What Having a Hysterectomy Was Like
A few months out from having my hysterectomy, I feel incredibly grateful. I feel fortunate that I managed to have it not only before the COVID-19 outbreak occurred, which would have likely postponed it as an elective procedure, but that I had it with a window of time to recover mostly from it before our society plunged into a pandemic.
It is a relief to not have to deal with heavy bleeding and cramping, while also struggling with the emotional fallout of everything else going on right now. And I would have worried if this occurred too soon after surgery that I'd be too weak to manage myself well and also more susceptible to contagion since my immune system (which is kind of weak in general) seemed to take a hit right after surgery (but has gotten better in recent months).
For my surgery itself, I had it first thing in the morning, so I was lucky I didn't have to wait around for hours on an empty stomach. I wanted to get it over with. I had radical endo excision with an excision specialist, along with a hysterectomy (removal of the uterus) and a bilateral salpingectomy (or BS, otherwise known as the removal of the fallopian tubes). I kept my cervix since I have EDS and was worried about prolapse or other complications due to connective tissue disorder. I kept both ovaries because I didn't want to mess with my hormones and bring on premature menopause.
Where the surgeons found endo lesions
The surgery was four hours long. They found Stage 3 endo again. The bladder and uterus were fused together. Both ovaries were being strangled by their respective tubes, which were wrapped around them and adhering them to both sides to my bowels. I had a ton of endo on and around my bowels and bladder, both ureters, my rectum, and quite a bit on the utero-sacral ligaments and my cul-de-sac. While it was a lot, I was at least lucky it was surface-level- none of the endo seemed to be infiltrating, or eating into, the organs or other structures it was on. I was also relieved to find out that both my ovaries, despite having multiple endometriomas, were able to be salvaged and were healthy.
Why I needed an open incision
While most of the procedure was performed laparoscopically, my uterus was too enlarged and misshapen by my adeno and fibroids to be removed through a "keyhole" excision. So they had to do a bigger incision to the skin, called a "mini-laparatomy" or "mini-lap"L: a 3-4 inch cut right above the bikini line, sort of like a C section cut, and remove my uterus in tact as one piece (my surgeon said he thought it was too risky to bag it inside me and "morcellate" or cut it up into tiny pieces and remove through a tiny hole). At first, I was bummed by this because the incision site was painful and swollen and hurt for weeks and weeks. It really took two months to wear jeans again, or any pants with zippers really, but it did eventually get much better.
After the surgery, I felt very sick and was in terrible pain for the next two to three days. That evening, I threw up when I got home (I did go home at the end of the evening, spending a total of 12 hours in the hospital from check-in to check-out, 4 hours of the surgery and the other hours to recover). They checked me out once I could pee on my own and drink some water. For the next few days, I had to walk with a rollator and it was very painful getting up and down out of bed or the couch. My digestion was weird for a week. I was a bit constipated and nauseated, though other than that first night, I didn't throw up. I found myself snacking modestly rather than able to take full meals at first. I didn't shower until a couple of days after I got home, even though they said I could the day after. It was four days or so until I would wash my hair again. I know some people get hysterectomies say they feel great right away and they can start going about their usual routine within a couple of days. But that wasn't me. I was in notable pain for quite a few weeks, and the first few days to a week it was fairly severe. That's probably also because of all the endo they had to remove on top of the uterus.
The first few weeks, I also had some hot flashes. I would wake up in the middle of the night drenched in sweat about three or four nights a week. But then this went away by the time a month passed. I also occasionally felt kind of loopy, especially one morning when I woke up dizzy and disoriented. Yet, that went away.
How I feel today
Now, four months later, I am so happy I had my hysterectomy. I've pretty much completely recovered. To be clear, the hysterectomy and endo surgery have not cured my overall chronic pain. I still have hip and back pain and problems- I have separate issues causing them and though I knew it wouldn't go away, I had hoped for more relief in pain from the extra weight off that area. I also still have reflux, which my docs thought might get better after surgery and has not. But then again, it's still early on. When I had my first lap ever, it took an entire six or seven months to reap the full benefits of the surgery. I needed to heal completely first. And though I consider myself mostly recovered, I am sure my insides are still healing and adapting.
But even if those other health/pain issues still exist, the main problem I got the surgery for is at least now totally gone: I am done with heavy, painful periods that render me bed-bound. My terrible PMS seems to have gone mostly away as well. I do not have to schedule my life around my menstrual cycle ever again. My sex drive is pretty much the same; I can still orgasm, and nothing else has changed that I was worried or warned about. The only lingering side effect seems to be some sporadic occasions of mild-to-moderate constipation (which I was getting before surgery but has worsened just a bit since), but which is now improving gradually with self-administered abdominal massage and some other treatments. And this eradication of painful periods is no small thing: It's was a huge barrier and burden in my life that is now no longer there, and is one less thing to worry about and hold me back.
Have you had a hysterectomy? Did it help you? Please feel free to share in the comments below.
Has intimacy with your partner been affected because of endometriosis symptoms?