Lena Dunham Had a Total Hysterectomy to Treat Her Endometriosis
By Zahra Barnes | Originally Published February 14, 2018 on Self | Featuring Dr. Sherry Ross
Lena Dunham revealed in the March 2018 issue of Vogue that she recently underwent a total hysterectomy in an effort to find lasting relief from endometriosis. Portions of the essay were excerpted by The Endometriosis Foundation of America yesterday.
Endometriosis is a debilitatingly painful reproductive health condition that happens when tissue from the lining of the uterus grows on other organs. (Or, as some experts say, when tissue that is similar to uterine lining but different—and able to make its own estrogen—migrates to other organs.) In the essay, Dunham discusses how she came to the decision to have a total hysterectomy that would remove her uterus and cervix after years of surgeries, alternative treatments, and endometriosis causing “the greatest amount of physical pain” she’s ever experienced.
You’ve probably heard of a hysterectomy before, but you may not be totally sure what this medical procedure entails, why it’s done, and how having one can affect a person’s life. Here, experts share the most up-to-date information you need to know about hysterectomies.
What is a hysterectomy?
A hysterectomy is a surgical procedure that involves removing a woman’s uterus, but there are actually three types, according to the U.S. Department of Health and Human Service’s Office on Women’s Health:
1. “Partial” hysterectomy (also known as subtotal or supracervical): Only the uterus is removed.
2. “Total” hysterectomy: The uterus and cervix are both removed.
3. “Radical” hysterectomy: Along with the uterus and cervix, the tissue on both sides of the cervix is removed, as is the upper part of the vagina.
In all cases, a hysterectomy makes it impossible to carry a pregnancy since the uterus is gone. That’s part of why the decision to get one can be so complex. But, as Dunham mentions in her essay, there are still options for someone who wants to have children after a hysterectomy. Those options will depend on the person, but may include surrogacy, adoption, or using your own eggs with a gestational carrier.
“I may have felt choiceless before, but I know I have choices now,” Dunham wrote in the essay. “Soon I’ll start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs. Adoption is a thrilling truth I’ll pursue with all my might.”
Removing the ovaries and fallopian tubes isn’t always necessary with a hysterectomy.
Removing someone’s ovaries is known as an oophorectomy, and unless there’s a specific reason to do it, like a person having ovarian cancer, surgeons may elect to keep them in, Tim Ryntz, M.D., ob/gyn at ColumbiaDoctors and assistant professor of Obstetrics & Gynecology at Columbia University Medical Center, tells SELF.
Also worth knowing: Removing the ovaries is the only way in which a hysterectomy can bring about early menopause. “There’s a common misconception that a hysterectomy means putting a patient into menopause, but that doesn’t happen if the ovaries stay in place,” Dr. Ryntz says. In that case, you’ll continue to have the same hormonal fluctuations as you did before the hysterectomy, you just won’t have a period.
As for the fallopian tubes, experts are increasingly removing them in a procedure known as a salpingectomy because it may reduce a person’s lifetime risk of ovarian cancer, Dr. Ryntz says. They’re even doing this for people who aren’t actually at a higher risk of ovarian cancer, since their only known purpose is really to transfer eggs to the uterus for fertilization and implantation—once the uterus is gone, there’s no need for them. That may sound confusing—if you’re worried about ovarian cancer, why leave the ovaries but not the fallopian tubes? As it turns out, emerging research has shown that some ovarian cancers actually originate in the fallopian tubes. Removing these structures and leaving the ovaries (either forever or until a later surgery) may make sense for some people. It might even be an option for some women who have BRCA 1 or 2 gene mutations, which predispose them to ovarian cancer, if they don’t yet want to remove their ovaries and go into early menopause.
Removing both the ovaries and fallopian tubes, in a procedure known as a salpingo-oophorectomy, is also an option that may make sense depending on a person’s situation.
While not considered a first-line treatment, hysterectomy is sometimes performed in people with severe endometriosis, like Dunham.
Overall, experts are championing newer, less invasive techniques for treating this health condition, which can cause severe bleeding, debilitating pain, and infertility. But in some cases, they will recommend a hysterectomy for endometriosis if nothing else has worked.
The cause of endometriosis isn’t completely clear, and that’s part of why it’s often so hard to treat. Endometriosis was long thought to happen when endometrial tissue lining the uterus traveled to other organs, typically via retrograde menstruation, which occurs when some menstrual blood flows back through the fallopian tubes into the pelvis instead of simply exiting through the cervix. Women with endometriosis may have immune systems that aren’t as easily able to clean up this debris, Pamela Stratton, M.D., in the office of the clinical director at the National Institute of Neurological Disorders and Stroke, where she studies the link between endometriosis and pain, and an advisor at the Boston Center for Endometriosis, tells SELF. This, theoretically, allows it to attach to various organs, grow, bleed, and generally wreak havoc on a person’s health.
More recently there is a debate around whether these aren’t actually endometrial cells, but cells that can make their own estrogen instead. Or, it may be that these are endometrial cells, but they act differently in women with endometriosis: “They might look the same, but on a molecular level we can see [the endometrial lining in women with endometriosis] is an estrogen-dominant, progesterone-resistant environment, which means it’s pro-inflammatory and feeds into the release of chemicals, like cytokines, that stimulate or result in pain,” Dr. Stratton says.
All of this is to say that for decades, experts thought endometriosis was strictly related to pelvic pain that happened in relation to a person’s period, so a hysterectomy was seen as the best treatment. “[The thinking was that] if you don’t have a uterus, it treats the pain,” Dr. Stratton says. But doctors started realizing that endometriosis-related pain sometimes persisted in women who had had hysterectomies, potentially due to a lack of oophorectomy or endometriosis’ ability to cause long-lasting damage to the central nervous system. Now, laparoscopic surgery to excise every detectable endometrial lesion is considered the gold standard, Dr. Stratton says. Still, if the pain doesn’t go away after multiple laparoscopies, a woman may elect to do a hysterectomy and oophorectomy to remove the uterus and target estrogen production.
That’s typically considered a last resort, though. If you have endometriosis, your doctor may first recommend nonsteroidal anti-inflammatory drugs (NSAIDs) or stronger pain relievers, along with hormonal birth control (often progestin-only to avoid adding more estrogen to the situation) before taking more invasive measures, Dr. Ross says.
Why else might someone get a hysterectomy?
Here are the most common reasons doctors will recommend someone consider a hysterectomy:
If you have fibroids, doctors will first recommend you try to control your symptoms with pain relievers like NSAIDs, or hormonal birth control to reduce pain and bleeding by suppressing ovulation or making your period shorter, Sherry Ross, M.D., ob/gyn and women’s health expert at Providence Saint John’s Health Center in Santa Monica, California, and author of She-ology, tells SELF. If your symptoms still flare up, your doctor might try methods like a myomectomy (removing the fibroid) or embolization to cut off the blood flow to these growths. If none of those works and your fibroids are still causing severe symptoms, your doctor may then recommend a hysterectomy.
2. Adenomyosis: This painful condition stems from endometrial tissue, which typically lines the uterus, growing into the walls of the uterus instead. Like fibroids, adenomyosis can cause intense pain and bleeding, and doctors will typically first recommend NSAIDs or other medications to manage the pain. They may also recommend birth control to make your period less hellish. If these types of treatments don’t work, Dr. Ryntz says, a hysterectomy to completely remove the uterus will, since the condition only happens when tissue is able to grow into the muscle of the organ.
3. Bleeding during or after childbirth: Uterine complications during or after childbirth, like when the organ doesn’t contract properly after the baby is out (this is known as uterine atony), can lead to severe hemorrhaging. Your doctor may first try to stem the flow with methods like inserting a balloon into the uterus to apply pressure from within, Jessica Ritch, M.D., a minimally invasive gynecologist at the Florida Center for Urogynecology, tells SELF. Depending on the severity of the bleeding (and the patient’s wishes if they’re able to give them), a hysterectomy may be necessary to save a person’s life.
4. Pelvic organ prolapse: This happens when the muscles and ligaments that keep pelvic organs including the uterus in place start to slacken, and the organs protrude into the vagina.
Treatments may at first include pelvic floor physical therapy, or using a device called a pessary that goes inside the vagina to prevent prolapse. If those don’t work, a hysterectomy can help relieve the sensations of pressure on and fullness in the vagina, and also help to relieve incontinence that may come along with pelvic organ prolapse, Dr. Ryntz says.
5. Endometrial, uterine, or cervical cancer: The treatment plan for these cancers often includes a hysterectomy, although the type depends on various factors, like where the cancer is located and whether it’s spread. “When you start talking about cancer, it’s really opening up a completely different can of worms,” Dr. Ryntz says.
How are hysterectomies performed?
There are a few different methods of performing a hysterectomy, and the type that’s performed will depend on each patient’s situation. “The ideal would be to do the most minimally invasive hysterectomy possible for the patient,” Dr. Ritch says. Here’s what’s available:
1. “Open” or abdominal hysterectomy: This is done either via a low horizontal incision on the abdomen, like a C-section, or a vertical incision from just below your belly button to just above your pubic bone. Open hysterectomies are most common if someone has an enlarged uterus for some reason, like fibroids. “They have become less and less common as technology has allowed us to do other surgeries,” Dr. Ryntz says, adding that recovery from this type of hysterectomy typically involves a hospital stay of at least a few nights, and usually more pain and less mobility while healing than other forms.
2. Vaginal hysterectomy: This is done through an incision in the vagina and is less invasive than an abdominal hysterectomy; it typically involves a shorter stay in the hospital and less pain.
3. Laparoscopic/robotic hysterectomies: This is performed with a laparoscope, or a lit tube with a camera that allows the surgeon to see inside the abdomen. It requires much smaller incisions than other forms of hysterectomy, and sometimes doctors can even increase their precision with the help of a robot. The uterus is then removed through the vagina, through the laparoscopic incisions (sometimes with the help of morcellation, a technique to safely break a large mass down into smaller parts), or through a slightly larger incision in the abdominal wall, Dr. Ritch says. Some people with this kind of hysterectomy may even be discharged on the same day, and it typically offers the easiest recovery experience.
No matter what type of hysterectomy you get, your doctor will likely recommend you wait at least six weeks before doing anything physically strenuous, like vigorous exercise or lifting heavy objects.
What should I do if my doctor thinks I need a hysterectomy?
Make sure a hysterectomy is truly necessary in your case or the best option for you. If it is, you should also evaluate whether your doctor is the ideal person to perform your surgery. Here are some questions Dr. Ritch recommends you ask:
- Why are you recommending a hysterectomy for me?
- What are my alternatives?
- Would this involve removing my cervix? What about my ovaries, fallopian tubes, and the upper part of my vagina?
- Which fertility-preserving measures are available to me, if I would like children/more children in the future?
- Which route of hysterectomy makes the most sense for me?
- What can I expect during the recovery process?
- What is your experience level with this surgery? Have you had any sort of fellowship training in hysterectomy? Is it your subspecialty?
No matter your doctor’s answers, consult with another doctor if it’s feasible for you and you’re at all uncertain (or you just want the extra peace of mind). “In today’s world, with the medicine and treatment options we have, at least get a second opinion when you’re having a conversation about surgery,” Dr. Ross says. “You have to be your own best advocate.”