Endometriosis affects women, girls, transgender men, and gender-diverse and non-binary people of all races, ethnicities, and socio-economic groups. The symptoms of endometriosis can be highly individual and may depend on location and severity of the disease, even though there is not always a connection between the extent of the disease and the symptoms. Some people have very little endometriosis but a lot of pain, while others have severe endometriosis without experiencing any symptoms at all.

The most common symptom of endometriosis is pain, which can present in a variety of ways.

  • Painful periods: If you have endometriosis, you may have severe cramping that begins earlier in the menstrual cycle and lasts longer. You may also experience heavy or irregular periods. If you are having cramps so severe that they impact your day-to-day life, it is important to speak to a health care provider.
  • Painful sex: If you have endometriosis, you may feel pain deep in the abdomen and/or pelvis during or after sex. This may be due to fibroids, ovarian cysts, pelvic adhesions, scar tissue, hormonal fluctuations, and inflammation. People with endometriosis may also experience vaginismus (vaginal muscles tighten up when penetration is attempted), vulvodynia (pain, burning, and discomfort in the vulva), or bleeding during vaginal sex.
  • Pain when using the bathroom: If you have endometriosis, you may experience painful urination or bowel movements during menstruation. In cases where the bowel or bladder are severely affected by endometriosis, you may feel pain may when using the bathroom, regardless if you are currently having your period.
  • Pelvic, lower back, or leg pain: If you have endometriosis, you may feel pain in your pelvis, lower back, or legs at any time, and it may worsen before or during menstruation. For people with leg or sciatic pain, endometriosis may be affecting your nerves.

In addition to pain, you may experience:

  • Bloating due to inflammation, fluid retention, or other challenges with digestion
  • Gastrointestinal symptoms including diarrhea, constipation, nausea, and vomiting
  • Infertility: If you have endometriosis, it may be more difficult to become pregnant or carry to term. Infertility may be a symptom of endometriosis but is not the cause of endometriosis.
  • Fatigue
  • Anxiety and depression

Living With Chronic Pain

It is difficult to live with chronic pain. People with endometriosis experience higher rates of other pain conditions such as irritable bowel syndrome, migraines, and fibromyalgia. There is also an increased risk of ovarian and other gynaecological cancers.

The severity and frequency of these symptoms, including pain, can increase as people age. For people who do experience one or multiple symptoms, endometriosis can have a large effect on their social life, school or professional aspirations, health, and finances. Ongoing symptoms like severe pain, fatigue, and infertility can prevent people from going to work or school. Painful sex or bleeding during sex can lead to avoiding intercourse and can put stress on a person or relationship. Together, these can impact people’s quality of life, result in social exclusion, diminish self-esteem, and heighten their anxiety or depression. Feelings of uncertainty, anxiety, and depression may be higher among people who feel that they have been dismissed by friends, family, or medical professionals, and among those who have experienced systemic oppressions, delays to diagnosis, and medical trauma. Said feelings may also appear in realms where culturally safe, trauma-informed, and/or gender-affirming care is not available.

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