Ic?

[noukie]

Hi,

I am new on this forum. After two urological operations (urethral diverticulum removed, after that a vesico vaginal fistula developed, was closed and a sling was put in) I kept having pain and the pain just became worse. The operations were done in 2004 and now 2 years later, and many MRI's, cystocopys and other examinations later I finally in good hands. Last Monday I got a cystocopy under anasthetic. There was a divertilicum again, but my urologist doesn't believe that causes the pain and urinary frequency. When they start filling the bladder the bladder started bleeding, so they used the ic protocol and took three samples of tissue. After a about 7 hours when I was more awake the urologist came to tell me what they found and he started telling me about IC and also what kind of treatments they want to do. I don't have the results yet from the tissue samples but reading about IC and its symptoms it would explain everything. My former urologist didn't know what to do with me anymore and I allready had an appointment in which he would explain to me the operation for placing a stoma. But the thought of stoma, I am 36 years old, made me decide to go for a second opinion and I am so glad I did. Not that I am happy that it is very likely I have IC, but that I finally know what is going on. For the past years there were a lot of times I questioned my sanity, because everytime it seemed that doctors thought I was overreacting. Over a year ago I also started having pain in my bowels and pelvic pain. I went to a specialist and to fysiotherapy, but it didn;t really help. I went on amytripryline, which helped but it made me so tired and with two small children it is hard, I also took morphine which helped for a while, but then the doses had to increase and that made me sick. So now I use paracetamol codeine, which helps just a little bit and hot baths.
I am lucky I have a lot of understanding people around me, who support and help me, which makes a lot of difference.
I have a question though, has anyone here also had the heavily bleeding of the bladder when filling the bladder during examination?
Don't mind the spellingmistakes, I am Dutch and some words are difficult to translate.
Anouk:confused:

[ICLori]

Welcome, Anouk! I lived in the Netherlands when I was a teenager (my father was stationed at what was then AFCENT, in Brunssum, NL - do you know where that is?) and we lived in the nearby town of Hoensbroek.

I'm sorry for what you have been going through. Some Ic'ers do have a lot of bleeding with a hydrodistention, as you described, especially if their bladders are in very bad shape.

Is your doctor going to let you try Elmiron, or maybe other medicines? Or instillations, to be put inside your bladder to soothe the bladder?

I have tried many medicines now and none have worked for me, I've even tried a neurostimulation device and it didn't work for me, so now I am trying Cyclosporine-A (CsA) which I hope might work for me. Some studies say it has about a 75% effectiveness rate, but it's a very risky drug so you should try everything else first before you try this.

Blessings, and welcome,
Lori

[noukie]

Hi Lori,

Thanks for your reply and yes I know Brunssum and Hoensbroek. I live in the south of Holland near Belgium.
The doctor just told me in short what they are planning to do and no specific drugs have been mentioned yet. I still have to wait for the results of the biopsy, but from what the urologist has told me and from what I have read here about IC it seems very very likely. I am glad this forum exits because it is all new to me and here you can talk to people with the same pains, discomforts and so on and even though I have great people around me they don't really understand how it effects your life and it is hard to explain, especially pain.
Thanks again for your reply, was very needed.
Anouk

[ICNDonna]

First of all, I'd like to welcome you to the IC Network.

There's a Patient Handbook at http://www.ic-network.com/handbook that will help you to understand the test you had done and the bleeding. The test you had was a hydrodistention and it's explained in the handbook.

You'll also find the IC diet in the handbook and I think it would be a good idea for you to begin the diet as soon as you can. Sometimes that really helps.

I hope you feel better very soon.

Donna

[noukie]

Hi Donna,

Thanks for your reply and welcome! Yes I saw the diet and I have printed it so I can see which things should really be banned. I am still kind of in disbelief after all these years of not knowing and I still don't really believe that I finally know what is wrong, also because I was still very sleepy when the doctor told me. I think it will really sink in on the 26th of July when I see my professor and get the results from the tissue taken and what kind of treatments I will get. But I will definitely start on the diet!
Thank you,
Anouk

[noukie]

Hi
I just came home today from 5 day's in hospital, had "intravesicale heparine instillaties" , no idea how you say it in English. They put the heparine through a catheter in the bladder. I was supposed to get this again next week for 3 days and thebn the week after 2 days and then 1 day. But unfortunately it didn't work after 5 days. I have chronic pelvic pain and they suspect IC, because of the pain and the mastcells found and the bleeding of the bladder and history. But it is still not completely clear. I have a great urologist now, he was really sweet today, because I was a bit upset that it didn't help me, which he could understand. He said to me though: You came to us for help and we will help you, that is a promise and don't give up hope, it is not easy and we have a long way to go but we will be there for you! It was a relief hearing that, because it is hard to keep on hoping when you are in pain and nothing helps. I have to go back on the 3th of October and in the meantime two doctors are going to bedn over my case and see what options there are, I allready know I might have to get an operation, but I feel confident that they will do their best for me.
Which doctor are you seeing? I went from Radboud to VU in Amsterdam, professor Bemelmans, he is really good, but unfortunately couldn't help me anymore, but he operated on me twice. I am at the hospital in Antwerp now.
Hope to hear from you, you can also send me private e-mails I think, in Dutch? Well let me know how you are.
Anouk