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The writeup has been lingering half-written in a tab for a while, and I finally finished it off because I need to reboot. Here it is.
So, danazol. Synthetic androgen that doesn't fit into the active site of aromatase, and so can't be converted into an estrogen. Also doesn't fit into 5α-reductase, so it can't be converted into a dihydrotestosterone analogue, either. It's also a powerful inhibitor of steroid sulfatase, which keeps steroid hormones in their respective hydrophilic circulating-but-mostly-inactive states. Danazol does happen to fit into the particular estrogen receptor that signals osteoblasts to keep laying down mineralized bone at a good clip, which is a pretty nice side benefit (particularly since other standard treatments come with a risk of decreased bone mass). When prescribed to an AFAB person for endometriosis, its purpose is to tell ones' ovaries to shut up already.
At that, it's doing brilliantly. Assorted biomarkers tell me that 400mg/day has cut my body's supply of estrogens off just about completely - no monthly bleeding, no nothing. And so long as I can avoid having a period, I'm in relatively little pain. The various states that seem to reset to pain-causing after menses have remained in their 'relaxed' phase continuously. (I suspect the latter of being caused by scar tissue production leading to restriction of what should be elastic moving parts, particularly because getting them to the 'relaxed' state is a stretching-without-rebound, or sometimes tearing, kind of sensation.)
As one might expect, whacking a body's hormone system with the Big Hammer has side effects. I'm not bothered by the androgen-like ones, on the whole, but some of the others are noteworthy. A handful, off the top of my head:
* Progesterone turns out to down-regulate production of bile. Most people would never notice the increase from switching it off, but I had my gallbladder removed some time ago, with net result that I need to always have something in my gut for the enzymes to chew on. Now, I have distinctly less leeway on that than I used to. Conversely, the amount of fatty food that I can eat without needing to take a bile supplement has increased.
* Without a significant amount of sex hormones sloshing around, I.. still have a sex drive. It just has almost nothing to do with bodies - mine or anyone else's. The reproductive plumbing is less sensitive, and my breasts have simply stopped being an erogenous zone at all.
* My susceptibility to stomach irritation from both caffeine and NSAIDs is reduced. (Yay!) Not clear if this is from reduction in overall inflammation levels, specifically having lower amounts of circulating prostaglandins (which are produced in excess by endometrial lesions, apparently because screw you mammal), or simply due to lower stomach acidity even though I've been off of proton-pump inhibitors for quite some time now.
* Modest improvement in my extremely dry skin. I managed to get through the cold-and-dry parts of the year without developing cracked skin in the creases of my eyelids, which was an uphill battle during every winter I spent in Boston. Totally worth the similarly-modest increase in acne.
* Muscle cramps. Minor but persistent irritation, only partly relieved by increasing potassium intake. Always more trouble at the end of the day, just because I'm tired.
* Change in temperature preference. I'm no longer cold all the time, and indeed prefer a temperature around 5°F cooler than previously. Probably mediated by lack of estrogens, which cause ones' body to prioritize keeping a high core temperature at the expense of the extremities.
I have something like 2.5mo left on the 9-month course. Ob/Gyn appointment Thursday to start figuring out what's next.
So, danazol. Synthetic androgen that doesn't fit into the active site of aromatase, and so can't be converted into an estrogen. Also doesn't fit into 5α-reductase, so it can't be converted into a dihydrotestosterone analogue, either. It's also a powerful inhibitor of steroid sulfatase, which keeps steroid hormones in their respective hydrophilic circulating-but-mostly-inactive states. Danazol does happen to fit into the particular estrogen receptor that signals osteoblasts to keep laying down mineralized bone at a good clip, which is a pretty nice side benefit (particularly since other standard treatments come with a risk of decreased bone mass). When prescribed to an AFAB person for endometriosis, its purpose is to tell ones' ovaries to shut up already.
At that, it's doing brilliantly. Assorted biomarkers tell me that 400mg/day has cut my body's supply of estrogens off just about completely - no monthly bleeding, no nothing. And so long as I can avoid having a period, I'm in relatively little pain. The various states that seem to reset to pain-causing after menses have remained in their 'relaxed' phase continuously. (I suspect the latter of being caused by scar tissue production leading to restriction of what should be elastic moving parts, particularly because getting them to the 'relaxed' state is a stretching-without-rebound, or sometimes tearing, kind of sensation.)
As one might expect, whacking a body's hormone system with the Big Hammer has side effects. I'm not bothered by the androgen-like ones, on the whole, but some of the others are noteworthy. A handful, off the top of my head:
* Progesterone turns out to down-regulate production of bile. Most people would never notice the increase from switching it off, but I had my gallbladder removed some time ago, with net result that I need to always have something in my gut for the enzymes to chew on. Now, I have distinctly less leeway on that than I used to. Conversely, the amount of fatty food that I can eat without needing to take a bile supplement has increased.
* Without a significant amount of sex hormones sloshing around, I.. still have a sex drive. It just has almost nothing to do with bodies - mine or anyone else's. The reproductive plumbing is less sensitive, and my breasts have simply stopped being an erogenous zone at all.
* My susceptibility to stomach irritation from both caffeine and NSAIDs is reduced. (Yay!) Not clear if this is from reduction in overall inflammation levels, specifically having lower amounts of circulating prostaglandins (which are produced in excess by endometrial lesions, apparently because screw you mammal), or simply due to lower stomach acidity even though I've been off of proton-pump inhibitors for quite some time now.
* Modest improvement in my extremely dry skin. I managed to get through the cold-and-dry parts of the year without developing cracked skin in the creases of my eyelids, which was an uphill battle during every winter I spent in Boston. Totally worth the similarly-modest increase in acne.
* Muscle cramps. Minor but persistent irritation, only partly relieved by increasing potassium intake. Always more trouble at the end of the day, just because I'm tired.
* Change in temperature preference. I'm no longer cold all the time, and indeed prefer a temperature around 5°F cooler than previously. Probably mediated by lack of estrogens, which cause ones' body to prioritize keeping a high core temperature at the expense of the extremities.
I have something like 2.5mo left on the 9-month course. Ob/Gyn appointment Thursday to start figuring out what's next.
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“You understand kids aren't science kits, right?” “I do not.”
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But after a while, my doctor ordered a lipid check and my HDLs were *way* down, so that while my total cholesterol was under 150, my ratio was at an ungodly 9.5 (give or take a few tenths, since it's late and I don't have the spoons to go look it up).
So I had to quit the danazol and my doctor tried me on ordinary estrogen birth control, which had the predictable effect of making me way more irritable and prone to PTSD-fueled yelling meltdowns, which ruined friendships and I ended up quitting disability rights activism. And I quit taking the birth control altogether at the same time in hopes that leading a less stressful life and not adding anymore estrogen into the mix would eventually result in me being able to function better in triggering social situations.
So now I'm back to taking nothing for my ovaries and just hoping I don't have another nearly-deadly cyst burst. At least I'm in less pain: ironically, although the birth control was preventing ovulation, it also cause me to have way more painful periods than before. So I ended up being in less pain at least, even if I'm still in potential danger.
But the way I looked at it, the risk isn't so bad: after what happened in 2013, I know the signs of a burst ovarian cyst, so I'd be able to get to the hospital right away and they could put me on something like DDAVP to slow the bleeding so I wouldn't end up having to have another transfusion. Yes, it's a small source of anxiety, but I'd much rather take that risk than live with the behavioral side-effects of the estrogen. It was devastating to lose the disability rights activism community I'd come to love over the previous two years. I didn't want to end up involuntarily burning bridges in any other area of my life. So the tradeoff was worth it.
I hope all goes well for you and that you don't end up with screwed up lipids like I did (or anything else that would prevent you from completing the course of treatment) and that it ends up significantly improving things for you in the long run.
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I hope your body behaves better in the future.
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