froglady
03-20-2004, 01:23 PM
is long lol but here is the brief run down.
I started having "pelvic" pain when I was 11 years old, the smart doctors told me it was in my head. when I started getting my period it only got wrse I was constantly missing school and living my life while in bed. At the age of 15 I was diagnosed with reacurring ovarian cyst, ok fine manageable right, nope. From 15 to 19 I was on and off hormone treatment to try to control the cysts but the pain never went away. When I was 19 I was in the hospital 3 to 4 times a week, they thought I was a druggie even though I never wanted drugs just answers. By the time I turned 22 I had 12 surgeries for endometriosis and ovarian cysts. Little did I know I went through more than I ever needed. I went to over 15 different specialists from OBGYN's, to stomach doctors, psychologists, orthopedics you name it no one had an answer. So since it was just in my head, I stayed on my hormone treatments and just learned to try to ignore the pain. Through out my teenage years I had so many UTI's almost every month (what a crock). So in December I started having severe increases in pain and my OB sent me for yet another ultrasound. The ultrasound tech was the same one I had had for years and was not surprised to see me back. WE didn't find any cysts but the tech decided she was curious and did a partial abdominal US. To my surprise she found that my kidneys were inlarged and the doctors thought I had hydro nephrosis. (back wash of urine from the bladder that enlarges and destroys the kidneys) So my OB was shocked that no one had found this since you are most commonly born with it. So off to the urologist I go, the one specialist i had never seen before. So I had to wait a month to see him, it was awful waiting that long thinking I was going to have kidney failure. Finally the day comes and the doctor sends me straight to the hospital of an IVP (shows if you have any free flowing urine any where it doesn't belong) I had none!!! woohoo!!
He was still concerned with that fact that i had so much abdominal pain and agreed to try and help me figure it out. So I had CAT Scans, MRI's, Colonoscopy's, Blood work. And the only thing we coud find was IBS. So he decided that it was time for a cystoscopy. I was so afraid!!! One I didn't want anything put up where it didn't belong, I had already felt so violated by everyone. On top off that I have no insurance so all of these tests and doctors were costing me a fortune, I had a little money saved, most doctors were giving me discounts, the hospital of course wouldn't. I was getting ready to hit red quick. The doctor agreed to do it in the office and just borrow a few things from the hospital lol. So it was going to cost but not nearly as much as being put to sleep up at the hospital. So now I'm more afraid thinking I'M GOING TO BE AWAKE!!???? So the day finally comes the nurse says it won't hurt, I believe her. The doctor comes in and about 2 minutes in I'm in sobs it hurt so bad, the nurse had the guts to say I'm so sorry I forgot some patients experience pain.URG!!! So it's finally over I'm bleeding from places I shouldn't be and I'm sitting in his office.......Yup finally an answer I have IC. It's only been over a month and my life is so different. My biggest frustratons to this point are: I feel like I'm starving, I don't want to see any more medical bills, and the big one of the month....have meds that may finally help end some suffering and no being able to afford them. My doctor and I are in the process of waiting for my approval or denial from Elmiron. I hope that this is now the beginning to recovery and more understanding.
I started having "pelvic" pain when I was 11 years old, the smart doctors told me it was in my head. when I started getting my period it only got wrse I was constantly missing school and living my life while in bed. At the age of 15 I was diagnosed with reacurring ovarian cyst, ok fine manageable right, nope. From 15 to 19 I was on and off hormone treatment to try to control the cysts but the pain never went away. When I was 19 I was in the hospital 3 to 4 times a week, they thought I was a druggie even though I never wanted drugs just answers. By the time I turned 22 I had 12 surgeries for endometriosis and ovarian cysts. Little did I know I went through more than I ever needed. I went to over 15 different specialists from OBGYN's, to stomach doctors, psychologists, orthopedics you name it no one had an answer. So since it was just in my head, I stayed on my hormone treatments and just learned to try to ignore the pain. Through out my teenage years I had so many UTI's almost every month (what a crock). So in December I started having severe increases in pain and my OB sent me for yet another ultrasound. The ultrasound tech was the same one I had had for years and was not surprised to see me back. WE didn't find any cysts but the tech decided she was curious and did a partial abdominal US. To my surprise she found that my kidneys were inlarged and the doctors thought I had hydro nephrosis. (back wash of urine from the bladder that enlarges and destroys the kidneys) So my OB was shocked that no one had found this since you are most commonly born with it. So off to the urologist I go, the one specialist i had never seen before. So I had to wait a month to see him, it was awful waiting that long thinking I was going to have kidney failure. Finally the day comes and the doctor sends me straight to the hospital of an IVP (shows if you have any free flowing urine any where it doesn't belong) I had none!!! woohoo!!
He was still concerned with that fact that i had so much abdominal pain and agreed to try and help me figure it out. So I had CAT Scans, MRI's, Colonoscopy's, Blood work. And the only thing we coud find was IBS. So he decided that it was time for a cystoscopy. I was so afraid!!! One I didn't want anything put up where it didn't belong, I had already felt so violated by everyone. On top off that I have no insurance so all of these tests and doctors were costing me a fortune, I had a little money saved, most doctors were giving me discounts, the hospital of course wouldn't. I was getting ready to hit red quick. The doctor agreed to do it in the office and just borrow a few things from the hospital lol. So it was going to cost but not nearly as much as being put to sleep up at the hospital. So now I'm more afraid thinking I'M GOING TO BE AWAKE!!???? So the day finally comes the nurse says it won't hurt, I believe her. The doctor comes in and about 2 minutes in I'm in sobs it hurt so bad, the nurse had the guts to say I'm so sorry I forgot some patients experience pain.URG!!! So it's finally over I'm bleeding from places I shouldn't be and I'm sitting in his office.......Yup finally an answer I have IC. It's only been over a month and my life is so different. My biggest frustratons to this point are: I feel like I'm starving, I don't want to see any more medical bills, and the big one of the month....have meds that may finally help end some suffering and no being able to afford them. My doctor and I are in the process of waiting for my approval or denial from Elmiron. I hope that this is now the beginning to recovery and more understanding.