If you walk into almost any hospital or major health center in the United States, there will be some sort of Women’s Health Center on the directory. In some ways, these can be really good things. They allow women to access focused specialists in one convenient location, which is especially important since women often encounter doctors who doubt their pain or do not take their symptoms seriously. These kinds of areas can also be a refuge of privacy and healing for many women who are experiencing extremely traumatic medical problems or diagnoses.

However, setting aside a different part of the hospital specifically for women acts as a metaphor for the culture in which medical issues primarily faced by women are dealt with over there. They are dealt with in places that are not as visible or frankly, accessible, to everyone. When they are out of sight, and therefore out of mind, these illnesses, diseases and maladies are not acknowledged or grappled with as much as they should be in proportion to how many people they affect.

This past summer, I learned the implications of this dismissive culture the hard way. At the end of June, I was on a flight home from New York City when I began to have excruciating pain. While exiting the airplane, I collapsed in pain, and an ambulance eventually rushed me off the tarmac to the nearest hospital. After several uncomfortable ultrasounds, I was alerted that I needed to have emergency laparoscopic surgery around 2:00 AM. Once the anesthesia wore off later that day, my surgeon informed me they had diagnosed me with a chronic illness called stage IV endometriosis, as well as adenomyosis. If you’re like me or almost everyone else, you probably have no idea what endometriosis is, if you’ve even heard of it at all.

Endometriosis is a chronic illness in which endometrium, the tissue that lines the inside of the uterus, sheds but does not exit a woman’s body during menstruation. Inside of her body, it can grow outside of her uterus and spread to organs and nerves around the pelvic area (though endometrial tissue has been found as far away as the lungs). As a result, the woman may experience incapacitating pain so physically and emotionally insufferable that it dominates and controls almost every corner of her life: career, social life, sleep, relationships, sexual activity, diet and hobbies.

Though endo is incurable, it is highly treatable. The problem is that it is so rarely treated in a timely manner because it is so often ignored or misdiagnosed by doctors who lack the education about women’s health and endometriosis specifically. Because of endo’s variety of symptoms, women may be diagnosed with common maladies such as appendicitis, irritable bowel syndrome, sciatic nerve pain, ruptured ovarian cysts, depression, functional pain syndrome, etc. According to the Endometriosis Foundation of America, one in 10 women and girls suffer from endo; however, the average woman is 27 years old before she is diagnosed. I suffered through this disease untreated for seven years. And I was one of the lucky ones who was diagnosed earlier than most women.

And while I was lucky to be diagnosed earlier than many, I could have been diagnosed earlier. When I was 13, I was rushed to the hospital after collapsing in pain at home. Barely conscious, I endured several ultrasounds and eventually, an appendectomy (removal of my appendix). Out of curiosity, my mom recently requested and reviewed my records from that surgery. The notes and images indicate signs of endometriosis that were not heeded. Though it is almost impossible now to know if I truly had appendicitis or the doctors misdiagnosed my endometriosis, I know my body and I remember that pain. It was the same pain I have experienced for seven years, including the time I collapsed after exiting an airplane and had the emergency surgery that finally discovered my endometriosis.

I am not a person who wishes to share personal information, especially sensitive medical information, with people I do not know and trust deeply. But maybe if I had heard about this illness before, I could have brought my suspicions to my doctor. I might have been diagnosed earlier, and I might have been able to receive treatment and limited the amount of suffering and extreme pain I experienced as a result of endo.

There are probably many reasons why I had never heard of this illness before, but I think that the disregard for and stigma surrounding issues primarily faced by women is chief among them. When we advise young girls to hide their sanitary pads and tampons in a bag or pouch in public or make noises and faces indicating feelings of being grossed out at the mention of her period, we are cultivating a culture of shame around her natural biological functions. When we tell women and girls that intense pain during their period is normal, we are reinforcing false narratives and information about women’s health and wellness. And when we chastise them for being overdramatic about their pain or any symptoms they are experiencing, we are delaying their access to an accurate diagnosis and effective treatment.

I am not making the case to eliminate designated areas of health centers dedicated to serving women’s medical needs. In fact, I think they should probably be expanded and given more funding and resources so that more women and children are able to have access to all of the wonderful services they provide.

I simply believe we—you and me— all need to start having more conversations about issues women deal with, especially those that are health-related. We need more men to lean in, instead of detach and stop listening, to conversations about women and their health. As women, we also need to be more open and louder about our health and how it affects not only us but also how we are able to interact with the world and how the world can and should be interacting with us.

I hope that by sharing my story and subsequent health journey, I am able to bring some light to a vast world filled with matters women have been dealing with in private that is desperate for some illumination. I invite and encourage you to share your health process, too. Share with your family. Share with your friends. Share with the world.

Marisa Wright can be reached at marisadw@umich.edu.

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