What You Need To Know About Endometriosis

What is endometriosis?

Endometriosis is a common and often painful medical condition affecting an estimated 1 in 10 women. This condition happens when tissue similar to the uterus lining begins to grow in areas of the body outside of the uterus. This tissue is called the endometrium. The endometrial-like tissue often grows within the pelvic region on the ovaries, cervix, bowel, or bladder.

In rarer cases, the tissue can travel to and grow outside of the pelvic region, on organs like the lung or brain.

During the menstrual cycle, the endometrial tissue growing outside of the uterus reacts to hormonal changes the same way the lining inside the uterus does. It thickens, bleeds, and breaks down inside of the body. The inflammation this process causes can lead to lesions, deeper scarring, and adhesions between tissues, which may become very painful, especially during the menstrual cycle.

The symptoms of endometriosis can range from mild to debilitating. For those struggling with the symptoms of endometriosis, there are treatment options and support available.

Symptoms

The most common symptom of endometriosis is pelvic pain. While cramping during the menstrual cycle is common, pain related to endometriosis can be much more severe and may worsen as the condition continues. Endometriosis-related pain often starts before the period begins and can last for several days into the period. Some women experience pain between periods, too.

Severe pain during the menstrual cycle is often one of the first signs of endometriosis and what prompts many people to seek medical help for the condition. However, some women may have severe pain with minimal endometriosis-related scarring or lesions. Others may have mild pain despite the endometriosis being quite advanced. As a result, pain levels aren’t a good indicator of how much endometrial-like tissue is growing within the pelvis.

Other common symptoms of endometriosis include:

  • Pain during sex

  • Pain with bowel movements or urination

  • Heavy periods

  • Bleeding between periods

  • Digestive issues such as constipation, diarrhea, or nausea, especially during your period

Chronic pain from endometriosis can also contribute to depression and anxiety. Some women experience debilitating pain from endometriosis, and it may become so severe that it impacts their quality of life and ability to function at work or perform everyday tasks. 

Endometriosis and infertility

Some women may not realize they have endometriosis until they seek medical help for infertility. Between 30 to 50% of women with endometriosis will also have fertility issues.¹ The link between endometriosis and infertility isn't fully understood. It may be due to its effects on areas of the reproductive system, such as the fallopian tubes and ovaries.

Endometriosis may also cause changes to the uterus that make it unsuitable for the implantation of an embryo. These effects can be structural, biochemical, or both.

In some cases, surgery to remove the lesions and scar tissue caused by mild-moderate endometriosis may help improve the chances of conception. In more severe cases, IVF or alternative conception methods may be helpful.

  1. Endometriosis and infertility (2010)

Other Sources:

Causes

Any person with a uterus of reproductive age (from the start of menstruation through menopause) can have endometriosis. However, no one knows what causes some people to develop the condition while others do not.  Experts currently hold a number of theories, including:

Retrograde menstruation

When you menstruate, the endometrial lining of the uterus thickens, sheds, and causes bleeding. The discarded endometrial tissue then passes through your cervix and out through your vagina. With retrograde menstruation, some of the tissue goes through the fallopian tubes and out into the pelvic cavity instead. From there, it settles on the lining tissue of the abdominal cavity (called the peritoneum) and causes endometriosis.

Vascular distribution

Another theory suggests that endometrial cells may travel through the body in the bloodstream. Once they are transported to a different area of the body, they develop into endometrial-like tissue at that site. This theory can help explain why endometrial cells are sometimes found in areas of the body that are distant and otherwise disconnected from the pelvic region, such as the eyes or the brain.

Cell transformation

Endometrial cells are one of a multitude of cell types in your body. Some researchers theorize that endometriosis is caused when other cells, such as embryonic or peritoneal cells, transform into endometrial cells. Hormonal shifts would most likely cause these cellular changes.

Genetic causes

Researchers have yet to identify a specific gene that causes endometriosis, but there does seem to be a genetic link. People with endometriosis are more likely to have mothers or sisters with the condition.

Immune disorders

Another theory suggests that endometriosis is actually a disorder of the immune system. Instead of the immune system destroying stray endometrial cells in the body, it allows them to grow and spread.

Estrogen dominance

Some researchers believe an excess of the estrogen-like hormone called estradiol may contribute to the development of endometriosis. 

In reality, it may be a combination of these theories, along with environmental factors, that causes the development of endometriosis. More research is needed to determine a definitive answer.

What are the risk factors for developing endometriosis?

While doctors don't know for sure what causes endometriosis, some factors may make you more likely to develop it. These include:

Menstruation history

You may be at risk if you have longer periods with a shorter cycle (usually less than 27 days between the first days of your periods).

Family

If a family member has endometriosis, a person is 4-7 times more likely to develop the condition.¹

Pregnancy

Women who have never been pregnant are at increased risk of developing endometriosis. This may be related to the higher number of periods they have compared to those who have less due to pauses with pregnancies.

Medical history

Some medical conditions, such as pelvic inflammatory disease or cervical stenosis,  may interfere with the flow of menstruation, so it could increase your risk of developing endometriosis. 

If you are experiencing the symptoms of endometriosis and think you may be at risk for this condition, contact your doctor. They can help you determine a diagnosis and/or suggest treatment options to alleviate your symptoms.

What is the link between endometriosis and estrogen levels?

The growth of your uterine lining, or endometrium, is influenced by a type of estrogen called estradiol. Having too much estrogen compared to the other hormones in your body that balance its effects can worsen endometriosis. It may also spur the growth of endometrial-like tissue outside of the uterus.

Many things can affect your hormone levels, including diet, weight, lifestyle, and other health conditions. For people with endometriosis, an increased estradiol level can trigger endometriosis symptoms such as pelvic pain, cramping, and inflammation. Other times, there may be no clear explanation why some people produce more estrogen than others. It may be due to a combination of genetic and environmental factors.

This link between estradiol and endometriosis is also why one of the primary treatments for the condition is hormone therapy. Birth control pills, contraceptive injections, or implants can help by reducing the amount of estrogen in your body.

The use of progestins (in the form of the pill, mini-pill, contraceptive injection, or birth control implants in your arm or uterus) can help counteract the effects of excess estrogen. By doing this, you may improve your symptoms. This is also why the symptoms of endometriosis often resolve when a woman reaches menopause, as estrogen levels drop around the time that periods stop.  

How is endometriosis diagnosed?

Endometriosis can be difficult to diagnose. One study found that the median time from the onset of symptoms to the point of diagnosis was seven years.² There are several potential reasons for this. First, there is no simple test to diagnose endometriosis. Secondly, the symptoms of endometriosis are similar to several other health conditions, including pelvic inflammatory disease, ovarian cysts, and irritable bowel syndrome. Third, your doctor may need to determine if other underlying health concerns contribute to your symptoms.

To check for evidence of endometriosis and assess you for other potential health conditions, your doctor may recommend:

Pelvic exam

A pelvic exam allows your doctor to feel for cysts or evidence of scar tissue that could indicate endometriosis.

Imaging scans

This includes an ultrasound or an MRI. Imaging can indicate areas of nodular scarring due to inflammation in your body, as well as any cysts that may have developed due to endometrial tissue growth. They may also detect other gynecological conditions which can behave similarly to endometriosis.

Blood tests

A doctor may order blood tests to rule out any other medical conditions contributing to your symptoms.

Endometriosis can only be confirmed through surgery by identifying visual evidence of the disease and/or sending tissue specimens for laboratory confirmation. This procedure is typically done as a laparoscopy (keyhole surgery).

During a laparoscopy, your surgeon will insert a telescopic camera through a small incision in your abdomen. This will allow them to see if there are any endometrial lesions, scarring, or cysts and determine the extent of your endometriosis. They can then use this information to develop a treatment plan.

Your surgeon may also take a biopsy (tissue sample) of a suspected endometrial lesion for testing. With prior permission, they may also attempt to remove some of the endometrial tissue growth to ease your symptoms or improve your fertility.

Treatments

There is currently no cure for endometriosis, but some treatments can help manage its symptoms and complications. Everyone responds to treatments differently, so it's important to work closely with your healthcare provider to create a treatment plan that works for you. Your doctor will want to know:

  • How severe your pain is

  • What other symptoms you are experiencing

  • How you are currently managing those symptoms

  • Whether you want to have children in the future

With that information, they can formulate a treatment plan that best addresses your situation. In most cases, your doctor will start with more conservative treatment where possible. If that doesn't provide sufficient relief, they'll discuss more invasive treatment options. Your treatment options might include: 

Pain medications

Several medications can help with pain related to endometriosis. Your doctor may recommend over-the-counter pain relief medications, such as ibuprofen or naproxen, to begin with, depending on your personal history. They may also prescribe a prescription pain reliever if you need additional relief.

Additionally, some people require prescription medications to target nerve pain as well. All of these types of analgesia may be combined with hormonal contraceptives, as long as you aren't currently trying to get pregnant. 

Hormone treatments

As discussed earlier, estrogen is known to make the symptoms of endometriosis worse. Therefore, hormonal therapy can help reduce or balance estrogen levels and provide relief. There are many hormone treatment options available. You and your doctor should work together to determine which one is the best solution for you based on your medical history, lifestyle, and endometriosis symptoms. The hormonal treatments known to be beneficial for endometriosis include:

Combined hormonal contraceptives

This type of medication includes both estrogens and progestins (see below) and includes birth control pills and vaginal rings. A hormonal contraceptive can help make periods shorter and lighter while potentially easing the pain associated with endometriosis.

Progestin therapies

Progestins are synthetic versions of our natural progesterone hormone. They usually make your periods shorter and lighter, and may safely stop them altogether. Progestins have a suppressive effect on endometrial tissue, so they can slow or even stop the growth of endometriosis and relieve many of the symptoms you might experience. Progestins are delivered through intrauterine devices, injections, implants, or pills.

Gonadotropin-releasing hormone (GnRH) agonists and antagonists

These medications block the signals sent to your ovaries which tell them to produce estrogen and progesterone. When the production of these hormones drops, your period is suppressed. While a lack of estrogen can help shrink endometrial tissue, it also frequently causes menopausal symptoms like hot flashes and a reduced sex drive. Your doctor may prescribe a small amount of estrogen to counteract these symptoms if they have a big impact. 

It's important to remember that hormone therapies are not cures for endometriosis. While they can relieve your symptoms, your symptoms are likely to return if you choose to stop hormone therapy. 

Surgical options

If pain medications and hormone treatments aren't enough to address your endometriosis symptoms, your doctor may recommend a surgical option. Most often, they will recommend a laparoscopy. This is where a surgeon makes a small incision in your abdomen and inserts a telescopic camera that allows them to see endometriosis lesions, scarring, cysts, and other consequences of the condition.

Laparoscopy is the definitive way to confirm an endometriosis diagnosis, and your doctor will often take a tissue sample to send to the laboratory for confirmation. A surgeon can also use this opportunity to remove any endometriosis lesions or scar tissue they find at the time of surgery. This can help relieve your symptoms and improve how effective other treatments are for your symptoms. If you are trying to have a baby, it may also improve your chances of conception. 

Hysterectomy

A hysterectomy is the removal of your uterus and cervix and may also include the removal of your ovaries and fallopian tubes as well. It is considered a last resort treatment for endometriosis and requires major surgery. After a hysterectomy, you'll no longer be able to have children and, if your ovaries are also removed, you will immediately go into menopause.

Early menopause can cause serious side effects, including increasing your risk of heart disease and osteoporosis. There is also no guarantee that the surgery will eliminate the pain you experience, as there are a number of factors that contribute to the pain associated with endometriosis. However, it will likely help with other symptoms such as heavy menstrual bleeding.

A critical step to your success is finding a doctor that you trust and can work with to determine an endometriosis treatment plan that works for you. While there is no cure, there are options that can make living with the condition tolerable and improve your quality of life. 

What can be done at home to manage endometriosis?

While it's important to talk to your doctor if you are experiencing symptoms of endometriosis, there are things you can do at home to help manage the condition. These include:

Joining a support group

Endometriosis symptoms can increase your risk of depression and anxiety, especially for anyone who experiences chronic pain associated with the condition. A support group can provide a network of people to help you understand what you are going through.

Get plenty of rest

Pain, heavy bleeding, and other symptoms of endometriosis can be draining. Try to get plenty of rest, especially during your period.

Use a hot water bottle or heating pad to relieve pain

Apply the heat to your abdomen or lower back. This can help your muscles relax and reduce inflammation in the body. Many women find relief when combining heat with pain medication.

Change your diet

Diets rich in fruits, vegetables, and fatty fish can help balance your hormones and reduce excess estrogen that may be making your endometriosis symptoms worse. Speak to a dietitian about the best way to make these changes.

Cut back on alcohol

Alcohol can raise your estrogen levels, and that can make your endometriosis symptoms worse.

Prevention

There is no way to prevent endometriosis. However, there are ways you can help lower your risk of developing it and slow its progression. This primarily involves regulating the amount of estrogen in your body, which you can do by:

  • Talking to your doctor about hormonal contraceptive options, which can help regulate hormone levels

  • Avoiding alcohol, which can raise estrogen levels when consumed regularly

  • Getting plenty of exercises, which can help your body break down excess estrogen

If you have a family history of endometriosis or suspect you are experiencing its symptoms, make an appointment with your doctor. While there is no absolute way of preventing it, your doctor can help you create a treatment plan to start managing the symptoms early. This may prevent them from getting worse in the future.

Your doctor can also talk to you about your wishes regarding family planning and give you advice around endometriosis and conception.

Awareness

There is growing awareness about endometriosis and its impact on a person's life. Some of the organizations helping to spread awareness and raise money for research include:

Endometriosis Association

With headquarters in Milwaukee, this organization has members around the world and helped to found Endometriosis Awareness Month. Their mission is to help find a cure and prevention methods for endometriosis while supporting those who currently have it. They have an endometriosis outreach program that teaches people to self-advocate for help from healthcare professionals for their endometriosis symptoms. The organization also offers support networks, a crisis call hotline, and a prescription savings program.

Endometriosis Foundation of America

This non-profit organization focuses on increasing endometriosis awareness, encouraging early diagnosis, and funding research. Their Endo Education Program brings endometriosis awareness to schools and communities around the world. The group also offers a variety of fundraising opportunities during Endometriosis Awareness Month each March.

Endometriosis Research Center (ERC)

ERC is a non-profit organization founded in 1997 to help raise funds for research and advocate for legislative efforts. They focus on providing information to counteract myths surrounding endometriosis, including that severe period pain is normal. All donations are applied to ERC's programs, including conducting studies and research on a global scale.

You can find information on getting involved with these organizations on their websites. Every March, there are many endometriosis-focused events during Endometriosis Awareness Month, including fundraising, campaigning, and offering support to those newly diagnosed with the condition.

Doctors & specialists

If you are struggling with heavy bleeding, intense pain around your period, or any other symptoms of endometriosis, make an appointment with your healthcare provider. It's important to get help for this medical condition, as symptoms can worsen over time if left untreated.

Doctors who diagnose and treat endometriosis include:

Primary care physicians

A general practitioner can diagnose and treat endometriosis. If initial treatments don't work, they may refer you to a specialist for additional care and treatment options.

Obstetrician-gynecologists (OB-GYN)

Many people seek a diagnosis from their OB-GYN. They may mention their symptoms during their annual physical examinations, which can lead to a diagnosis. Your OB-GYN can recommend treatment options, and many specialize in the treatment of endometriosis, including surgical options.

Reproductive endocrinologists

If endometriosis is affecting your fertility, a reproductive endocrinologist may be able to help. They specialize in working with hormones and can offer treatments that may help increase fertility and the chance of conception.

Gastroenterologists

Many people with endometriosis suffer from related digestive issues, including bloating, diarrhea, and constipation. A gastroenterologist specializes in treating digestive issues and can recommend treatments to help manage those symptoms.

Pain management specialists

Some people with endometriosis suffer debilitating pain that impacts their ability to perform at work or handle everyday tasks at home. A pain management specialist can help create a treatment plan to reduce pain levels and improve quality of life.



Clinical trials for endometriosis

Actively recruiting
Study Of Oral Elagolix Tablets In Combination With Combined Oral Contraceptive Capsules/Tablets To Assess Dysmenorrhea Response In Adult Female Participants With Endometriosis And Associated Moderate To Severe Pain
AL, AR, AZ, CA and 30 more locations (US)
Actively recruiting
Study to Gather Information How Well Three Different Doses of BAY1817080 Given Twice Daily Over 12 Weeks Work in Comparison to an Inactive Pill (Placebo) and Elagolix in Women Suffering From Pain Related to a Condition Where the Tissue That Usually Grows Inside the Womb Grows Outside of the Womb
AL, AZ, CA, CO and 19 more locations (US)
Actively recruiting
Cabergoline for the Treatment of Chronic Pain Due to Endometriosis
MA (US)