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The answer, it seems, was under my nose all along.
Actually, it makes sense that it took me, and the medical team working with me, this long to figure it all out. The symptoms I was presenting with, though not unusual with what I have, did kind of present in a manner that was odd.
When I was in library school, I had a pelvic surgery done. When they were in there, they discovered a few rogue growths-- endometriosis. The surgeon burned 'em off, and told me, helpfully, to "keep an eye on it."
He didn't tell me what to keep an eye on, what to expect, what to look out for. I figured, hey, they burned em off. They're gone. I thought endometriosis was just periods that hurt like hell. So when didn't they hurt?
Surprise. Current thinking is that endo, at least, symptomatic endo, is an autoimmune response. It is a disease that is progressive, grows like a cancer (but isn't) and causes a lot of havoc, sometimes more havoc in women with fewer implants, and less havoc in women with more. But not always.
It is an enigma wrapped in a mystery.
Cutting it out usually gives a year or two of relief. Then the cycle repeats.
Yesterday I went to one of the top three endo specialists in the country. I told him what was going on... the headaches, the fatigue, the back and hip pain... and that the pelvic pain came three years into it.
Nothing I said surprised him.
Certainly, it seems like this could be it. The symptoms match, and it's been spotted in my body, unlike most of the other likely suspects... SLE, RA, and a host of other acronyms.
The bummer is, there's really no cure. They can cut it out, they can try to retard growth with drugs... But even hysterectomies don't solve the problem, necessarily. Sometimes (though it's not always the case) menopause doesn't even make it stop entirely.
And the pain might stop, for awhile, but the fatigue tends to be a hanger-on type of symptom.
It can lodge anywhere in the body... No one is sure exactly why. You can get it on your lungs, liver, or even, in rare cases, your brain. I know of a lady whose lungs collapsed every period from implants there.
So here's the plan: In early September, they're doing a day surgery (there was some concern, because I'm (cough) overweight, it would have to be a more involved surgery, but the doctor took a look at my gut and thought the laparascope would work all right.) They're taking a look at the general state of things, cutting out what they find, and doing some biopsies of the lining of my uterus.
The biopsies are not standard, but he's doing them partially because of my symptoms and partially because he's in there, why the hell not?
Then comes the drug treatments, which I will think more about after we know where the surgery leaves us. There are a number of drugs I could take... None of which are terribly pleasant. The most common are Depo-Provera, which I am not sure I can take due to a breast cancer risk (I might be able to), Danazol, which just has some nasty side effects and I don't think I want to go there, and Lupron. Lupron is actually a drug used also in late stage prostate cancer. It causes bone loss (which is scary), really bad hormonal swings (also scary) and weight gain (I really don't want to be packing more weight, but I would like my life back, too). These drugs are not drugs you can really take for any length of time.
So it could come back, if we get it under control, when the drugs are stopped.
What do we do then? Wash, rinse, repeat with the surgery, and hope for new drugs.
But that's probably two or three years down the road.
The kicker is I don't know as any of this will really help, but if I keep it from getting worse, and have a definitive answer as to what is wrong...
That's somethin', you know?
The sleep doctor had mercy and put me back on the focalin, 30 mgs. That dose will be increased, but we're taking it slow. 30 mgs gives me the ability to get in to the Hysterical Society for a few hours here and there. It's nice to be able to leave the house periodically.