It's official: March 7 is the very first Endometriosis Awareness Day in Oregon. Local endo activists Elle Hurley and Madelyn Hurst proudly display their copies of their declaration signed by Governor Kate Brown and say that it's a long time coming.
"Endometriosis is an 'invisible illness' but that doesn't make it any less painful or isolating," says Elle Hurley. "Roughly 1 in 10 women have endo, and many of them don't realize there's a medical explanation for their chronic pain, fatigue, and infertility. As far as I know, there's no study available now that even mentions the experience of trans and nonbinary folx when it comes to this disease. There's so much work to do. By declaring March 7 Endo Awareness Day and by lighting the Woodburn Bridge yellow from February 28-March 6, we're telling all of the people with endometriosis in Oregon and beyond that they are not alone."
Endometriosis is a serious illness that causes many sufferers to miss out on important parts of life like school, work, and social events. Endo occurs when tissue similar to the inner lining of the uterus grows in other parts of the body. It takes an average of 7-10 years to be diagnosed, but the disease usually begins in adolescence or young adulthood. Often, this leads to years of guessing, misdiagnosis, and pain before the right provider is able to make a diagnosis. The illness cannot be cured, but treatment options can improve quality of life.
Stigma about menstrual and sexual health impact the way endometriosis is discussed.
"Patients often find it hard to get accurate information about their symptoms," Elle said of the diagnostic process. "In our culture, it's pretty common to avoid more traditionally 'taboo' topics like periods and sex, but if we're not able to connect with other people and share our experiences, it will take a long time for us to realize that our symptoms of pain and fatigue aren't normal."
The impacts of endo on everyday life are widespread. Endometriosis, like all chronic illnesses, can be isolating and can lead to mental health side effects like anxiety and depression. A 2019 BBC study estimated that up to half of all endometriosis sufferers contemplate suicide. Additionally, the incorrect belief that white women are more prone to developing the disease than any other population negatively impacts the treatment that BIPOC, trans, and non-binary people receive.
Elle encourages folks suffering from endometriosis symptoms in Oregon to consult their providers - and to speak out about their experiences. "Isolation thrives when we stay silent. It's an act of bravery to ask for help, and personally, I think people living with invisible chronic pain are some of the bravest in the world."
If you would like more resources, visit EndoFound.org, endoblack.org, or endoqueer.com. To contact Elle directly about Oregon-specific endometriosis awareness events and activities, email oregonendometriosis@gmail.com.
