The COB Foundation

So Confused

sonya23 — Fri, 09 May 2008 11:46:54 GMT

Hi Everyone
i had a cys scope last week and my uri confirmed afterwards that i had IC. she said to up my dose of ami and she would send me a letter when she recived the biopsy results .
I recieved her letter today that stated the cys scope showed chronic inflammation of the bladder but however did not confirm IC . She stated i have to continue with ami and can start taking antibs again if the ami alone does not settle it .
Help!!!!! does this mean i have IC or not im so confused and im not scheduled to see her till July

Forum: Interstitial Cystitis

For Fiona who sent me the email

Taran — Thur, 08 May 2008 22:11:23 GMT

Fiona,
Just a thanks for your email - I tried to reply but it came back as "unknown"

Forum: General Topic Forum

In chatroom till 9.15 pm Thurs

DawnCOB — Thur, 08 May 2008 19:42:06 GMT

Im in the chatroom till 9.15 pm if you care to join me.

best wishes

Dawn

Forum: General Topic Forum

Contraceptive pill and cystitis?

Fifs — Thur, 08 May 2008 17:17:32 GMT

Hi everyone,

Bit of a random question, but has anyone found out whether their cystitis is linked to the pill?
I'm still waiting to be diagonosed, but have realised that I always feel fine just before my period when I've come off the pill, and it starts again when I start a new pack.
Anyone else find this? I'm considering coming off the pill, or changing to a new one. I take Brevinor, which a combined oestrogen and progesterone pill.

Thanks!
Fiona

Forum: General Topic Forum

pregabalin and amitriptyline together

lancaster — Thur, 08 May 2008 11:21:01 GMT

I remember someone questioned if they could take pregabalin and amitriptyline together. My doctor has advised that for me today. I am on the full amount of preg - 600mg and am to take 1 ami in the evening and can go on to 2 next week. The preg helps with the pain signals but I am still getting low level burning in the bladder and the urethra not just burns but gives awful sensations which seem to spread all over my body and then I become very agitated. Anyway, the gp believes adding ami to the preg will help relieve this. So, I just wondered if this answered anyones questions Liz

Forum: General Topic Forum

Barking up the wrong tree?

joyden99 — Thur, 08 May 2008 06:49:01 GMT

I have been suffering with IC for more than 20 years.
I have tried most "treatments" none of which have troduced much relief-tolterodine, oxybutinin,trospium,amitrpytiline(which made me feel ill),D mannose,atarax. Treatments which gave me temporary relief were bladder extensions that only lasted about 3 weeks, all of which seems normal for IC sufferers.
My main symptom was a pain in the appendix area which increased in severity until I passed urine.Very strangely if I managed to hold my urine until it was excruciating this caused me to have to open my bowels!
This made me think that IC was as much a bowel problem as bladder problem,especially as I had always had almost incurable constipation.
Whenever I tried to use strong laxatives I was put into considerable pain and my IC flared up.I tried fibregel,figs,prunes a high fibre diet without result.It was'nt until osmotic laxatives became available that I got any result,because although they(Lactulose end Movicol)releived my constipation they only gave me slight relief from IC and sometimes even made it worse.
However in 2004 I found blood in my motions and was sent for a barium aenema.I was told that I had a "redundant colon",it was nothing to do with IC;it is uncurable ; and I should take plenty of fibre in my diet and drink plenty of fluid!
When I looked up redundant colon on the net,the artist impression looked almost horrific and it was much more swollen than normal.This sent me back to my previous conclusion.Here I had a possible cause of IC -that the colon
was pressing on the bladder,it also explained other symtoms such as low bladder volume;inability to pee straight(although this could be normal for men)so I continued my treatment with movicol.
Now I have not exactly cured my IC but have improved it considerably- I can go without having to rush to the toilet for up to 3.5 hrs,my bladder volume has increased from 65mls to 200mls,and I can pee straight.
Unfortunately I still have flare ups but still not as bad as they used to be.
I have thought that colonic irrigation might work as well,but at 75 per treatment and needing to have more than 6treatments I think it is too expensive

Forum: Interstitial Cystitis

Can bladder probs cause missed period?

jaynee — Thur, 08 May 2008 00:05:09 GMT

I went to the doctors today because my period is 10 days late.( It's never been late unless pregnant.) I also have terrible pains in my kidneys and bladder. I have been trying for a baby and taken a test which was negative plus I don't feel pregnant.)
I thought I must have a UTI as the pain was so bad but the doctor said there was only blood in my urine, no nitrites or leukocytes.
I am thinking I might be on the menapause and that's why I have missed a period but don't know why that should give me kidney pain.
I did suffer kidney pain before I started amitriptiline but now it doesn't help at all.
I was always lead to think that pain was a warning signal that the body was in danger but I have had tests done on my kidneys which said there is nothing wrong at all.
I have got to go back to the doctors next week for a swab test to check for vaginal infection but it will probably come back negative.

Sometimes you try to be optimistic that you are getting better and being happy with less pain and something like this happens and knocks you back down again.

jaynee xx

Forum: General Topic Forum

acupuncture in berkshire?

trotters — Wed, 07 May 2008 18:32:28 GMT

hello, i want to try acupuncture for pain relief and wondered if anyone in berkshire had been somewhere they could recommend? I am in slough but prepared to travel anywhere really! thanks!

Forum: Interstitial Cystitis

Why does this happen?

Sue45 — Wed, 07 May 2008 15:47:52 GMT

I'm convinced I have IC but still have to go for tests to prove my point...
Every time I have a flare it starts in my bladder but the pain/burning/irritation always spreads to my urethra & beyond...
I end up being really sore 'down below' long after my bladder seems to have settled. I used to think it was thrush after taking more antibiotics than usual but having had swab tests for this several times which have come back negative I've stopped wasting my money on treatments for that.
I get the impression I'm not alone in this.
Can anyone explain why this happens?
If IC is treated does it stop this happening as well?
And finally, does anyone know of a reliable solution as I feel like I've tried everything?

Forum: Interstitial Cystitis

travel insurance

ange — Wed, 07 May 2008 15:08:06 GMT

I am absolutely gobsmacked!! For the first time ever, I am covered for IC by my travel insurance! We didn't go with our usual company this time because we are going by train to the south of France and wanted to be covered for missed connections, so I had to hunt around. Usually I'm not covered for IC and just take everything I might possibly need (antibiotics, painkillers, catheters, as well as the usual stuff I take). This time, when I spoke to them about my pre-existing condition, they not only had IC on the list, but they covered me for it - at no extra cost. They also covered me for my retention problem. I'm very impressed!

Angie

Forum: General Topic Forum

You can enjoy holidays with IC

CaroleC — Tue, 06 May 2008 21:17:39 GMT

I went on my first 2 week holiday since being diagnosed with IC, flight and all, but we were in a villa. Bristol airport Hopeless food, only one place would give me hot water and milk for my Red bush tea. Took sandwiches, raw veg and pear on the flight. Stuck to IC diet by taking extra case with things I knew I couldn't get-pear juice, plain oatcakes, red bush tea.. Barbecues no problem and I relied on tinned sardines and tuna and potato with salad for lunch while the rest cooked tapas type meals(I used to love tapas)

We ate out in restaurants some evenings, I was worried about that. They were very good, giving me plain meat fish, salad/veg but no starters were suitable, I had vanilla icecream for pudding. Only one restaurant had food that gave me a pain

I had listed in Spanish all the food and additives etc that I had to avoid so I could shop safely. Also the relevant phrases to explain why and what I was able/ not able to eat.

Now I am wondering if I could be OK in one of the big hotels that have a huge food choice.
Who else has holiday experiences they can share ?

Forum: Interstitial Cystitis

being pushed in the wrong direction?

lancaster — Tue, 06 May 2008 15:04:06 GMT

Has anyone else felt they are being forced down the wrong road? I saw a urologist who, on finding nothing in the bladder, said it could be a gynea problem or nerve pain. This was because straight after the cystoscopy he examined the the vulva area and because the urethra was burning away, everything seemed to hurt. This was the last I have seen of him. My doctor latched onto the nerve pain idea and is giving me pain blockers for that, at the same time referred me to a gynea consultant. I saw him and he did the usual examination and seemed to have taken my statement that the area around the urethra does not hurt when touched, but is painful all the time. He then sent me for a transvaginal scan, which is clear, and wants me to have a urodynamic to look at b ladder function. But what worries me, his letter to my doctor says I am presenting vulvodynia type problelms although my main symptoms at present are relating to the bladder, and the rest of the letter concentrates on the vulva, saying he may send me to a colleague who is an expert on vulvodynia. How does this relate to the burning in the bladder and urethra after a bad infection 4 months ago? Unless I am wrong I feel that I am being pushed in the wrong direction here. I don't have problems with anything other than the urethra and bladder, so why do I need to see an expert on vulvodynia. I am so confused and feel that the things that are hurting and burning away, and hating to wee because of the effect it has, are now being ignored. Anyone else had this ? Liz

Forum: General Topic Forum

Antibiotic Resistance and Yeast

sonya23 — Mon, 05 May 2008 19:29:36 GMT

Does anybody know anything about antib resistance if you stop using a antib and then start using it say 6 weeks later will the bacteria have built up any resistance to it . Also does anybody know if a yeast infection can give you the same symptoms as IC eg constant need to urinate and pain
Thanks for reading Sx

Forum: Interstitial Cystitis

Thrush

madeline13 — Sun, 04 May 2008 18:46:12 GMT

Hi I read somewhere on here that someone else is suffering with thrush and can't get rid of it. I am so down I could cry and i'm not at the Drs until weds. When I treat myself i'm better for a day and then it comes back, its got to be all the antibiotics i've had. Does anyone have any tips? I've tried yogurt and am considering tea tree oil. Pure Aloe Vera helps soothe for a short while.

Forum: Interstitial Cystitis

Is there a cure for OAB?

OAB — Sun, 04 May 2008 17:53:42 GMT

Will my OAB ever go away? Detrol doesn't work and nor does the excercises. What can I do?

Forum: Overactive Bladder Syndrome