Drove (rode, technically) an hour south today to see a surgeon about a hysterectomy. Since there’s nothing obvious in images, he wants to be sure surgery will be beneficial before moving forward. I got a shot that will mimic menopause for the next three months. I’ll have one month of full-on menopause – hot flashes, mood swings, etc. – then a month of pseudo-post-menopause and another month of the shot wearing off. The intent is to see if shutting off hormonal fluctuations will have a positive impact on my pain and joint laxity. Progesterone, which is the ‘laxity’ hormone that triggers menstruation (among other things) is an enemy to EDS, and the expectation is that stopping its production will alleviate some of my symptoms and make it easier for me to be able to recover as opposed to struggling just to maintain.
This may be a horrible idea, but if it is, at least this route is reversible. Full removal of uterus and ovaries is not, and it carries with it many other potential complications beyond menopause. So, I’m expecting my next month or so to suck – A LOT – but if it clarifies what my body needs, then I’m willing to give it a go.
I know surgery is risky. I know my recovery will be rougher than most. I know it’d trigger real menopause, and that sets me up for bone loss and all the standard issues that menopausal women face.
I also know that more than 50% of the time, because my hormones are not on a regular monthly cycle, I’m suffering from extra laxity and the pain that goes with it, as well as neurological complications from spinal laxity. I’m also convinced that endometriosis and adhesions are quite likely the cause of some (most?) of my abdominal pain. The fact that nothing shows in scans (CT and ultrasound) pairs up with my knowledge that endometriosis and adhesions can only be seen by cutting into the abdomen, and that combines with my pain patterns to support my theory. I know when I’m ovulating because it’s painful, and I know that it happens more often than once a month.
I know I don’t want children. I have no use for my uterus or ovaries. I know that if I ever decide I want to mother, I would much rather adopt a teenager than give birth.
I know I’m desperate for anything that might alleviate some of my pain.
I believe removal of my reproductive organs and early menopause will do that.
I believe it enough that as of now, I’m comfortable with early menopause and all its potential complications.
Now, am I concerned about the interplay between estrogen and blood clots, knowing that I’m already on daily aspirin to prevent clots? Yes. Am I concerned about mood swings over the next month? YES. Am I worried my body might totally flip the fuck out? Yeah, I am.
But I talked to this doctor about those things, and he’s not concerned. I asked him how much experience he has with EDS. He has had several patients with EDS and has performed several surgeries on EDSers. He even has a colleague with EDS. I didn’t have to teach him anything. I did, accidentally – he wasn’t aware of the progesterone connection, but it didn’t surprise him in the least. I was referred to him specifically because of his EDS experience and minimally invasive surgical techniques.
I trust him.
Big words, those. It’s the truth, though. He’s genuinely a GOOD DOCTOR. So is my regular gyno who sent me to him.
This next month might be hell, but it’s ‘only menopause’, it’s only temporary, and I know that between my regular gyno and this new guy, I have a team I can rely on for any and all problems.