Endometriosis Complications: Surgery, Fertility, and More

Endometriosis is a chronic, lifelong condition that causes tissue similar to the lining of the uterus (called the endometrium) to grow outside the uterus. This can cause many complications and long-term effects. If you’ve been diagnosed with this condition, it’s normal to wonder about endometriosis and fertility, as well as complications like cysts and adhesions. 

This article will provide an overview of endometriosis complications. It will cover what short and long-term effects of endometriosis you might encounter and how to cope with this incurable condition. 

Possible Complications From Endometriosis

Endometriosis is a complex condition that healthcare providers are just starting to understand and treat adequately. There is still much the medical community is trying to understand about the disease.

Endometriosis can be mild or severe. Although there are many complications from endometriosis, not everyone experiences all of them or in the same. Still, it’s important to be aware of the complications that may arise, including the following. 

Chronic Pain

Pain is one of the most common complications of endometriosis. In fact, 75% of people with endometriosis report experiencing pain. Many people with endometriosis experience painful menstrual periods and pain during or after sexual intercourse. The pain in some people with endometriosis is chronic (long-term), especially pain in their pelvis. 

The pain is linked to swelling and inflammation. The endometrial tissue often bleeds monthly, just as the endometrial tissue in your uterus does. However, since this blood can’t flow from your body, it causes pain and swelling. In addition, some of the complications listed below, including adhesions, can also cause pain. 

Adhesions

Adhesions are when two or more organs are joined together with scar tissue. This happens when endometrial tissue causes bleeding in the pelvis. The bleeding leads to inflammation in the surrounding tissue and eventually the formation of scar tissue.

These adhesions can cause a pulling feeling or sharp, stabbing or burning pain. In addition, adhesions can distort your normal anatomy, which can also cause pain or even infertility.

Cysts

Ovarian cysts are very common, and not always a sign of endometriosis. However, certain ovarian cysts are linked to endometriosis. When endometrial tissue grows in your ovaries, it can form cysts called endometriomas, which can become large and cause pain and/or infertility.

Adenomyosis 

Often, endometriosis symptoms occur because endometrial tissue is growing outside the uterus. Adenomyosis occurs when the endometrial tissue grows into the muscular wall of the uterus, which can cause painful, heavy periods. Adenomyosis and endometriosis are considered different conditions , but they are related. Some people with adenomyosis have no symptoms, but others have painful periods or heavy menstrual bleeding. 

Mental Health 

Living with the pain and discomfort of endometriosis can take a toll on your mental health. For example, endometriosis, depression, and anxiety are closely linked. More than two-thirds of people with endometriosis report having psychological distress. Managing the symptoms of endometriosis may help with your mental health, but it’s also important to seek specific mental health treatment. 

Side Effects From Treatment

Many of the treatments for endometriosis carry their own side effects. It's important to discuss these openly with your healthcare provider so you can treat your symptoms without adding in the impact of side effects.

For example, Orilissa (elagolix) is a prescription medication approved to treat endometriosis. It’s a gonadotropin-releasing hormone (GnRH) receptor antagonist that works by blocking GnRH receptors in the pituitary gland of the brain. This can reduce symptoms but also leads to side effects such as hot flashes, night sweats, anxiety, and mood changes.

After Hysterectomy

A hysterectomy, which is the surgical removal of the uterus, is sometimes used to manage endometriosis. A hysterectomy can have a big impact on your overall health, so it's important to be informed about the risk and benefits of the procedure. Rarely, a hysterectomy can be associated with a risk of damage to nearby organs like your bladder.

Sometimes the ovaries are removed along with the uterus in a hysterectomy, which can cause menopausal symptoms like mood changes, hot flashes, and decreased sex drive. For some, a hysterectomy is an effective treatment for endometriosis, but because it's irreversible and can have other side effects and complications, it's important to talk to your healthcare provider about the pros and cons

Incomplete Excision or Ablation

At times, a surgeon is unable to remove the endometrial tissue entirely. This can called an incomplete excision or ablation. Since the tissue was not completely removed, you may continue to experience symptoms of endometriosis. You may also have complications, including bleeding, scar tissue, and even infertility.

Before surgery, talk to your healthcare provider about what to expect after the procedure and when to reach out for help.

Fertility

Fertility is a major concern for many people with endometriosis. Some people with endometriosis can become pregnant naturally and carry a pregnancy to term. However, many others with the condition have trouble getting pregnant: about 24%–50% of women with infertility have endometriosis. Here’s how endometriosis can impact your fertility. 

Getting Pregnant

Endometriosis can make it more difficult to get pregnant. In fact, about half of people with endometriosis have trouble conceiving. Endometrial tissue can block the reproductive organs, like your ovaries or fallopian tubes. It can also cause issues with egg quality, implantation, and general inflammation.

During and After Pregnancy 

Endometriosis often doesn’t cause unique complications during pregnancy or the postpartum period. However, some people with the condition have a higher risk of placenta previa (when the placenta partially or fully covers the opening of the uterus), preterm delivery (delivering before 37 weeks of pregnancy), and miscarriage (spontaneous loss of a pregnancy prior to 20 weeks) during pregnancy.

After your pregnancy, talk to your healthcare provider about treatments like hormonal birth control to help with symptoms of endometriosis, such as pain and bleeding.

Fertility and Endometriosis Treatment

If you plan to get pregnant in the future, you should speak with your healthcare provider about how your treatment can impact fertility. For example, hormone therapy, including hormonal birth control, is a common treatment for endometriosis. It can help control symptoms and flare-ups. However, birth control will likely also stop you from conceiving. GnRH receptor antagonists can also interrupt your menstrual cycle and make it difficult or impossible to conceive.

Surgeries for endometriosis can also impact your fertility. Some people, but not all, are more likely to get pregnant after having surgery to treat their symptoms. Other surgical options directly impact fertility: an oophorectomy (removal of the ovaries) will leave you entirely unable to conceive without assistance, while a hysterectomy will leave you unable to carry a pregnancy in the future. 

Advocating for Better Treatment 

While healthcare providers are more aware of endometriosis than in the past, they are still not quick to diagnose it. Unfortunately, up to 90% of people with the condition report feeling dismissed by healthcare professionals. If you believe you have endometriosis, it’s important to advocate for your treatment and the care you deserve. The Alliance for Endometriosis has resources to help you find support and advocate for care.

Support Groups

Support groups for people with endometriosis can be valuable. They give you the chance to talk to others with your condition, and share tips for advocating, getting treatment and coping. Facebook groups and online communities like that run by the Endometriosis Association can provide resources and camaraderie.

Endometriosis Specialists 

If you believe you have endometriosis, seek out a gynecologist who has experience treating the condition. Search locally or ask in your support networks to help you find an endometriosis specialist near you. 

Summary

Endometriosis is a chronic condition where the lining of the uterus grows outside the uterus. This causes endometriosis complications including pain, trouble conceiving, and mental health concerns. Treatments for endometriosis—including hormonal treatments and surgeries—have their own set of side effects that can impact fertility and mental health.