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Everything you’ve ever wanted to know about endometriosis

Endometriosis 101

Top things to know:

  • Endometriosis is a condition that affects 190 million people worldwide, yet is still not completely understood by medicine

  • Endometriosis is a complex condition that involves inflammation, hormones, and the immune system

  • The treatment for endometriosis aims to control symptoms and achieve pregnancy when desired

  • Management options include medications, surgery, and possibly lifestyle changes

What is endometriosis?

Endometriosis is when endometrial-like tissue grows where it isn’t meant to be (1,2,3). Typically, endometrial tissue is the inner uterine layer that grows and sheds, causing you to have your period (1,2,3). 

For people who have endometriosis, endometrial tissue can be found on and around organs in the pelvic cavity (1,4). The endometrial tissue outside of the uterus will also respond to hormonal changes during the cycle (4). Since the tissue has no way of leaving the body, it can cause adhesions, thick bands of scar tissue, nodules, lumps, and lesions, wounds, which trigger an inflammatory response (4). 

Endometriosis may affect about 1 in 10 women of reproductive age, though estimates vary widely and prevalence may differ across populations (2). Some studies show that there are fewer Black and Hispanic women, for example, who are diagnosed with endometriosis (5). Among people with complaints of pelvic pain, endometriosis prevalence can vary from 15–70% (6,7). 

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Getting an endometriosis diagnosis can be difficult due to several barriers, such as a provider's lack of diagnostic resources and knowledge (3). Endometriosis can also be asymptomatic, showing no symptoms, for some people and diagnosis may only occur during surgery (3). People may experience symptoms for many years and seek multiple medical opinions before receiving a diagnosis. Six out of ten people with endometriosis will see three or more providers before diagnosis and the average diagnosis time is seven years (3,8). This diagnosis time depends on where you are in the world; one study in Brazil showed an overall average time of seven years to diagnosis (9), while other studies in the UK and USA have found diagnostic delays of 8 and 12 years, respectively (10). 

If you think you could have endometriosis, tracking your pain, bleeding and other symptoms with Clue can show your healthcare provider information that may help with diagnosis and in forming a treatment plan. Early treatment can improve your quality of life and reduce the risk of complications (3).

What are the symptoms of endometriosis?

The symptoms of endometriosis can begin in early adolescence, or later in adulthood (2). The condition's severity is defined by where the endometrial tissue is and how deeply it is within your other organs, such as ovaries and ligaments. However, people with severe symptoms can have minimal amounts of endometrial tissue outside of the uterus, and people with minimal symptoms can have endometrial tissue extensively growing around other organs (1,4). 

Common symptoms of endometriosis include (1,4,11,6):

  • Premenstrual/menstrual cramps that are very painful

  • Dyspareunia (pain during or after sex)

  • Painful bowel movements and/or urination

  • Pain in the abdomen, lower back, or thighs often lasting throughout the cycle

  • Heavy periods

  • Rectal pain and rectal bleeding

  • Fatigue

  • Difficulty becoming pregnant (infertility) 

Endometriosis can begin around the same time as menarche, the first period. This can lead a person to think a high level of pain is “normal” for them, when it may be caused by endometriosis or another medical condition (2,12).

If you’re questioning the kind of pain you experience around your period, talk to your healthcare provider to see if endometriosis might be a factor.

What causes endometriosis?

Science still needs to fully understand why endometrial-like tissue grows in places where it should not (4). Endometriosis was originally thought to be caused by uterine tissue flowing back through the fallopian tubes into the pelvic cavity, a condition known as retrograde menstruation (4). However, not all people with retrograde menstruation develop endometriosis (1,4,6). 

Some studies show that endometriosis is more common in people with heavy periods, early menarche, and late menopause, and those who have had a higher number of periods due to never taking hormonal birth control or never being pregnant (4,6). This supports the theory that retrograde menstruation could be a contributing factor (13). 

Other studies have investigated genetic, inflammatory, and hormonal changes as potential causes or contributors to the development of endometriosis (6). 

Some people develop endometriosis before they reach menarche (12). Studies suggest that it may result from endometrial cells traveling through the circulatory system (6,14). Another theory is that cells from outside of the uterus may develop into endometrial cells, behaving similarly to stem cells, which are cells in our body that can become different cells (6,15). 

According to further research, the development of this condition may be influenced by excess estrogen (6). Genes and the immune system may also play a role in the development of endometriosis (16). This could mean that if someone in a person’s biological family has endometriosis, that person may be more likely to develop it (17). 

Some research has shown that endometriosis involves more than endometrial tissue on the wrong part of the body, people also tend to have higher overall inflammation in the body (13,18). It is not yet understood why these characteristics appear in people with endometriosis or the underlying causes.

How is endometriosis diagnosed?

Many people with endometriosis are treated based on their symptoms, without a formal diagnosis. However, symptoms vary from person to person. Some people are asymptomatic, and others experience a range of physical and mental symptoms, making it hard for providers to differentiate from other conditions (4). 

Healthcare providers may suggest different methods for diagnosing endometriosis. Diagnosis can be presumed using ovulation blockers, transvaginal ultrasounds (taking a picture through the vagina), or an MRI (4). When someone takes ovulation blockers and the symptoms improve, you can have a presumed diagnosis. In other cases, an official diagnosis is done via a laparoscopy (keyhole surgery, where a camera is inserted into the abdomen to look inside the pelvic cavity). Small tissue samples called biopsies are collected, which are tested to confirm the presence of endometrial tissue growing outside of the uterus (19). 

In any case, getting a diagnosis will likely begin with a provider asking you questions about your medical and menstrual history and performing a physical exam. They will want to hear about your pain symptoms and any issues with becoming pregnant or miscarriage (20).

While some discomfort around menstruation is considered “normal”, pain in endometriosis can be much worse, and it's important to communicate what feels true for you (2). You might also try talking to someone who specializes in gynecology or endometriosis. Being an advocate for yourself may help to reduce the amount of time it takes to get a diagnosis. 

Endometriosis is often underdiagnosed and overlooked by healthcare providers (2,3). If you are experiencing pain around your menstrual cycle and you feel like you are not being taken seriously, track your experiences in the Clue app so that you have a record of what you feel and when. 

How do you treat endometriosis?

Endometriosis symptoms can be managed with treatment. Treatment is important to prevent the progress of the condition. This means that treatment can prevent endometrial tissue from growing outside of the uterus (2,20). 

How endometriosis is treated will depend on the symptoms and goals of each person. Your goals might be to feel less pain, or to become pregnant. Many people’s symptoms are mild enough that they choose not to have treatment at all, but endometriosis should still be monitored as it can cause issues down the road (20).

Which medications can help you treat endometriosis? 

If you are experiencing pain from endometriosis, a healthcare provider may suggest an NSAID, an over-the-counter anti-inflammatory pain medication (2). Hormonal medications like hormonal birth control are also often prescribed as an early approach (4) to stop retrograde menstruation. Other medications that affect the hormones may also be prescribed if the previous approaches are not providing enough relief, such as GnRH antagonists, medication that prevents ovulation and may stop the thickening and shedding of some endometrial tissue, or aromatase inhibitors, medication that limits the body’s production of estrogen, and may help with some symptoms, but can cause strong side effects and are usually prescribed after other options have been explored (4,21).

What kind of surgery can you have for endometriosis? 

In some cases, a doctor might suggest a laparoscopy to explore and surgically remove or destroy problematic tissue. This can help with pain symptoms, and improve fertility (4,2). 

There is a lot of debate about which surgery method is better for which stage of the condition. Surgery can be “conservative” or “definitive”. Conservative surgery involves removing endometriotic lesions without removing the uterus or ovaries. Definitive surgery, on the other hand, involves removing endometriotic lesions along with the uterus and possibly the ovaries (4). The procedure to remove the uterus is called hysterectomy (22). It is a final treatment option after other methods have been exhausted. It is important to note that surgery carries its risks, which must be carefully weighed against benefits. Definitive surgery should be done after careful consideration and is not recommended for adolescents or people who desire to carry a pregnancy in the future, as removing the uterus causes infertility (2,21).

Which lifestyle changes can you make to treat endometriosis?

Some people consider alternative treatments for their symptoms. These include physical exercise, diet changes, and acupuncture (23,24). Unfortunately, there is still little research and a lack of evidence for the effectiveness of many of these approaches. As inflammation is one of the causes of endometriosis, an anti-inflammatory diet involving more fiber and less meat and fat could help reduce the risk of endometriosis (24). Alcohol and smoking can increase the risk for endometriosis, while coffee intake has not been shown to have an impact (25). Acupuncture and fish oil have been shown to reduce pain related to endometriosis, but more high-quality research is needed (24,26).

How can endometriosis affect your mental health?

Endometriosis can affect your mental health in several ways. The delay in diagnosis, severity of symptoms, and stigma can lead to poor physical, social, and psychological functioning, as well as anxiety and depression (27). If you feel that the condition is affecting your quality of life, you should talk to your healthcare provider. 

What to track in the Clue app

Essential to track

  • Bleeding patterns (including spotting)

  • Pain

Helpful to track

  • Flow heaviness

  • Energy

  • Stool

  • Gastrointestinal symptoms, such as bloating and diarrhea

  • Contraception use

Advocacy, research, and education will continue to bridge the gap in diagnosing endometriosis.  If you’re looking for additional support, there are support organizations that specialize in endometriosis, like the Endometriosis Foundation of America or Endometriosis UK

Article originally published on March 14, 2018.

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