It's a whole new world - please share you experience with me

[ecolomba]

Hi,

I am a 27 years old italian architect with a nice life that I am really proud to have put together. I moved to London from Italy a couple of years ago and i got good achievements in personal life and career. I live in a nice house with a very sweet boyfriend.

I managed - not without struggle - to get for myself almost all i wanted, but lately I got into a big crisis!

First I became aware that for years I ignored drowsiness, digestion problems and other discomforts, just to get on with my busy and exciting life.

Then on April this year the real troubles have started. I got an acute cystitis which got away in a few days. A week after, I got a terribly bloated tummy, about 6 months pregnant tummy, plus a lot of spasms and troubles after eating food.

While I started to have a very basic diet for my tummy problems (excluding also lactose and gluten to be sure) I got cystitis again and I was prescribed antibiotics. When after the course I had still symptoms I started to worry.

I still didn't have a private health insurance and NHS doctors just told me I had "post-infective symptoms", also if I had to stay one month home from work for inexistent cystitis!

In the meanwhile with various experiments I got aware that my tummy problem is probably IBS and I got some improvements from the recommended diet and peppermint oil taken every day. (i'll be seeing a gastroenterologist soon anyway).

Last week, finally got my private insurance and I went to the urologist. I was very impressed, in fact he seems really experienced in these kind of problems especially in relation with IBS.

He told me that he's pretty positive that I've got IC and he explained to me what he does usually.

I will have a cystoscopy with bladder extension, and after that (depending on the situation) probably 8 treatments - 1 per week - of bladder injections (from the vagina). I think he refers to cystistat http://www.cystistat.com/en/index.html but I'm not sure.
He also said that i won't have to worry, that we will cure it properly and from Christmas i will be a new girl. 80% of the cases with this procedures have had long term benefits.

From what I've read in this website, I've had mild IC since Idontrememerwhen (frequency and mild discomfort) and now I could define it as "moderate".

First of all, I would appreciate any tales of personal experience about the treatments I will have (I am particularly scared of pain, during after etc).

Secondly, would those treatments solve the problem? And if so, for how long? Will I have a normal life with no pain, normal sexual activity and good pregnancies?

I still haven't digested properly what is happening to me, I guess that knowing more will prepare me psicologically for this unespected really unwanted journey!!

Thanks in advance,
xx

[SandyRN]

I went to the website and I have never heard of this treatment before. We have an over the counter medicine called cystistat that has some antibiotic properties to it and is supposed to relieve the pain of infection....but this is not the same medication you referred to. The site states that this med is not yet approved by our Food and Drug administration, so this is something that is going to be new to most of us. It does sound promising, but it does state that it is only going to relieve the symptoms, not cure the IC. There is nothing that will cure IC as of yet, but we are hoping that one day soon we will have a cure.

I'm sorry that you wound up here because of your health problems but we're happy to have you here. :welcome: to the board.

Sandy

[stef000]

yeah cystistat is out there now i think....
its that sodium hyaluronate stuff....
its under another name some where else too but this is for instills...
heres a better site to look at...
http://www.cobfoundation.org/IC/ICIntravesicalCystistat.html
it does look very promising though...
if you do get it (i forgot who started this thread) so if you get it...let us know how it goes....sorry i forgot your name....
take it easy and take care
hope you find relief soon :pray::pray:
:grouphug::grouphug::grouphug:

[Zygala87]

I doubt anything can cure IC but many things can help us to live a near normal life. First I believe the IC diet is all important. A Hydrodistention did help me greatly. Some people are very against this but we are all different of course. Please ecolmba keep us posted about the procedure. I will always be open to anything new that may help us. Sending all my best to you. Hug, Ziggy

[ICNDonna]

The others are correct in saying that there currently isn't a real cure for interstitial cystitis. However, it's important to remember that, while it can take time to find the treatment options that work best and which foods/drinks are a problem, most of us do --- and most of us feel good most of the time.

My IC was diagnosed in 1975 and I worked full time for twenty years before I took an early retirement when my husband was able to retire. I am still an active person and do very well.

Warm healing thoughts,
Donna