Endometriosis is also underfunded and advocates say, misunderstood. But a registered nurse, author and activist is trying to change that.
[Ads /]
This week, Jenneh Rishe, of Philadelphia, took that fight to Capitol Hill. Rishe is one of the one in 10.
For her, this advocacy is very personal.
On Wednesday, the co-founder of The Endometriosis Coalition met with a bi-partisan panel of congressional lawmakers to push for action.
"Everyone knows someone who has it, the devastation is so immense," Rishe said. "We need to act now. The United States should be the leader of this act. We should be what everyone's modeling their actions after. That's our ask, that we move on this and then we would make some real change."
Rishe said her group requested a full congressional hearing on endometriosis to present a five-step national action plan.
Actress Rosario Dawson was also on the panel.
[Ads /]
Dawson is an executive producer for the documentary "Below the Belt", which shows real women who suffer from the painful condition, where tissue that normally lines the uterus grows on other organs.
She, too, is personally affected by endometriosis.
The documentary features Rishe and other women who say they were dismissed, discounted, disbelieved, and often, misdiagnosed.
"On average, it takes a visit to10 different doctors before a woman is heard, or even pointed towards possibly getting a diagnosis," Rishe said. "That's just too many visits, too many doctors. Ten years for a diagnosis is too long. My life has been so affected by endometriosis. It becomes your identity after a while."
That's precisely why Rishe wrote a book called "Part of You, Not All of You".
She also runs an Instagram account called Life Above Illness, a dose of positivity for anyone in pain.