*Greenlee* (nabba) wrote in endosurvivors,

my experience for reference

Feel free to ask questions or contact me through the ways listed on my info. This is kinda scattered, but I wanted to put it out there for reference for others:
When I had the consult with the guy who did mine he was doubting of me and what I was telling him and told me that it was only "likely" that endo was my problem. I mean, I started periods when I was 9 (I'm 21 now) got on Provera at 17 and haven't had periods since, but when I was 14 I started on the pill because I was missing 3-4 days of school a month because my periods were so painful and extensive, then started having problems on the pill. My gyn I was seeing then must have been thinking endo was a possibility but she never said anything and she switched me to the depo and my problems went away until about a year and half ago.
But the doctor who did my surgery was an asshole. He wouldn't take my calls, he just kept calling me in more pain meds - I take pain meds daily anyway and he was giving me ones that have never worked, even though I told him that - and he refused to treat me when I wouldn't take the Lupron. It's like $500 cash price, and I am on free care from the hospital (so I have to try and stay in their network) and they don't cover prescriptions. He knew this and wanted me to get the DL every month for 6 months so that he'd get another $3000.
I had surgery (lap) on Mar 8th which diagnosed my endo. It was on my left ovary and had adhered my bowel to my pelvic wall. Well all the problems and symptoms I'd been having prior to the surgery only went away for about 10 days. I spent a weekend in the ER. It has now been almost two months since my surgery and there is a clear distinction of swelling on my left side, its generally warm-hot to the touch and has me doubled over in pain at least once a day, wakes me up, causing fevers (I have to sit in my underwear with a light blanket and its in the 70s here) to try and stay comfortable. Friday I'm going for a second opinion. I had 3 days of painless sex 2wks after my surgery. Every time I have an orgasm I end up with cramps for at least an hour (and I'm a multiple girl), not to mention the cramps I get just from having sex, even though I love sex. My appetite is gone, it's ridiculous. If I'm sitting watching a movie or laying in bed, I have to have heat on me. And now all the presurgery discomforts I was having on the left side, I'm getting on my right side - so my right ovary. And I only had 3 days of normal BM after my surgery too, now that's all a mess again. For some reason having pressure on my abdomen (my bf laying on top of me, or my dog resting on me, he's a service dog) can give relief and other days it's complete torture. I'm on the Provera shot because it's worked great for me for three+ years and I needed something that was birth control as well. It also balances out my hormones for me, which means that some of my migraines are hormone related because they get extremely worse than their already disabling state. I take prenatal vitamins actually, and the days that I take them are slightly better days for me - since my appetite is killed, I'm at least getting my nutrition.

Again add this to all the complicating fucking migraines
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