Lena Dunham Has Hysterectomy for Endometriosis -- But It's Not a Cure

Sometimes the news isn’t as straightforward as it’s made to seem. Jordan Davidson, The Mighty’s editorial director of news and lifestyle, explains what to keep in mind if you see this topic or similar stories in your newsfeed. This is The Mighty Takeaway.

This piece has been medically reviewed by Iris Kerin Orbuch, MD.

Lena Dunham revealed in the March edition of Vogue that she recently had a total hysterectomy — surgery to remove her uterus and cervix — to treat her endometriosis. Like anyone living with a chronic illness, what Dunham does to treat her disease is her and her doctor’s decision. There’s just one problem. Hysterectomy isn’t a cure for endometriosis. It’s not even a worthwhile treatment.

Let’s break it down.

Endometriosis is a disease where tissue similar to the lining of the uterus — known as the endometrium — is found outside of the uterus. Unless endometriosis is found on the exterior of the uterus, the uterus has nothing to do with the disease.

You can remove endometriosis from the exterior of the uterus and anywhere else it can be found through excision surgery — considered the best treatment for endometriosis. You don’t need to remove the whole uterus.

There is something a hysterectomy cures, and that is called adenomyosis. Adenomyosis occurs when cells similar to the endometrium are embedded in the muscular layers of the uterus. Adenomyosis is difficult to definitively diagnose — although signs of the condition can be detected through MRI, ultrasound, manual examination of the uterus and by a doctor listening to your symptoms.

However, the only way to definitively diagnose adenomyosis is through a hysterectomy. Once the uterus is removed, it’s sent to pathology where it’s checked for those endometrium-like cells within the walls of the uterus. Some doctors, not many, offer something called the Osada procedure that has had some success in treating the condition without removing the uterus.

Those with endometriosis can also have adenomyosis. In a survey conducted by The Mighty of 2,000 women with surgically confirmed endometriosis, 12.4 percent of women said they had been diagnosed with adenomyosis via hysterectomy. Another 20.1 percent said their doctor believes they have the condition but have not had a hysterectomy.

We don’t know whether or not Dunham has adenomyosis. If she does, a hysterectomy would relieve her adenomyosis-related symptoms. If she only has endometriosis, a hysterectomy won’t relieve her pain. Dunham also describes her uterus as “heart-shaped” and having a septum, features associated with Mullerian anomalies like a bicornuate uterus. Again, we don’t know if Dunham has a uterine anomaly, but hysterectomy isn’t used to treat either of those uterine issues.

Dunham added that she tried a number of therapies before considering a hysterectomy, including pelvic floor therapy, massage therapy, pain therapy, color therapy, acupuncture and yoga.

While alternative therapies like yoga and acupuncture can help manage pain, they don’t remove or treat endometriosis. Neither does pelvic floor therapy, though it does treat pelvic floor dysfunction, which is common in women with endometriosis. Still, it can take months of pelvic floor physical therapy before symptoms start to subside. Significant progress takes much longer — especially for those who have lived with pain for years. Dunham said she tried these therapies from “August to November.”

The issue here isn’t Dunham, though she has spread misinformation — like saying three months of Lupron is as good as excision surgery (it’s not) — before. (This was a statement she has since apologized for.)

Dunham writes beautifully, noting “that a hysterectomy isn’t the right choice for everyone,” and “That it’s not a guarantee that this pain will disappear.” The problem is her essay is presented as a valid option for women with endometriosis. At the end of her essay, Vogue includes a link that reads, “click here to learn more about getting a hysterectomy due to endometriosis.” 

You shouldn’t be getting health advice from a fashion magazine. While Vogue spoke to Dunham’s internist and her endometriosis specialist, her specialist only gave insight into fertility options post-hysterectomy. Adenomyosis was never mentioned in the article, nor was it mentioned that a hysterectomy won’t treat any endometriosis found beyond what lies on the uterus itself.

Dunham’s trajectory treating her endometriosis is one I’ve seen countless times before. In addition to being the editorial director of news & lifestyle at The Mighty, I’m also the co-founder of an organization that provides support for women with endometriosis. I can’t tell you the number of support groups I’ve led where women have cried over hysterectomies they’ve had to “cure” endometriosis, only to find out later they still had endometriosis because the only thing removed was their uterus and not the actual endometriosis cells.

However, the women who attend our support groups are sharing their journeys with about 10 or so women. Dunham is sharing her journey with the internet and her millions of followers.

We know celebrities have an effect on public health. In 2013, Angelina Jolie had a preventative mastectomy and advocated for BRCA testing — testing for the gene linked to breast cancer. In 2016, a study published in the BMJ analyzed the aftermath of Jolie’s announcement and found that insurance claims for BRCA testing went up 64 percent within 15 days of her op-ed being published.

Unlike BRCA testing, there is no quick test for endometriosis. The only way to definitely diagnose endometriosis is through pathology taken during surgery. The same goes for adenomyosis. While we should be screening more women for endometriosis, we should not be advocating for more hysterectomies. Presenting hysterectomy as a viable treatment is irresponsible — that’s not on Dunham though. It is on the journalists covering her story.

I reached out to Iris Kerin Orbuch, MD, an endometriosis specialist with more than a decade of experience treating the disease, about what you should know if you have endometriosis and are struggling to manage it.

The Mighty: Why won’t a hysterectomy work for endometriosis?

Dr. Orbuch: All [a hysterectomy] is, is removing your uterus. It’s not touching the endometriosis. There are many women who come to my office who have had a hysterectomy and are either in the same pain or worse pain because either most doctors don’t recognize the endometriosis or have the skills to excise it. Meaning they’ll just remove the uterus and leave the endometriosis behind.

The Mighty: Can endometriosis cause pain once your uterus is removed?

Dr. Orbuch: Yes, because the endometriosis is still there. It hasn’t been treated and can still cause scar tissue and adhesions.

The Mighty: When is a hysterectomy appropriate then?

Dr. Orbuch: Women need a hysterectomy if they have symptomatic adenomyosis and do not desire future fertility; have failed, don’t tolerate or have contraindications to medical treatments including the birth control pill and/or the Mirena IUD and have explored other ideologies for pain to make sure their other co-existing reasons for pain have been identified and treated. If they have pelvic floor dysfunction, they’ve completed a reasonable amount of pelvic floor physical therapy with a specialist in pelvic floor PT. If they have interstitial cystitis, they’ve completed their treatment of interstitial cystitis. And they’ve had excision of endometriosis.

If they have a revved up central nervous system because of years of pain — also know as central sensitization — and that has been adequately treated, not with opioids and not with narcotics, but rather with medicines that calm down the central nervous system. And they’ve treated that for an extended period of time, and we’ve really isolated out that adenomyosis is the true reason for a woman’s pain, then hysterectomy is warranted.

Hysterectomy is also indicated with heavy bleeding, uterine or cervical cancer, uterine prolapse and failed conservative treatments for symptomatic fibroids.

Short of that, I would never let my sister or best friend have a hysterectomy unless they’ve treated all of those things.

Header image via Twitter/Lena Dunham 2017.