Mountains, Molehills

Dale's comment on my charting post got me thinking. He suggested that jumping to the conclusion that there's a problem, halfway through the first cycle I've kept track of, is, well, jumping the gun. I need to figure out what my cycle looks like. And in a way, he's right. I don't actually know what the data suggest because there's not enough to come to any real conclusions yet. In so many other ways, however, it's beside the point.

The reality is that this data shows up in a context, one in which I know that my ovaries are encased in endometriomas, so-called "chocolate cysts" of endometrial tissue that grows and sheds and grows again in little sacs on my ovaries. I know this. I know that I have endometriosis, that it often causes problems conceiving, that it's linked to a higher miscarriage rate. I know that endometriosis is progressive, that left untreated it gets worse because all of that blood and tissue have nowhere to go but the nearest organ.

Some of my anxiety and distress last week wasn't for our baby plans, although that was the occasion for the reality check. My anxiety and distress came from having to face that I will likely have to make some uncomfortable choices in order to protect as best I can my long-term health. I don't want to have surgery and I don't want to be on hormones. Outside of forced menopause, however, birth-control hormones that either dispense with cycling altogether or dramatically thin the uterine (and endometrial) lining are the only treatment we have to mitigate the progression. Outside of surgery, there are no options for removing endometrial tissue and trying to separate organs that have gotten stuck together.

So much about this sucks. Researchers don't know what causes it and they've not come up with very good treatments. I can rail all day about the increased toxins that likely play a big part in auto-immune disorders, of which endometriosis may very well be one. I can point out the sexism and misogyny in a medical and research establishment that took notice of endometriosis only when it became linked to wide-spread fertility problems and not when women were simply doubling over with pain because hey, women are supposed to be in great pain three days every month and tough shakes, toots. I can disparage the combination of corporate irresponsibility, our consumerist fetish, and the over-medicalization of health and wellness that creates health problems only to charge us to fix them. It really sucks.

But the fact that it sucks doesn't change the fact that I have endometriosis and that my options are limited. I got diagnosed because I was having pain during sex, not because my periods were all that bad. Since then I've had periods so painful I've passed out in my office right before teaching a class; I've had increased intestinal complications, and I've passed blood clots the size of silver dollars and larger. My endometriosis is getting worse. I can make all kinds of lifestyle changes and they help, oh they help, but they don't change the bottom line. And the bottom line is that I will likely have to have surgery and I will likely, eventually, have to go on hormones again.

And this--quite apart from the baby plan--was so much of my reaction last week. That infertility and endometriosis care are conflated right now doesn't help matters, but the specter of infertility is honestly not the primary panic-button. So thank you, Dale, for helping remind me not to panic this early in the baby game. I take what you said the way I'm pretty sure you meant it--as affectionate caution.

I have an appointment on March 15 to see what the doctor suggests about my insides, and I'm sure I'll keep you all up to date as things unfold.

Comments

[Susan]

That does suck, indeed. Politica (my partner) lives with a variety of health problems (some auto-immune in nature) and I was thinking this morning just how hard it is to live with chronic health problems that can be so debilitating when untreated and that have such debilitating side-effects sometimes with treatment. I'm sorry.

And rooting for good progress on the baby-making despite all that.

[dale]

{{{Pro}}} Oh, that sounds awful. Thanks for filling me in; I was a little puzzled -- it didn't seem like you to jump the gun that way. These are the worst sort of problems -- where you're weighing this probability against that probability, and you don't have any very good way of assessing the odds either way.

But still, from my hugely uninformed perspective, it seems quite likely that everything will just work. (And if it does, you'll soon "be on hormones again" like never before :->)

[Ms. P]

Dale, you rock.