Join Date: Aug 2011
Location: Oslo, Norway
Mystery illness, normal, or what? - post laparoscopy
I know that only my dr's can eventually officially tell me what on earth is wrong with me but I'm wondering if anyone here has been in the situation I'm in, considering that at present, my dr's have NO CLUE what on earth is wrong with me.
My reproductive health and periods had always been normal and steady throughout my life until fall 2009. My gyno found a small cyst on the right ovary, put me on birth control pills to shrink it, etc, because I was in great pain at the time. I didn't react well to the hormones so after a few months we checked out the cyst, it was gone, the gyno said it was my choice to stay on the pill so I got off of it. The following spring (April 2010) I'm in pain again, come back, now there's two cysts, one on both ovary. Back on birth control, pain's gone, etc.
July 2010 I'm in constant pain over my right ovary, and after a few weeks of suffering they do a laparoscopy in August, and find a dermoid on the right cyst that was twisting the ovary, and my left ovary had become ringed with little cysts but I had no pain there and they didn't think they had to remove anything. So the dermoid came out, they did a check of my cervix and ovary and tubes to make sure everything was fine. However, the only problem was when they removed the dermoid, it burst on removal, and some of the gunk that was in it spilled around/into the ovary. The surgeon told me they managed to suck out most of it but if there was any of it left around my body would push it out.
I'm fine August through January, only problem is I have no period. Whatsoever. Just a straining pain around the time I should have it, and something I can only describe as dirty water coming down for a day and that's it. In February I get put back on birth control. The pain returns, just as bad as it was before the surgery only now I feel it in both ovaries. Fevers, swelling, etc. A vaginal ultrasound shows nothing, no cysts, everything looks normal. After several visits to my GP, in July this year things got so painful I had to go the hospital twice to be given morphine. Blood tests and urine samples showed nothing out of the ordinary. But I keep putting on and losing weight, and I haven't been able to return to my normal workout schedule because I'm painfree one week and doubled over for the next two. They check my hormonal levels, nothing's out of the ordinary.
A week after the morphine episode I'm back in the hospital, this time with the lymph nodes around my upper thighs so swollen they felt like they'd pop, and an internal fever, and ovarian-area pain again. Ovaries normal. Fever's there but not dangerous, etc. They almost sent me back home with painkillers til they tested my urine again and they said I have a UTI. I had no symptoms of a UTI -- no pain on peeing, no kidney pain, no blood in urine, etc. -- so they give me an antibiotic, send me home. Follow up gyno appointment with the ultrasound and manual exam, and, tahdah -- nothing's "wrong". THe gyno is as puzzled as I am so she scheduled me for a CT scan for a deeper look. The weirdest part of all is that I can't lie on my right side, because I always feel pressure on my left, like something's pushing on it or moving or something. Still no period.
So this morning I get up and can't walk, as I feel something push/pull and a really sharp, burny/pinchy pain around the surgery site around my left ovary. I have a week til my next appointment but I'm really starting to get furious. What could be it? Adhesions? No-cyst polycystic ovarian syndrome? Hormonal imbalance? Cancer? Vitamin deficiency? Has *anyone* been through this before? It's so incredibly frustrating and we've spent an insane amount of money on doctor visits and painkillers to keep being told it's nothing, apart from some stupid UTI that came out of nowhere.
To add to the weirdness, over the last two months I've had a growth on my inner lower lip. It started like it felt sore, then I noticed my bottom two teeth at the front would kind of "stick" to it, but looking in the mirror there was nothing there, just a reddish/brown freckle. Now, it's turned into an inch long dark spot with a funny texture, like if I'd been chewing on my inner lip or something. Dunno if it's related or if I'm just really frikin' unlucky this year with my health.
Thank you if anyone has any guesses on any of this stuff. The doctors just stare at me like I have 12 heads. Thank you, thank you. Celeste