Hey guys ... er ... girls! Need some advice.
(Warning -- gross female stuff ahead. If you are a guy, avert your eyes and go watch football.)
I just can't stabilize. I've been on Heather's diet for well over a year and I think the longest I've been able to go without taking Imodium is probably about 3 days. I got a lot worse early this summer, and then I went off birth control. I've been in hell ever since.
I am getting these strange attacks. At first I just thought they were unusually horrible D attacks. Eventually, I figured out they weren't really D. They are really horrible crampy pains low in my abdomen. During a bad attack, they are almost constant. During a "mild" attack, they come in regular intervals of 5-15 minutes apart. The pain washes over me in a wave and leaves me sweating and dizzy. Sometimes my vision goes black. I usually end up having to put my head on my knees because I'm afraid of passing out. A "mild" attack is about a billion times worse than my worst D attack. Nothing I can take touches this -- I simply have to wait it out. Usually it lasts around 3 hours. Although I do typically eventually get D during this, it feels like the D is incidental -- like it's kind of being forced out just because my insides are contorting so much. There is no rhyme or reason to when these attacks occur. They tend to happen every 3-4 days, but sometimes if I get a bad one I'll have another the next day. They can happen at 3:30 pm, at 7:30 a.m., whenever. A few times I've woken up in the middle of the night with one. I've been eating nothing but bread and potatoes and it has made absolutely no difference. (until yesterday, when I went insane and ate like half a bag of leftover Halloween candy. But let's draw a veil over that one.)
I also have constant pelvic pain -- sometimes this awful dull gnawing ache, sometimes like unusually bad menstrual cramps. Sometimes -- but not all of the time -- I have a sharp piercing pain (not burning) when I pee. My husband and I don't have sex anymore because the last few times we tried it was so painful for me I started bawling. For the last couple years, sex has been gradually more painful and I usually bleed afterwards. I always mention this each year at my pelvic exam/Pap and get only "Interesting. Pay your co-pay at the desk on your way out."
The longer I've been off birth control, the worse my periods have gotten. My first period off birth control was right on schedule, but it lasted for a week and a half. The next period was two weeks. The one after that was two weeks and two days. About a week after my last period, I had the worst attack I've ever had, and in the middle of it started bleeding like I was having my period. It wasn't much, though, maybe 1/2 t or so of bright red blood. The next day I had another really bad attack and had a LOT of blood, including a ton of thick almost black clots. Next day? No blood at all.
So I was finally freaked out enough to go to the doctor. I got in the next day and the first thing she said after hearing my tale of woe was if I had gotten checked out for endometriosis before. I said no. So she is sending me to a gynecologist. I don't get in until the 23rd of this month, which is actually pretty fast for this guy, but which right now feels like an eternity for me. The doctor did do a bunch of bloodwork for some hormone tests or something, but they hadn't gotten the results back yet last time I called.
I know nothing about endo. I did a little reading on it, just the basic info on like WebMD and Yahoo health. Superficially the symptom list is dead-on, but I guess that I'm not so sure these stupid pain episodes quite match up. Is what I'm experiencing maybe some kind of uterine contractions?? The only other time in my life I've had similar pain was when I had a miscarriage five years ago. When I wasn't in the bathroom I was curled in a fetal position on my bed wishing I were dead.
I did a search on the boards for endometriosis and didn't come up with much that was too helpful.
Anyway, I'm not asking for a diagnosis, but I want to be super-aggressive with the gynecologist to make sure I get stuff ruled out. So, I also read that you need to have a laproscopy done to truly be diagnosed with endo. If the gyno tells me he doesn't think I have endo, should I stamp my foot and say "Give me the laproscopy first!!!"? And since I'm at the gyno's anyway, should I bring up ovarian cancer since it's also mixed up with endo and IBS? I don't want to sound like a hypochondriac who spends too much time on the Internet looking up diseases, but at the same time, I'd rather be a hypochondriac than dead. The only thing is I think there isn't a reliable screening for ovarian cancer, just the CA-125 blood test which isn't that accurate. So I'm not sure how you'd actually rule out that one. I know, I should go Google it.
I also got put on 500mg Relafen twice a day. It's no miracle drug, but boy, has it helped. It's a NSAID and should theoretically be tearing up my guts, but I actually feel much better on it. It doesn't do a whole lot for the vicious attacks, but it helps quite a bit with the day-to-day stuff.
Sorry the novel.  Any thoughts are appreciated ...
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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