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An Endometriosis Expert on Why Lena Dunham’s Hysterectomy Is Unusual

Yesterday, in a personal essay for Vogue, Lena Dunham disclosed her recent hysterectomy, which she elected to receive, she writes, after eight prior surgeries and “battling endometriosis for a decade.” She also acknowledges that her decision was made somewhat counter to the advice of her doctors (“no doctor has ever confirmed” that her uterus is “defective,” she writes), and that it won’t be the right decision for everyone.

To get more information on whether and how a hysterectomy can treat endometriosis, the Cut reached out to Dr. Kathy Huang, the director of the Endometriosis Center at NYU Langone Medical Center.

After yesterday’s news that Lena Dunham had a hysterectomy for her endometriosis —
You’re kidding me, Lena Dunham had a hysterectomy?

Yeah, she did.
I had no idea. Oh my god, I totally want to talk about this now. First of all, you should not get a hysterectomy for endometriosis. I’m going to start with that. That’s not actually the definitive treatment. A hysterectomy just removes the uterus. It doesn’t actually fix the endometriosis, because those lesions are outside of the uterus.

When might a hysterectomy be helpful?
The condition it would help is if it’s adenomyosis, when the lining of the uterus goes into the muscle layer of the uterus. Then a hysterectomy would help. It certainly should not be our first line of therapy, and often doing that doesn’t actually help at all.

A 2014 paper pointed out that some women do still have endo pain after getting a hysterectomy.
Right. By definition, the endometriosis is outside the uterus. So if you do a hysterectomy, that only removes the uterus, and not the lesions outside it, unless you do that also at the time of the surgery. But simply performing a hysterectomy doesn’t help the extra-uterine lesions.

What do women with endometriosis experience after a hysterectomy?
It sometimes can relieve some of the pain. Let’s say their pain is concentrated during their period, and they have a lot of cramping. Then it’ll help with that type of pain for sure, because you no longer have periods after a hysterectomy. But there’s also a very common misconception about hysterectomies — a lot of women think a hysterectomy means removal of her ovaries as well. That’s not true. If you do have your ovaries removed, yes, then it would help. What happens with menses every month is that the lining of the uterus grows, due to estrogen and progesterone. Then, every month, if you don’t get pregnant, there’s a progesterone drop, and the lining sheds. When you have endometriosis, all of that is happening outside the uterus.

Now, if you get rid of your ovaries altogether, that area no longer bleeds because you’ll no longer have hormones. That lesion can’t grow anymore. But then you’ll become menopausal. If you’re 30 years old, and you remove your hormones, it’ll be very difficult. Those hormones give you cardiac health, they give you bone density, they give you sex drive. You want to keep your ovaries. But if you remove them, the endometriosis can never come back.

So what kind of factors might lead to the decision to have a hysterectomy (or total hysterectomy, like Dunham had, in which the cervix is also removed) to treat endometriosis?
A lot of times patients are offered that option. The only medically indicated time when a hysterectomy can help is when the patient has adenomyosis, when the uterus itself is bleeding. That’s the only time.

What are some of the other treatments patients with severe endometriosis pain might undergo?
We usually start with birth control pills if the patients don’t have contraindication [i.e., a medical reason not to]. But you can certainly have surgical treatment of endometriosis with the removal of those lesions, the spots of tissue that are elsewhere in the body. You can take those out without taking out the uterus. I do those all the time.

So the hysterectomy is an uncommon course of action?
Yes. I think the frustrating part about this for me is that I don’t know if she was well informed. Although she must be, right? She’s Lena Dunham. But if the physician who’s treating you is telling you, “Listen, this is the only way to do it,” then you might do that. Not that those doctors are intentionally telling you the wrong message, but I would highly encourage women who are offered hysterectomies for endometriosis to seek second opinions. Be part of the decision-making process. See another physician. I just want them to be well informed so they can take that power back.

Why Lena Dunham’s Hysterectomy Is Unusual