Lili Reinhart has revealed she’s been diagnosed with endometriosis after an agonisingly long medical process.
The Riverdale actress, 29, shared on social media that she’s been diagnosed with the painful condition, in which cells similar to the lining of the uterus, or endometrium, grow outside the uterus.
Sharing pictures of herself in hospital waving up at the camera, Lili wrote on Instagram: ‘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.
‘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.’
Lili, who also shared pictures of her punctured stomach covered in plasters, was unconvinced by her initial diagnosis and the actress actually had to push to have an MRI scan.
What is endometriosis?
Endometriosis is where cells similar to those in the lining of the womb (uterus) grow in other parts of the body. It can have a huge impact on daily life and be debilitating for some.
Symptoms can include severe period and pelvic pain, heavy periods, pain during or after sex, extreme tiredness, and pain or bleeding in other areas like the chest, which may cause shortness of breath and coughing up blood.
Those with endometriosis may struggle to get pregnant, and could suffer with low mood or anxiety.
The Riverdale star is now glad that she ‘listened’ to her body and Lili has pledged to ‘continue advocating for others’ in the coming years.
Lili’s post continued: ‘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.
‘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 Organisation.)’
Why isn’t endometriosis diagnosed easily?
Diagnosis can take a while, as symptoms can be similar to other conditions including fibroids, pelvic inflammatory disease and IBS, according to the NHS.
The only definitive way to diagnose endometriosis is by a laparoscopy -an operation in which a camera is inserted into the pelvis via a small cut near the navel.
It takes an average of eight years for UK women to get a diagnosis.
But there is a deeper problem:
90% of people suffering with endometriosis – which is 1.5million in the UK – say their symptoms are dismissed or disbelieved by people, including doctors.
Last year a study by Manchester Metropolitan University, as reported by The Guardian, found women felt ‘gaslit’ by doctors, due to their lack of understanding of the condition, with medical misogyny also at play.
‘Many people who are uneducated about the disease, including some doctors and other health care professionals, will dismiss a woman’s pain as being “normal” or claim that it’s all in her head,’ says Endometriosis Foundation of America on their website.
Lili also posted a hospital selfie on her Instagram Story, revealing that she felt ‘validated’ by her diagnosis.
She said: ‘I don’t remember taking this horrible photo. But I think I wanted to capture a moment of post-surgery validation. The second I saw my doctor I asked, “Did you find it?” And he said, “We found endo.” And I felt so validated and relieved that I chose to listen to my body and pursue this surgery.’
Elsewhere in the post, Lili held up a written note which read: ‘Believing women’s pain shouldn’t be revolutionary.’
Charity Endometriosis Foundation of America, who were given a shout out in her note, commented: ‘Thank you for being so open about your endometriosis journey, Lili. Speaking out takes courage — and it changes lives. Your story will bring awareness, validation, and hope to so many.’
Sharing another thought to her Instagram Story, Lili also wrote: ‘I still don’t understand how the 8 – 10 doctors I saw last year didn’t mention endometriosis while I was searching for answers.
‘I’m grateful to the pelvic floor therapists who told me to look into this disease as a source of my pain. Ultimately my goal was to preserve fertility and lessen the severity of my current symptoms.’
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