Endometriosis After a Hysterectomy: Can It Come Back?

Yes, endometriosis can continue or come back after a hysterectomy. A hysterectomy removes the uterus, but endometriosis grows outside the uterus, so a hysterectomy does not always cure the symptoms or the disease.

For many people, pain gets much better after the operation. But if pain comes back, it is real and it has a cause that a doctor can look for. This guide explains what changes the chance of symptoms coming back, what a recurrence can feel like, how doctors check for it and what treatment choices you have. It is general information and not medical advice.

Why a hysterectomy does not always cure endometriosis

Endometriosis is tissue like the lining of the uterus that grows in other places. It is found on the ovaries, fallopian tubes, the lining of the belly, and the outer surfaces of the bladder, ureters, intestines and rectum. A hysterectomy takes out the uterus. Patches of endometriosis in these other places stay unless the surgeon removes them too.

There are three main reasons why symptoms can stay or return:

• Some endometriosis was left behind. Not removing all of the endometriosis is the most common reason for recurrence in the research. Deep patches can be hard to see or hard to reach during surgery.
• The ovaries still make oestrogen. Endometriosis responds to oestrogen, a hormone made in the ovaries. If one or both ovaries stay, the hormone that feeds endometriosis stays too.
• New patches can grow. Endometriosis is a long-term condition, and new lesions can form after surgery.

What changes the chance of symptoms coming back

The numbers below come from a small number of older studies, so treat them as a rough guide and not as your personal risk. Your surgeon knows what was found and removed in your operation, and can tell you more.

Whether the ovaries were kept or removed

Endometriosis is less likely to cause pain later if the ovaries are removed at the time of a hysterectomy. In one study of 138 women who had a hysterectomy for endometriosis, the difference was large:

People who kept ovary tissue had about 6 times the risk of pain coming back and 8 times the risk of more surgery. These figures come from advanced endometriosis, and only 29 people kept ovary tissue, so the numbers are not exact.

Removing the ovaries is a big decision. If you have not yet reached menopause, it brings on early menopause symptoms caused by a lack of oestrogen. Early removal of both ovaries also raises the risk of thinner bones, dementia and heart disease. So the choice to keep or remove the ovaries needs to weigh your age and the effect of early menopause on your life.

Whether the visible endometriosis was also removed

A hysterectomy for endometriosis works best when the surgeon also removes the endometriosis outside the uterus. Guidelines advise that the surgeon removes all visible endometriosis during the same operation. Careful removal of deep patches takes longer, but it leads to less recurrence, even in people who take hormone therapy later. For more on how surgeons remove endometriosis, read our guide to excision vs ablation surgery.

Overall, there is an approximate 15% chance of pain that continues after a standard hysterectomy, and a 3 to 5% chance of worse pain or new symptoms.

Hormone therapy after surgery

If both ovaries were removed, hormone replacement therapy (HRT) can ease menopause symptoms. It can also wake up endometriosis that is still there, but the risk looks small. In a study of 115 women who took HRT after both ovaries were removed (most also had a hysterectomy), endometriosis came back in 3.5% over about 4 years. It did not come back in the women who took no HRT.

The type of HRT matters. For people with a history of endometriosis, doctors are advised to use combined oestrogen and progestogen HRT, and to avoid oestrogen-only HRT, at least up to the usual age of menopause. Oestrogen-only HRT may carry a higher risk that leftover endometriosis changes into cancer.

HRT after ovary removal is a choice to make with your doctor. Early menopause has its own risks for your bones and heart, so do not stop or skip HRT without a talk first.

What a recurrence can feel like

A short daily note shows your doctor when the pain started and what it is linked to.

The most common symptoms of endometriosis after a hysterectomy are pelvic pain and pain during sex. Some people also have:

• Low back pain
• Pain in the rectum, or pain when you poop
• Bleeding from the vagina or the rectum

Endometriosis can also grow on the bladder and the bowel, so new pain when you pee or poop is worth a check.

Pain when you poop and severe pain during sex may be signs of deep endometriosis. After a hysterectomy with removal of the ovaries, endometriosis that stays is found most often on the large and small bowel. Read more about bowel endometriosis symptoms and pain during sex with endometriosis.

Other causes need a check too

Not all pain after a hysterectomy is endometriosis. Other causes include scar tissue (adhesions) from surgery, a small piece of ovary left behind (ovarian remnant syndrome) and bladder pain syndrome. Endometriosis symptoms also look like irritable bowel syndrome, urinary tract problems and infections, which your doctor needs to rule out.

This is why it helps to see a doctor and not guess. Each cause has a different treatment.

How doctors look into it

A check usually starts with your history and a pelvic exam. Then your doctor may use:

• Ultrasound. A transvaginal ultrasound is the best first imaging test for endometriosis.
• MRI. A pelvic MRI or a specialist ultrasound can show deep endometriosis and how far it goes. These scans need someone with special skill in reading them.
• Other tests. If the bowel or bladder is involved, you may need a cystoscopy or colonoscopy to look inside them. If a doctor thinks a piece of ovary was left behind, a blood test of hormone levels can give a clue.
• Laparoscopy. Keyhole surgery is the only way to confirm endometriosis, and the surgeon can remove it at the same time. Our laparoscopy preparation and recovery guide explains what to expect.

A normal scan does not always mean you do not have endometriosis. Some patches are hard to see on imaging, so a normal scan does not rule it out. If your symptoms continue, ask about a referral to a specialist endometriosis service.

Treatment choices after a hysterectomy

Treatment depends on what is causing the pain, whether you still have ovaries and whether you take HRT. Choices include:

• Pain relief. Pain medicines such as NSAIDs may relieve pain, but they do not treat the endometriosis itself.
• Hormonal treatment. Hormone medicines can slow the growth of endometriosis and help with pain. If you take HRT after ovary removal, some doctors report good results from stopping HRT and a 3-month course of a GnRH agonist, a medicine that lowers hormone levels.
• More surgery. If medicines do not help, keyhole surgery can remove all the visible endometriosis. If endometriosis is on the bowel or the ureters, the operation can be bigger, for example removing part of the bowel.

Hormone medicines often help only while you take them, and the pain often comes back when you stop. For a full list of options and how they compare, see our guide to endometriosis treatment options.

Adenomyosis is different

Adenomyosis is often confused with endometriosis, but a hysterectomy has a different effect on it. In adenomyosis, the tissue grows into the muscle wall of the uterus itself. Because a hysterectomy removes the uterus, it can cure adenomyosis.

If you had a hysterectomy for adenomyosis and still have pain, ask your doctor to check for endometriosis outside the uterus. Read more in our guide to adenomyosis vs endometriosis.

What to track and bring to your visit

Doctors find it easier to see a pattern when you bring notes. For a few weeks before your visit, write down:

• Where it hurts. Pelvis, lower back, rectum, bladder or one side.
• How bad it is. A score from 0 to 10, and what the pain stopped you doing. Our guide on how to describe pain can help.
• Pattern. When the pain started after your surgery, and if it comes in a monthly pattern even without periods.
• Bowel and bladder symptoms. Pain when you poop or pee, constipation, diarrhoea or blood.
• Pain during sex.
• Bleeding. Any bleeding from the vagina or rectum, with dates.
• Medicines and HRT. What you take, the dose, and what helped or did not help.
• Your surgery details. The date, whether your ovaries were removed, and what the surgeon found. Ask for a copy of your operation notes if you do not have one.

Endolog is a pain and symptom diary for endometriosis. You can log pain severity, where it hurts, bleeding, digestive, bowel and urinary symptoms, fatigue and flare notes, and bring a clear record to your appointment. If you prefer paper, print the free doctor appointment sheet.

When to get help

Get urgent medical help if you have:

• Sudden, severe pain in your belly or pelvis
• Pain with a fever, chills or vomiting
• Heavy bleeding from the vagina or rectum
• You cannot pee or poop, or your belly is swollen and hard

See your doctor soon if:

• Pain comes back weeks, months or years after your hysterectomy
• You have new pain when you poop or pee, or pain during sex
• You take HRT and your pelvic pain returns
• Your pain stops you from working, sleeping or doing everyday things

You do not have to accept pain after a hysterectomy as normal. If your doctor does not take your symptoms seriously, ask for a referral to an endometriosis specialist.

Frequently asked questions

Can endometriosis come back after a hysterectomy?

Yes. Endometriosis grows outside the uterus, so a hysterectomy does not always cure it. The chance is lower when the ovaries and all visible endometriosis are removed.

Can endometriosis come back if my ovaries were removed?

It can, but it is less common. In one study, 10% of women had pain again after both ovaries were removed, against 62% when some ovary was kept.

Does HRT make endometriosis come back?

It can wake up endometriosis that is still there, but in one study this happened in 3.5% of women on HRT. Combined HRT is preferred over oestrogen-only HRT for people with a history of endometriosis.

What does endometriosis pain feel like after a hysterectomy?

Most often it is pelvic pain or pain during sex. Some people have low back pain, pain in the rectum, or pain when they poop.

Does a hysterectomy cure adenomyosis?

Yes. Adenomyosis is in the wall of the uterus, so removing the uterus can cure it.

This article is for general information. It is not medical advice and does not replace advice from your own doctor. If you think you have an emergency, call 911 or your local emergency number.