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Charlie

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Posts: 5
Reply with quote  #16 
Hi my name's Charlie and have been suffering with IC since giving birth to my daughter Molly in the summer of 2001.

I had one Uro, that put me on ditropan, which had little effect, and after 6 months of gradually increasing the dosage to 30mg a day, he told me that there was nothing else to be done! - I wasn't going to accept that when at the time I had a 6 month old and 18 month old to try and run around with!

I went and sort another Uro, who I have now been under the past year. At least he was willing to do tests etc.

Since Autumn 2001 I have had bladder distension and 14 (if not a couple more!?) cyctiatat installations. These have worked relieve a lot of my symptoms, but never seem to last for long - but this is all that he seems to suggest as treatments for the condition!

I am now therefore looking for other alternative treatments, and would welcome any and all advice.

Charlie xx
Strimmy

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Posts: 70
Reply with quote  #17 
Having suggested the meet and greet havent added to it so here goes.

Hi I am strimmy i am 33 and live in bucks. I have 4 kids. I dont really know what is actually wrong with me but it is bladdery.

It started with what I thought was cystitis and thrush in easter time this year. It turned our I had a slight UTI and a strep infection vaginally.. After this I never seemed to return to normal again. I dont have pain but had pressure freqency and urgency. I soldiered on and did have a consultant appointmnet. Both the dr and consultant suggested oxy but I really didnt want to go down that route if poss.

I have coped and tried homeopathy which has really helped especially when i was so down over the whole thing.

I am much better althoug I dont think I will ever get back to feeling the same as I was before.

I had a nasty uti the weekend before last and since that and some more medication I do feel much better. I cant find trigger foods and have yet towork out if it is horonally related.

This board has been really greatthank god it was here.
abi

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Posts: 31
Reply with quote  #18 

HI,

I'm abi and have IC for about 3-4 years since being 18, 22 ina few weeks.
First treatment I tried was DMSO which didn't help atall then I tried Cystistat which helped a great deal. I am currently taking Heparin and Marcaine instills.
My symtoms started with an infection with which the symptoms remained.
I also take aloe vera tablets but not sure if they help but they don't make me any worse so I contine to take them.
Cope with the IC most of the time but sometimes it gets me really down.
I am very strict with my diet, only drink water and milk and check the ingredients on everything I eat!
Please ask for any advice / chat.
Thanx
Take Care
abi
xxx
kate

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Posts: 6
Reply with quote  #19 
Hi I am Kate

25 years old, had IC since 15 diagnosed 2 years ago.
Dont have many of the awfull problems some of you get, just frequency and pain only if I eat or drink the wrong things! (which changes from time to time)

Take care everybody

Kate
Cathy

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Posts: 37
Reply with quote  #20 
Hi all!
I'm 17 and have been suffering for about three and a half years now with mainly frequency and urgency. My symtoms appeared for no apparent reason and have never gone since. I currently take cimetidine and amitryptiline which seem to be helping and i am also thinkin of taking desert harvest aloe vera capsules for IC. I found it really difficult to cope with this condition and my age and had a rlly awful summer hols this year had to cancel my hol and was housebound alot of the time! Anyways things are so much better then they were then, i see a counsellor which has helped a lot and my friends are gradually gettin used to it and being more supportive. I'm now rlly positive about it i've got uni offers for next year with help from the disability offices for the unis and am lookin forward to freedom and being able to cope better after having passed my driving test yesterday! Last summer i couldn't even sit through a lesson so i'm doing alrite lol i managed t sit through my test luckily and could concentrate! Hope you are all doing ok this website has really helped me realise im not alone.
Love Cathy x
Erica

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Posts: 37
Reply with quote  #21 
Well done Cathy!

Hi, I'm Erica, 33 and a Community Nurse living in Portsmouth. My symptoms started,like many of yours, after a bout of UTI in October. I have a constant niggly feeling in my bladder/urethra and, when it's bad, cystitis sypmtoms. No pain luckily.

I have a lovely partner who very understanding but I think he does get frustrated with it and he also thinks that it'll all get sorted out after my cystoscopy in Feb but I'm more doubtful.

Thanks to this board I've been able to identify triggers and try some self-help stuff that significantly reduces the irritation (aloe vera being the best) but I am mourning my old self and I feel less optimistic about the future. However, I do remind myself that I'm bery lucky in other respects and I know that other people much much more.

Detrusitol also helps a lot but I don't think let let me have this indefinately.

I think all GP's and Uro's should be made to access this site and particularly this board - they could learn so much and perhaps make connections that could lead to a cure!
Best wishes to all
Erica
x
Dee

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Posts: 2
Reply with quote  #22 
Greetings My name is Dee and I am 45 years young. I live in British Columbia. On January 6th my URO performed a hydro on me and I was officially diagnosed with ICS. At this time, I do not know at what stage he considers my problem to be. I can only tell you that there is significant pain of which I can only compare to razor blades slashing at my bladder. I feel no urgency to urinate, nor do I consider the number of visits to the washroom to be anything in excess of what is average. I have had a complicated health history over the past 5 years. In Sept, 2001 I underwent a complete hysterectomy, only to return to the hospital in April of 2002 where I was suppose to have a laperoscopy to eliminate some adhesions. To make a long story short, I ended up spending 3 weeks in another hospital because I went into respritory arrest. The result, a collapsed lung and phnemonia resulting. In Sept, 2003 I had my gallbladder removed and could not figure out why I didn't seem to be getting better. My latest symptoms left me with pelvic pain and monthly bladder infections.

Being a newbie to this, I guess I will find out more from my URO on my next visit. At the present, I am taking Pyridium 3 times a day to relieve the pain.

I look forward to reading your posts and trying to educate myself to whatever degree possible.

If I can lend a shoulder to anyone, I will most happily do so as I know what it is like to be to hell and back!

Regards
Dee

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Dee Allen
Lilly

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Posts: 104
Reply with quote  #23 
Hi, I'm Lilly, I'm 25 and live in London. I've had bladder problems since a bad UTI last April - since then I've been bed/housebound with pain, frequency, urgency and spasms and generally feeling really ill. I've had numerous tests and a cystoscopy and urethra dilation but nothing has helped or shown what's wrong. I think it could be recurring infections but no bacteria have ever been found.

I've seen a big improvement since I've seen an acupuncturist and a nutritionist, and am now up and about and hope to start work again soon. I've just had my first flare since November so am looking for a new uro. This board has been a total lifesaver for me, I found it when I was really low and a lot of the suggestions on here have really helped. Thanks!
eve

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Posts: 1
Reply with quote  #24 
have suffered from pelvic/bladder pain for last 25 years, which i thought was reacurring cystitis. went literally 100s times to drs and no reason was ever found for my pelvic pain. i even thought i was going crazy as test after test were negative. 5 years ago got a particilarly bad attack of constant bladder pain , stinging.soreness constantly going to the loo, the only pause in pain was when i actually went to loo!!!to cut a long story short, i had a colostomy and biopsy on my bladder...nothing found negative, but im still in agony!!! i was convinced then that it had something to do with my womb as i was having periods every 2 weeks, any way had hysterectomy, and you guessed it same pain still there! i came across this site and i just no that this at last is my problem. havnt been to dr about this for 5 years as had given up all hope and just learned to live with it,has anyone else been in my position? ive been reading your site and i was thinking this is what ive got,why has nobody found it out? ive been having worse attacks lately and will go to the dr and hope he will at least let me try one of the medications before i get bad again, i feel embarrased to admit that one night i even thought of throwing myself out a window as i was in so much pain, and if you knew me that is so out of my character as im a prettty strong person,.im thrilled to find this site and though not good on internet will keep up with this site,first time ever i have logged on to anything!!!eve
ClaireB

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Posts: 2
Reply with quote  #25 
Hi,

My name is Claire, I was diagnosed with IC about 3 years ago after going through numerous tests. About 18 months ago i had rimso treatment which was fantastic - i was completely free of symptoms for about 1 year then we went on holiday to Tenerife in July 2003 and i had a really bad flare up - but when i got home i was told that i did in fact have an infection which is not the usual. Since then i seem to have gone downhill and have had several flare ups. I also feel like it is there all the time waiting to start.

I have been taking amytriptylene and cimetidine since July but they seem to be stopping it from getting as painful as before but still uncomfortable.

After I have an attack i become frightened to even leave the house incase it may start. I am also scared to plan anything incase i dont feel well enough.

I have a really supportive husband and two lovely girls aged 10 and 6 which helps. I only work 2 days a week now which doesnt make me feel so panicky - if i dont feel well i can swap a day.

I was seeing a really lovely helpful doctor Mr Onwude but he has now left and i seem to see somebody different all the time who doesnt seem to know much about IC. The most recent one i have seem tells me he doesnt believe in the treatment i have had and therefore doesnt want to repeat it.

It makes it easier to know that there are many people feeling the same way and that for the years i spent suffering only to be told Im afraid theres no infection so nothing can be wrong.

I eat very healthily, very rarely drink alcohol (dont like wine), play netball and golf, dont smoke.

I was hoping to get an tips from anybody as to what helps.

Thanks Claire,
genniam

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Posts: 5
Reply with quote  #26 
Hi, everyone! My name is Jennifer, 28, and I just moved to London from Florida, USA. I've been having IC symptoms of burning, frequency, and pain for about five years with periods of 'remission'. Luckily, I was diagnosed with IC last July by a specialist in FL and started a strict diet, elmiron, guaifen (something that might not be used over here) and amitriptyline. Also, I am a newlywed of five months and am having a hard time emotionally dealing with my inability to be initmate with my husband. I am just too sore. I am finally seeing a doctor in London this friday after waiting for five months. I am a bit concerned about the differences in treatments prescribed in the UK compared to the USA, but I am keeping my fingers crossed for a knowledgeable doctor. I am so grateful for this forum and for all the support. I read it often, but reply little because I feel so new to all of this. However, I am here and I do understand how daunting all of this can be.

Jennifer
christy

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Posts: 1
Reply with quote  #27 
Hello to all:
I was diagnosed with interstitial cystitis about 1 month ago. It all started around July. My Dr. thought it was a UTI but found out later that there never was an infection. He scheduled an IVP. Had that done. No bladder or kidney stones. He finally got me in with an urologist. Had cystoscope. Diagnosed with IC. This was a month ago. I was put on Elmiron with a P.R.N. presciption for Prosed/DS for pain. It turns your urine blue. But of all the things that has helped me tremendously is Tagamet. I used the over the counter which is 200mg. until I could get to my new primary physician. When I went to him I told him about the alnost instant relief from the Tagamet and if I take it 3 times a day it works better athan any pain medication. He then gave me a prescription for the 400mg that you can only get from the pharmacist. The way that it works is that after it leaves your stomach the remains is excreted in through your urine. I guess there is enough left to coat the wall of the bladder. I am hoping that this Elmiron will work. I have only been on it for about 3 weeks and I know it says it takes about 6-9 months to tell the difference that it is working. So as long as I take this Tagamet, I am able to function without many problems.
I do have a questions for anyone on Elmiron. I already have irritable bowel syndrome and suffer from intestinal crampsbut, has anyone with or without IBS noticed that Elmiron causes abdominal cramps?
If anyone out there has not tried the Tagamet, TRY IT!!!
If your Dr. does not write a prescription for the stronger strenght, try the over the counter tagamet.
Looking forward to messages from all of you!
Christy
LMenzies

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Posts: 15
Reply with quote  #28 
Hi
My name is Lynda and I am 57. Following an early menopause at 37 I very soon got vaginal dryness and urethral pain. I was immediately put on HRT which gives me migraine. I tried using vitamin E oil capsules which worked for a while. A year ago the urethral pain was so intense that I couldn't sit down or go to work and needed to pass water every few minutes allowing me little sleep. The test on my urine showed no bacteria present and they put me back on HRT which eventually eased it. I have now had two more incidences and find the pain all consuming and depressing. Has anyone else of a similar age found relief from HRT? The thought of a cystocopy is terrifying as I know inserting anything into the urethra is likely to cause me more pain afterwards. The HRT contains testosterone which is causing my hair to thin and giving me a beard growth. Looked at Laser Hair Removal, but the hair is coming thru' strong and blonde so they couldn't help. Having read some of the messages on this board has made me feel less isolated and I was wondering if anyone else is having similar problems?
Lynda
bethany

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Posts: 5
Reply with quote  #29 
Hi,
my name is Bethany and I started having bladder problems when I was 17, I started with frequency, the pain arrived and rapidly progressed about a year or so later. I had cimetidine, cystistat, rimso, and emda instillations. None of which were successful. I was unable to leave the house, apart from the hospital visits, which were very distressing. In september I had my bladder removed and reconstructed using bowel, (a studor pouch). I was in hospital for nearly 3 weeks, and have been back since a couple of times, due to infections and problems with emptying. I have to self-catheterise now. At the moment I feel it was all worth it, but I'm keeping my fingers crossed that this continues. I've heard from people who have had to have theirs removed after 18 months, and there is a chance of malignancy after 5yrs.

I'm 21 now and hoping to go to university this september.

I found the boards really comforting when I was suffering with IC and will continue to use them
Jodi68

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Posts: 1
Reply with quote  #30 
Hello, my name is Jodi and I have been back and forth from gynecologist to urologist. The urologist said I had a fibroid from reading the ultrasound report. The gyn said he read it wrong and no I didn't have a significant fibroid. So now I go back to the urologist. I haven't had any pain, just pressure and frequency, more so at night. They gave me urimax which has helped 100%. I don't think I can take that forever though, I can't imagine peeing blue forever, I'll feel like a smurf. They may do a cytoscope next week. What are your experiences with this? I'm so confused and frustrated with the doctors and nurses. Anyone who can share their similar experiences would be greatly appreciated.
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Jodi Young
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