it's official

[AnayisNin]

After 98 UTI's, and a lots of years of pain...a cysto, hydro, urodynamics, 76 lbs of antibiotics and a lot of frustration, I am officially diagnosed with IC.

I'm a little scared about all the new medicines and the instillations. I'm nervous that nothing is going to work. I'm scared for more flares and I'm scared that I will not be able to have a normal sex life.

It's a lot to take in and it's difficult because people don't know what this is and can't understand when you explain it.

I just want this all to go away. I hope it does!

[hoping4acure]

HI! and :welcome:

It is overwhelming at first, but at least you got dx'd...that's a start. Please see the links below and try to stick to the IC diet.

We are here for you. This is a wonderful site and a super support group. Remember most of us have been where you are, and can answer your questions.

Keep the faith...you will find what is best for you, there are SO many different treatments out there, and I am confident you will find what's best.


:grouphug:

Louann

[traceann]

I am glad to hear you finally got an official diagnosis! :woohoo: At least now you can get on the proper treatments and get feeling better soon! I think we all have said and agree that the time around and at diagnosis is the WORST! Once you get on your meds, you can get working towards getting it under control.

I too had all kinds of fears at the time of diagnosis, would the pain be like this forever, would I feel like this from now on, and like you I was worried I'd never have a normal sex life again! Happy to report that my fears were proven to be not true. I feel much like my old self, and the sex life is fine. Just in the beginning it took some creativity to keep the spark and the closeness and intimacy alive. But, with lots of communication we managed wonderfully. My best advice is don't expect to be in pain, etc. Expecting it adds stress to you, most times needlessly. And if you expect it, the brain can make it happen for you some times. I started to fall into the same trap, but my hubby snapped me out of it. When I'd start to flip out over it, he'd remind me that it hasn't happened yet, so don't worry about it, and just because it happened to someone else doesn't mean it would happen to me. He reminded me to keep positive that the meds would work and I would feel better. Just the other day when I mentioned that Thanksgiving was my 1 year anniversary of being diagnosed and on my meds, he started teasing me about how much I worried back then about all the horrible things I just KNEW would happen - and none of it did... :biglaugh: :bonk:

Well, once again, congrats on an official diagnosis! You are on your way to feeling better, I just know it!!

Hugs!
:)

[boohiss13]

Anais Nin?

I saw that and it JUMPED out at me! I adore her!

I'm so sorry about your diagnosis....but maybe now you can start to get some help finally! 98 UTI? My God, honey, is something ready to fall off? Bless ya! I'm new too; just dianosed a few months ago. Everyone here is REALLY nice and my Uro didn't know diddly and reading around here has taught me a million things, just in my first DAY!

So try not to be too upset.....there are alot of really nice people here. I was really scared, and still am, but it makes me feel better just knowing these people are here! Ask all your questions...someone will answer them!

I hope you start to feel better!

Peace of heart,
Boohiss

[m123]

After 98 UTI's, and a lots of years of pain...a cysto, hydro, urodynamics, 76 lbs of antibiotics and a lot of frustration, I am officially diagnosed with IC.

I'm a little scared about all the new medicines and the instillations. I'm nervous that nothing is going to work. I'm scared for more flares and I'm scared that I will not be able to have a normal sex life.

It's a lot to take in and it's difficult because people don't know what this is and can't understand when you explain it.

I just want this all to go away. I hope it does!

Don't worry. If one treatment doesn't work, then you just try the next one. They key to it seems to be to stick to a treatment even if it doesn't seem to be initially working. Many people have had great results, where their severe IC became mild and painless after treatments. Also, diets keep flares away.

Besides, just because there is no cure for it now doesn't mean there never will be. ;)

[SusieQ045]

welcome!!!
i agree with the others posts. now that you have a diagnosis then your treament will be aimed at that. and hopefully you will find something that works for you. but also remember that some things work for some people. dont think that just because one thing helped someone that it would help you. that was the hardest part for me. i would try the things that the doctor said "usually work for people with IC" and i found no relief. like every one else said good luck adn welcome to the boards.