There are many different therapies for endometriosis, a condition that causes severe pelvic pain and bleeding, but hysterectomies typically aren’t one of them.
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.
Dunham, best known for her HBO series “Girls,” wrote that she chose to have her uterus removed after a decade-long battle with endometriosis. According to the essay, Dunham chose to have the procedure as a last-ditch-effort to ease pain that continued, unabated, through many different treatment regimens.
“I go to pelvic-floor therapy, massage therapy, pain therapy, color therapy, acupuncture, yoga, and a brief yet horrifying foray into vaginal massage from a stranger. I am determined to outmaneuver whatever is eating me from the inside. But I can only run so well with cement blocks strapped to my feet. Finally I ask my doctor if my uterus needs to come out. She says, 'let's wait and see',” Dunham wrote. Two days after this conversation, Dunham wrote that she checked herself into the hospital, determined to leave without a uterus.
Hysterectomies are not a common treatment for endometriosis. Dunham wrote that it took six days in the hospital, a 1,000-word letter as proof of consent, three therapy sessions, and an unsuccessful dilation and curettage procedure until she finally convinced her doctors to perform a hysterectomy. So what exactly is the standard of care for this painful condition? We spoke to an expert to find out.
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.
“The endometrial tissue behaves just like it does when it's inside the uterus, which means it responds to hormones and thickens and bleeds every time you have a period,” Dr. Kathy Huang, the director of the Endometriosis Center at NYU Langone Health, tells BuzzFeed News. The tissue typically grows on pelvic organs such as the ovaries, fallopian tubes, bladder, and bowel, Huang says. In rare cases, it can grow on organs elsewhere in the body, such as the lungs or even the brain. The exact cause of endometriosis is unknown.
“Because the blood has nowhere to go and it gets trapped in the body, this can cause inflammation… so wherever the lesions or endometrial tissue is, there's a lot of scarring and pain, usually during the period,” Huang says. So the most common symptoms are pelvic pain, painful periods, pain during intercourse, bowel issues, and excessive bleeding.
The pain associated with endometriosis is not something that goes away after popping some ibuprofen and using a hot water bottle. It's often described as excruciating, persistent, and even debilitating. When endometriosis goes undiagnosed and/or untreated, Huang says, the scarring can become so severe that the areas with lesions hurt all the time, not just during a period. Long-term complications can include infertility, pelvic cysts, “chocolate” cysts on the ovaries, and even bowel obstructions.
There is no cure for endometriosis, but you can treat symptoms with hormonal birth control pills, pain medication, and pelvic floor therapy.
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 a 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 contraceptives, 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.
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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.
“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.
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Hysterectomies — which remove the entire uterus — do not cure endometriosis and the pain can still come back.
“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), but 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.
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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.
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.
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“I encourage people who have endometriosis to do their research and always get a second opinion about their treatment options,” Huang says.
“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 OBGYN 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.
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While Dunham’s decision to get a hysterectomy might’ve been an unusual one, it did highlight an important point: endometriosis can be incredibly painful and frustrating.
Dunham explains that the decision to remove her uterus was not easy, and there were a lot of emotions involved. “Because I had to work so hard to have my pain acknowledged, there was no time to feel fear or grief. To say goodbye. I made a choice that never was a choice for me, yet mourning feels like a luxury I don’t have,” she wrote.
Endometriosis can be difficult to diagnose and treat, and people can experience frustration from years of being misdiagnosed or not being given the right care. “Many women are not properly treated for the disease,” Huang says. Unfortunately, many women also go undiagnosed, so it's important to see an OBGYN if you think you have symptoms. “If you're having a lot of pain during your period, that isn't normal — it doesn't always mean you have endometriosis — but it isn't normal, so you should go see a doctor to find out why you're having the pain,” Huang says.
Endometriosis affects one in ten women of reproductive age — so if you have it, know that you aren’t alone.