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 In Ask an Expert, Midwifery, Pulse Blog

Q: What is it like to have endometriosis?

Endometriosis is a condition where endometrial tissue, which is normally present only in the uterus, grows outside the uterus. This tissue may be found on the bladder, intestines, fallopian tubes, ovaries, and other areas. About 10 percent of reproductive-age people with uteruses have endometriosis, according to a New England Journal of Medicine article.

Endometriosis impacts each person differently. Some people don’t experience any pain from the disease, while others feel pain in multiple places. Some people experience mild discomfort. For others, the condition is severe or debilitating.

The location and type of pain are also unpredictable. Pain may be associated with:

  • Sex (deep, internal pain during penetration)
  • Periods (pelvic and/or low back pain during periods, sometimes radiating down one leg)
  • Bladder emptying (pain with urination)
  • Bowel movements (pain with elimination)

Fertility impacts vary as well. Endometriosis is a common cause of infertility, yet not all people with endometriosis have trouble becoming pregnant. On the other hand, infertility is sometimes the only symptom of endometriosis a person has. Many people who have been diagnosed with endometriosis are able to use fertility treatments to help them have a baby. Intrauterine insemination (IUI) combined with hormone therapy to stimulate egg development and release is one option. In vitro fertilization (IVF)—where eggs are removed, fertilized in a laboratory, then returned to the uterus to grow—is another.

Treatment for endometriosis is based on the extent of the disease, the severity and nature of the person’s symptoms, and whether or not they wish to become pregnant. First-line treatment for endometriosis-related pain is typically birth control pills and anti-inflammatory pain relievers such as ibuprofen. Some people also find it helpful to incorporate heat, ginger supplements, pelvic floor therapy, and mindfulness or guided imagery techniques. Surgery may be recommended when the disease is extensive.

Some people with endometriosis have experienced having their pain misdiagnosed or minimized. Studies show that it typically takes 4–11 years for endometriosis patients to receive a diagnosis. What’s more, the disease has historically received limited research funding despite its prevalence. That means we know less about the disease and have fewer treatments available than we might otherwise. However, that picture is starting to change. Funding is increasing, patients are speaking out, and more surgeons are being trained in the minimally invasive surgery techniques used to manage the disease.

If you are experiencing pain, menstrual irregularities, or difficulty becoming pregnant, make an appointment with your clinician. Also, please reach out if you have questions about your options for managing an endometriosis diagnosis. Your clinician is here to support you.

—Alex Silverman, CNM

Midwife Alex Silverman empowers individuals to make informed choices about their bodies. She takes the time to educate patients about evidence-based options and supports them as they choose the best course for themselves and their families.

Alexandra (Alex) Silverman, CNM.