Sunday, February 01, 2009

This is not my beautiful life

I'm still trying to wrap my head around the whole endometriosis thing. Out of nowhere, I have a chronic disease that's going to have daily effects for the next ten or fifteen years, and all I can do is blink and say, "the hell? How did I get here?"

I have now had three relatively pain-free days in a row. Even the good days haven't been entirely good, I've still had some pain at here and there, but they've at least been good enough that I haven't had to take anything other than my usual handful of prescription-strength naproxen. It should illustrate the whole state of affairs, that three days of relative normalcy is noteworthy. Prior to that, the last week has included two days where I had to resort to narcotics, two other days where I made do with soaking in hot water, and daily cuddles with my rice bag heating pad.

(Some people make lemonade when life hands you lemons. Me, I sew up rice bag heating pads. If you can sew a straight seam, or have a friend who can, I highly recommend them. Take a 17 x 21 piece of 100% cotton fabric, fold it in half, sew it up on two sides, turn inside out, fill with 2 lbs of rice, and stitch up the remaining seam. Microwave for 2 minutes and it's a warm slice of heaven. Mine has a pretty cover with a zipper, but that's not essential for functionality.)

Anyway, so I've had a couple not-terrible days where I've almost felt like my old self, and it has really made a sharp contrast with the "new normal". I am hoping the feeling-good days are related to where I am in my cycle, because if that's so, at least I can expect a good week, maybe even two. If it's not, well, that's going to pretty much suck.

The reason I am trying to still make jokes about it is because I don't really have a choice. This isn't going to go away, at least not until menopause, although I have some hope that some treatments might help. I've decided against Lupron and Danazol, due to high failure rates and unpleasant side effects, but I'm going to try BCP. I want to make it to the six-month mark first, since I may well wind up having to wean Andrew. I'm going to ask for another ultrasound first -- I am deeply suspicious my left ovary's got some nastiness going on, which would push me toward surgery first. If not, I'll try BCP, and then another lap if things don't improve quickly.

I kept hoping we'd get this thing figured out, treat it, and be done, and I'm now having to come to grips with the fact that it won't happen that way. There's been a shift in the status quo, but it's taking me some time to make my peace with it.


LeftLeaningLady said...

De-lurking to suggest (if you are 100% sure you aren't having more kids) an endometrial ablation. I don't have endo, but chronic menstrual issues from the time I was 13 until last summer. After throwing up on the way home and 2 hours of "what the hell have I done?" I have been great. Bathed the dog and went grocery shopping on day 3 post surgery.

I'm not positive how it would work for you and I don't know if you are planning more kids, but it has done wonders for me and several friends.

Jody said...

Oh Emma. This all just sucks.

Emma B. said...

I am 100% sure no more kids -- had my tubes tied (and one removed). The thought of another pregnancy gives me the shakes, after the disaster of the last one. I don't think it would happen anyway, given the damage from the infection. Dunno if an ablation would help, as my issues are extrauterine, but it's on the list of possibilities. This is kind of uncharted territory right now.

Mandy said...

I don't have a logical reason for saying this, other than the fact my experience has made me suspicious. The thing is, I'm just not so sure I'm completely buying the spontaneous endometriosis diagnosis. (Say that five times fast!) I'm sure my fun has led me to be more skeptical of doctors and their diagnoses, but it seems odd to me that NOW you have endo?

Given that the infection was able to fester, spread and wreak havoc in and out of your uterus, I just wonder a bit if this is really true endo or something else...though of course I don't know enough about endo to be an expert at all.

I guess I'm just really wary of your prolonged pain being so quickly (well, not really quickly given how long this has gone on) attributed to a new problem vs the infection. KWIM?

I mean, we discovered that some of my pain is attributed to interstitial cystitis but it doesn't change the fact my uterus was so boggy and shriveled that my surgeon's notes indicate it was difficult to avoid perforating it by just touching it with the manipulator.

My infection was supposedly gone by the time we got to my hysterectomy and yet my uterus and cervix were still very infected.

I don't want to be the downer here - I want your infection to be gone, I'm just wary of the kind of pain you're describing. I did the pain pills and hot packs too long to forget. Is a second opinion an option or is there a noninvasive test that might confirm what you've been told?

Keeping you in my thoughts and prayers, and hoping to soon read of a full recovery for you.