The Irish premiere of a documentary on endometriosis, highlighting how women can spend up to 10 years seeking diagnosis, takes place on Thursday. It is American filmmaker Shannon Cohn’s second documentary on endometriosis, with the earlier show hailed as "film of the year" by the .
This documentary,, with Hillary Clinton as executive producer, is expected to have a similar impact.
Endometriosis is estimated to affect 10% of women and girls around the world, and can cause severe, life-impacting pain and lead to infertility.
Ms Cohn said her activism is driven by wanting to improve healthcare access for her daughters, having experienced many obstacles herself.
“I first had symptoms when I was 16 but I didn’t hear the word until 13 years later,” she said.
“I have two young daughters, and I read a journal article that said there is a seven-times increased risk among mothers, daughters and sisters.
"That was when I was galvanised to take action so hopefully they will have a different future.”
On Tuesday she discussed her findings with about 1,500 European surgeons at a conference in Lisbon.
“So their bodes aren’t ravaged by this disease unnecessarily, so they are getting to the surgeons for an incision after six months or a year rather than seven to 10 years," she said.
There is no cure, and the HSE advises treatment depends on individual situations with a wide range of symptoms. This can include pain relief, hormone treatment and surgery.
Among the documentary interviewees is a nurse who says she is not listened to when attending appointments.
“She realised that doctors listened to her more when she brought her partner, who is male, with her,” Ms Cohn said.
"He works with computers, she’s a registered nurse, these symptoms were happening to her.”
The filmmaker describes many women’s experiences as similar to gaslighting, while another interviewee describes getting more accurate information online than from hospitals.
Playwright Lisa Tierney-Keogh is one of the volunteers involved in arranging the Irish screening.
Last year, she went public about having to travel to America for surgery, and her struggle to get a medical exemption from Covid-19 hotel quarantine on her return.
She hopes this documentary can have a positive effect by showing women they are not alone, and ultimately leading to changes in health policy.
“I have continuing issues, I wasn’t diagnosed until I was 43 so the disease had years to grow and do damage,” she said.
“As an endometriosis patient myself, I can tell you we need all the help we can get in trying to raise awareness and push the Department of Health into taking this disease as seriously as they take asthma and diabetes.”
Ms Cohn and a panel of experts, including a member of the Women’s Health Taskforce and a medical consultant, will answer questions after the showing.
‘Below the Belt’ is at the IFI in Dublin (booking required). More information here.