Women continue to speak out about their experience with endometriosis

6.28.18

6.28.18

Endometriosis affects nearly 10 percent of women. But as an invisible and chronic illness, endometriosis frequently goes undiagnosed for years, leading to an increase in the severity of a patient’s symptoms.

In the past, pain resulting from undiagnosed endometriosis was commonly thought of as a “women’s problem.” Even today it’s still not very well understood or researched in the medical field, and hundreds of thousands of women suffer because of doctors who don’t understand or believe the extent of their pain. Endometriosis is a condition where cells similar to those found in the lining of the uterus are found in other organs – resulting in pain and internal scarring.

A book published earlier this year entitled “Ask Me About My Uterus,” by Abby Norman, describes the author’s journey with this chronic condition – from experiencing her first symptoms to a final diagnosis – in detail. While doctors and researchers today understand more about endometriosis than in the past, Norman believes that the medical system “doubts, ignores, or normalizes women’s pain.”

Insurers have long made treating endometriosis a complicated, expensive and lengthy process, oftentimes putting the burden on the patient to “prove” they suffer from a chronic illness. In the book, Norman describes her experience with doctors.

“I was the primary source of data for the investigation into my condition, and yet it often felt like the data I presented was questioned by others as unreliable, which made me question myself,” she wrote.

Once diagnosed, many women opt to treat their endometriosis through excision, a surgical procedure where the endometriosis is removed from all areas without damaging internal organs. However, finding a doctor who will perform an excision – let alone making sure an insurance company will cover the procedure – is difficult for many patients.

As Meghan Cleary, an endometriosis patient and advocate, explained in a recent article about the difficulty many patients experience when navigating their provider, “endometriosis patients get caught in what’s called in the healthcare field, a ‘care gap’ or an ‘access to care gap.’ What this means is that most insurers do not pay the labor costs of the surgeon for excision surgery.”enm

In the same article, Cleary provided advice to endometriosis patients on how to work with insurance companies to ensure that excision surgery is covered. Cleary also expanded on helping endometriosis patients work with their insurance company through a 90-minute online seminar, which you can access by clicking here.

Both Cleary and Norman understand the hurdles that endometriosis patients face in receiving a proper diagnosis and treatment. By spreading awareness and publishing their own experiences, perhaps more women will be empowered to speak to their doctors about chronic pain and have the tools they need to fight for the health insurance coverage they deserve.