endometriosis and Interstitial cystitis

[Shannon]

Hi my name is Shannon and I am 24 and have been dealing with
endometriosis and Interstitial cystitis (IC) for 3 years now.

I have had 3 laparoscopy and hysteroscopy.

The first surgery occurred because I had pain in my abdomen so I went
to the doctor and they did an ultrasound which showed that I had
fibroids this surgery was done by a gynecologist that did not do a
very good job of removing the fibroid (as I found out during my 2nd
surgery) and said that I had a little endometriosis but it was nothing
to worry about. I was actually not in pain for about 6-8 months but
had alot of bladder infections at least 2 a month but on occasion they
would say that it wasn't a bladder infection (as I later found out it
was pain and discomfort caused by the Interstitial cystitis).

After the 2nd surgery which a large fibroid was removed and some
endometriosis was taken care of the gynecologist Dr. Schad put me on
Lupron which is a shot that you get once a month in order to stop your
menstrual cycle, the medicine puts you in menopause and made me have
hot flashes, mood swings and I was very weak I had no energy my job
and life really suffered from it. I don't understand why the doctors
can't just put you on the birth control pill and have you take it
consistently with no sugar pills (this method will stop you from
having your menstrual cycle and you won't have to be put in
menopause).

The Lupron and the 2nd surgery did nothing so Dr. Schad decided we
have one more go at it and did the surgery again he said that he took
care of some of the scar tissue and said that the endometriosis had
actually gotten a little worse so he took me off the Lupron since it
didn't seem to be helping.

I continued on in pain and figured most of it was from endometriosis
and some scar tissue. I have gone to a few different specialist and
had test run I went to one gynecologist who did a test to see if my
fallopian tubes where open and the left one is shut due to scar
tissue.

All the doctors couldn't explain why the pain is on the right side of
my abdomen and the endometriosis and scar tissue is on the left side.
I have been on and off pain killers for 3 years and it sucks I don't
like the way they make me feel but if I don't take them I can't even
walk or move around comfortably.

Finally 2 months ago (September 2004) Dr. Schad made me take a short
multiple choice test which is produced by Elmiron I scored like a 25
which he said he thought might happen basically the test ask you about
your symptoms. He then said he was going to perform a cystoscopy with
hydrodistention (he ran a scope into my bladder through my urethra and
stretched the bladder by filling it with water) and took a biopsy of
my bladder. Finally during this painful procedure he said "there you
see that" when I looked at the screen I saw what looked to me like
inflamed and red irritated veins in my bladder he said that is what he
is looking for. He then gave me antibiotics because he said
unfortunately the procedure will most likely give me a bladder
infection which it did but since I was treating it right away it
wasn't that bad.

He put me on a medicine called Elmiron which they say you start to not
have pain after about 4-6 months of taking it. Well I had to quite my
job because I just can't work the way I used to. So I no longer had
health insurance so I took the Elmiron for a month then my mom found
out about this prescription assistance program through Ortho-McNeil
who are the makers of Elmiron so I qualified and I will be getting
Elmiron at no cost. I don't know if this medication will work because
I haven't been on it long enough but I have nothing to lose by trying
it.


Currently I can barely work and live life due to the pain that I feel
on a daily basis. I used to be a really good sales person now it is
hard enough to work 20 hrs a week as a receptionist. I am getting
married in August 2005 and I want to be able to glide down the aisle
with ease in my body and be able to have intercourse on my wedding
night without pain and crying. I have to fight a fight everyday with
my body and my mind and I have been fighting for to long to lose.