Each year, surgeons perform approximately 500,000 hysterectomies in the U.S., making it the second most common surgery among women. A hysterectomy is the surgical removal of the uterus and may be done to treat endometriosis.

Endometriosis is a condition where tissue similar to the lining of the uterus (called the endometrium) grows 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.

One MyEndometriosisTeam member shared, “I’m two years post-total hysterectomy. Saved my life. I’ve been pain-free since, and it was the easiest procedure I’ve had. It may not be for everyone, but it was the best choice for me.” Another member wrote, “I had a hysterectomy, removed my uterus, and I still feel chronic pain. Ugh!!!”

To better understand the pros and cons of hysterectomy for endometriosis, MyEndometriosisTeam spoke with Dr. Georgine Lamvu, a gynecologic surgeon and pelvic pain specialist. Dr. Lamvu is a professor of obstetrics and gynecology at the University of Central Florida in Orlando and serves as chair of the board for the International Pelvic Pain Society.

Dr. Lamvu explained that endometriosis is a complex disease that affects everyone differently. “What I tell my patients is, first of all, be patient with yourself,” she said. “Second of all, understand that you are unique.”

Types of Hysterectomy for Endometriosis

There are several types of hysterectomy that may be performed for endometriosis. However, it’s important to know that a hysterectomy isn’t considered a cure and doesn’t guarantee that symptoms won’t return. A hysterectomy is an irreversible surgery that may also involve the removal of other organs.

• Total hysterectomy — Removal of the entire uterus and cervix
• Supracervical hysterectomy — Also called subtotal or partial hysterectomy. During this procedure, the upper uterus is removed, but the cervix remains intact.
• Salpingo-oophorectomy — Removal of one or both fallopian tubes and ovaries
• Radical hysterectomy — Removal of the uterus, cervix, ovaries, fallopian tubes, parts of the vagina, and nearby lymph nodes. This is usually done when cancer is present.

Hysterectomies can be performed using four different types of surgery and may require a combination of methods.

• Abdominal hysterectomy — An incision is made through the abdominal wall.
• Vaginal hysterectomy — No external incision is made. The uterus is removed through the opening in the vagina.
• Laparoscopic hysterectomy — Small incisions are made in the lower abdomen, and a camera is used to guide the surgery.
• Robotic hysterectomy — Small incisions are made in the lower abdomen, and surgery is done using high-definition imaging and small robotic instruments.

When Is Hysterectomy Indicated for Endometriosis?

The main goal of treatment for endometriosis is to reduce or eliminate pain. This pain can be severe and can greatly affect quality of life for people with endometriosis.

In the past, hysterectomy was considered the main treatment for endometriosis. However, medical perspectives have changed. Today, the first line of treatment focuses on medical therapies, such as birth control pills to suppress menstruation, as well as careful surgical excision (removal) and ablation of endometriosis tissue.

Hysterectomies may still be recommended for endometriosis when other treatments have failed. While most people do well after undergoing a hysterectomy, it’s important to understand that endometriosis can continue to grow outside of the uterus even after a hysterectomy in rare cases, and pain may persist even after the procedure.

Some studies suggest that combining a hysterectomy with surgical removal of endometriosis lesions may reduce pain more effectively than only removing endometriosis tissue. It’s important to discuss possible outcomes with your doctor to decide if surgery is the best option for you.

Dr. Lamvu warned that just because a hysterectomy worked for one person with endometriosis, it doesn’t mean it will work for everyone. “That’s not how this disease behaves,” she said. Below are some factors you and your doctor might consider when discussing a hysterectomy.

Menstruation Suppression

The most important factor in eliminating endometriosis pain is stopping menstruation. Stopping the menstrual cycle is sometimes achieved through hormonal medication therapies, such as contraceptives. Endometrial lesions outside the uterus can cause heavy bleeding and blood clots during menstruation. This can lead to painful swelling, inflammation, and scar tissue.

Dr. Lamvu explained, “If someone has tried her best to suppress menstruation with different modalities but continues to experience heavy bleeding and pain, then we have no choice. That patient would be an ideal candidate for a hysterectomy.”

Severity of Disease

Dr. Lamvu emphasized that endometriosis can take many forms. The different types (referred to as phenotypes) are based on genetic and environmental factors. “People often talk about endometriosis as if it’s all the same,” she said. “They read about it online and assume that a hysterectomy will work for them.”

Endometriosis is often classified into stages 1 through 4 — ranging from mild to severe — as established by the American Society of Reproductive Medicine (ASRM). However, new categories have been proposed to classify the disease based on lesion location and depth, as well as different disease phenotypes. Research is still evolving, and Dr. Lamvu said she believes other phenotypes may be discovered, which may provide more insight into how best to treat the condition.

Pain With or Without Periods

If menstruation is successfully suppressed but pain continues, a hysterectomy is much less likely to stop the pain. “The chances of you getting pain relief with that procedure are only about 60 percent,” Dr. Lamvu said. “If an orthopedic surgeon told me there was a 40 percent chance a major surgery won’t work, I would say ‘no way.’”

Talk to your doctor about alternatives to hysterectomy for endometriosis before deciding whether to undergo this procedure.

Hysterectomy Outcomes

A study showed that about 21.6 percent of participants who had a hysterectomy experienced severe endometriosis pain again after 37 months or more. The study also looked at the percentage of women who experienced severe pain depending on whether their ovaries were removed during surgery:

• Hysterectomy with ovaries removed — 20 percent experienced severe pain after 37 months or more
• Hysterectomy without ovaries removed — 22.6 percent experienced severe pain after 37 months or more

Removal of the ovaries, which produce estrogen, can also lead to premature menopause. For people who are premenopausal, keeping at least one ovary can delay menopause. While removing the ovaries may help control pain, it also comes with risks. Early menopause carries an increased risk for heart disease, osteoporosis, mood disorders, and Parkinson’s disease, among other health concerns.

If severe pain returns after a hysterectomy, you may need ongoing pain management therapies. Contact your doctor if you experience any symptoms of endometriosis after your hysterectomy. In some cases, you may require further surgical procedures to remove any remaining endometriosis lesions.

A total hysterectomy can be an effective treatment for some people with endometriosis. During that procedure, the surgeon must make a significant effort to remove all endometriosis tissue. This will decrease the chances that pain will return. If the ovaries are also removed, hormone replacement therapy (HRT) is typically not linked to the return of endometriosis.

Most doctors recommend starting HRT after surgery to reduce menopause symptoms. However, it’s important to talk to your doctor about the risks of HRT, which may include an increased risk of breast cancer and deep venous thrombosis (blood clots), Dr. Lamvu said.

Newer HRT options and recent research on HRT may help lower some of these risks. Always discuss your personal risk profile with your gynecology team to decide if HRT is right for you.

Benefits of Hysterectomy

A hysterectomy may stop severe pain for many people, but it’s important to know that some pain may persist. Studies show that in up to 68 percent of cases, pain continues to some degree after the procedure and will need ongoing management. “Endometriosis is a chronic disease,” said Dr. Lamvu. “We need to stop talking about the myth of the cure.”

One MyEndometriosisTeam member shared their experience: “I had my uterus removed in 2018 and kept my ovaries. My pain came back after about six months, but it was 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.

Another MyEndometriosisTeam member said, “I had a total hysterectomy, and I had relief for about three and a half years. I never felt regret. Though I guess there have been two or three times when I felt sad about not being able to have more kids.”

Drawbacks of a Hysterectomy

Before choosing to have a hysterectomy, it’s important to take into account the possible drawbacks. A hysterectomy is major surgery with a long recovery period, and there’s no guarantee it will make your pain go away completely. Additionally, a hysterectomy makes it impossible to get pregnant. If both ovaries are removed, it can also cause early menopause.

Some MyEndometriosisTeam members have expressed disappointment after their hysterectomies. One member shared, “I had a hysterectomy in 2013, and here I still am with chronic pain — minus my uterus.”

Another wrote, “I’m four years post-radical hysterectomy. I just had endometriosis excision surgery with a specialist, and it was found in three areas.”

For some, there may be unexpected effects. “Has anyone dealt with increased anxiety since having a hysterectomy?” one member asked. “I don't know if this is related, but I had a total hysterectomy two years ago and have had extremely bad anxiety since.”

Talk Openly With Your Doctors

Dr. Lamvu stressed the importance of taking time to consider a hysterectomy or any treatment option for endometriosis. She believes it’s important to have a good partnership with your gynecologist and other health care providers.

“Shared decision-making considers the woman’s individual circumstances,” Dr. Lamvu explained. “It also takes into account her wishes and her goals. A woman who wants to get pregnant is very different from a woman whose primary goal is to control pain. You can’t treat both patients the same, even though they both have endometriosis.”

Dr. Lamvu emphasized that shared decision-making takes time, especially when discussing serious decisions, such as whether to have a hysterectomy. “It requires a back-and-forth conversation,” she said. “I tell my patients, ‘Make several appointments if needed.’”

Find a Supportive Community

MyEndometriosisTeam is the social network for people with endometriosis and their loved ones. On MyEndometriosisTeam, more than 136,000 people come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.

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