Over the course of the next year, she was more or less bedridden. Then, through laparoscopic (minimally invasive) surgery, docs diagnosed her with endometriosis—a disease characterized by the presence of endometrial-like tissue outside the uterus. But it wasn’t the endometriosis that led to her hysterectomy four-and-a-half years later. That diagnosis was just the beginning of a slew of medical issues to come.More Than Endometriosis
When she was 20 years old, Rebecca had her endometriosis excised by a surgeon, who was able to preserve her uterus, ovaries, and fallopian tubes. The procedure was deemed a success, but Rebecca’s doctor warned her that she might also have a condition called adenomyosis—when the endometrial tissue that lines the uterus grows into the muscles of the uterus.
Despite that, Rebecca felt fine after surgery. Best of all: She got pregnant—something doctors said would never happen because of her endometriosis. Rebecca’s daughter was born in 2012.
“It felt like someone was stabbing me in the pelvis.”
But in 2014, things took a turn. Rebecca started experiencing the symptoms of adenomyosis (they include severe cramping, pain during sex, and heavy menstrual bleeding), so she hightailed it to the doctor. Although she was still free of endometriosis, docs confirmed that Rebecca was suffering from adenomyosis. “The surgeon described my uterus as angry,” says Rebecca. “It tries to fix itself by contracting, but as the disease progresses, it loses its ability to contract.”
Because the abnormalities lie within the muscular area of the uterus, a hysterectomy can provide a cure. “If you take out the uterus, you’ve taken out the condition,” says Rebecca. Still, it’s basically a last resort: Women with adenomyosis can try hormonal birth control (pills or an IUD) to control the condition. Rebecca took the Pill for a few months without any success.
Another option is a procedure called a presacral neurectomy, during which nerves to the uterus are severed. But Rebecca and her doctors decided this wasn’t the best fit for her. Rebecca explains that many women with adenomyosis who opt for the presacral neurectomy do so because they want to have more children in the future. However, she says that the procedure’s effects often only last for a couple of years, and women ultimately end up needing a hysterectomy anyway. Since she wasn’t going to be trying to get pregnant again, she knew the hysterectomy was the right choice for her, even though she was only in her mid-twenties.
The Pain Wasn’t Just Physical
Gibson underwent a total laparoscopic hysterectomy, which removed her uterus and cervix. Doctors also took out her fallopian tubes as a form ofcancer prevention. The surgery is somewhat minimally invasive—hers consisted of one incision at her belly button and two at the bikini line—but “it’s still a major surgery,” she says. “I had concerns about life after the hysterectomy,” she adds. “Was I going to have prolapse? What would happen to my sex drive? You can find a lot of horror stories online.”
Still, because she was in so much pain from the adenomyosis, she knew she needed relief sooner rather than later. “I had a natural childbirth, and my adenomyosis got to the point where I felt like I was having contractions that were equal to natural childbirth,” she says. “I felt like I was in labor. I couldn’t live like that. A dear friend of mine had had a hysterectomy for adenomyosis, and she told me that when it was time [for me to have one], I would know. It sounds cliche, but that was so incredibly true. I woke up in the middle of the night one night in so much pain, I knew I was done. I actually scheduled the surgery two days after that.”
Fortunately, Rebecca was able to keep both of her ovaries (since her condition was limited to her uterus), which meant she could skip hormone replacements in recovery and not have to go through early menopause.
“There’s definitely an adjustment period,” says Rebecca of the recovery process. After all, it’s not uncommon for trauma to throw your body (and mind) into shock. She remembers mood swings and insomnia that settled about three months out.
Rebecca also started pelvic floor therapy (for pelvic floor muscle dysfunction), which helped her eventually ditch the meds she was taking for bladder spasms.
Support, particularly from her husband, was huge, too. Unable to find a therapist that took her insurance close to home, she and her husband traveled to Tennessee (three hours each way) once a week for 13 weeks. “We would have an hour-long appointment, go get something to eat, and drive home,” says Rebecca. “We did that in place of our date night.”
And while she didn’t expect it, she did grieve her loss of her fertility. “I thought I was done having kids so I was like, ‘I’ll go have it done and I’ll be good,’” she says. “But with the loss of fertility comes the loss of choice. Before, you’re choosing not to have kids, but all of a sudden it’s not up to you anymore.”
The first time she saw a pregnancy announcement on Facebook post-surgery, she turned her laptop off. And she admits to a “bittersweet sadness” upon seeing baby shower invitations and ultrasounds photos online. “I wasn’t expecting that,” she says. “I thought I’d bypass all of it.”
Surgery Changed Sex…for the Better
Post-hysterectomy, many women worry about their life in the bedroom. You’ll find the topic discussed in support groups and online communities alike.
“Before, you’re choosing not to have kids, but all of a sudden it’s not up to you anymore.”
Rebecca’s POV: “For me, the hysterectomy made it easier.” (She also says her husband was super understanding.) After all, before the procedure, she was in pain. “You can’t have sex if it hurts too bad, or if afterward, you’re going to be in even more pain,” she points out. Beyond somevaginal dryness (“lube is a thing now,”she says), “having it removed has been nothing more than a benefit to me.”
Back to Everyday Life
Today, Rebecca is totally symptom-free. “I am a year-and-a-half out of the hysterectomy, and if it were not for very small scars, I wouldn’t know I had had it done,” she says.
She practices yoga regularly and is a self-proclaimed “kid chaser” to her now 4-year-old.
For those with endometriosis, Rebecca strongly advocates considering all your options before making a decision. (She stresses that a hysterectomy is rarely a treatment option for those with endometriosis, which occurs outside the uterus.) And if you do have a condition where a hysterectomy is a possible course of action, Rebecca says it’s important to think about all of the implications. “You can’t undo a hysterectomy,” she says.