Endometriosis isn’t simply intense period cramps: It is a debilitating disease that can interrupt your day-to-day activities. However, there are still many misconceptions that the reproductive health problem isn’t as serious as it is, and Sinead Smythe learned this lesson the hard way. The U.K. woman says she was fired from her job and admitted to the emergency room over 200 times before being correctly diagnosed with endometriosis. Now, she’s trying to raise awareness for this disease that quietly affects millions of women. “I would love if people who don’t suffer [with endometriosis] understood those of us who do aren’t being dramatic — we aren’t having a ‘bad period’," Smythe tells Bustle. "We are living with an incurable, invisible chronic illness which affects almost every single aspect of our lives."
Endometriosis is caused by tissue that typically grows in your uterus growing in abnormal places, like the ovaries or fallopian tubes. When it's time for the tissue in your uterus to shed for your period, the tissue that's grown other places also sheds — only, there's no place for it to go, causing it to become painfully trapped in the body. The Endometriosis Foundation of America estimates 1 in 10 American women have the disease (and it goes largely undiagnosed), while around 176 million people are affected by endometriosis worldwide. Some of the common symptoms of endometriosis include painful periods, long periods, painful sex, nausea, fatigue, cramping, and infertility issues. It is also linked to mental health issues such as depression and anxiety. Though there is no cure for endometriosis, some people diagnosed with the reproductive health issue turn to hormonal birth control, pain medications, and surgery to treat the pain or symptoms associated with it.
Though some people paint endometriosis as a bad case of PMS, it is so much worse. “The pain can be so crippling that I cannot move from the same position, I can be rolled up in a ball for hours on end,” Smythe told The Daily Mail. She claims she lost two jobs between 2015 and 2016 due to daily pain caused by endometriosis, and her perceived unreliability by her employers. Additionally, Smythe says she visited the the emergency room over 200 times for her pelvic pain, to no avail. Eventually, after being incorrectly diagnosed and treated for pelvic inflammatory disease (PID), Smythe underwent laparoscopic surgery to finally discover that she had endometriosis.
Smythe believes endometriosis is “not taken seriously” by many doctors, and that may contribute to why the reproductive health issue often falls under the radar. “It takes the average woman over 7 years to be diagnosed [with endometriosis], which is unbelievable,” she explains to Bustle. “I really hope and pray this illness becomes more noticed. If endometriosis was labelled as a disability, it may help us educate the world, and also may help those suffering from the unknown.”
Female patients and health professionals have claimed time and time again that there is a glaring gender bias in medicine, and multiple studies have proved this perceived sexism to be real: Female patients not only have a more difficult time having their pain taken seriously, but also have a more difficult time receiving proper treatment. This gap in diagnosis and treatment seems to only get bigger when it comes to reproductive health issues like endometriosis: The National Institute for Health and Care Excellence (NICE) even released new guidelines to more effectively treat patients with endometriosis this past September — urging U.K. doctors to listen to patients, and take more precautions and measures to diagnose endometriosis.
Though much of Smythe’s tumultuous experience draining on both her physical and mental health, she hopes it will help others with the illness. Smythe has a blog where she shares posts focused of living with endometriosis and highlights other people’s journeys with endometriosis. She also posts encouraging messages on her Instagram account, and runs online support groups on Facebook. “Supporting those suffering with endometriosis is something close to my heart, and something I will always do. There’s so many of us suffering in silence,” she says. “Speaking to someone you can relate to can help massively. If we all come together, we can fight this horrendous illness.”
Smythe’s story exemplifies how our society still has a long way to go with providing equal health care to women, but also shows us the simple solution: Listen to women. Reproductive health issues are just as serious as other diseases, and should be treated as such. People living with endometriosis should not have to gamble with their health simply because of stigma and misconception.