What are the Symptoms of Endometriosis?

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 feel pain 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

Why is Diagnosis of Endometriosis Important and How is it Diagnosed?

Early diagnosis for endometriosis is extremely important as it can help to provide treatment options sooner, it can stop/slow disease progression, it can provide answers, it can validate your symptoms, and it can reduce isolation that tends to accompany chronic illness. It can also make you feel better physically.

On average, in Canada it takes at least five years for individuals to be diagnosed with endometriosis. For women of colour and gender-diverse individuals, diagnosis can take even longer.

To begin the diagnostic process, your health care provider will do a thorough medical evaluation that includes information about symptoms and gynaecologic health history. Information that you may be asked about is as follows:

  • Your pain and symptoms
  • Your reproductive health (age of first period, details about your menstrual cycle, and pregnancy history)
  • Medications you are taking
  • Your family history of endometriosis
  • Your medical history
  • Your general health

CLICK HERE FOR RESOURCES ABOUT HOW TO TRACK AND TO TALK TO YOUR PHYSICIAN ABOUT YOUR SYMPTOMS AND EXPERIENCES

A physical examination is necessary to make a diagnosis. Your health care provider will perform a pelvic examination and possibly a rectal–vaginal examination. A physical exam allows them to feel for signs of endometriosis or other disorders that may be contributing to your symptoms. They may try to perform this exam when you are menstruating to help improve the chance of detecting endometriosis.

Your health care provider may also suggest or perform an ultrasound, which may show signs of endometriosis or other pelvic disorders that may be contributing to your symptoms (e.g., ovarian cysts or uterine fibroids). If endometriosis is suspected, you may receive:

  • A clinical diagnosis, which means that endometriosis is suspected, but there is no advanced imaging or surgical confirmation. A clinical diagnosis may allow for earlier treatment to manage pain or infertility.
  • A recommendation for advanced ultrasound or MRI to receive an imaging diagnosis, which may allow for more targeted treatment of endometriosis or surgical planning.
  • A recommendation for surgery to attain a surgical diagnosis. In this case, a surgical procedure performed by gynaecologist will be performed. Surgical diagnosis may also help with the management co-occurring conditions, such as uterine fibroids.

CLICK HERE TO LEARN MORE ABOUT SURGERY FOR ENDOMETRIOSIS

It is important to understand that all surgeries have some amount of risk, so surgery is not recommended for all people with suspected endometriosis. Your health care provider will likely recommend other, less invasive treatment options first.