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What is endometriosis and how do you get it?

Updated: Jul 5, 2023

Endometriosis, pronounced end-o-me-tree-oh-sis (or just endo), is a progressive, chronic condition where cells similar to those that line the uterus (the endometrium) are found in other parts of the body.

It most commonly occurs in the pelvis and can affect reproductive organs.

Studies suggest that endometriosis affects 1 in 10 women of reproductive age, with an estimated 11% (6.5 MILLION) of AFAB (Assigned Female at Birth) individuals in the US having the condition.

Endometriosis not only has an effect on individuals but the larger economy, endometriosis is estimated to cost the U.S. economy $22 billion annually and the global economy $70 billion.

Despite this, it can take anywhere between 4 and 11 years for women to receive the correct diagnosis, and as many as 6 out of every 10 cases of endometriosis may remain undiagnosed

The endometrial cells:

  • Are found on organs in the pelvis

  • May start to grow and form patches or nodules on pelvic organs or on the peritoneum (the inside lining of the abdomen and pelvis)

  • Have the same cyclical/menstrual changes outside the uterus as inside the uterus

  • May bleed at the same time as your period (menstruation).

Endometrial cells found outside the uterus grow to form lesions or patches that bleed and leak fluid in response to your hormones at the time of the period.

This leads to inflammation and scarring. These patches found outside the uterus cannot pass out of your body and remain in your pelvic cavity, on organs and other surfaces.

On ovaries, cysts called endometriomas can develop over time. These are sometimes called 'chocolate cysts' because of the darkish material they contain.

On other surfaces, the patches can form nodules.

The different types of endometriosis

Superficial endometriosis: here, superficial areas of disease appear on the lining of the pelvis and abdomen (called the peritoneum). These do not invade deeply into the tissues

Deep-infiltrating endometriosis: endometriosis lesions do invade deeply (more than 5mm) into the tissues and can lead to scarring and nodules. These can grow into nearby organs, such as the bladder, bowel and ovary

Ovarian disease: this may occur and is often considered a separate form of the disease. Here, burrowing lesions on and under the ovaries can lead to the development of 'chocolate cysts' or endometriomas

Adenomyosis: is a different condition but can occur with endometriosis. In adenomyosis the cells similar to the uterine lining can be present in the muscle wall of the uterus rather than outside the uterus for example:

  • Outside the pelvis (this is rare)

  • Upper abdomen, e.g. on the diaphragm

  • In the liver, nose, or eye

  • Abdominal wall, often associated with previous operation scarring

Symptoms of endometriosis

Pain is a key symptom of this condition. The pain is not related to how severe the disease is, but rather to the location of endometrial tissue.

The below outlines the symptoms you might experience with endometriosis. Each individual with endometriosis will experience a different range of symptoms.


  • Pain immediately before and during a period (also called dysmenorrhoea).

  • Pain during or after sex (also called dyspareunia).

  • Abdominal, lower back and/or pelvic pain.

  • Pain on going to the toilet, passing urine, opening bowels.

  • Ovulation pain, including pain in the thigh or leg (this can also happen in women without endometriosis).


  • Heavy menstrual bleeding, with or without clots.

  • Irregular menstrual bleeding, with or without a regular cycle.

  • Bleeding longer than normal.

  • Bleeding before a period is due.

  • Bladder and bowel problems

  • Bleeding from the bladder or bowel.

  • Change in pattern of bowel habit, such as constipation, diarrhea.

  • The need to urinate more frequently, or some other change from the normal habit.


  • Increased abdominal bloating, with or without pain at the time of the period.


  • Tiredness or lack of energy, especially around the time of the period.

Mood changes

  • Anxiety and depression due to ongoing pain.

Reduced quality of life

  • Taking days off work, study or school because of an inability to function normally.

Vaginal discomfort

  • Pelvic floor muscle spasm or tightening occurs because of fear of pain previously experienced with intercourse or the use of a tampon.

Causes of endometriosis

We don't really know what causes endometriosis, and possible associations or factors can be different from woman to woman.

Factors that have a role in causing endometriosis include:

  • Retrograde menstruation. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. These endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.

  • Transformation of peritoneal cells. In what's known as the "induction theory," experts propose that hormones or immune factors promote the transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial-like cells.

  • Embryonic cell transformation. Hormones such as estrogen may transform embryonic cells — cells in the earliest stages of development — into endometrial-like cell implants during puberty.

  • Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.

  • Endometrial cell transport. The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.

What we can do to prevent endometriosis

At the moment endometriosis can’t be prevented. But there are a few things that can be done to reduce the chances of developing it by lowering the hormone estrogen levels.

Estrogen helps to thicken the lining of your uterus during your menstrual cycle.

Here are a few ways to keep lower estrogen levels:

  • Consult a doctor about hormonal birth control methods, such as pills, patches or rings with lower doses of estrogen.

  • Exercise regularly (more than 4 hours a week). This will also help keep a low percentage of body fat. Regular exercise and lower body fat help decrease the amount of estrogen circulating through the body.

  • Avoid large amounts of alcohol. Alcohol raises estrogen levels. No more than one drink per day is recommended.

  • Avoid large amounts of drinks with caffeine. Studies show that drinking more than one caffeinated drink a day, especially sodas and green tea, can raise estrogen levels.

How certain food groups such as gluten may affect endometriosis

Yes, gluten may be making endometriosis worse!

Gluten intolerance can come in the form of rashes, eczema, swelling, joint pain, allergies, inflammation, or any gastro issues like constipation or diarrhea, bloating, or an inability to lose stubborn weight or “inflammatory weight”.

Gluten intolerance is a known fertility disruptor as well, potentially causing hormonal imbalances, ovulatory disorders, or an inability to get pregnant or carry a baby to term.

Endo pain and gluten

If endo pain is your bummer symptom, going gluten-free may help.

In one study of women with endo, 75% of participants who cut out gluten had dramatic reductions in their pain from this act alone. Yay for addressing endo-belly!

Endometriosis is a chronic diagnosis that there seems to not be much we can do to treat or prevent, this does not mean that endometriosis is the end of the road for your fertility and family-building journey.

At ELANZA we have developed a care plan that takes each aspect of your life, diagnosis, and future goals into account to better support you and help you manage your endo.

Along with a coach you will be given the tools to manage pain, and your diagnosis and better advocate for yourself.

If you are looking for a revolutionary approach to managing your endometriosis sign up today.


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