Each year, approximately 600,000 women have a hysterectomy — the surgical removal of the uterus — and some of those procedures occur as a treatment for endometriosis. Endometriosis is a condition that causes tissue similar to the lining of the uterus, or endometrium, to grow outside of the uterus. It can affect the lining of the pelvis, fallopian tubes, ovaries, and organs beyond the pelvic cavity, with growths that are called implants or lesions. The condition is painful, particularly during menstrual periods, and affects 1 in 10 women of childbearing age.
MyEndometriosisTeam members frequently discuss pain and discomfort with endometriosis, which is what leads many to consider hysterectomy:
To get a better understanding about the pros and cons of hysterectomy for endometriosis, MyEndometriosisTeam spoke with Dr. Georgine Lamvu, a gynecologic surgeon and specialist in pelvic pain. Dr. Lamvu is a professor in obstetrics and gynecology at the University of Central Florida in Orlando, Florida, and serves as a board member of the International Pelvic Pain Society.
Endometriosis is a complex disease that affects each person differently. “What I tell my patients is, first of all, be patient with yourself. Second of all, understand you are unique,” Dr. Lamvu said.
There are several types of hysterectomy that may be performed for endometriosis, but a hysterectomy is not considered a cure and does not guarantee that symptoms of the disease will not return. A hysterectomy is an irreversible surgery that may include removal of other organs.
Hysterectomies can be performed by four different forms of surgery, and may require a combination of more than one.
Treatment for endometriosis is aimed at reducing or eliminating pain, which can be debilitating and have a severe impact on quality of life for people with endometriosis.
In the past, hysterectomy was considered a primary treatment for endometriosis, but medical perspectives have shifted. Treatment now focuses first on medical therapies, including birth control pills to suppress menstruation and careful surgical excision and ablation of endometriosis tissue. Nonetheless, hysterectomies may be indicated for endometriosis when other treatments have failed. Although the majority of women who choose to have a hysterectomy do well, endometriosis can continue to grow in areas outside of the uterus even after a hysterectomy in rare cases, and pain may persist.
The most important factor in eliminating pain is stopping menstruation, which is sometimes achieved through hormonal medication therapies, such as contraceptives. Endometrial lesions that are outside of the uterus may be associated with heavy bleeding and blood clots during menstruation, and result in painful swelling, inflammation, and scar tissue. Surgical removal of abnormal tissue may also help control bleeding.
“If you have someone, for example, who has not achieved menstrual suppression and has tried her best with different modalities to get menstrual suppression, and the heavy bleeding and pain continue, now we have no choice,” Dr. Lamvu said. “That would be a patient, I would say, that would be ideal for hysterectomy.”
Dr. Lamvu is concerned that people with endometriosis may not understand that the disease can take many forms — also known as phenotypes — based on genetic and environmental factors. “When you talk to women with endometriosis, and when you look at the layman media they read online, they talk about endometriosis as if it’s all the same,” she said. “And they're reading that as, ‘Oh, a hysterectomy will work for me.’”
Endometriosis has often been assessed in stages 1 through 4 — from mild to severe — established by the American Society of Reproductive Medicine (ASRM). But alternative categories have been proposed for designating the severity of the disease according to the location and depth of the lesions, and based on different phenotypes. Research is still evolving, and Dr. Lamvu believes other phenotypes may be discovered and offer new insights for treatment.
The complexities of endometriosis can be misleading, Dr. Lamvu said. For instance, when menstruation is effectively suppressed but pain continues, a hysterectomy has a much lower chance of stopping the pain. “The chances of you getting pain relief with that procedure are only about 60 percent,” she said. “I don't know about you, but if an orthopedic doctor came and told me, ‘Listen, I'm going to put you through this huge surgery. There is a 40 percent chance it may not work.’ I would say, ‘No way.’”
Because the disease can be so different from one case to another, Dr. Lamvu is also concerned that women with endometriosis may think that because a hysterectomy worked for one person, it will work for them. “That’s not how this disease behaves,” she said.
Studies show that after a hysterectomy, endometriosis pain recurs in approximately 10 percent of hysterectomies in which ovaries are also removed, and in 62 percent of cases in which ovaries are retained. Removal of the ovaries, which produce estrogen, can also cause premature menopause. Retaining at least one ovary can delay menopause in premenopausal women. Removing the ovaries may be more beneficial for pain control, but it comes at a cost. Early menopause poses an increased risk for cardiovascular disease, osteoporosis, mood disorders, and mortality, among other risk factors.
If severe pain recurs after a hysterectomy, pain management therapies may be needed. In some cases, further surgical procedures may be required to remove remaining endometriosis lesions.
A total laparoscopic hysterectomy is an effective treatment for some women. During that surgery, significant effort must be made to remove all endometriosis tissue in order to decrease the chances of pain recurrence. When the ovaries are removed, hormone replacement therapy (HRT) is rarely associated with recurrent disease, and most experts advise that HRT can be started after surgery to decrease symptoms of menopause. However, this should only occur following a discussion of the risks associated with HRT, which may include an increased risk of breast cancer and deep venous thrombosis, Dr. Lamvu said.
A hysterectomy may stop all pain, but in as many as 40 percent of women, some pain may persist that will still need to be managed after the procedure. “Endometriosis is a chronic disease,” said Dr. Lamvu. “We need to stop talking about the myth of the cure.”
One MyEndometriosisTeam member described her experience, noting, “I had my uterus removed in 2018 and kept my ovaries. My pain came back after about six months, just less intense. It fluctuates and I still get flare-ups, but overall, I'm about 75 percent better from having my uterus taken out. I have absolutely no regrets about it.”
“The hysterectomy helped me a lot,” said another member.
“I had a total hysterectomy and I had relief for about three-and-a-half years. I never felt regret,” a MyEndometriosisTeam member wrote. “Though I guess there have been two or three times when I felt sad to not be able to have more kids.”
Some MyEndometriosisTeam members have expressed disappointment following their hysterectomies. One member wrote, “I had a hysterectomy in 2013, and here I still am with chronic pain minus my uterus.”
“I’m four years post-radical hysterectomy,” wrote another member. “I just had endometriosis excision surgery with a specialist and it was found in three areas.”
For others, there may be unexpected effects. “Has anyone dealt with increased anxiety since having a hysterectomy?” a member asked. “I don't know if this is really related, but I had a total hysterectomy two years ago and have had extremely bad anxiety since.”
Dr. Lamvu stressed the importance of taking time to decide about a hysterectomy or any treatment option for endometriosis. She believes it is important to have a good partnership with your gynecologist and other doctors.
“Shared decision-making takes into account the woman's individual circumstances,” Dr. Lamvu explained. “It also takes into account her wishes and her goals. A woman who has a goal to get pregnant is very different from a woman whose primary goal is to control pain. You can't treat those two patients the same, even though they both have endometriosis.”
Dr. Lamvu emphasized that shared decision-making takes time, particularly when you’re discussing serious topics, such as whether to have a hysterectomy. “It takes a back-and-forth conversation,” she said. “I tell my patients, ‘Listen, make several appointments.’”
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Are you considering a hysterectomy to treat your endometriosis? Have you had a hysterectomy and want to talk to others in the same situation? Share your experience in the comments below, or start a conversation by posting on your MyEndometriosisTeam Activities page.