What Is Endometriosis?

Endometriosis is a condition that occurs when tissue that is similar to the lining of the uterus (known as the endometrium) grows outside the uterus. The tissue that grows outside of the uterus (known as lesions) typically appears on or near your reproductive organs, but can grow anywhere, including your bladder and colon.

Globally, endometriosis affects about 10% of people assigned female at birth. People with the condition experience severe pelvic pain, especially during periods. But because many people expect to have pain during their periods, endometriosis is often underdiagnosed. In fact, most people wait nearly 10 years before receiving a proper diagnosis.

Currently, the only way to confirm that you have endometriosis is through a laparoscopy which is a minimally-invasive surgery that allows a surgeon to examine your pelvic region to look for lesions and take samples of your tissue to send to a lab for proper testing. If your provider does find lesions, they will likely remove what they can during surgery and recommend further treatments such as birth control, pain relievers, and hormone-based therapies.

Types of Endometriosis

Your healthcare provider can identify the type of endometriosis you have based on which organs the lesions are growing. The primary types of endometriosis include:

• Peritoneal endometriosis: Peritoneal endometriosis (or, a type of endometriosis that affects the lining of your abdominal cavity) affects 15% to 50% of people with the condition. With peritoneal endometriosis, superficial (shallow) lesions grow in your pelvic area and abdominal cavity.
• Ovarian endometriomas: Ovarian endometriomas can happen when lesions grow inside the ovaries. In the ovaries, the lesions can develop into cysts filled with thick, dark blood—sometimes called chocolate cysts. As many as 50% of people with infertility have an ovarian endometrioma.
• Deep-infiltrating endometriosis (DIE): Deep-infiltrating endometriosis is the most severe type of endometriosis, causing lesions to spread and grow deep into your pelvic region. About 20% of people with the condition have deep-infiltrating endometriosis.

Symptoms

People with endometriosis can experience a host of painful symptoms, including:

• Pelvic pain: Cramps during your period, pain during or after sex, trouble urinating, painful bowel movements, and sharp or stinging pain in your stomach, back, or legs
• Infertility: Difficulty getting pregnant after one year of trying to conceive
• Changes to your menstrual cycle: Shorter menstrual cycles, longer periods, heavy blood flow, and spotting between periods
• Gastrointestinal (stomach-related) symptoms: Nausea, vomiting, diarrhea, constipation, and bloating
• Fatigue: Severe exhaustion and lack of energy
  

Causes

Endometriosis happens when tissue similar to endometrium grows outside of the uterus. However, researchers don't exactly know why endometriosis occurs. But experts have come up with several theories that explain the possible cause of endometriosis, including:

• Retrograde menstruation: One of the oldest theories of endometriosis says that menstrual blood may flow backward through the fallopian tubes, causing the tissue to spread outside your uterus and cause lesions. However, this theory is no longer widely accepted because endometriosis has been found in cisgender men and young girls who have not begun menstruation.
• Coelomic metaplasia: Metaplasia occurs when one cell randomly changes into another type of cell. This theory suggests that cells outside of the uterus can change into endometrial cells and cause lesions to occur. 
• Lymphatic and vascular metastasis: Capillaries (or, vessels that transport blood and oxygen to your organs) may spread endometrial cells to distant organs. Similarly, your lymphatic fluid can also carry endometrial cells to your lymph nodes.
• Stem cells: After your period, stem cells in the uterus replace the lost endometrial tissue. Those stem cells may sometimes leave the uterus and form lesions.
• Embryogenesis: Before you're born, embryonic stem cells help develop your reproductive organs. Leftover stem cells that your reproductive organs don't use can turn into endometrial-like cells and grow outside of the uterus, causing lesions to form.
• Surgery: In some cases, surgeries like Cesarean (C-section) or hysterectomy can result in endometriosis if endometrial tissue moves outside the uterus.

Risk Factors

Anyone with female reproductive organs can develop endometriosis. However, some factors that can increase your risk of endometriosis include:

• Getting your period before the age of 11
• Having an immediate family member with endometriosis
• Never being pregnant, as people who have not been through pregnancy have higher estrogen levels which can increase the risk of developing the condition
• Living with higher estrogen levels

Diagnosis

If you're experiencing symptoms of endometriosis or have noticed changes to your menstrual cycle, it's good practice to see a healthcare provider to discuss your symptoms and get tested. During your diagnostic process, your provider may use several measures to learn more about your condition and provide you with a diagnosis. These tests may include:

• Learning about your medical history and asking about current symptoms
• Performing a pelvic exam to examine your vagina and cervix
  
• Doing a surgical procedure called a laparoscopy to confirm an endometriosis diagnosis, remove lesions, and take samples of your tissue to send in for a biopsy
• Ordering blood tests to check hormone levels, if necessary
• Gathering photos from imaging tests–such as an ultrasound or MRI—to detect the presence, size, and location of any lesions

However, it's worth noting that lesions may not always show up on imaging scans. That said, your provider may use other types of tests to learn more about your condition.

Stages of Endometriosis

If a healthcare provider confirms endometriosis, they can also stage the condition. The stage of endometriosis you are in can tell you about the extent of your lesions. The American Society of Reproductive Medicine (ASRM) developed the following staging system for classifying the effects that endometriosis can have on your fertility.

• Stage I: Minimal endometriosis which causes small lesions and swelling in the pelvic region
• Stage II: Mild endometriosis, which results in minor damage and scarring to your reproductive organs
• Stage III: Moderate endometriosis, which shows widespread lesions outside of the uterus
• Stage IV: Severe endometriosis, which occurs when lesions have spread to several nearby or distant organs and have caused damage to the ovaries and fallopian tubes

It's important to note that this staging system doesn't factor in endometriosis that is found outside of the pelvic area and doesn't consider your pain levels or quality of life. More research is needed to better understand these factors.

Treating Endometriosis

The goal of treatment for endometriosis is to reduce painful symptoms. If you are trying to get pregnant, your treatment plan may also include interventions to improve fertility. Your specific treatment plan will depend on your symptoms and the severity of your condition, and your provider may recommend one or more of the following treatment options:

• Medications: You may receive prescriptions for birth control pills to regulate your periods, progesterone and progestin pills to reduce menstrual bleeding, non-steroidal anti-inflammatory drugs (NSAIDs) to relieve pain and gonadotropin-releasing hormone (GnRH) medications to help lower estrogen levels
• Assisted reproductive technology (ART): Uses in vitro fertilization (IVF) to improve your chances of getting pregnant. Keep in mind: IVF and other ART therapies do not treat endometriosis symptoms. The goal is to achieve pregnancy.
• Surgery: A provider may recommend a laparoscopy if medications do not help reduce symptoms. This type of surgical procedure helps remove lesions and other damaged tissue or organs.
• Complementary and alternative medicine: While research on alternative therapies is ongoing, some providers may recommend acupuncture, massages, and physical therapy to reduce pain.
  

Prevention

There is no surefire way to prevent endometriosis. However, you may consider incorporating lifestyle changes that can prevent flares of painful symptoms. Some lifestyle changes that can help you manage your symptoms include:

• Diet: An anti-inflammatory diet cuts out foods like gluten to reduce inflammation in the body. Some evidence suggests that decreasing inflammation may alleviate endometriosis symptoms.
• Exercise: One study in Reproductive Biology and Endocrinology found that regular physical activity can reduce pelvic pain and cramping.
• Sleep: Getting a good night’s rest can alleviate painful symptoms and reduce your risk of depression.

Comorbid Conditions

People with endometriosis may have a higher risk of developing certain health conditions that co-occur with endometriosis (known as comorbid conditions). These may include:

• Irritable bowel syndrome (IBS): Research has found that people with endometriosis are three times more likely to have IBS than others.
• Ovarian cancer: Some evidence suggests that the rate of ovarian cancer is 1.8% in people with endometriosis, compared to 1.3% in others. Research has found that lesions cause oxidative stress, which causes cell damage that increases ovarian cancer risk.
• Anxiety and depression: Pain caused by endometriosis can negatively affect your mental health and put you at risk for anxiety and depression.

Living With Endometriosis

Endometriosis can significantly affect your quality of life—which is why it's important to reach out to your healthcare provider when you start noticing symptoms. Pain, cramping, changes to your menstrual cycle, and fatigue can interfere with your ability to carry out daily tasks and worsen your mental health. Therefore, it's vital to take care of both your physical and emotional well-being if you receive a diagnosis for endometriosis.

Your healthcare provider is best fit to guide you about treatments and lifestyle changes you can make to improve symptoms and your overall quality of life. But, they may likely suggest:

• Following your treatment plan and taking medications as prescribed
• Speaking with a mental health professional and engaging in psychotherapy
• Joining in-person or virtual support groups to learn about resources and receive emotional support from others with your condition
• Keeping in touch with your healthcare provider(s) if you experience new symptoms or have interest in trying other treatment options

Living with endometriosis isn't easy. Many people experience a lower quality of life while living with this condition. While following the above treatments and remedies can help relieve some of your symptoms, it's worth noting that researchers also need to further investigate endometriosis to develop more accurate diagnostic exams and offer improved treatment options.