Re: My story...and Please help me get help.
From: amy (anonymous@obgyn.net)
Fri Apr 19 11:48:53 2002
reading your story has made me so sad for you and for all of us.. I
can't seem to stop crying. I'm so so so angry that there isn't more
kindness in our western medical world. Just one kind word could save us
so much agony. I just want to tell you that you have someone in nyc who
is sending you so much love and support - I would fly down there just to
let you know you are not alone if I could afford it. I'm so sorry for
what you have been through. I don't know anyone in texas, but will ask
my doctors if they do.
I have been putting off my latest surgery since september (8cm endo cyst
on my right ovary) and this morning got the results of my latest vaginal
ultrasound and can't deny it anymore. surgeery is set for June 4. Thank
you for sharing your story - I've been so strong and it finally let me
just break down.
love amy
>
>HUGS K.K.
>
>>I am 28 and have had endometriosis since I was 13, I was only diagnosed
>>2 1/2 years ago after several surgeries and several doctors misdiagnosed
>>me and then finally told me it was all in my head. I finally found a
>>doctor who would listen to me and she suggested that I may have
>>endometriosis, I had never even heard the word before. She preformed 3
>>surgeries to remove it include a cauterization of my uterus (which
>>failed) she tried lupron injections to stop all my periods and control
>>the endo(which failed) I bled longer and more often for 6 months. She
>>told me I was her 1st failure in both procedures. She finally said she
>>had to give me a hysterectomy because the pain was unbearable and I
>>ended up in the hospital for a week. Like most other woman with endo, I
>>had unbelievable pain, it was hard to drive because the pain would shoot
>>down my legs and make them go almost number. Anytime anyone touched my
>>anywhere near my abdominal area I would cry out in pain and sex was
>>almost impossible. No one wanted to do the hysterectomy because of my
>>age, but my doctor and the insurance company finally relented (I have a
>>daughter and had my tubes tied many many years ago) so I couldn't
>>understand why everyone was so worried about 'castrating me' as they all
>>put it. All I wanted was for the pain, nausuea, cramping, bleeding,
>>bloating, fatigue, emotional stress to just go away. Well I had my
>>hysterectomy on 7/31/01 and all seemed to go well, I started feeling
>>better and I was pain free. That is until December 2001, I started
>>bleeding, then stopped, my doctor said that was normal, I don't think
>>that was normal. Then I ended up in the emergency room in January and
>>in Febuary I went into the emergency room for Bronchitis and severe
>>abdominal pain, the doctor there thought I was over reacting and when I
>>started crying because the pain was so severe he finally decided to push
>>my belly, I screamed out in pain and tried to pull his hand off, but he
>>just kept pushing and decised I really was in pain and called for pain
>>medicine after I had already been there for four hours. He ordered a
>>catascan of my pelvic area because he thougt that I was having a
>>appendicitis. I told him I had endo and he blew me off. Well I wasn't
>>having one but on the only femal organ that I have left (my left ovary
>>which several doctors refused to remove because of my age) I had several
>>cycts and the funny thing is the radiologist thought he saw part of my
>>uterus (you see how well these doctors read there files or paid
>>attention to me). I called my doctor the next day and told her, she
>>wouldn't even do a pelvic, she sent me in for a vaginal ultrasound (very
>>very painful) that 'confirmed' for her my cycst on the ovary for severe
>>pain. My doctor told me to take Darvocet and that I would be fine, not
>>to worry. I started bleeding again in the middle of March and went to
>>the emergency room again. I won't even tell you about that doctor, he
>>didn't even know what to do about my bleeding, but he gave me pain
>>medicine and sent me home. I went back to my gyn and she said that I
>>wold have to have a colonoscopy to rule out that it just might be
>>somehting wrong with my bowels. I told her I didn't want to do that,
>>but she said I had to because of my age or else she would not remove my
>>ovary and possibly endo. Well I had that done last Wednesday and guess
>>what?? My colon was fine! They think that my endo is back in full force
>>and on my appendix and bowels. I called my doctor Monday to tellher and
>>fax her the results. I haven't heard from her and now it's Friday. I
>>cannot take the pain and everything else that goes along with it
>>anymore. This is just the short version of all the things I've done and
>>been through and I dont know what to do anymore. I live in Clear Lake,
>>Texas and work for NASA. Does anyone know anyone around here that I can
>>talk to? A doctor who can help me? Anything at all would be so greatly
>>appreciated. Thank you so much for taking your time to read this.
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