I was on danazol for several months back in 2014 to prevent ovulation, since in late 2013 I'd had a burst ovarian cyst that bled out *half my blood* into my abdomen and I almost died. (I have a bleeding disorder unrelated to my endometriosis, so we didn't want a repeat of this.)
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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Date: 2016-03-19 05:37 am (UTC)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.