Health & Fitness

Lena Dunham had a hysterectomy for endometriosis, but was it the right thing to do?

A doctor weighs in.

It's hard to stress just how debilitating of a disease endometriosis is. As with many ailments affecting only women, it's been minimised, dismissed and ignored for centuries. Even though there's women in such intense agony they can't work or go to school for days, they're repeatedly told it's just period pain. Despite women experiencing searing pain every time they use their bowel or bladder, the average time for diagnosis is still seven years.

Fed up with battling a disease which left her in unbearable pain, actress Lena Dunham opted for a hysterectomy, to cut out her entire uterus instead of spend another second in pain. It's a dramatic step; she'll never be able to have children, something she admits she desperately wants and always has.

But it makes sense. Lena says the pain would get so bad she was "delirious with it" and despite nine surgical procedures for it, the doctors still couldn't really explain it.

"The ultrasound shows no cysts, no free fluid, and certainly no baby," she wrote in her revealing Vogue essay.

"I go to pelvic-floor therapy, massage therapy, pain therapy, colour therapy, acupuncture, yoga, and a brief yet horrifying foray into vaginal massage from a stranger," she said.

Countless other women are the same. They experience fatigue, severe period pain, pain in the middle of their cycle, pain during sex, pain whenever they use the toilet, lower back pain. It's a constant stream of agony so relentless women can't leave the house.

It's no surprise some women are prepared to take such a dramatic step, but should they?

What exactly is a hysterectomy?

Contrary to popular misconception, a hysterectomy removes only the uterus and/or the cervix.

"A hysterectomy doesn't actually remove the ovaries or tubes. In fact, doctors want to keep the ovaries for as long as possible because they continue to release hormones that protect the bones, heart and other metabolic processes in women," Professor Jason Abbott of UNSW, Sydney and Medical Director of Endometriosis Australia, explained to Cosmopolitan.

Lena said herself, this isn't an operation performed casually. "They don't contemplate this request lightly, doctors," she wrote. "Medical-malpractice suits are real, and women are attached to their uteruses (for me, an almost blind, delusional loyalty, like I'd have to a bad boyfriend)."

But Prof Abbott says it's more complex than that.

"Despite a hysterectomy being a very final surgery, that doesn't mean it'll stop the pain of endometriosis. Often, the uterus is just an innocent bystander," he explained.

"Endo is when tissue similar to the tissue inside the uterus grows outside of it, so if you remove a perfectly normal organ, you could leave the disease behind and be in just as much pain as before.

"In the case of poor Lena Durham, who has suffered immensely, she is likely to have a severe and aggressive form of endometriosis. So severe in fact, she's noted that even her hysterectomy did not stop the disease coming back."

"It's actually your genes that play a key role in the occurrence and recurrence of the disease."

How many women have hysterectomies?

In Australia, the number of women having hysterectomies to combat endometriosis is very low.

"About 30,000 hysterectomies are done each year," Prof Abbott explained. "Endometriosis contributes to about eight per cent of these, meaning there are fewer than 2500 cases each year."

So women definitely shouldn’t have a hysterectomy?

Not at all. For some women, it might be the right choice but it's so, so important to be informed.

If a woman is diagnosed with endometriosis surgically, normally a laparoscopy, she may be able to have the disease removed at the same time.

"This would leave the uterus, tubes and ovaries within her pelvis and allow her to maintain her fertility. If she had recurrent problems, particularly with pain, she may consider a range of medical, surgical, allied health and complimentary options, to conserve her uterus," Prof Abbott explained.

However, if a woman has completed her family – or never intends to start one in the first place – a hysterectomy may be the answer if an expert in endometriosis agrees.

"Women with endometriosis should note that hysterectomy is not curative of endometriosis and they should seek advice from an expert in endometriosis care before considering this most final of procedures," Prof Abbott added.

Does a hysterectomy cause menopause?

Although a hysterectomy removes one of the reproductive organs, it doesn't lead to menopause because that's controlled by the ovaries.

Lena said she's exploring the harvesting of her eggs but she without a uterus, she won't be able to carry her own child, meaning she'd need a surrogate.

"Soon I'll start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs. (Your brain, unaware that the rest of the apparatus has gone, in theory keeps firing up your eggs every month, to be released and reabsorbed into the cavern.)

"Adoption is a thrilling truth I'll pursue with all my might. But I wanted that stomach. I wanted to know what nine months of complete togetherness could feel like. I was meant for the job, but I didn't pass the interview."

Not every woman will care about the consequence of forgoing pregnancy after a hysterectomy.

"It is also important to note that she may choose not to have children at all and for anyone who chooses this, they should be given support and a notation that this is completely normal," Prof Abbott told Cosmo.

"Women should not be made to feel abnormal if she chooses to, or is unable to, have children.

"There is strong society pressure around this and we must work to change this for the physical and mental health of women."

So in summary? Endometriosis sucks. It makes sense that if you're in constant, debilitating agony you'd do anything you could do get rid of it, but undergoing drastic surgery won't necessarily be your answer.

More often than not, your uterus is the harmless schmuck caught up with a bad group of genes. If you have a hysterectomy but don't completely remove the disease, it's like you've arrested the lowly street dealer but left Pablo Escobar to roam free.