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?

Hi Rosie,

Thank you for your kind words and thank you very much for your PM.

Well when I have a flare its been pretty hard to cope, keeping busy helps, as I find that the more I think about this ' problem ' the worse it is ( probably the stress that is caused by thinking about it ). However, as we all know this can be extremely difficult when a flare is happening and this one has been lasting for a while :(

I try and drink a lot of water although I am not sure this helps and I also try not to go to the toilet too much - I know this is hard as it does offer temporary relief but unless the pain / urge is too much I try to hold for as long as possible as this sometimes helps in regulating my bladder again. I am unsure of anything else to help it, it usually comes and goes at will !

Do you have any tips ? As I said before I have gone through periods when this has not really been too much of an issue for me and I am trying to pin point what exactly has changed. Have you ever been able to pin point what started yours off ?

As mentioned in my PM I plan to see Deborah again and I will keep you updated.

Sending healing rays back !

xxx

Hi again, Rebecca

I know I've only just sent you an email, but thought I'd reply to your message on here too in case anyone else is reading and can benefit from it.

I drink a lot of water too, because nothing is worse than sitting on the toilet, feeling desperate, and not being able to go at all. I think staying hydrated in general is good, although Deborah advises not to drink too much (i.e. 3 litres or more), as this might make things too diluted.

I know lots of people benefit from taking a teaspoon of bicarbonate of soda dissolved in water, but this has never given me much relief. Others take Prelief before food, which I have never tried. I don't really have any tips myself - when I'm feeling awful I just tend to drink lots of water and eat a paleo diet because I'm scared that grains etc. will irritate my bladder.

My problems started with an infection which eventually stopped showing up on urine tests but (in my opinion) never really went away. There are some great links on this thread to doctors such as Professor Malone-Lee who believe that IC is really a biofilm/intracellular infection, and I'm fairly sure that this is my problem. However, I don't want to take long-term, high-dose antibiotics unless I absolutely have to, hence I've gone down the natural route!

All the best, and I'll speak to you soon

Rosie xxxx

Hi Rosie,
I am new here and seek for some advice. Glad to know I am not alone......And thank you so much for sharing your experiences.

I am suffering from frequent urination for several months. I am now considering having cystoscopy since the UTI reoccurs all the time. My obgyn told me that the reoccurrence could caused by the deep seated infection. But just like people's doubt, I am worried that the cystoscopy may make things worse.
Do you go routinely to check your urine? What is the reason that you don't want to have cystoscopy

Wish we all could feel better

Hi there.

I have had IC and vulvadynia since I waa 19. I'm 33 now and things are a lot better but I do have flares. Had a terrible one last week after sex but it calmed down after an hour.

Glad you found IC network I found it a very useful site.

Hello Nancyfighting and ihavenonameonhere (great username),

So sorry to hear that you've both been suffering.

Nancyfighting - if you have a deep seated infection, the cystoscopy might not be the best way to deal with it. I strongly recommend that you Google Professor Malone-Lee and Dr. Anderson, who specialise in biofilm infections. Both of these doctors believe that a cystoscopy could introduce new bacteria and/or lodge the infection deeper in the bladder wall. This is one of the reasons I haven't yet had the cystoscopy, the other being that I am reluctant to have invasive procedures that involve antibiotics etc. until absolutely necessary. I hope that helps a bit and that you get some relief soon, one way or the other.

ihavenonameonhere - I can't believe you've been suffering for so long; I'm truly sorry that you've had IC from such a young age. Have you found anything in particular that helps with your symptoms? I know lots of people go into 'remission', has this ever happened for you?

I really hope that things calm down for both of you soon. Christmas is a horrible time of year to be suffering as we're all supposed to be happy! I hope that you both managed to get a bit of rest, anyway, and enjoy yourselves.

Rosie xxxx

Just spent a fascinating hour reading this thread from beginning to end. So glad Rosie you are feeling more positive. I had a uti in July, my one and only, which has left me like so many on here. Bladder pain, especially when filling up, urethral irritation and frequency. Urologist said overactive bladder. On betmiga tablets once a day that help a little with frequency, but not pain or irritation. He wants to do cystoscopy end of January, but very reluctant. Before christmas I was suicidal. Husband had to give up work as I could not be trusted to be left on my own. Started taking anti depressants, which admittedly helped to raise my mood. Initially was on diazepam, sleeping tablets and amitriptyline at night. One day I just decided I cannot carry on like this. I sent off for an anxiety programme to follow, hypnosis tapes for my ibs, I have had for 20 years and difficult to control, relaxation tapes to try and deal with the stress. I am following the ic diet, drinking loads of marshmallow and camomile tea, taking quercetin, removing all additives and preservatives. Like everyone says we all have to find our own way through this. I keep telling myself try and stay positive ( very hard at times. ) whether I get it cured or some control is a matter of time. So glad so many have offered help and opinions. I do not know anyone with this problem. When I say I can't go for coffee and cake and try to explain I just get told ridiculous! Have given up explaining now and just say no thanks.
Xx chrissy

Just to add another voice to the IC community here

Mine started with minor bladder infection, then the blood in urine continued with symptoms of infection but the white cells disappeared - ie infection apparently gone, but blood and pain ongoing. After a couple of months I had a cystoscopy, and for those who've asked lower down on the thread: it made things worse for a day or two, then went back to same or slightly better. No permanent worsening at all.

They found oedema and inflammation but nothing nasty (ie not bladder cancer, and kidneys also scanned and ok) and I tried antispasmodics for a couple of weeks which didn't make much difference.

My GP agreed with me two weeks ago that it is IC, and apparently recent research shows a link with contraction of pelvic floor muscles - so physios trained to help with gynae problems can help, by showing you the muscles that are in spasm and teaching you to relax them. I've not tried that yet, but it made sense as mine is better when warm and relaxed, and worse when tense or cold. She put me on amitryptaline (10mg) which helped a little, and then doubled the dose (20mg) which helps a lot.

Most of all though, changing my diet makes the difference. Avoiding chillies, spicy food (sob) and fizzy drinks, and too much chocolate. And caffeine, though I do drink the occasional weak cup of tea. I don't drink alcohol anyway, but expect that would be one to avoid too.

Mine comes back and hovers when I eat the wrong thing, but otherwise is far more manageable at the moment - fingers crossed. It really is depressing and awful living with the constant pain and urgency when its there, so my heartfelt sympathy and good wishes for a less painful year for all on this thread x

I have also spent the last hour reading this thread which has brought back the awful memories of when I first started with my IC symptoms. I too had suffered recurrent UTIs from my early teenage years until I had my children in my 30s when it seemed to calm down. I had a hysterectomy at 40 after suffering years of heavy bleeding and fibroids, I also have always suffered from terrible hormone problems (bad mood swings etc) and the Consultant suggested I have my ovaries removed. I have since been on HRT patches. 3 years later I had a UTI which wouldn't go away and like Vb911 it was unbearable and I would have done anything to get rid of the pain but also the awful FATIGUE which was debilitating and a constant FOGGY HEAD, does anyone else suffer with this as well as the urgency and pain. I also saw a consultant urologist privately in London who diagnosed me but didn't really answer any of my questions about the fatigue/foggy head. I had the urodynamics and didn't see any difference and then tried a gluten free diet which after two days made a huge difference. I was then free from symptoms for 6 months and then it returned !! I now think that the gluten free diet was flucky. I have now had 2 flare ups in a month and I am desperate to find a solution to this awful tiredness and pain. I also think diet isn't a problem with me as I have had flare ups when being good and when eating what I like. After reading some of your posts I am wondering if my HRT is significant. Would love to hear from anyone that suffers with fatigue as well and anyone on HRT
Thanks Sue

After having the cystoscopy, I found out it's not that scary and painful. The key is a experienced doctor!!

Wow, hi everyone! It's great to see that this thread is still so active.

Chrissy42 - your post is heartbreaking; I am so sorry you have been suffering in this way. How are you feeling at the moment? Have you decided to have the cystoscopy? Hopefully that will give you some answers, or at least a definitive diagnosis. As you can see from this thread, there are loads of different treatments to try. I read a few days ago that 50% of people with the symptoms of interstitial cystitis recover, which is promising. But, as you say, it's hard to stay positive when you're feeling so horrible. Please feel free to PM me anytime if you need to chat - bladder problems can be very isolating, so it's always good to speak to people who understand. Sending big hugs.

Elibean - hi! I am so pleased that following the IC diet has helped you. I find it very confusing that diet seems to make such a huge difference for some people, but no difference at all to others... But all the same, it's wonderful that it improves your symptoms! I've heard many good things about Amitriptyline, but am a bit worried about the side effect of urinary retention. I already have quite bad retention and don't want to make it worse... Have you noticed this side effect at all? I really hope that you continue to improve in 2015; thank you so much for your kind words and advice.

lawrenson1810 - I'm sorry that this thread has brought back bad memories. It's interesting that pregnancy helped your symptoms; do you think your problem was hormonal? I do know of a couple of people who suffer from what they call 'brain fog' alongside bladder problems. One girl found that her brain fog disappeared while on long term, high dose antibiotics to treat a biofilm infection in the bladder. I'm not an expert on hormones, but I imagine that the HRT could be very significant. I've read a few things saying that only bio-identical hormones are safe to take. One of the IC support groups I'm a part of recommends a hormone specialist in Bristol - here is her website if you're interested: www.drannieevans.com. I really hope you find some answers soon.

Nancyfighting - I'm so pleased that your cystoscopy wasn't scary or painful. Did it show anything?

Sending hugs, healing rays and prayers for a happy new year to everyone,

Rosie xxxx

The cystoscopy result shows typical Ic data. Fortunately my Ic symptom doesn't become worse after the examination. My volume of bladder becomes bigger to 400ml after the bladder dilation. Although sometimes I still pee not much. And now I can stop guessing what is wrong with me.
I am now taking Urosan which is basically the same as Elmiron. I don't know if it will work or not. But I realized that we can't keep being controlled by IC. I always feel better when I forget or ignore the symptoms. That's Ture!!!
Girls plz have faith in yourselves! We must believe things will become better.

Hi ladies,
Haven't read the full thread, but just wanted to share my success story. I started getting cystitis like symptoms in my mid-twenties (I think possibly triggered by a real UTI after sex). No bladder pain but bouts of acute pain and urgency (the pain was urethral, IFSWIM). In between the bouts, I had constant burning vulval pain, it was agony. I repeatedly went to the GUM clinic but never tested positive for bacteria, STIs etc. once tested positive for thrush (after stupidly self treating with hand cream- was desperate at that point). No one was willing to refer me either, I felt stuck and very depressed. Was able to see a urogynae friend of the family who put me on long term antibiotics (cipro and metronidazole to start with (think the hand cream gave me a skin infection) then cefalexin) and steroids for the skin. I also stopped wearing trousers (sob) and tights (now I cut a hole in the crotch!), stopped drinking anything other than water and if I drank alcohol, accompanied it with massive amounts of water to dilute it. I also went on the low oxalate diet for a while as high oxalate foods made the pain worse. Stopped the pill (hormones definitely have an influence on my pain levels). And of course, when I did manage Dtd, went for a wee and washed afterwards. I also tried to stretch out times between going for a wee, partly because it hurt so much!

It took a long time (was on ABs for several years), but I am now pain free. Still have to be careful and avoid trousers, cycling etc, but it's a small price to pay.

You all have my profound sympathies. I know I lost crap friends because they couldn't understand (and I was too embarrassed to explain) why I could no longer go out all the time and was suddenly so miserable. The pain can be so all consuming. At least it sorts the wheat from the chaff, partner wise. My problems started a couple of months after I met my boyfriend. We are now happily married with 2 small children . I hope you all find the treatments (and doctors!) that work for you.

As others have said, be wary of alternative practitioners- most aren't medically trained. Once you have your diagnosis, use them to support and supplement your treatment, rather than replace it.

Hi Caroline! No, it hasn't affected urine output in any way. But I had a scan to check retention, and as long as I wait long enough, shift position etc I'm alright on that front....so not sure if it would otherwise.

My only side effects seem to be vastly improved sleep, and a bit of sleepiness in the mornings - small price to pay!

Wishing you all the best of health for 2015 xx

@carolineinthegarden.
Thank you so much for your lovely message. Things are improving slowly. I am sticking rigidly to the diet. Off the sleeping tablets. Off the amitriptyline as it did nothing. Take a diazepam at night occasionally. Antidepressant kicked in and feel more positive. Waiting for results from food intolerance testing. Onwards and upwards hopefully. Hugs to all fellow sufferers. Xx

Hi again, everyone.

Nancyfighting - I am really glad that the cystoscopy gave you some definitive answers and that the dilation has increased your bladder capacity. That is certainly good news. I really hope that the Urosan helps you - does it take a few months to take effect, in the same way that Elmiron does? Let us know how you're getting on - I'd be really interested in the Urosan as my urologist told me it's difficult to get hold of Elmiron in the UK.

Bolshybookworm - I love your username. I'm so, so glad that you've managed to get your symptoms under control. It's great to hear of another 'success story' on long term antibiotics, as this is the next treatment I intend to try. Do you think your problems were caused by an underlying infection? Thanks for your good advice re: alternative practitioners. I always check the qualifications of anyone I consult (alternative or conventional) and would only ever pursue a treatment if I understood and believed in the science behind it. Anyway, thank you again for your kind words; your story is inspiring and reassuring. I hope that one day I can be pain free and have a family, too.

Elibean - I'm glad you're not experiencing bad side effects from Amitriptyline. The improved sleep sounds blissful; I can't remember the last time I felt rested! I hope that things continue to improve for you.

Chrissy42 - I am so pleased that things are improving. Long may it continue. Keep us updated on your test results and how you're feeling. I'm always here if you need a chat.

Another huge thank you to everyone who's posted on this thread - you've all been insightful, sensitive, thoughtful and reassuring and I appreciate it so, so much.

Sending all my very best wishes,

Rosie (Caroline's suffering daughter) xxxx

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!

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

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

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

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

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.

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"

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

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.

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)
:-)