My Experience With Surgical Menopause
In May 2021, I had my fourth surgery for endometriosis. I’ve had issues with recurring large endometriomas throughout my life and even had a couple of ruptures, the most excruciating pain I’ve ever experienced.
Even though they were just centimeters in diameter, it felt like the endometriomas were taking up my entire pelvis. I always knew they were returning because it became increasingly uncomfortable to sit or lie on my side, and even eventually wear pants or a seatbelt.
Post-surgery, I’m still amazed that my pelvis doesn’t feel full or painful and that pants, underwear, and seatbelts are no longer noticeable to me.
Having excision surgery
Although my surgeon preserved one ovary during my previous excision surgery in July 2020, I asked him to remove my other ovary when I spoke with the surgeon performing my fourth surgery. I knew the risks, like potentially higher risk for dementia and an increased risk of osteoporosis, among other things.
But I could not bear to have another endometrioma. So, last May, I went into surgical menopause.
My gynecologist wanted me to try hormone replacement therapy (HRT) since that is the standard protocol. Still, I felt hesitant, knowing that birth control had traditionally been disastrous for me, causing scary heart palpitations. But, I trusted her and worried about what a lack of estrogen might do to my bones and brain.
We tried the lowest possible dose of the Loestrin patch. I cut it in half and put it on my hip.
Within days I had a recurrence of endo symptoms: bloating, pelvic pain, mood disruption, and bloating. I even had bleeding that mimicked a period. After just a few days, I removed the patch and decided not to do any hormone replacement.
Two or three months after that, I had bleeding that seemed like a period. I’m unsure how since my ovaries were gone, but my gynecologist suspected that the estrogen patch had caused the bleeding.
She also wondered if I had a remnant of ovarian tissue triggering the bleeding and endo symptoms. We eventually did an MRI to see if I had ovarian remnant syndrome.
The MRI did not show evidence of a remnant or regrown ovary.
Changes to my body after not being on hormones
After several months of being off any hormones, I started to feel better, and I haven’t bled since January 2022. I know now that one of my main mast cell activation syndrome triggers is estrogen, so no longer having increased estrogen during the month has helped me a lot.
I have had to contend with hot flashes, which worsened immediately after surgery until about April this year. I still have them daily, but they are less frequent and intense, and their duration is shorter.
I’m not taking any medications or supplements for the hot flashes. Still, a migraine specialist I saw recently said I might be coming into the phase when they naturally decrease anyway.
Night sweats are another side effect I experience, and I’m still learning the best sleeping setup for me. Some things that help are using bamboo sheets that feel cool to the touch, running a fan, using the air conditioning at night during hotter months, sleeping without clothes, and sometimes sleeping in a silk sleep sack on top of my bed without any other covers.
I vacillate between too hot and too cold all night, so I always have a few blankets on the bed if I need them. My blankets are made of cotton, not anything synthetic.
I find that anything polyester keeps me much too hot. I also try to avoid eating anything that causes me to feel warmer before bed, and I won’t drink hot liquids before bed.
I have noticed some changes in my skin, and I have more brain fog, but honestly, I’m not sure if the brain fog is menopause, dysautonomia, or MCAS. It becomes tricky to untangle root causes when you have many comorbid illnesses.
Resources that have been helpful
Finding good resources for nonbinary people going through menopause is a struggle, so I was delighted to come across What Fresh Hell is This? Perimenopause, Menopause, Other Indignities, and You by Heather Corinna a fabulous nonbinary author who addresses what it’s like for trans men, intersex, and nonbinary people to go through menopause.
It’s irreverent, hilarious, and highly worth the read. I have found a few queer and trans-friendly online spaces for those in menopause, but the community is lacking. I hope this changes.
If you’re considering surgical menopause because of endometriomas or any other complications from endometriosis, have a chat with your doctor. It might be a good idea or mean additional risks depending on your circumstances.
Either way, make sure you decide with as much information as possible. Reach out to others in spaces like this who can share their experiences with you so you can get different perspectives about what it’s like on the other side.
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