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Lena Dunham Got A Hysterectomy For Endometriosis. Here's Why That's Unusual.

There are many different therapies for endometriosis, a condition that causes severe pelvic pain and bleeding, but hysterectomies typically aren't one of them.

Posted on February 16, 2018, at 11:06 p.m. ET

On Wednesday, 31-year-old actress and writer Lena Dunham revealed in an essay in the March issue of Vogue that she had had a hysterectomy.

In endometriosis, the tissue that normally lines the uterus escapes and attaches to other organs, which can cause scarring, heavy periods, and severe or even debilitating pain.

There is no cure for endometriosis, but you can treat symptoms with hormonal birth control pills, pain medication, and pelvic floor therapy.

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Typically, doctors diagnose endometriosis by doing a detailed history, a pelvic exam, and in some cases, surgery to identify the lesions. "Performing surgery to make a diagnosis is very invasive, so I work very closely with a radiologist and we use [an] MRI protocol to make the diagnosis instead, and it's over 80% accurate," Huang says.

Once you are diagnosed, the treatment really varies depending on your goals and the type of pain. "If the woman is not trying to get pregnant, we will try hormonal birth control to regulate the hormones and period but this only minimizes symptoms and it doesn't treat the actual problem," Huang says. Doctors may prescribe birth control pills or a progestin-only contraceptive, such as the hormonal IUD (Mirena) or the Depo-Provera injection. There are a few other medications that induce an artificial menopause or prevent the growth of the endometrium, but these are older and less popular due to the severe side effects.

Pelvic floor therapy can be helpful because endometriosis can cause the pelvic floor muscles to tense up, Huang says, so you need help to relax them again. Patients may also see a sex therapist to learn techniques that can make sex less painful, and in some cases, possible.

There are surgeries to treat endometriosis, such as laparoscopic excision or ablation, but these are often done to remove abnormal tissue while conserving the reproductive organs.

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"If the patient does want to get pregnant, then birth control pills aren't an option, or if they are still in a lot of pain and they've tried other treatments, then we offer surgical intervention," Huang says. When doctors do surgically remove the endometrial tissue, they try to do so without removing any organs, called "conservative therapy," and this is done laparoscopically.

There are generally two types of laparoscopic surgery: resection (or excision) or ablation. "An endometriosis resection means we remove the entire lesion but conserve the uterus and ovaries and other organs, and in this case, the recurrence is very low; but an ablation only burns off the superficial layer of the lesion, so historically, the recurrence rate is much higher," Huang says. Although conservative-therapy surgeries can successfully treat endometriosis, they are still invasive and costly procedures. So for many women, they simply aren't an option.

Hysterectomies — which remove the entire uterus — do not cure endometriosis and the pain can still come back.

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"If you only have endometriosis, I won't recommend a hysterectomy," Huang says. Another problem with hysterectomies is that the pain can still come back. "A hysterectomy doesn't always help because endometriosis is, by definition, an extrauterine disease, which means it exists outside the uterus. So as long as you still have your ovaries and your hormones, then any endometrial tissue can bleed again and cause pain," Huang says. A hysterectomy only removes the uterus (and the cervix, if it's a total hysterectomy), not the ovaries.

"I don't suggest it as a treatment for endometriosis, but if the woman brings it up or demands that she wants her uterus removed and doesn't want children, then we'll discuss it," Huang says. However, a hysterectomy can help if you have a condition called adenomyosis, Huang says, which means the endometrial tissue has invaded the muscle tissue of the uterus. Sometimes people have both endometriosis and adenomyosis, but the hysterectomy can really only "cure" the latter. Dunham did not confirm whether she had adenomyosis.

And because a hysterectomy makes it impossible to conceive without a surrogate, it isn't an option for many women who want to have children.

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When a patient wants a hysterectomy, there are a few important factors to consider, such as age, fertility concerns, pain level, and the risks and benefits of the procedure. "We really need to understand the patient's goals and what they are trying to achieve ... usually, the patient has tried multiple therapies and it's a last resort," Huang says. For women who want a hysterectomy but still want children, they will have to take the long and costly road of IVF and surrogacy to get there. So it's not an easy decision by any means.

"I encourage people who have endometriosis to do their research and always get a second opinion about their treatment options," Huang says.

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"Our primary goal is to understand how endometriosis is affecting the patient's life and what we are trying to fix, and to explore all of the treatment options before jumping into surgery," Huang says. However, the range in treatment options for endometriosis means you may get very different recommendations depending on the doctor, and not all of them are experienced with treating endometriosis.

So if you have endometriosis or you think you have it, you should do your own research beforehand and go to your OB-GYN ready to ask all your questions. "Then, go see someone else and ask the same questions, because it's always good to get a second opinion ... there's really nothing preventing you from seeing another doctor," Huang says.

While Dunham's decision to get a hysterectomy might have been an unusual one, it did highlight an important point: Endometriosis can be incredibly painful and frustrating.

Endometriosis affects 1 in 10 women of reproductive age — so if you have it, know that you aren't alone.

A BuzzFeed News investigation, in partnership with the International Consortium of Investigative Journalists, based on thousands of documents the government didn't want you to see.