Each year, surgeons perform about 600,000 hysterectomies in the U.S., making it the second most common surgery for women. A hysterectomy is the surgical removal of the uterus. In some cases, it’s used to help treat endometriosis.

In endometriosis, 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, and ovaries. In rare cases, it can also affect other organs. The growths 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.”

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

Several types of hysterectomies may be performed for endometriosis. However, it’s important to know that a hysterectomy isn’t considered a cure. It also doesn’t guarantee that symptoms will go away permanently. A hysterectomy is a surgery that cannot be undone and might also remove other organs besides the uterus.

• Total hysterectomy — Removal of the entire uterus and cervix
• Supracervical hysterectomy (subtotal or partial hysterectomy) — Upper uterus is removed, but the cervix isn’t
• 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 (usually to treat cancer)

Hysterectomies can be performed using four different types or a combination of surgeries:

• 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.

How Can a Hysterectomy Help Endometriosis?

Endometriosis pain can be severe and have a big impact on your quality of life. The main goal of treatment for endometriosis is to reduce or eliminate pain.

Healthcare providers usually try other treatments before hysterectomy, like birth control pills to stop periods and surgical removal of endometriosis tissue.

Hysterectomies may still be recommended when other treatments have failed. Most people feel better after a hysterectomy, but in rare cases, endometrial tissue can still grow outside the uterus, and pain may continue even after the surgery.

Some studies suggest that combining a hysterectomy with surgical removal of endometriosis lesions may reduce pain more effectively than only removing endometriosis tissue.

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.

When Menstrual Suppression Doesn’t Work

Hormone therapy (including birth control) can help ease endometriosis symptoms. Endometriosis pain is usually much worse during the menstrual cycle. Using treatment to have lighter or no menstrual periods can reduce pain and may slow down the abnormal tissue growth.

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

When Endometriosis Is Severe

Dr. Lamvu emphasized that endometriosis can take many forms. The different types, called phenotypes, depend on your genes and factors in your environment. “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, it’s also important to consider other factors, like your level of pain or where the lesions are located.

Dr. Lamvu said she believes other types of endometriosis may be discovered, which may provide more insight into how best to treat the condition.

Pain With or Without Periods

If menstruation is under control but you still have pain, a hysterectomy probably won’t help as much. “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.’”

Hysterectomy Outcomes

A study from 2020 showed that about 21.6 percent of participants who had a hysterectomy had severe endometriosis pain again after 37 months or more. The study also looked at the percentage of women who had 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 longer

Removal of the ovaries, which produce estrogen, can also lead to premature menopause. Before menopause, keeping at least one ovary can help. Although removing the ovaries may help control pain, it also comes with risks. Going through menopause early can raise your chances of health problems like heart disease, osteoporosis (weak bones), mood changes, and Parkinson’s disease.

Unfortunately, if severe pain comes back, it may need more treatment. Sometimes, another surgery can also help.

A total hysterectomy can help treat endometriosis for some people, but it doesn’t always make symptoms go away completely. During surgery, the doctor has to work carefully to remove all the endometriosis tissue. This will decrease the chances that pain will return. If the ovaries are also removed, hormone replacement therapy (HRT), which replaces estrogen and other hormones, doesn’t usually cause endometriosis to come back.

Most doctors recommend starting HRT after surgery to reduce menopause symptoms, like hot flashes. 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. Fortunately, HRT today isn’t as risky as it was in the past, but you should review your risks with your healthcare provider.

Pros of Hysterectomy

A hysterectomy may stop severe pain for many people with endometriosis, but some pain may continue. Nonetheless, studies from BJOG: An International Journal of Obstetrics & Gynaecology show that 76 percent of women had less severe pain, and 84 percent are glad they had the procedure. “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.”

Cons of Hysterectomy

Before making a decision, carefully weigh the pros and cons with your healthcare provider. A hysterectomy is a major surgery, and it takes a long time to recover. There’s no guarantee it will make your pain go away completely. Additionally, a hysterectomy leads to infertility. If both ovaries are removed, it can also trigger 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.”

Find Doctors You Trust and Have Open Conversations

According to recent clinical guidelines, hysterectomy shouldn’t be considered a cure for endometriosis. The procedure comes with risks and potential benefits. For some people, a hysterectomy doesn’t resolve their endometriosis symptoms.

Managing your symptoms with medication or hormone treatment is a key first step before considering surgery. Imaging tests can help your provider predict if surgery is right for you. The choice to have a hysterectomy must be made as a team. It’s important to understand how it’ll affect your future.

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

“Shared decision-making considers a 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 said that making decisions together with your healthcare provider takes time, especially for big choices like having a hysterectomy. “It requires a back-and-forth conversation,” she said. “I tell my patients, ‘Make several appointments if needed.’”

Talk With Others Who Understand

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

Are you considering a hysterectomy to treat your endometriosis? Or, have you already 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 Activities page.