Actress Lena Dunham revealed in the March issue of Vogue that she recently underwent a hysterectomy to remove her uterus and cervix, after living for a decade with endometriosis. The actress had previously had eight other surgeries to treat the condition, but she wrote that in August, her pelvic pain became unbearable.
Dunham wrote that she tried pelvic-floor therapy, massage, acupuncture, yoga, and several other traditional and alternative treatments before she finally asked her doctor whether her uterus “needs to come out.”
Her doctor’s response was, “Let’s wait and see.” But two days later, Dunham wrote, “I check myself into the hospital and announce I am not leaving until they stop the pain or take my uterus.” Even then, she recalls, it wasn’t easy to convince her doctors and therapists; they wanted to know that the 31-year-old was absolutely sure of her decision before going through with the irreversible surgery.
For women suffering from endometriosis, hysterectomy is generally considered a “last resort,” says Sawsan As-Sanie, MD, a gynecological surgeon at the University of Michigan’s Von Voigtlander Women’s Hospital. Dr. As-Sanie has not been involved with Dunham’s care, but she has treated hundreds of women with endometriosis; she’s also president of the International Pelvic Pain Society.
Fortunately, says Dr. As-Sanie, a hysterectomy is not something that most women—even most women with endometriosis—ever have to consider. But here’s why some of them do, what it means for their future health and fertility, and what else she wants women to know.
What is endometriosis?
Endometriosis is common, affecting about 10% of reproductive women and as many as 50% to 60% of women who suffer from pelvic pain, says Dr. As-Sanie. It occurs when uterine tissue—which bleeds during menstruation—grows in other places in the body, most commonly in the pelvic organs.
This often causes pelvic pain, although the severity of tissue growth doesn’t always correlate with a woman’s level of discomfort. “Lots of women have very minimal disease but have severe pain, and occasionally women have quite severe disease and very little or no pain at all,” says Dr. As-Sanie.
Endometriosis is a chronic condition. “We don’t have a cure, but we do have a lot of effective treatments,” says Dr. As-Sanie. Often, doctors will first recommend hormonal suppression—usually in the form of birth control pills—to prevent fluctuations in estrogen and progesterone levels throughout the month. “We know that endometriosis is very hormone sensitive, and for many women, their symptoms are very well controlled when we try this.”
If that doesn’t help, doctors may perform surgery to remove as much endometrial tissue as possible. “Between those two treatments, hormone suppression or conservative surgery, we can effectively treat about seven out of 10 women,” says Dr. As-Sanie.
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What is a hysterectomy?
Even if these treatments don’t help women with chronic pelvic pain, doctors still aren’t quick to suggest a hysterectomy, says Dr. As-Sanie. For one, the procedure means a woman won’t be able to get pregnant. In addition, it’s no guarantee that the pain will stop.
During a total hysterectomy—which is what Dunham had—doctors remove the entire uterus as well as the cervix. They don’t necessarily remove the ovaries, however. (When they do, it’s called an oophorectomy.) “In the vast majority of premenopausal women, we recommend keeping the ovaries as long as they look normal and healthy,” says Dr. As-Sanie.
If women can keep their ovaries, they will continue making their own hormones—which means they won’t be thrown into early menopause or have to take hormone replacement drugs. Because they no longer have a uterus, however, they’ll no longer experience bleeding every month.
“For many women, this brings relief,” says Dr. As-Sanie. “If they had heavy, painful periods before, hopefully this will stop and their pain gets a lot better, although there’s no guarantee.” Between 10% and 25% of endometriosis sufferers who undergo hysterectomy continue to report persistent pain after surgery, she adds, although it’s unclear what causes it or why it only affects some women.
Can you have children after a hysterectomy?
Because a fertilized egg needs to grow in a uterus to develop into a fetus, women who have had their uterus removed cannot carry an embryo. But if a woman still has healthy ovaries, it’s likely that she still has eggs that can be collected and fertilized via assisted reproductive techniques.
“Fertility specialists can use a variety of methods to stimulate and harvest eggs, and women can use a surrogate to have a genetic baby of their own—although it’s complicated and expensive,” says Dr. As-Sanie.
In her essay, Dunham wrote that she will “soon start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs.” As someone who has always wanted children, she says she’ll also pursue adoption.
What else should women know?
Dr. As-Sanie says it’s important to know that pelvic pain isn’t always caused by endometriosis, and that even when it is, the disease often overlaps with other painful conditions including irritable bowel syndrome, cystitis (inflammation of the bladder), and pelvic-floor disorders.
“That may be one reason some women don’t get better from treatments aimed at endometriosis,” she says. “And that’s why it’s really important to see specialists that can evaluate and treat all of the potential causes.”
She also stresses that women with endometriosis have many options, and that it’s crucial they find a specialist who can help them determine their best course of treatment. (If your doctor can’t refer you to someone personally, Dr. As-Sanie recommends checking the International Pelvic Pain Society’s website for a database of physicians and physical therapists with expertise in chronic pelvic pain.)
“I’ve seen a lot of patients who have been recommended hysterectomy, and we’ve been able to identify other treatments for them that have really helped,” she says. “But at the same time, I’ve also seen patients who have had a hysterectomy and are ultimately very satisfied. It’s a decision that really needs to be made on an individual basis, as part of a very complex discussion between the patient and the doctors she trusts.”