Interstitial Cystitis and Me

Interstitial Cystitis is what I have, and right now I will say it has me.
I mean I was diagnosed less then 10 days ago, and I will start from there

After my surgery I waited for hours and hours until the Dr came to see me, he sat down- unlike the other doctors who seen me after the other procedures I have had to know what the hell I was dealing with all these years.
No, Dr Zadra sat down. and told me I have Interstitial Cystitis...
My mind went right to my studies I know what the term means I did well with medical terminology.
you break down the word....

Interstitial Cystitis loosely means swelling and pain of bladder

I got sick in October with a bladder infection.
after my fifth round of antibiotics my pharmacist REFUSED to fill anymore instead he sent me to the hospital, and I work in the store so he would have known if I didnt listen...
When I arrived they were convinced I was passing stones .. the amount of blood in my urine was scary.
and my White blood count high ( signaling infection) and my Red cells low which meant I was likely bleeding internally... So I had a CT scan...
they didn't see stones.
I left the Hospital with yet another round of antibiotics and on Demerol.

but no answers.

I went to my doctor a few days later he told me about my blood levels being wacky and insisted I go in and get blood work done more often to keep an eye on that while he sent me to a Urologist. he mentioned Interstitial Cystitis but was clear it could also be just a BAD infection.
at this point I was sick for 2 months, it was Christmas and we were heading to Quebec to visit family.
So my Doctor prescribed pain pills because that was all he could do, antibiotics didnt work.
I tried so hard not to take them, and I tried even harder to fake that I wasnt living my own personal hell.

In January I met Dr Zadra who agreed to do a surgery to see if I have Interstitial Cystitis. That surgery is called Cystoscopy with Hydrodistention basically a scope in the bladder while they filled it with some fluid to see if it is ripped or torn or has these ulcers called Hunners Ulcers.
I would be under General because this is very painful.
the surgery was on March 19th.

The day I found out that it wasn't a infection. Which I knew or else antibiotics should have worked.
I also found out I wasnt crazy.
the pain I have is NOT in my head its in my Bladder!
so what does Interstitial Cystitis feel like ? well from other stories I have read it is different for most.... but for me it feels like I am all alone. I am alienated. I feel disgusting all the time. I shower so often and never feel clean. I scrub and scrub and feel worse for it. I have to pee all the time and every time I do I am usually on the verge of tears or in full out sobs.
I cant make love to my husband without making him feel horrible because I cant physically enjoy it and often times after wards I have such a bad attack I cant move for hours.




Each day I read something new.
I have cut out my 4 cups of coffee a day down to 1 cup.
I stopped eating citrus fruit even apples

eventually I will feel better.
but right now I am suffering.

Most women have had a bladder infection, Imagine that infection NEVER going away.
that is what I live.

That is my story so far.. but dont Forget it isnt even April yet.. I will figure out how to live through this and not let Interstitial Cystitis own me, but for right now I wallow in self pity.