Endometriosis: How Stigma, Misdiagnosis, and Insurance Issues Lead to Access Barriers

Endometriosis is commonly misdiagnosed. It is thought to affect more than 11% of women aged 15-44 in the United States. Endometriosis is often hard to diagnose because it shares symptoms with several other conditions. As a result, patients may endure the wrong treatments without seeing any improvement.

In this article, we will be looking at the signs and symptoms of endometriosis, identify common access barriers, and share the experiences of women who had difficulty getting the right treatment.

What Does Endometriosis Look Like for the Patient?

Among women with endometriosis, the lining that is inside the uterus grows outside the uterus. This tissue outside behaves like the tissue inside and undergoes changes during each menstrual cycle. However, since there is no path for the tissue to exit the body as it sloughs off, it ends up being trapped. This leads to scarring, adhesions, and significant discomfort.

Other organs may also be involved in this condition:

  • Ovaries
  • Fallopian tubes
  • Tissue lining your pelvis

Symptoms

Typical symptoms include:

  • Pain during periods, accompanied by lower back and abdominal pain
  • Pain during or after intercourse
  • Pain with bowel movements or urination, usually during your period
  • Excessive menstrual bleeding or bleeding in between periods
  • Infertility (nearly 40% women with infertility have endometriosis)
  • Other signs and symptoms may be experienced during periods, such as fatigue, nausea, diarrhea, constipation, bloating

Since some of these symptoms are not unique, endometriosis is commonly misdiagnosed as pelvic inflammatory disease, ovarian cysts, or irritable bowel syndrome.

Risk Factors

What could increase your chances of developing endometriosis?

  • Never giving birth
  • Period at an early age
  • Late menopause
  • Shorter menstrual cycle (less than 27 days)
  • Heavy and long (>7 days) periods
  • Close relatives (mother, sister, or aunt) with endometriosis
  • Abnormalities in your reproductive tract
  • Medical condition that prevents normal menstrual flow out of your body

Detailed information on how endometriosis is diagnosed can be found here.

Treatment Options

Medications and surgery are the treatment options for endometriosis. Medications, such as pain relievers and hormonal medications, are commonly used. Hormonal medications help reduce the growth of the endometrial tissue and prevent adhesions from forming. However, surgery is the only option to remove existing endometriosis tissue.

RESOURCE: The Office on Women’s Health offers answers to frequently asked questions about endometriosis and also provides additional resources.

Barriers to Adequate Care for Endometriosis

While quality-of-life issues are a big concern for those suffering from endometriosis, several barriers to care have been identified. We already know that endometriosis is commonly misdiagnosed, but a group of clinicians, researchers, and patients identified other barriers:

  • Societal normalization of women’s pain and stigma around menstrual issues, which may prevent women from discussing their condition with their doctor, resulting in a delayed diagnosis
  • Lack of knowledge and awareness about the disease, among women as well as clinical care providers 
  • Absence of noninvasive diagnostic tools
  • Limitations of current treatment options
  • Difficulties in accessing care
  • Lack of a validated screening questionnaire

There is an average time lag of 7-12 years between symptom onset and diagnosis of endometriosis, stemming from a combination of misinformation about the disease and symptoms being mistaken for other gynecologic or gastrointestinal conditions.

Insurance Barriers

Patients with endometriosis may face typical insurance coverage issues as faced by any other chronic disease patients. Chronic Disease Coalition patient ambassador Michelle Johnson shared her experience with being an endometriosis patient. She was diagnosed with an advanced form of the disease that required surgery. In her blog, she describes facing insurance-related issues such as

You are not alone!


Surabhi Dangi-Garimella, Ph.D.

Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience, who brought her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.


From the Editor:

Read this article by endometriosis patient Meghan Cleary who provides detailed guidance on how to negotiate coverage for your treatment and surgical procedures with your insurance company. 

Or Gwen’s struggle with endometriosis and other invisible illnesses in her quest for care. Because when your illness is invisible, it could explain why a disease like Endometriosis is commonly misdiagnosed.

You can also visit Patients Rising Concierge for help finding healthcare-related services.

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