Interstitial Cystitus

hi Mary

I have IC as well, and have had it for a couple of years. I was told that cranberry, although its good to keep away urinary track infections, is NOT good for IC.

Have you gone to a urologist? I've had a distension, I've been on Elmiron, I've had instillations...still haven't quite got there, as far as sometjhing that really works.

I'm now on a fentinyl patch and take percosets. I'm still researching everything.

Good luck.

See a specialist

Rebecca

Hello

I have had IC for about 4 years now. Cranberry did me no good whatsoever. I am about to have a distension (in a month's time) and I would love to hear from anybody (like Rebecca) who has had this procedure done. My life has been taken over by this dratted condition and night and day I am always looking for the nearest toilet!! My urologist has suggested this procedure, and I am pinning all my hopes on it. I know it can just last a few months, but even short relief will be an answer to my prayers

Do let me know what happened to any of you out there !!

Jo xx :?

I have suffered with IC for about 14 years with ocassional baterial cystitus. I have had 2 bladder distentions, the first didn't work the second helped.

In the last 4 months I have suffered very severe symptons. Extreme pain and frequency up to 30 times a day. As many as 7 night time voids. I am going back to see my consultant but in the meantime decided to try being caffine free. The results have been dramatic.

Day 1-4 I saw no improvement and had fairly bad headaches, day 5 a noticeable reduction in pain and burning. Day 6 no change to day 5. Day 7 again further reduction in pain and also improvement in frequency only up 1 time at night. Day 7 the same but no night disruption. By day 9 I had no pain at all and frequency is about 8-9 times but no night voids.

I have been drinking Redbush tea, peppermint tea up to twice a day each. Water for the rest of the time.It is worth a try and worked for me.

I was diagnosed in 2002, but the symptoms began a decade earlier. I am now totally disabled due to the pain from the urgency and the frequency that can be as much as 40-50x's daily. I've had every conservative treatment known for this disease. I was 41 when I became disabled from it seven years ago. My symptoms began suddenly after having sugery to removed a prolapsed uterus . I think the problem was already there, the urinary cathater just made it symptomatic. I have to go to a pain mgmt. clinic every month for narcotic meds. to try and control the pain. I also go for pelvic floor therpy, to try and increase my muscle strength and keep my bladder from contracting. I am on a very strict diet and cannot leave my heating pad for more than a few moments to to the bathroom, when I'm having a bad day. The other thing no one, including the physicians, ever mentions is the severe negative effects to your overall health and the speedy decline of your physical conditioning. I have alot of depression from dealing with this, it has totally changed my life, even though I was fortunate enough to have health insurance and disability insurance. I strongly encourage anyone going to the bathroom alot to see a urologist immediately. I didn't pay that much attention to the number of times I was urinating a day, until I woke up one day and felt like I had broken glass in my bladder. Once IC progresses to that point, it is very hard to treat.

I believe I have had this condition for as long as I can remember and I am 38 just now. Just had a diagnosis last week of interstitial cystitiis following a vaginal tape insertion and bladder stretch. Only 5 days now post op and some definite improvements - the best being not going to the loo every too minutes and I had a lot of accidents especially when exercising.(hope this stops) It hasnt all been plain sailing as initially had some retention and I am on antibiotic. I would like to hear from anyone who has recently had this procedure and any thoughts on affects of diet on condition - told to not take fruits, tea, coffee, chocolate, spices and wine!

Ems

Hi ems,

I had the procedure 2 weeks ago, I also had retention and was then put on antibiotics, of which the first 2 didn't work.

I have 4 left to take but forgot to take one yesterday and I had a different pain down below from what I have had before, like a pain when I walk.

I have actually felt worse since the procedure so I am interested to hear that you have seen an improvement.

How were you coming off the antibiotics.

I am beginning to wish they had never touched me but hoping in time it will begin to improve post op.

I am seeing the urologist next Wednesday but I am not expecting any revelations treatment wise.

I don't drink caffeine, eat chocolate, tomatoes, citrus, spicy food. Just water and milk really.

I am on amitrpilyne which before my op was keeping it under control with a couple of flair ups around period time.

How are you getting on now? Xx