How women with endometriosis can get the right diagnosis

May 9, 2022 in Disease Management  •  By Miles Varn, MD

Approximately six to ten percent of women in the U.S. are living with endometriosis, a chronic condition that causes tissue similar to tissue of the uterus to grow outside of the womb. For women who report chronic pelvic pain, some studies have found that 71 to 87% of them have endometriosis.

The number of American women living with endometriosis may be even higher than reported in current data. That’s because a significant number of women are misdiagnosed. One study found that more than 75% of women in the study were first diagnosed with another physical health problem, a mental health problem, or both before they were accurately diagnosed with endometriosis. These misdiagnoses lead to long delays before an accurate diagnosis is reached, with women waiting an average of 8.5 years before diagnosis. Many women give up even seeking a diagnosis after years of being told their pain and other symptoms are just the result of painful periods or anxiety.

Understanding endometriosis

Endometriosis can affect anyone who was assigned as female at birth. The tissue that grows outside the uterus in people with endometriosis is called an endometrial lesion. The most common places these lesions occur include:

  • Ovaries
  • Fallopian tubes
  • Bowel and bladder
  • Ureters
  • Abdominal wall

These lesions grow and bleed, causing inflammation and scarring. While many people think of pain during menstruation as the main symptom of endometriosis, the condition can cause a range of symptoms, including:

  • Very heavy bleeding during periods and bleeding between periods
  • Pelvic pain that occurs when menstruation is not occurring
  • Pain during and after intercourse
  • Lower back pain
  • Pain or cramping that occurs when emptying the bowels or bladder
  • Infertility
  • Chronic fatigue
  • Nausea
  • Constipation/ diarrhea
  • Bloating

The only way that endometriosis can be definitively diagnosed is through laparoscopy, a minimally invasive surgical procedure. During the procedure, a small camera is inserted into the patient’s pelvis to look for signs of endometriosis. Other tests that may be performed include transvaginal ultrasound and MRI.

Why is it so difficult to get an accurate diagnosis?

There are several reasons that endometriosis is misdiagnosed or a diagnosis is delayed. Many healthcare providers and women assume that the pain they experience is a normal result of the menstrual cycle. Some patients experience bias from their providers, who assume the patient is being oversensitive or that the cause of the pain is psychological. The condition also shares symptoms with other diseases, including IBS, bladder problems, and chronic lower back pain, making diagnosis more complex.

But there are strategies that can help people with endometriosis get an accurate diagnosis and an evidence-based treatment plan to help them manage symptoms and improve quality of life.

  • Track your symptoms so you can share them with your provider. Keep a log of what symptoms you experience, the dates and times you experience them, and what makes them more or less severe. Be specific about the location and duration of pain. Give specific examples of how the pain is impacting you, for example if it causes you to miss work or avoid intercourse. It may be helpful to bring a hard copy of your symptom log and give it to your provider so the information can be added to your medical record.
  • Choose a provider with experience treating endometriosis. Before making an appointment with an OB/GYN to discuss your symptoms, find out if she or he has experience treating people with endometriosis. Ask what type of assessment they perform and what treatments they usually recommend for patients with endometriosis.
  • Enlist the support of an advocate. Because the risk of misdiagnosis is high, consider enlisting the help of an advocate or health advisor. An advisor can help vet providers, gather and review your medical records, attend appointments, ask questions and take notes, and provide evidence-based research on endometriosis and appropriate treatment options.
  • Come to your appointment prepared. In addition to your symptom log, bring a list of questions to your appointment. You should be direct and ask if your symptoms could be caused by endometriosis. Other topics you may want to discuss include what tests will be done to reach a diagnosis, what treatment options are available, how endometriosis and the proposed treatment could affect your fertility if you want to have children, and if there any lifestyle changes that may help you manage any of your symptoms.