Lili Reinhart’s Endometriosis Struggle Is All Too Familiar

Lili Reinhart has shared her endometriosis diagnosis with the world – and her experience is far from abnormal.

The Riverdale actress said that she has been experiencing pain for years, and that finally, after multiple false misdiagnoses she was diagnosed with endometriosis this month.

Lili took to Instagram to share a series of photos, documenting her experience.

“Last week, I was officially diagnosed with endometriosis following laparoscopic surgery,” she began. “Last year, I saw a urogynecologist and was diagnosed with interstitial cystitis. I was told there was no cure—and no lasting relief—for my symptoms.

“Three hospital visits. Multiple urologists and gynaecologists. And not one of them seriously considered endometriosis as the underlying cause of what I was experiencing.

“It wasn’t until I worked with two different pelvic floor therapists that the word endometriosis was even mentioned to me as a possible source of my pain.”

 

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Lili went on to say that she asked for an MRI, despite being told that she should just “go on the pill.”

“From there, I met with an endometriosis specialist who helped me decide that laparoscopic surgery was the next step I wanted to take,” she said, “while, at the same time, another gynaecologist told me I “probably didn’t have endo” and should just go on the pill.”

“I’m glad I trusted my body and listened to my gut and will continue advocating for others to do so. (Endometriosis is an extremely misunderstood disease, leaving often a 4-11 year gap between symptoms and a definitive surgical diagnosis. It’s estimated 1 in 10 people with uteruses have endo according to the World Health Organization.)”

Lili’s experience is, sadly, not a unique one. Here in Ireland, people generally wait up to nine years for a diagnosis, despite one in 10 women living with the condition.

One of the major issues around endometriosis is awareness. But the other is a lack of available means of diagnosing it.

Endometriosis can only be diagnosed after a laparoscopy surgery to determine the presence of tissue similar to the that in the womb growing outside of the womb.

There also exist many medical misconceptions about endometriosis within the medical community. Many patients report being dismissed by doctors and, like Lili, offered false diagnoses, which only prolongs their pain.