Endometriosis is often misdiagnosed. This is how you get the right diagnosis.

The 6 to 10 percent of women in the US who live with endometriosis not only have to deal with the pain and complications that the disease causes, but often face exceptionally long delays before they receive a diagnosis — an average of 8.5 Years from initial treatment to diagnosis. One study found 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 being properly diagnosed. This cycle of delays and misdiagnosis causes many women to give up even seeking a diagnosis after years of healthcare 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 born female. Tissue similar to tissue in the uterus grows outside the uterus. This tissue is called an endometrial lesion. The most common locations of lesions are:

• ovaries
• fallopian tubes
• bowel and bladder
• ureter
• abdominal wall

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

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

• severe abdominal and back cramps during menstruation
• very heavy bleeding during your period and bleeding between periods
• Pelvic and back pain when menstruation stops
• Pain during and after intercourse
• gas
• Pain or cramps when emptying your bowels or bladder
• infertility
• chronic fatigue
• nausea
• constipation/diarrhea

The pain and other symptoms caused by endometriosis can significantly affect the quality of life for some women. People with this condition have an increased risk of depression, absenteeism from work, and reporting difficulties 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 delayed diagnosis of endometriosis. Some health care providers and women assume that the pain caused by the disease is just a severe form of menstrual cramps. Some patients experience provider bias, with the provider assuming that the patient is hypersensitive or that the cause of the patient’s pain is psychological. Many endometriosis symptoms are similar to other common conditions, including irritable bowel syndrome, inflammatory bowel disease, colitis, pelvic inflammatory disease, ovarian cysts, bladder problems, and chronic back pain. These common symptoms can make diagnosis more complex, especially for healthcare providers who don’t treat many patients with endometriosis.

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

Track your symptoms. Keep a detailed journal of symptoms, the dates and times they occur, and what makes them more or less severe. Be specific about the location and duration of the pain. It’s also helpful to give your provider examples of how the pain is affecting you, such as: B. if you miss work as a result. Bring a paper copy of your symptom log and ask your doctor to add it to your medical record.

Work with a provider who has experience treating endometriosis. Before choosing a provider, find out if he or she has experience treating people with endometriosis. Ask what their assessment process involves, 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 may also want to discuss what diagnostic tests are recommended and what they involve, what treatment options are available, how endometriosis and each suggested treatment might affect your fertility, and if there are lifestyle changes that can help you manage the symptoms.

Bring someone with you to appointments. Since the risk of misdiagnosis is high, you should enlist the help of a friend or family member. Your support person can help you find providers and treatments, attend appointments with you to ask questions and take notes, and provide moral support as you work to create a diagnosis and treatment plan.

Miles J. Varn is the Chief Executive Officer of PinnacleCare and can be reached on LinkedIn.

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