Actor Lilli Reinhart has shared her diagnosis of endometriosis – a chronic disease whose symptoms include severe pain during menstruation and heavy menstrual bleeding – which was officially confirmed last week following laparoscopic surgery. Also read | Endometriosis specialist shares 5 signs that show your cramps may not be normal
In a candid Instagram post on December 11, the Riverdale actor shared hospital photos and detailed her frustrating and protracted journey to receive an accurate diagnosis, highlighting the importance of self-advocacy.
‘I was told there was no cure’
Lilli’s health struggles began earlier, when she was diagnosed with interstitial cystitis (IC) last year after consulting a urogynecologist. She was told there was ‘no cure for her symptoms’, a period that involved three hospital visits and consultations with multiple urologists and gynecologists.
“Last week, I was officially diagnosed with endometriosis following laparoscopic surgery. 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 gynecologists. And not one of them seriously considered endometriosis as the underlying cause of what I was experiencing,” Lilli wrote in her Instagram caption, shedding light on the common diagnostic challenges faced by those with the condition.
Actor’s path to diagnosis
The key turning point in her health journey came through working with pelvic floor therapists. Lilli said that it was through their guidance that ‘the word endometriosis was even mentioned to her as a possible source of her pain’. Her self-advocacy led her to pursue an MRI on her own, which revealed a diagnosis of adenomyosis, a condition where endometrial tissue grows into the muscular wall of the uterus. This, in turn, prompted her to meet with an endometriosis specialist who recommended laparoscopic surgery.
Highlighting the persistent challenge of medical dismissal, Lilli wrote, “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. I pushed for an MRI on my own, which led to a diagnosis of adenomyosis. From there, I met with an endometriosis specialist who helped me decide that laparoscopic surgery was the next step I wanted to take — while, at the same time, another gynecologist told me I ‘probably didn’t have endo’ and should just go on the pill.”
Raising awareness for a misunderstood disease
Lilli expressed relief in trusting her instincts and stressed the necessity of others doing the same. “I’m glad I trusted my body and listened to my gut and will continue advocating for others to do so,” she said.
Lilli used her platform to raise awareness about the scale and severity of the disease. The actor shared that endometriosis is “an extremely misunderstood disease, leaving often a 4-11 year gap between symptoms and a definitive surgical diagnosis.” The World Health Organisation estimates that 1 in 10 people with uteruses have endo, she added.
Her announcement is expected to bring greater visibility to the chronic condition, which involves tissue similar to the lining of the uterus growing outside of the uterus, causing significant pain and other health complications.
Note to readers: This article is for informational purposes only and not a substitute for professional medical advice. Always seek the advice of your doctor with any questions about a medical condition.