Lena Dunham has found herself at the centre of controversy again. This time people have a lot to say about her Vogue essay—and not all of the reviews have been glowing.
In the essay, which appears in the magazine’s March issue, Dunham writes about her decade-long struggle with endometriosis and her decision to get a total hysterectomy. The surgery, in Dunham’s case, involved the removal of her uterus and cervix. She describes the pain she has experienced since her diagnosis of the incurable condition—of which the symptoms range from mild to debilitating—as “unbearable.”
“I am delirious with it, and the doctors can’t really explain. The ultrasound shows no cysts, no free fluid, and certainly no baby. But that doesn’t help the fact that it hurts so bad that the human voices around me have become a sort of nonsense of Teletubbies singsong. With pain like this, I will never be able to anyone’s mother,” she writes. “Even if I could get pregnant, there’s nothing I can offer.” Here, we break down what endometriosis is, how it can be treated and how people both within and outside the medical community are reacting to Dunham’s essay.
What is endometriosis?
Endometriosis is characterized as an often painful disorder where tissue that normally lines the inside of the uterus grows outside it. The condition is chronic and progressive. Endometrial tissues can spread throughout the body—in rare cases even to the lungs and brain. When the tissue appears outside the uterus, as the Mayo Clinic explains, “it thickens, breaks down and bleeds with each menstrual cycle.” Because the displaced tissue has no way to leave the body, it becomes trapped, according to the Mayo Clinic. Trapped tissue can irritate organs, cause scar tissue and affect fertility. For some people, the pain is so severe it affects all aspects of life, including relationships and career development.
Why Dunham’s essay upset some medical professionals
While Dunham’s deeply personal account got a ton of support on social media for shedding light on the under-researched reproductive condition that effects one in 10 women, it also angered a lot of people. Perhaps most notably were the advocacy groups and myriad organizations dedicated to funding endometriosis research and spreading awareness, many of whom said Dunham’s essay was promoting a painful and irreversible procedure that is not always successful in reducing pain.
Dunham writes that she chose the nuclear option in an effort to manage her pain—and her choice didn’t come lightly. To make a case for the surgery, she says she wrote a 1,000-word essay for her doctor on why she could handle losing her uterus before turning 32. She also acknowledges: “I know that a hysterectomy isn’t the right choice for everyone… that it’s not a guarantee that this pain will disappear.”
That’s because hysterectomies are not yet definitively proven to remove symptoms of endometriosis. In fact, according to the Mayo Clinic and other medical organizations, they are often more successful in relieving the symptoms of adenomyosis—a completely separate condition where endometrial tissue breaks through the muscular wall of uterus (as opposed to growing outside it, as is the case with endometriosis), thereby creating an enlarged uterus and often causing varying degrees of pain. If a person with adenomyosis is years away from menopause, and in a lot of pain, a hysterectomy may be explored a possible treatment.
As The Mighty explains (in a post that was later re-tweeted by the Endometriosis Research Centre in Florida): “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.” One study, which looked at the recurrence of endometriosis after hysterectomy, says there is “an approximate 15-percent probability of persistent pain after standard hysterectomy with a 3- to 5-percent risk of worsening pain or new symptom development.”
This isn’t the first time Dunham has been accused of spreading misinformation about endometriosis. As The Mighty also points out, she incorrectly said (and later apologized for stating) that three months of Lupron, an injection that stimulates the production of certain hormones, was as good as excision surgery, a conservative procedure that meticulously removes rogue endometrial tissue from places where it shouldn’t be.
Here’s what some people had to say
Endometriosis is a brutal disease. I respect Lena Dunham’s right to treat her endo as she sees fit. However, it’s a problem when journalists and publications pass off hysterectomy like it’s a worthwhile treatment option. It’s not. https://t.co/A9tGJOAaY7
— Jordan Davidson (@JA_Davids) February 15, 2018
While I love when #Endometriosis is talked about, this is doing a HUGE disservice to the #endo community. A #hysterectomy is NOT a cure/treatment for endo. It cures #adenomyosis but endo is tissue SIMILAR to uterine lining thus removing uterus does NOT remove disease. #excision
— Megan (@megan_mundell) February 14, 2018
If Lena Dunham had a hysterectomy to cure her pain, that pain was not endometriosis. It could be a number of things, including adeno, where disease grows in the uterine lining as she experienced, but it was not endometriosis.
— Caroline Reilly (@ms_creilly) February 15, 2018
#endometriosis @lenadunham and Vogue have done women a huge disservice suggesting a hysterectomy treats endometriosis, it does not, sadly with cardiovascular risks now identified more women will be moved to follow her poor lead
— nancy Petersen (@nancynursez637) February 14, 2018
Don’t believe the hype. Each woman with #endometriosis is different. A hysterectomy may reduce pain in some women but it is far from guaranteed and is irreversible. Speak to your doctor about excision surgery first. @EndometriosisAu https://t.co/zFlDB5qyo0
— Dr Mike Armour (@drmikenz) February 15, 2018
Several national endometriosis organizations chimed in, too
— FTWW Wales (@FTWW_Wales) February 15, 2018
We have all seen the sensationalist headlines in recent days, but as we know hysterectomy does not treat #endometriosis. Women have, of course, had relief for other causes of pelvic pain or menorrhagia.
Please read this great piece outlining why. https://t.co/0t9RXg4PCz
— Endometriosis Association of Ireland (@endo_ireland) February 15, 2018
#hysterectomy is helpful for #adenomyosis. it is not, however, a certain cure for #endometriosis. it is entirely possible to suffer from #endo post-hyst. consult your endo specialist, not celebrity tabloids and PR firm efforts, for the best approaches to your own case and care.
— EndoResearchCenter (@EndoResCenter) February 14, 2018
Dunham’s essay is undeniably poignant and relatable for many people. And it reveals how under-researched endometriosis is (a condition that impacts 176 million women worldwide), especially since it seems like she felt a hysterectomy was her only option. But we can’t ignore how a high-profile celebrity’s personal choices for managing their health may influence some people’s medical decisions. Case in point: within 24 hours of her story running online, the BBC ran a story from a writer with the headline: “I want my womb removed like Lena Dunham.”
Whatever your personal opinion of Dunham, though, the moral of this story is clear: inform yourself on important health decisions through medical professionals, not Hollywood.
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