Is It Possible to Have Endometriosis After a Hysterectomy?

Surgical removal of the uterus may not be a “cure”

Endometriosis is a disease in which tissue that resembles the endometrium (the tissue that lines the uterus) grows outside the uterus. There is no cure for endometriosis, and difficult-to-treat cases may lead someone with endometriosis to consider a hysterectomy. A hysterectomy is surgery to remove the uterus, which may eliminate the underlying cause of endometriosis. However, endometriosis may persist even after a hysterectomy.

Depending on the type of surgery, recurrence of endometriosis may be more common than getting rid of endometriosis completely. Thus, endometriosis can be a chronic condition.

This article discusses hysterectomy to treat endometriosis, when to see an endometriosis specialist, other treatment options, and support for ongoing advocacy and help.

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Hysterectomy: A Last Resort for Endometriosis 

Deciding whether to get a hysterectomy to eliminate the symptoms of endometriosis is a big decision. While a hysterectomy involves total or partial removal of the uterus, unfortunately, it doesn’t always result in relief from endometriosis. Continuing to experience endometriosis symptoms after a hysterectomy is a real possibility and therefore it should be considered a risk of getting a hysterectomy.

Going over the pros and cons of a hysterectomy to treat your endometriosis can help you see if the risks outweigh the benefits. For example, multiple surgeries may be needed if endometriosis pain persists after the first surgery, and even then, the pain could come back. 

An analysis of studies looking at endometriosis after hysterectomy showed that the risk of recurrent endometriosis is not uncommon, with as many as 15% to 30% of women still reporting endometriosis symptoms after a standard hysterectomy.

Partial or total oophorectomy (removal of the ovaries) also plays a role in how likely it is that endometriosis symptoms will persist. In other words, not only is persistent endometriosis pain a risk after hysterectomy but also presents a risk for multiple surgeries that still may not get it all. 

A hysterectomy can’t be taken back, and it may not be the answer to your endometriosis pain. If your healthcare provider has suggested a hysterectomy to treat your endometriosis, it’s a good idea to get a second opinion.

Reasons for Recurrence After Hysterectomy

A hysterectomy doesn’t always lead to endometriosis relief.

Incomplete removal of endometriosis is the most common reason for recurring endometriosis. In other words, if parts of the lesions causing endometriosis remain after surgery, endometriosis may come back. The type of hysterectomy surgery also affects endometriosis symptoms in that the type determines how much of the uterus is removed.   

Locations of Lesions

Lesions generally occur in and around the uterus. The most common sites of endometriosis are:

  • Ovaries
  • Fallopian tubes
  • Anterior cul-de-sac (between the bladder and the uterus)
  • Posterior cul-de-sac (between the uterus and the rectum)
  • Ligaments that hold the uterus in place (uterosacral ligaments)
  • Pelvic cavity lining
  • Outer surface of the uterus

Missed or Overlooked Lesions in Surgery

Persistent symptoms of endometriosis are likely caused by lesions that are left behind after surgery. Some lesions may be missed during a hysterectomy because they may not look like a typical lesion, are not colored like a lesion, or are too deep to be detected with a laparoscope (a thin telescopic tube with a light inserted into small incisions made in the abdomen) or reached during surgery. 

In addition, the lesions may be located in places not typically looked at in a hysterectomy. For example, a lesion in the intestinal tract could be left behind after a hysterectomy or oophorectomy.  

Signs of Recurring Endometriosis Post-Hysterectomy

Recurring endometriosis can be difficult to diagnose from a healthcare provider’s perspective, but there are signs and symptoms you would see or feel. The most common symptoms of recurring endometriosis are pelvic pain and pain from sex.

Other symptoms that may arise after a hysterectomy are symptoms you will probably easily recognize as they mirror symptoms of endometriosis before it is treated, including:

  • Intensely painful period cramps
  • Heavy bleeding during your period

Rectal pain and bleeding may also occur.

The tough part about diagnosing recurring endometriosis is that it is hard to identify the exact cause of the persistent pain since there could be multiple factors at play. For example, lasting pain could be caused by postsurgical scar tissue. 

However, as noted above, there may also could be lesions that are missed. Thus, it is important to advocate for yourself when you know that something still isn’t right. In addition to noting your symptoms, your healthcare provider may do a laparoscopy, a procedure to check the pelvic organs, to see if there are any more lesions that could be causing persistent pain. 

Should You See an Endometriosis Specialist?

Finding relief from endometriosis can be difficult and disheartening. Finding a healthcare provider who will help you navigate the ups and downs of treatment can also be trying. If you have endometriosis and have tried many options, including getting a hysterectomy, then it may be time to find an endometriosis specialist.

Endometriosis specialists are more than familiar with the disease. They know that finding relief isn’t easy and they understand that you must treat the underlying cause to feel better. Using imaging tools like ultrasound, they will see how the ovaries and uterus are looking to help them determine a plan for getting rid of your pain.

An endometriosis specialist will understand that some lesions are missed during a hysterectomy and will therefore have that in mind if, together, you decide another surgery is in order.

With a difficult-to-treat condition, you want someone who knows the ins and outs of that condition to help you navigate treatment. An endometriosis specialist intimately understands the risks and benefits of hysterectomy to treat endometriosis and can better help you find alternative treatments.

Treatment Options After Hysterectomy

A hysterectomy isn’t a be-all and end-all treatment for endometriosis. If a hysterectomy fails to get rid of endometriosis pain, there are other treatment options still available. Other treatments may include:

  • Hormone therapy
  • Birth control
  • Pain medications
  • Another surgery, if lesions were missed

This is where endometriosis specialists come in handy. They can help you weigh the options and determine the next step forward. An endometriosis specialist will also be more invested in the shared decision-making process of endometriosis treatment.

Summary

While a hysterectomy is an accepted treatment for endometriosis, there is no guarantee that it will get rid of endometriosis symptoms. Sometimes lesions are missed during surgery, which means the underlying cause of endometriosis is still there and causing pain. An endometriosis specialist can help determine next steps for people with recurrent endometriosis, including less invasive treatment options and more tailored support.

A Word From Verywell

Unsuccessful surgeries are not the end of the road to finding relief. An endometriosis specialist can help you navigate the ups and downs of finding relief from endometriosis symptoms. If you are living with endometriosis after hysterectomy, know that you are far from alone and there is support to help you find a path toward treatment and days without endometriosis.

Frequently Asked Questions

  • How likely is recurrence after a hysterectomy for endometriosis?

    The likelihood of recurrent endometriosis after a hysterectomy depends on several factors, such as whether lesions were overlooked during surgery or were too deep to be seen. Studies show that endometriosis comes back in 15% to 30% of patients who undergo surgery.

    Research also shows that it depends on whether the ovaries were removed in addition to the uterus. The likelihood of endometriosis persisting after hysterectomy can be as high as 62%, if the ovaries were untouched.

  • Can you feel endometriosis pain without a uterus?

    Yes. Endometriosis is a disease in which tissue that is similar to the lining of the uterus (the endometrium) grows in other places in the body. Lesions that cause endometriosis can be located in places outside the uterus, such as on the ovaries, fallopian tubes, or the bowels.

    So, even if you don’t have a uterus, lesions that were missed or overlooked may still cause endometriosis symptoms.

  • What triggers endometriosis?

    The exact cause of endometriosis is unknown. However, there are some risk factors that are shown to play a role, including:

    • Age, usually 15 to 49
    • Genetics
    • Irregular periods
    • Uterine abnormalities, such as polyps or fibroids
  • What is endo belly?

    “Endo belly” is a term used to describe the distension or bloating caused by endometriosis. It is more persistent than the temporary bloating you may experience during your period. The lower belly may be swollen for days or weeks, causing ongoing pain or discomfort.

    The reason the belly gets distended is because, just like the lining of the uterus, the endometrial-like tissue builds up. But unlike the built-up uterine tissue that gets shed every month, endometrial-like tissue doesn’t have a way to escape, which can lead to inflammation, swelling, and distension.

  • How can I afford endometriosis treatment?

    Insurance may be an option to help decrease the costs of more expensive treatments like surgery. Early and explicit communication from your insurance company on what they will cover is key. On the other hand, treatments like birth control may be low-to-no cost. It is best to speak to your healthcare provider or endometriosis specialist to get connected with ways to help you afford endometriosis treatment.

3 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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  2. Johns Hopkins Medicine. Endometriosis.

  3. MedlinePlus. Endometriosis.