubsxo - I hope you found the rest of the thread useful! It's nice to think that, although I can't do a lot with my life at the moment, I might be able to help people by sharing what little knowledge I've gained over the past 15 months. I'm so glad that your cystoscopy was a positive experience for you. You deserve a medal for conquering your fear! IMHO it's a bit barbaric that we still have to be subjected to the cystoscopy in order to get a diagnosis... Most of the time, cystoscopies just seem to show bladder inflammation - well, duh! Have you had your first instillation yet? How did it go? I really hope that the instillations give you some relief; I heard that they have a really high success rate. Keep us updated on how you're getting on!

Lots of love to all. I've just started my final term at university (scary!) so might not be around to update as frequently as usual, but I will definitely be checking in and reading any comments. Rosie xxxx

[bubsxo]

Hi all,

I've read some of the posts on here but as it's quite late and I'm tired I skipped through quite a lot. But I'm definitely going to re read it all tomorrow and look into suggestions, books, and diets that you've all posted :)

I've just been diagnosed with IC last week after suffering with urine frequency for the past two years or so. It is terrible and definitely makes you very depressed. I felt embarrassed and it affected my social life, my relationship, and my work life.

I'm going to keep it short for now and wont to into details about my history or symptoms but I just wanted to say those who are worried about cystoscopies please have a think about having this procedure. I had one just before Christmas and spent the weeks leading up to it terrified by Google answers, and crying. I thought about cancelling but my mum whose seen me suffer bless her refused to let me. With my anxiety and panic attacks worsened by the thought of it i tried to leave the hospital several times before.. I'm so glad I didnt! The doctors before kept giving me antibiotics for years and years as I'd suffer a lot with cystitis pain and I was sent for the same scan of my bladder over and over. It got so bad that I couldn't hold the 2 pints of water that they required me to drink before hand and I was a nervous crying wreck.

I'd never been put to sleep before so was incredibly worried about that and luckily my auntie who works in theatre was able to hold my hand as I was put to sleep, but all was fine. I did suffer from really bad pain after my cystoscopy and the need to go even more was increased, they did give me an antibiotic when I was under but I think that because they stretched my bladder during the procedure it was very inflamed and I required further antibiotics.

It was painful for a few days to "pee" and I thought it had made things worse, but it definitely helped as it settled down to normal (well what I considered normal - definitely not normal for most people!) and I was given the diagnosis of IC. It also ruled out any other serious problems that they couldn't of found without looking at my bladder.

I'm due to have bladder instillations once a week starting from next week for a month, and then monthly for 9 months. I'm terrified as Google has brought up horror stories (i need to stop doing that!) but I'm going to discuss this with my GP on Tuesday.

I'm so glad I went ahead with a cystoscopy and would advise it to people for sure. I finally feel like I'm being taken seriously now, as many doctors would just give me antibiotics based on my symptoms (i now know i never actually had an infection all those times!) or not take me seriously. Although I'm scared of what the future will hold with IC as I know there is no known cure I would of still been given multiple antibiotics and depressed that I had no diagnosis.

Looking forward to reading through the thread properly tomorrow and hopefully finding successful ways to manage this horrible thing and I hope all those suffering have some relief, for today at least :) xxx

[nmg85]

Hi all,

I am 29 years old and have suffered with IC since April 2012. To say that it has affected my life is a understatement I don't have the life I want but I try desperately to have a life. I have tried most tests inc US, urodynamics and 2 cystoscopies. So far I have tried 10 drugs and 2 types of instillations. I am currently in a ' severe flare' despite having 2 ok months of manageable symptoms. I have no idea why this has occurred and would just like it to go as quickly as it arrived as the confidence I have gained over past few months is quickly disappearing. I have tried alternative therapies and I have a an appointment with a osteopath next week. If anyone would like to chat about treatments or just talk to someone who might understand please feel free to message me

[Nancyfighting]

Dear Rosie,

Yes, the Urosan works like Elmiron which needs to be taken for few months to show its effect.
My GYN also told me my vagina area is red and it could cause the urethra and bladder problem .She prescribed me the estriol cream which is usually for menopause women. However I am only 26.....I would like to discuss more with the doctor.....Although estriol is a much safer estrogen. and some Ic patients did become better after using estrogen.

I will keep updating my condition here, wish can do some help for anyone who suffer from this complicated problem.

All the best!