Castration. That is a term with negative connotations, for the most part. It’s something we threaten to do to pedophiles and rapists. We may also forget that this is what having a pet “fixed” is. Men tend to think of injury to their testicles. The word castration makes men instantly cover their junk.
So for the past month I have grappled with the fact that I was about to be castrated. That is, my reproductive organs, including ovaries and cervix, were to be removed. It should not have been a surprise, really. I’ve had so many problems with my reproductive system from day 1. and at the age of 45, I have kept my reproductive system the longest among the maternal line of my family tree, going back at least 3 generations. Several years ago I had an ablation to deal with irregular, frequent bleeding. Even then, it was said that the other option was hysterectomy. But we didn’t go that route, we went with ablation, even though I had questions and reservations.
My questions included, “If I haven’t had cycles for years, and that’s bad, then why is it good that I have no cycle after an ablation?,” and “If there’s no bleeding, how do we know the rest of the system is working?” And despite the cavalier attitude of my doctor and several nurses, the ablation was NOT a walk in the park. Not for me. I’m a redhead. Upon being awakened in recovery, I immediately balled up into a giant cramp, howling, and then throwing up, and then wetting myself wretching and howling… a shot of Demerol and a barf bag in hand, they shoveled me into the car to work it out at home. That was several years ago.
Last February, I was having some recurring pelvic discomfort I couldn’t explain away. Since my mother passed away of ovarian cancer in 2008, I have been pro-active about checking in on my reproductive system. That said, I have been putting off pelvic exams and mammograms (because the official recommendation is not to go every year and the Dr’s offices always try to get you to go every year). Instead, I had an agreement with my GP to do a CA-125 every year, and not to do an ultrasound unless the CA-125 came back saying it needed to be looked at further. By February, it had been over a year since the last check in with my GP (Dr. Love). So I got an appt. with a PA and complained about this discomfort. Kind of crampy, but not intestinal, no bleeding. Not terrible pain, just… uncomfortable. So she has me lie back and she’s pressing on my lower abdomen and ouch! Very uncomfortable on the right side. The left side is the side that typically has cysts, and painful ovulation, etc. I wasn’t aware of anything on the right until she pressed on it.
The follow-up, because of the family history, goes to a CAT scan, MRI with dye and then CA-125 before a follow-up referral to a new OB/GYN (the one who did the ablation had retired). It was summer by the time all the tests were done, including another ultrasound, and then I saw the OB/GYN. There is a large cyst, they said. I told them over the years, my experience with cysts had always been to take a round of progesterone, followed by an ultrasound. Always this had cleared the cyst. I said I thought all of the tests that had been run were excessive. So the OB/GYN agreed to try to pills and a follow-up ultrasound. We waited a few months. It was fall when I had a visit with the OB/GYN again. He says not only had the cyst not cleared, it had gotten 50% larger. It was the size of a grapefruit, he said.
Unbeknownst to me, this is the same OB/GYN who had seen my mother before her terminal diagnosis. Perhaps because of that, he said he felt the cyst should be removed surgically by a cancer specialist. Even though it appeared to be a simple cyst, to be safe, he wanted to refer me to a team who could treat me, if necessary, for cancer, if things took a turn. Okaaaay… so we’re talking about having a cyst removed by experts. I’m ok with that, let’s go!
So I go to the specialist before Christmas. The surgeon walks in. He says he’s read my chart and thinks he knows why I’m there but he wants me to tell him. I said I have a large cyst and because of my family history, it’s safer for him to remove it, just in case. He asks me about something I wrote on the entry questionnaire. They asked about my last cycle. Well, I’d had an ablation 6 years before, so for 6 years no cycle, except that I had bled for a few days each, 3 times in the prior 6 weeks. I attributed that to the round of progesterone. He said no, that was too long before. He explained that it meant that the ablation was not 100% successful on all of the uterine tissue and that meant that the scar tissue was preventing unscarred tissue from being checked, and the unscarred tissue was at risk of becoming cancerous. I needed a hysterectomy.
WHAT?! What about the cysts? The ovaries are bad too and also need to come out, he said. I was stunned. I asked about endometriosis and the impact if there was any tissue someplace hiding. He explained the laparoscopic, robotic-assisted procedure. He explained it again in the consultation room with my daughter. I asked about spironolactone, how it works and what it does in the body, because I have been taking it for years and felt sure it was doing more than purging water and preventing hair growth. He agreed, it was also dumping excess androgens. He said I could keep taking it after surgery. In all, I was just surprised. No other feelings. I went there to plan to have a cyst removed and now we’re talking about hysterectomy. I went to my office and told my boss, very matter-of-factly. I told family about it as a matter of course. For about 2 weeks it felt like nothing but something I was having done.
Then I had a bunch of nagging questions in my mind. Endometrial tissue will DIE without ovaries? Will it really die? Or just sit there and become cancerous? What will happen to me if I have no ovaries and no hormone replacement at all? OMG I’m already a sweaty bitch! Then I looked for my surgeon online. His ratings were poor. Oh no. One site allowed you to read individual ratings, and he had good reviews before 2010, and all bad ones after 2010. And people said you would get thrown out of the practice if you wanted a different surgeon. Ohhhh… so the anxiety started to build. I researched the effects of hysterectomy. Low libido, I expected. Vaginal dryness I knew about. But the idea of orgasms not being possible, clitoral and nipple sensitivity being reduced, atrophying sexual organs, prolapsed bladder and/or bowel, depression and sad, grey sex lives on shriveled, brittle, man-ified forms just about gave me a nervous breakdown.
The anti-hysterectomy sites (there are many) are sure to point out that this is female castration. Men would not be so quick to remove reproductive organs on other men to resolve a host of issues as they are to remove female reproductive organs. I agree with that. And when I looked into PCOS, and knowing it so intimately, I know it is caused by hormone imbalances. Fix the imbalances and you fix the organ functions, weight issues, and other 1000 things that mark PCOS and those who suffer with it. I followed the breadcrumb trail to try to find a possible *new* solution, perhaps something more recently linked to the disorder (the “latest” innovation I found was from my 1999 quest for information and cure). But no. I literally came back to a site that said exercise more/eat less, which is where my PCOS journey started when I was 12 years old in 1983. And that is certainly NOT the answer.
So since I found nothing new, I resigned myself to the procedure. I went for pre-op testing on December 29th. I saw a new PA at Dr. Love’s office. I told her some of my concerns and started to get upset. She said it sounded like I had been talking to Dr. Google. I asked, how can I advocate for myself if I don’t have information? I actually had 2 people in health industry positions telling me things about the procedure itself as well. She said I needed to call the surgeon’s office because it sounded like they hadn’t prepared me for this at all. No, they hadn’t. She did address my concerns in many areas. She said she thought I probably wouldn’t even notice the difference, sexually, and that prolapsed bladder has more to do with age than hysterectomy. She said sex might even be better than before because of all the PCOS problems I’ve had. Then she casually mentioned that I had fibroids. Nobody had told me that! Geezum. For some reason knowing I also had fibroids made it feel very necessary to have the procedure.
Finally, I went to my chiropractor. There were 3 things I wanted to do before going under the knife; 1) a new hairdo, 2) a pedicure and 3) a chiropractic adjustment. I talked to Dr. Hochman and told him what was going on. I want to say he was helpful, but he kind of said his wife became a bitch and never stopped. I said “I’m already a bitch, what is going to happen?” I was upset. I wasn’t ready for this. At least he was re-assuring in that this will prevent major issues in the future (like my mother’s), and this is a well-known surgery. Nothing too tricky or new. And my surgeon does many of these a year, he’s neither young nor elderly. It should be routine.
I ended up making peace with the idea and just hoping for the best. I never did call the surgeon’s office. I got my new hairdo and toenails done, and on January 16th, Martin Luther King, Jr. Day, 2017, I had a hysterectomy. By the time I went under the knife, the large cyst had grown to the size of a small head of lettuce, which was removed, drained and is being examined in pathology. Early tests look clear of anything suspicious. The left ovary had a small cyst which was removed with no problem. Everything was removed, everything else in the area looked good, he said. No driving for 2 weeks, stairs are ok, absolutely no lifting or straining, see you at follow-up on the 31st.
I’ll blog again about the procedure itself and my recovery sometime soon. Thanks for reading.