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

[Roandro]

Its just my personal opinion but I think, esp if the uro thinks you only may have a mild case, just an office visit cysto is good for an over all "look around" your bladder. It seems to me that your uro has a very ambitious regime planned fo you!

I have (mild IC) and that's what my urogyne did.

Many people think to really identify what's wrong you need to have the fuil hydro cysto but I am glad I didn't have it as it just doesn't seem like a healthy thing to do - to stretch the bladder to its "n-th" capacity - esp if only a "mild" case is considered a possibility.

I control my condition by following the diet (customized to my own situation), do alternative medicine but I take no drugs for it other than synthetic hormone cream, vaginally, as I'm post menopausal and my tissue is very dry.

[kadi]

Hello & welcome to the ICN :),

An in-office cystoscopy is usually not sufficient to see IC, it's usually done to rule out other possibilities. One reason many patients do opt for the diagnostic cystoscopy with hydrodistension under anesthesia is that for about 40% of the patients who have it done they have symptom improvement from the procedure. I'm glad I had the cysto/hydro done even though I was not one of the lucky 40% because I then had pictures of the IC that I could take to other doctors for second opinions.

Cystistat is not available in the US yet, so I'm not sure about it, but I hope that it is helpful for you:)

If you've not tried the IC diet yet, it's very important in getting better! It has the best success rate of any of the known treatments (87% of patients have improvement on it) & is a great way to work toward your own health by reducing bladder irritation from food.
http://www.ic-network.com/diet/
http://www.ic-network.com/diet/dietcheatsheet.html

For me, the diet is essential, none of my medicines work if I cheat on the diet.

I would like to leave you with a little hope. When I first got IC (I had sudden onset), I was very very sick, voiding 60x a day, unable to sleep, eat, function at all, really. With the help of my doctors, following the diet & my treatment regimen, I am well most days now. I exercise, work full time easily almost all days, wear jeans, travel, and have a fairly "normal" life again. Please know that for every scary post you read on the web here, there are hundreds of IC patients who are out living lives & are doing well & so don't need to be posting.

Sending a hug & wishing you better days soon,