interstitial cystitis

LUONATTA

Hiya, I was diagnosed with interstitial cystitis in March of this year. There doesnt seem to be a lot of information or understanding from the medical profession and it all seems a bit hit and miss for treatments. I am curious if anyone else has been diagnosed and what has helped or hindered them in dealing with this condition.
I have encountered various different issues myself and have also found a number of methods that may help other sufferers . if anyone is interested or would like to discuss this condition. ?

Nyberg

I was diagnosed with this about 12 years ago. I have had very little trouble, just the very infrequent bout of cystitis. I have figured out what brings it on, which is mostly certain shower gels, and a naughty weekend ;-)
Generally i find the cheap shower gels will set it off, I would also recommend always empting you bladder immediatly after sex :-)

LUONATTA

Hi Nyberg, ty for your response, I actually forgot about cheap shower gels, so it good to keep in mind. I havent actually found my trigger point yet after 8 months! I have been told this is an inflamatory disease of the bladder with no cure, just treatments to make it easier and bring down pain. 15% IC sufferers also have condition vulvodynia which is nerve pain in the vulva and I have this also I have done the elimination diet , no coffee, tea, alcohol, carbonated drinks, very little I can eat from the fruit section, only pears and coconuts, basically taking out any foods with acid content, chocolate, spices, the list goes on.
I have daily pain which swings from manageable to chronic. I havent had sex yet , it far to painful
I have had 7 treatments of cystitat , this is instilled into the bladder and acts as a temporary protective layer on the bladder in hope that the inflamation is not irritated and hopefully have time to heal. I am also taking natural products.
If anyone out there can add to this would be fantastic , I dont know of any self help groups or organisations in ireland, I think the biggest website is based in USA.
I am so happy for you Nyberg that you dont have regular major issues with this condition

Alopex

Cranberry scientifically proven to help reduce incidence of urinary tract infections. It keeps your urine more acidic so harder for bacteria to thrive. I think would also apply to cystitis

I got UTIs regularly but haven't had any since I started taking cranberry capsules from health stores. its basically a cranberry concentrate paste in a tablet. Real cranberries hard to come by apart from christmas time.

do note - it will not cure an infection but taken regularly make them less likely to occur

Alopex

actually sorry i am not sure it would help with interstitial type - check with a doc

LUONATTA

bless, ty Alopex. yes I agree that cranberry is brilliant for cystitus, but this IC is a different ball game altogether and that is why it is so hard to find any answers and yet I know, that there are many that suffer with this.

The day I was in hospital having the exploratory operation, there was at least 5 people, mainly women that were being diagnosed with this condition and what I find so lacking is information and self help groups or just generally anyone who can share or suggest different methods or anything at all to lessen the hardship experience by sufferers of this condition.

I would also like to share that I have found alternative natural products that may help some. I am currently trying to wean of prescribed medication as none of these have worked for me, and only succeeded in turning me into a veg!!
My ultimate hope in posting here is to get a conversation going about this condition from fellow sufferers and share advice etc..

To anyone reading this and diagnosed with Interstitial cystitisplease share your experience to date as it may help me and others.

rainbow kirby

No specific medical advice please - do feel free to share experiences though.

LUONATTA

rainbow kirby wrote: »

No specific medical advice please - do feel free to share experiences though.

I am so sorry, rainbow, was that directed at me? I am a new member and hope I did not inadvertently break the forum etiquette?

rainbow kirby

Your post is fine (asking for the experiences of others) - it's just a general reminder that medical advice is against the charter. Welcome to the forum btw

Neyite

While I dont know much about intersistal cystitis, the best tip that my Gynae said to me when I had recurring bouts of cystitis is to "double-void" the bladder - basically, at the end of your peeing, wait about 30 seconds and pee that last little bit out.

It seems to fully empty the bladder more than usual, leaving a smaller pool for infection bacteria to regrow? Not sure, but it definatly speeds up the recovery from a bout of cystitis, along with loose fitting/cotton undies, heaps of water and cranberry juice.

Its worth a try for the intersistal cystitis - by the way, my sympathies, it must be so sore - I hope you find relief soon.

LUONATTA

Thankyou Rainbow for the lovely welcome I have never been on boards.ie,my husband suggested it to me, bless. I think he just wants me to have some friends that are understanding of IC as its such a lonely experience. He has been really supportive. It must be just as hard for him as it is for me.

Thankyou Neyite , I definately pee everything out as much as possible, it definately makes sense and lessens discomfort. Sometimes it is hard to go at all though as it is quite painful , like pee razor blades!! ouchiee. I have been told this is bladder inflamation rather than infection and it more or a disease than just the usual waterworks probs that we females get from time to time . I am willing to try anything at this stage and noted an earlier post to mind cheap shower gels, so I will be buying products that may be more friendly. Cranberry, strangely is a no no for IC I have been told as the acid content will further agravate the bladder!!
I have had such random information of what the possible causes are, from post menopausal, heredity. But I know from reading an american website that this IC has no respect for age or gender and can affect young women and men as young as in their 20's.

I havent tried acupuncture yet, this has been suggested to me. And another pain reliever called TENS. I dont know about these two things and what they actually do for pain. But it all worth a try.

Thankyou again for taking time out to reply.

leonie1

Hi Luonetta, i know this thread is a couple of months old but just saw it. I was diagnosed with the big IC three weeks ago, and yes I know, there seems to be very little information in Ireland and among the medical profession. Sure i had to explain the condition to my own GP! So maybe if youre still around this thread we could discuss what helps/hinders. At the moment i am on the elimination diet (would swap right arm for curry and wine). It seems to help. I have also had acupuncture which i think helped with that nasty crampy feeling - dunno if you get that feeling?
It is one huge dent in your quality of life to have IC, and nobody really understands what's going on or how it feels, so as i say, if youre still around let's share!

LUONATTA

Hi Leonie, it was great to get your post. firstly I am so sorry you were diagnosed with the big IC recently but hopefully through chatting we can perhaps make things a little easier. you are not alone!!! It was amazing looking back at my last post which was in July, I have actually improved a little, still getting daily pain , varies from day to day. I am upbeat and dont get too stressed as it can sometimes make the flares worse.
I have undergone cysitat treatments and wonder did you get offered this treatment too and how did you get on ? I didnt notice any difference the first couple times, but by the time I got to 7th treatment, it started to improve , by this time I had researched other methods and natural products that really helped too. I hear you!!!! I want a glass of wine too !!!
also meant to say if you want to contact me by pm i can give you my contact details. I am in Co. Galway.
keep up the fight hugss

hamlet1

my daughter was diagnosed with IC when she was 6 and is 18 now.we worked out ourselves what sets it off,so she now avoids orange juice,fizzy drinks and strong tea.she also found the cranberryjuice capsules helped.when she does all the above she never has a problem now.

LUONATTA

Thank you hamlet for your reply , I do agree there has to be triggers , unfortunately, I havent yet found my answer. I was given a diet/food sheet of do's and don'ts from the hospital and I have followed that. I am finding that it is all so random!! one day, I could have a reasonable day, and other days will be bad and yet I stick to the same foods mostly. I have noticed if I am exceptionally busy/stress or even travelling long distance in a car, it can set of the symptons.
My diet is so bland, and I dont take chances as the pain is so not worth it.
I am so amazed that your daughter was affected at such a young age and thank God you worked it out and I am delighted. truly.
Thanks for the tips, havent explored cranberry capsules, was told it not a good idea but who knows, everyone is individual and could work for some and maybe not others. everything is worth a try.
I am still researching and trying to find answers, it all can be very confusing and since there is no known given cause, it hard to find the answers.
Your news delighted me ,bravo to your daughter

Kimdoll

Hi Luonatta, I know this thread is a bit old but hopefully you will still check it. I was relieved to find someone who is experiencing the same lack of knowledge and help as I am. I have trying to manage IC for two years now, mostly through diet and prescribed amytriptiline. I've had a lot of stress lately though and i just feel like I cannot get a handle on it anymore. My diet had become so restrictive that I just got fed up and ate what I wanted and the tablets are making me exhausted all of the time. My GP is not very helpeful and I have found very little medical information on it. I have scanned the internet for support in Ireland and theres just none. Its really getting me down as I feel so isolated and feel like my health is just deteriorating. I would love a proper support network where we could share experiences and maybe find some help.

LUONATTA

HI kimdoll, i sent you a private message so may email me if you wish. my heart goes out to you , hugs

PrettyPolly155

I know this is really old but it popped up there and I just thought I'd share one thing I found... besides the usual cranberry juice, cranberry sachets... etc.. The main thing I've found that helps is not using Latex condoms. I think I might have a mild latex allergy so since I've stopped using ones made of latex I don't get it as often as I used to. It's worth considering if you haven't before!

LUONATTA

Hi, I noticed there were some responses to thread about Interstitial cystitis and commonly being confused with cystitis.
IC in short is a chronic inflammation on the bladder wall.
cystitis is a urinary tract infection and is usually treated with antibiotics.
The two are in no way related and has to be understood that we are talking about INTERSTITIAL cystitis.
I am almost 2 years on now with IC and have learnt several methods that relieve my pain and symptoms. I found that acupuncture helped greatly with the pain and also taking D Mannose which is a uti cleanser , it helps with low grade bacteria.
I hear you kimdoll. I was also on amytripline and many other prescription drugs and they do help although the side effects can affect everyone differently. i was like a zombie on ammy, but my IC buddy in Dublin whom i met on boards is getting on great with it. Your doctor/urologist would be best to advise you on how to lessen the inflammation. did you get offered cystistat treatments?
If you need support Kim, I would only be too happy to chat to you bout the trials and tribulations of this condition. but i have to say, i got my life back and have learnt to live with it and with careful consideration on diet and lifestyle you will find your trigger points and be able to cope better. I am sorry you are stressed . please do email me at any time and maybe we can start our own support group !

PrettyPolly155

LUONATTA wrote: »

Hi, I noticed there were some responses to thread about Interstitial cystitis and commonly being confused with cystitis.
IC in short is a chronic inflammation on the bladder wall.
cystitis is a urinary tract infection and is usually treated with antibiotics.
The two are in no way related and has to be understood that we are talking about INTERSTITIAL cystitis.

I know this thread is about Interstitial and I know the difference between them. It's just I clicked in originally because I am a chronic cystitis sufferer to see if there was anything I could learn from yer coping mechanisms and I'm sure many others did the same. Apologies.

LUONATTA

its easy to get confused over the 2 cystitis , i wish they called the IC something else to differentiate it. cranberry as a whole is a common recommendation for cystitus , but its a deffo no no for IC as the whole bladder inflamation is about not introducing acidic foods/drinks that can cause "flares" the gag lining is compromised which means, IC is a diet/fluid controlled to lesser symtpons, its a daily 24/7 with sometimes little remissions but mostly have symtoms on daily basis . my urologist told me that cranberries would be like an acid bomb for the bladder.
I did feel sorry for you polly as you seem to get the chronic cystitis and i saw a product in a natural shop called lady comfort, this helps with urinary tract and it may help you. you can visit any health store and check it out. it has cranberry in it, so its no good for us with IC i;m afraid.
how to cope? well tis a daily grind. iceblocks to bring down inflamation , heat for cramps , and no two people are the same with IC, it effects in different way, levels of pains . there are two types of IC , non ulcer which is inflammation and classic ulcerated which the more severe type.
pychologically is very debillitating, some people cant work, drive and pee up to 60 times a day. the pain on chronic IC is on par with cancer and renal failure . we still trying to find out ways to cope , and most of us find our own ways forward, thru diet etc.. i could murder a can of coke sometimes. sigh.
i still rate acupuncture as good thing and it may help for cystitus too although i dont know . i do know for IC its on par of alternative treatments that has given good results.
other than that, keep stress free as much as possible although it hasnt been said that stress causes IC but then stress doesnt help when you have any condition really.
I hope this explained a little more.

LegacyUser

Hi all,
I have been suffering with IC for about 4 years now. It is sporadic when it hits but normally in times of stress & too much alcohol/coffee etc for me. Last year it got so bad that I was in almost constant pain. I have tried everything from surgery, drugs, cranberry tablets, collidal silver (alternative health) Uninary cleanse tablets etc. What I found helped by far and away the most is Skeo treatment which is an alternative health treatment where you get hooked up to a load of electrodes and a computer diagnoses the underlying cause of your condition and treats it. For me they found there was an Amoeba in my system which I had picked up somewhere on my travels and once that was zapped I have been feeling so much better. Treatment is about 80 euro per session but I found it helped me a lot. I wouldn't say I am 100% cured and I need to go back for follow up sessions but all in all I feel like a different person than I was a year ago, lots more energy much less episodes etc. Its about finding whatever works for you personally but I think it would be fantastic if there was an Irish support group for this condition. Does anyone know of one? I was half thinking of setting something up?

LUONATTA

Hi,
I dont know of any support group in Ireland for IC, I think its a great idea if one could be set up , since this condition seems to be becoming more common. I am sure with the many experiences, there will be some common ground. More so, it would be great to just not feel so isolated . sounds like you found some solution , and its great to hear that, obviously you tried so many other things too and gone through the mill, it takes ages to find the right way forward. I have settled on acupuncture and d mannose for maintenance to keep on even keel. i get the odd flare, last one was christmas eve, cranberry and wine , blah. agreed, it is sporadic. and thats what makes it so hard to deal with. I havent heard of skea , but it makes sense. where would someone go for that? and what is the treatment ? can doctors do blood test for amoeba?
thanks

yellowlabrador

I had IC for over 20 years and was cured virtually overnight by going wheatfree.
it's worth trying to find the trigger.

lvsbks

Hi folks,

I found relief from my IC symptoms. First I eliminated most acidic food from my diet and use Prelief, an over the counter antacid when I drink my caffeinated beverage (1 a day). I found that the lining of my bladder has been rebuilt taking Glucosamine, Chondroitin and MSM, the over the counter supplement for joints. I found relief within 7 days! I buy the store brand (usually Target) and take one a day, 500 mgs. Stress, spicy food, tight pants, excessive sitting and long car trips are my triggers. I find it is extremely important to drink tons of water each day as well. I haven't seen a doctor in 7 years (really bad experiences) and it costs me less than $30 a month to feel well. I hope this helps.

amtc

i was so sick of this, and became resistant to most antibotics, even low dose continuing ones.

What works or me now is a gel called balance activ - one application and it clears up...you can get it over the internet. Honestly I was crying with the pain and the stress, as I couldn't tell when it would strike despite doing all the bladder emptying after sex/period, but this is just a dream. It's sold in Boots in the UK but not here, but works wonders.

littlewing88

Hi Ladies
Yes, IC can be a miserable condition but it's reassuring to read all your comments and to know I'm not alone I was properly diagnosed a year ago - although I had already figured it out myself through research. After years and years of being misdiagnosed with UTI's and having so many antibiotics thrown at me, it's sad to say, but I have lost confidence in doctors here - particularly gps as I've found their knowledge of this condition so limited.
When I finally got referred to a urologist, he told me to cut out caffeine and alcohol (which I had done already) and prescribed me Detrusitol 4mg for overactive bladder. That has helped a lot with urinary frequency and have gone from up to 30 bathroom trips per day to 10.
I have read up on how most people are affected by bladder pain the most... However, my worst symtom during a flare up is a stinging/burning sensation in the urethra which can last for weeks. It is a horrible sensation and makes me very irritable. Does anyone else experience this? And how do you deal with it?
I ordered Prelief tablets from America and have started them today, hoping they work and that they will allow me to enjoy an occassional glass of wine / can of coke / bar of chocolate in the future!!!
I would really appreciate any feedback and tips!!!

lvsbks

Hi Littlewing88,

I understand how you feel about drs! I decided they were doing me more damage than good. My symptoms were more pain than frequency. The diet and prelief was the first relief I had in a long time. My stomach was also in bad shape from the antibiotics which I took continuously for 2 1/2 years. Probiotics helped me tremendously with that. I also do yoga for stress relief and to relax my muscles.

A few years ago I started taking glucosamine, MSM and chondroitin which I read about on a board like this one. Within 7 days I noticed a HUGE improvement. I take 500mg per day and buy the store brand.

I know exactly what you mean about urethra pain. I got relief on a trip to Japan using one of those fancy toilets. It sprays warm water right on the spot that hurts! Someone recommended buying a squirt bottle in the pharmacy (there is a sterile one made for this purpose) and squirting yourself with warm water at the end of urination. That does help. I also find a hot pack or sometimes something icy cold helps. I try to drink a lot of water everyday as well and live as stress free as possible.

We are all different so just pay attention to what makes you feel better and what doesn't. Good luck and best wishes!

Charlene_92

I am 99% sure I have IC but am yet to receive a diagnosis. I have to get scans done and doctors won't give me an answer other than that I "must be prone to Cystitis" even though I have all the symptoms of IC.

I find that coke triggers it quite badly, as does not using the toilet often enough (especially after sex). I also read something which seems so silly but actually really works - sit up completely straight when peeing as it empties the bladder fully! I usually would just slouch but since doing this it has made a major difference. Also the cranberry capsules have been my life saver. Since starting them, my cystitis outbreaks have almost ceased completely. I just hope it continues.

lvsbks

Hi Charlene,

Thanks for the tips. I'm firmly convinced we can help each other more than drs can. I have noticed all carbonated and caffeinated beverages are a problem for me. I limit myself to one a day or I would be too lethargic to get anything done, lol. I drink more water when I am sexually active and it makes a difference. I have always been a chronic pee holder as I am picky about bathrooms. I've had to let that go. I'm going to try better posture and see if I can tell a difference.

Margaret monks

I was diagnosed with this horrible condition in 2007 after years of trips to the doc and lots of antibiotics for what he thought was urinary tract infections. I had a cystscopey with bladder distentition and lots of treatments with DMSO and other drugs.,Unfortunatly nothing lasts long term.what I can't get my head round is how random the attacks can be,I can be fine for weeks with just some frequency and then out of the blue I'm crippled with pain and so many trips to the loo that its impossible to sleep no pain relief works.these bouts can last a couple of days or weeks, I can never figure out what triggered the bout sometimes cutting out tea coffee tomatoes oranges can help but not always.