What doctors don't tell you about getting a hysterectomy at 31

31 year old non-binary person after getting a hysterectomy
Courtesy of: Derek Calhoon
ByAce Tilton Ratcliff

In December of last year, when I was 31, I underwent a hysterectomy. Surgery was a hard choice, made due to medical complications including a hereditary degenerative disease, endometriosis, and a host of other issues. I wanted to get it done, but because it was a total hysterectomy, the surgeon had to remove nearly every part of my reproductive system. I no longer have a uterus, fallopian tubes, cervix, or one of my ovaries. (We kept one so I wouldn’t go into premature menopause).

When you’re still within “healthy” reproductive age like I am, getting a surgeon to agree to a total hysterectomy is a total challenge. You sign lots of paperwork that affirms you understand you will no longer have the parts necessary to biologically reproduce. From everything I signed, there was no way for me to misunderstand my inability to get pregnant once the surgery was done.

But what I found after the stitches dissolved was that all the paperwork didn’t cover even half of the issues I’d face post-hysterectomy — especially as a young, non-binary human with an active sex-drive.

The first sign that hospitals aren’t prepared for young people to undergo surgery like this was the post-op instructions. The paperwork said I wasn’t allowed to have penetrative sex for at least six weeks, but didn’t mention if masturbation or orgasm without penetration was allowed. When I asked my surgeon, she was surprised and didn’t have an answer. “It’s just that usually the men ask questions about when sex is allowed again after this surgery,” she told me.

Courtesy of: Ace Tilton Ratcliff

Hysterectomy is the second-most common major gynecological surgery performed on reproductive-aged people in the US; more than 400,000 are performed annually. About one-third of all people with uteruses will have a hysterectomy by the age of 60, according to the American College of Obstetricians and Gynecologists. (Statistics on humans under the age of 40 undergoing the procedure don’t seem to exist.) Understandably, “postoperative sexual function” — being able to get down after surgery — is of paramount importance to patients.

Yet sex, and particularly orgasm, wasn’t something anyone brought up to me beforehand. Part of why I had pushed for surgery was because orgasm had become impossible due to health issues; even the act of arousal caused pain that made sex feel like eating glass. My doctor and I had hoped the removal of the cysts and tumors invading my reproductive organs would make orgasm possible again. In fact, if you Google “total hysterectomy + orgasm,” a plethora of websites assure that orgasm is possible after surgery. While it's not confirmed by medical professionals, many people who've gotten hysterectomies have said it's led to better sex and improved orgasm because all the parts that hurt are gone.

However — and what no medical professionals took the time to point out after surgery — according to a 2014 study, up to 20% of people with uteruses experience “deteriorated” sexual function after hysterectomy. Science doesn’t have concrete answers yet as to why, but it appears that the surgery may cause sensory loss or nerve damage that contributes to difficulty with orgasm.

Additionally, some people experience an internal orgasm that includes uterine or cervical contractions. As studies have shown, the cervix is innervated by different nerves than the clitoris, so stimulating it causes distinctive sensations. (In fact, one of the nerves that connects to the cervix, the vagus nerve, bypasses the spinal cord, so women with spinal injuries can often still experience sexual pleasure by cervical stimulation.) Research shows that uterine contractions intensify during the oxytocin release triggered by orgasm, says Dr. Barry Komisaruk, a neuroscientist and orgasm researcher at Rutgers University. Removing the uterus, cervix, or both can affect the way orgasm is experienced. Also, people who undergo a hysterectomy due to endometriosis report more difficulty and less satisfaction with orgasm than people who have a hysterectomy for other reasons. (Ahem.)

Courtesy of: Ace Tilton Ratcliff

Completely altering your anatomy changes more than how you orgasm. As noted by the International Journal of Obstetrics and Gynecology, there’s a delicate anatomical relationship between the uterus, bowel, bladder, and vagina, not to mention the local nerve supply feeding those parts. The bowel, bladder, cervix, and vagina are all connected by a complicated set of nerves. The act of dividing and removing these organs during any kind of hysterectomy means damage to the fascia, ligaments, and nerves connecting them all are common.

Depending on the damage, some patients may experience weakening in the pelvic floor muscles that span the bottom of the pelvis and support the pelvic organs. Kegel exercises feel very different once they’ve taken out most of the organs in that area. Postoperative symptoms of pelvic floor damage may include types of bladder or bowel incontinence. Post-surgery, fully emptying my bladder feels impossible unless I’m standing up, so I had to invest in a female urination device (shout-out to pStyle, always in my purse!)

Since my surgery was performed laparoscopically by a robot, the visible scars on my abdomen are minimal, but the scar tissue formed inside my abdomen aren’t. Though I haven’t been formally diagnosed with abdominal adhesions (tough bands of fibrous scar tissue) because I haven’t wanted to undergo another laparoscopic procedure, all signs point to their existence — which means I deal with severe pain related to gas and defecation. It is utterly impossible to feel sexy when talking about this stuff, especially because I'm not even the type of person who makes fart jokes.

Although we opted to keep one of my ovaries, the removal of both ovaries and fallopian tubes in a more invasive operation like mine is associated with difficulty becoming sexually excited, likely due to hormonal changes. Removing both ovaries causes the body to begin menopause, ceasing the production of hormones like estrogen and progesterone. Estrogen helps maintain the fluid that keeps the vaginal lining thick and elastic. A dry vagina which doesn’t stretch and isn’t lubricated means painful sex. With only one ovary, my body doesn’t produce the same levels of natural lubrication anymore. Nobody mentioned that I’d be best served with a permanent bedside bottle of lube (and God help you if your partner isn’t into foreplay.)

Outside of significant changes to my body and sexual experience, not one damn person on my surgical team mentioned that hysterectomy is associated with long-term health issues which are especially pronounced for younger humans who have the surgery. Studies have found people younger than 35 who undergo the procedure have a substantially increased risk for cardiovascular disease — a 4.6-fold higher risk of congestive heart failure and a 2.5-fold greater risk of coronary artery disease (plaque build-up in the arteries). Not even remotely terrifying, right?

Courtesy of: Ace Tilton Ratcliff

Not discussing these issues isn’t just a casual disservice to patients. It’s been demonstrated that educating patients on the potential sexual problems they might experience after a hysterectomy may actually make them more satisfied with the procedure, regardless of whether they end up experiencing said problems. If a doctor tells you to potentially expect something negative may happen, it’s less awful if the bad thing does happen. Who woulda thought?

The fact that I had to spend so much time after my surgery learning all of these things myself instead of having a medical professional tell me beforehand is, sadly, more often the norm than not. Despite the fact that women are the ones most likely to deal with chronic pain, like that associated with endometriosis or fibroids, they typically don't receive care equal to men (and the same goes for other marginalized identities, like disabled individuals, LGBTQ+ people, and people of color).

Female subjects have historically been excluded from clinical trials; doctors take women’s pain less seriously to the point that women are more likely to be given sedatives than pain medication; and women wait, on average, 16 minutes longer than men to receive pain meds for acute abdominal pain. Hell, women are seven times more likely than men to be misdiagnosed and discharged mid-heart attack. Not surprisingly, medical schools use curricula informed by what happens in the body of a 154-pound men and sex differences are rarely discussed in lessons.

There’s a lot to be said about the disparity in care between cismen and people with uteruses and how much more education we deserve before undergoing serious, invasive procedures. Probably the best example of my tuned out medical team was the notification I got en route home after I’d been discharged. Curled up in the back seat, woozy from medication, my medical app pinged. I opened it and pulled up the result of the mandatory urine sample I had to give prior to anesthesia. Great news: I wasn’t pregnant! It hurt like hell to laugh against my stitches.