Saturday, August 29, 2009

Most Recent Doctor's Appointment

Before the appointment, my husband kept reminding me that the pain wasn't going to be solved in the doctor's office. We were just going to discuss the next course of action. But I expected something different than what occurred.

Dr. Nath asked me what I had been feeling. I told her that I was back to daily pain, distracting fatigue, and pain with intercourse. She listened, paused, and said "I think you need physical therapy."

I blinked. What? Did I say anything about back pain, muscle pulls, or pinched nerves? I said that my girl parts are causing me pain. And you want me to go do some stretching?

Then she said the sentence that made me cry, and that she restated much better later in the visit: "I don't think that the pain you're having is from endometriosis."

I think all of the air was sucked from the room. I was crying, my husband looked shocked, and I felt we had been whisked back to January of this year, when no one knew my diagnosis. Then we let her continue to talk.

She said that the pain cycle certainly started with the endometriosis. But then my neural pathways became programmed for pain, and when the endometrial tissue was removed, the messages to my brain were still sending pain messages. So the physical therapy would help reset my neural pathways. She knows of a clinic that specializes in chronic pelvic pain.

If the PT didn't work, then she suggested we try accupuncture. If that didn't work, then maybe some Chinese medicine. But she is convinced that my hormones are suppressed by the Lupron, and that the endometriosis tissue has not grown back. She thinks we need to widen our view from the narrow window of western medicine.

Ok. I am totally willing to try PT. I will try anything that will help the pain. But what I hear when she says that my neural pathways are confused is this: "It's all in your head." I know that is not what she said. I know that's not remotely what she said. It's just what I hear.

Also, I did have three months free from pain. What was going on with my pathways then? And I have a psychiatrist friend who says that six months of pain doesn't re-program your neural pathways.

She did order bloodwork, to find out if my hormones truly are suppressed right now by the Lupron. We should know Monday if my hormones look like a menopausal woman or not.

Anyone out there have experience with this? Do you buy it? Am I just looking for an "easy" fix and so am disappointed in her answers? Or do her answers leave you puzzled as well? I welcome any feedback you have.

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Monday, August 24, 2009

Welcome Back, Old Friend!

Ok, so here's the latest and greatest, everyone.

Menopause seems to be M.I.A., but Endometriosis is in full swing. Hot flashes are long gone; daily pain has checked in. I'm starting to think that the second Lupron shot was a dud, as I've seen no significant change since I got it two and a half weeks ago. I'm going to see Dr. Nath on Friday to figure out what we do next, since spending the day with a heating pad and Vicodin is not what I like to do.

But guess what! There is one little friend who is back and I did actually miss, and that is Lack of Appetite! I know that I shouldn't be excited about this. I know that healthy eating is better than no eating. But I'm walking three miles a day right now with no weight loss. (Damn you, Lupron.) But when I was sick and had no appetite (and did no exercising) I lost 20 pounds. So maybe there will be some change now. Let me enjoy the little benefits to being sick, ok?

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Thursday, August 6, 2009

Can't Wait For Tomorrow

I have never in my life looked forward to a shot before. But tomorrow's Lupron injection can't come soon enough.

This week, the old recurring pain has been around a lot. Last night, it felt like it used to feel: lying in bed, trying to fall asleep, unable to sleep on my stomach. The hopelessness threatened to come back too, but I clung to the hope of the upcoming shot.

I spoke to Dr. N yesterday about the pain, cramps, etc. coming back. She thinks that, based on what I've explained, the last Lupron shot likely started to wear off a few weeks ago. So she's also glad that I'm getting another one tomorrow. But since six months is the maximum time you can take Lupron, she's concerned about what we'll do when I'm done with this next round. She thinks we'll put me back on the Pill, and maybe start it in two months. The Lupron is supposed to last three months, but it obviously isn't for me.

If the Pill therapy doesn't work, then we might have to get more radical. We'll burn that bridge when we get there.

Cross your fingers that this injection wipes me clean of any endometrial cells. Come on, big needle!

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