Healthy Living

Lena Dunham's Endometriosis Story May Sound Familiar To 5 Million Women

The director and actress is taking some much-needed time-off.
02/09/2016 08:47am ET | Updated December 20, 2016
Danny Moloshok / Reuters

Lena Dunham, the creator of the HBO series "Girls," announced Monday that she isn't going to do any press for her TV show’s upcoming season. The reason? Endometriosis, a chronic and often painful disorder in which the endometrium, the tissue that lines the interior of the uterus, spreads beyond the organ. It can grow on other organs throughout the pelvic region, and then when it comes time for a woman's period, the displaced endometrium “sheds” blood and tissue but has nowhere to go.

"I am currently going through a rough patch with the illness and my body (along with my amazing doctors) let me know, in no uncertain terms, that it's time to rest,” Dunham wrote in an Instagram post. "That's a hard thing to do, but I'm trying, because all I want is to make season 6 of Girls the best one yet.”

The condition, which affects an estimated five million women in the U.S., can be very painful and cause scarring, cysts and irritation. Because it can scar fallopian tubes, prevent the implantation of a pregnancy and change egg quality, endometriosis is also linked to fertility problems. Thirty to 50 percent of women with an infertility diagnosis have the disorder, according to the American Society for Reproductive Medicine.

Treatment for endometriosis can include pain medications if symptoms are mild, the birth control pill or another hormonal treatments, and surgery. The best treatment for endometriosis-related infertility is in vitro fertilization, or IVF.

Dunham is already an outspoken advocate for women with endometriosis. In her 2014 memoir Not That Kind Of Girl, she wrote that the pain of endometriosis initially felt like “someone had poured a drop of vinegar inside of me, followed by a sprinkle of baking soda. It bubbled and fizzed and went where it would.”

She said she went on to have other classic signs of endometriosis, like pain during sex, and was eventually diagnosed after a vaginal ultrasound. Dunham's gynecologist found signs of adenomyosis, when the endometrium grows into the muscles around the uterus. Here’s the moment she learned about her diagnosis with vividly remembered, Dunham-esque details from Not That Kind Of Girl:

In the drawing [my gynecologist] showed me, it looked like hundreds of seed pearls working their way into soft pink velvet. He was kind enough to also show me some photographs he had taken during laparoscopic surgeries, of cases worse than my own. The photos looked like the remains of a wedding: rice scattered, cake smushed. A little bit of blood.

Perhaps the most insidious aspect of endometriosis is that it’s difficult to diagnose, which means women have to suffer in silence or think their pain is normal before they see a doctor who is experienced in diagnosing it.

In a Nov. 2015 essay for Lenny Letter, the newsletter she founded, Dunham got candid about the condition again. She wrote that ever since she started having period pain as a teenager, doctors had diagnosed her with everything from food poisoning to colitis to a simple urinary tract infection. The lack of a definitive answer caused others, and even Dunham herself, to doubt her pain.

Writer, TV show host and model Padma Lakshmi, who also has endometriosis, put it this way in Lenny Letter the same month: “if you can’t even identify it, if you don’t even know what you’re managing, then you don’t have a fighting chance.”

After her diagnosis, Dunham went on to have a laproscopic surgery. Doctors definitively diagnosed endometriosis and removed displaced endometrium and scar tissue from inside her pelvic region. Her doctor found “stage two disease" on her bladder, liver and appendix, she wrote, and the appendix in particular showed signs of long-term infection. With the scar tissue gone, Dunham said she felt better than she ever had in ten years.

"The illness, nausea, heaviness, and fatigue were replaced by an alien absence of sensation,” Dunham wrote. "Is this what it's like to have a body? I wondered. A regular body?”

But, as many women with endometriosis can attest, the gains from surgery were short-lived for Dunham, and her symptoms returned after six months. Dunham ended her essay with a description of her latest treatment: Lupron injections, which lower estrogen levels to make a woman's menstrual period -- and her endometrial pain -- stop.

From the looks of Dunham’s latest post on Instagram, her new treatment protocol also involves some R&R. Here’s hoping she can take a much-needed break. We’ll all be here when she gets back.

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