Endometriosis is often misdiagnosed. How to get the right diagnosis.

The six to ten percent of women in the U.S. who are living with endometriosis have to deal with not only the pain and complications the disease causes, but often also with exceptionally long delays before receiving a diagnosis—an average of 8.5 years from first seeking care to diagnosis. One study revealed that more than 75 percent of the women who participated in the study were first diagnosed with another health condition, a mental health problem, or both before they were correctly diagnosed. This cycle of delays and misdiagnosis leads many women to give up even seeking a diagnosis after years of health care providers telling them their symptoms are simply the result of painful periods or anxiety.

What is endometriosis?

Endometriosis is a chronic condition that can affect anyone who was assigned as female at birth. Tissue similar to tissue in the uterus grows outside of the womb. This tissue is called an endometrial lesion. The most common locations of lesions include:

ovaries
fallopian tubes
bowel and bladder
ureters
abdominal wall

Less commonly, lesions may also form on the intestines, rectum, bladder, vagina, cervix, and vulva.

As the lesions grow and bleed, they cause inflammation and scarring, causing a range of symptoms, including:

severe cramps felt in the abdomen and back during menstruation
very heavy bleeding during periods and bleeding between periods
pelvic and lower back pain when menstruation is not occurring
pain during and after intercourse
bloating
pain or cramping when emptying the bowels or bladder
infertility
chronic fatigue
nausea
constipation/diarrhea

The pain and other symptoms caused by endometriosis can significantly negatively affect the quality of life for some women. People with this disease have an increased risk of depression, miss time from work, and report difficulty in sexual/romantic relationships as a result of their symptoms.

Four steps to help patients get an accurate diagnosis

Several factors can contribute to the misdiagnosis or a delayed diagnosis of endometriosis. Some health care providers and women assume the pain caused by the disease is just a severe form of menstrual cramps. Some patients experience provider bias, with providers assuming the patient is being oversensitive or that the cause of the patient’s pain is psychological. Many endometriosis symptoms are similar to those of other common diseases, including irritable bowel syndrome, inflammatory bowel disease, colitis, pelvic inflammatory disease, ovarian cysts, bladder problems, and chronic lower back pain. These shared symptoms can make diagnosis more complex, especially for health care providers who do not treat many patients with endometriosis.

However, there are strategies that can help people get an accurate diagnosis and an evidence-based treatment plan to manage symptoms and improve their quality of life.

Track your symptoms. Keep a detailed diary of symptoms, the dates and times you experience them, and what makes them more or less severe. Be specific about the location and duration of pain. It’s also helpful to give your provider examples of how the pain is affecting you, for example, if it’s causing you to miss work. Bring a hard copy of your symptom log and ask your provider to add it to your medical record.

Work with a provider who has experience treating endometriosis. Before choosing a provider, find out if she or he has experience treating people with endometriosis. Ask what their assessment process includes, what treatments they recommend, and where they would refer you if you need surgery or other specialized treatment.

Prepare for your appointment. Bring a list of questions and ask if your symptoms could be caused by endometriosis. You also may want to discuss what diagnostic tests will be recommended and what they involve, what treatment options are available, how endometriosis and any proposed treatment could affect your fertility, and if there any lifestyle changes that may help you manage symptoms.

Bring someone with you to appointments. Because the risk of misdiagnosis is high, consider enlisting the help of a friend or family member. Your support person can help you research providers and treatments, attend appointments with you to ask questions and take notes, and provide moral support as you work to get a diagnosis and treatment plan in place.

This essay is cited in the KevinMD record on women’s health.