The week of April 23rd, through the 29th was national Infertility Awareness Week. In America, one of the leading causes of infertility is endometriosis. More generally, endometriosis affects nearly 1 in 10 American folks with uteresus, occurring when cells similar to those that line the uterus are found in other tissues of the body. Endometriosis can be found in other organs like the pelvis, rectum and bladder, but also can be found in the heart and lungs. Yet often it still seems like it’s a rare condition. When a doctor first told me that she thought I had endometriosis, I had no clue as to what that meant.. Moreover, when communicating my diagnosis with friends, family, and others, many of them had also never heard of the condition before. I attribute a lot of this silence surrounding this disease to society’s inability to view these parts of our body as anything but sexual. For example, one night I was at home talking to a family friend. In the middle of the conversation, I began to cramp, and probably made a face or held my hand to my abdomen.
“Are you okay?” The person asked me.
“Yeah” I said “it’s just this chronic condition I’m dealing with”
“Oh what is it?” They asked
“Endometriosis” I said.
I then proceeded to explain what endometriosis was. However, the second I mentioned the word uterus, the person was like “omigosh I can’t think of you that way.”
“What way?”
“I’ve known you since you were little, I just can’t hear about your uterus.”
I realized that to this person, my uterus in itself was somehow a taboo topic. I find this extremely problematic. If I had Crohn’s disease would the person have reacted the same way? Ditto for arthritis or any other type of chronic pain syndrome that didn’t involve my “lady parts.”
In our society, talking about our sexual and reproductive health is stigmatized, especially if you are assigned female at birth. We are always taught not to talk about our periods. We hide tampons in our boots, shirt sleeves, and what have you. We treat an entirely normal biological process as something that is “improper.” But it shouldn’t be this way. The first sign that I had that something was awry was when I was 12 and realized that I had significantly more pain during my period than did the other girls in my class. As I got older I realized that what I was experiencing was abnormal, yet neither I nor my parents had any clue that my symptoms were a result of a chronic illness.
Periods are not supposed to be all that painful. Yet we have this idea in our society that period pain is a normal part of life. However, having period pain that interferes in your daily life should not be treated as normal. Period pain should not keep you out of school or work. The bleeding should not make you so fatigued that you need 12 hours of sleep. However, when those of us who aren’t cis-gendered men speak up about what is wrong with our bodies, we often receive misinformation. For example, I was always told that having a period was necessary. However, in the majority of cases this is not true. Especially if you have endo. If we want to have open and honest conversations about endo, we first have to have open and honest conversations about our periods. We have to understand what falls within and outside of the realm of “normal.”
Talking about periods shouldn’t be hard. Half the population gets them, yet during my health class I don’t remember much discussion about endometriosis, or other conditions like Polycystic ovarian syndrome (PCOS), and fibroids. We didn’t talk about bleeding disorders, or anything like that. Had I had the language then to express what was going on in my body, perhaps I and my family would have had a better understanding of what to do. Now I am 19, I have endometriosis in many parts of my body, and on the average day I have some pain. Having had the language and the knowledge at a much earlier age might have been able to prevent the spread of the disease.
However, even though talking about our periods is important, it won’t solve the problem of missed and under diagnosis. According to the American College of Obstetricians and Gynecologists (ACOG), the average woman waits between 3-11 years from the first onset of symptoms until receiving the final diagnosis of endometriosis. Moreover, receiving a diagnosis comes even later for black women, who are frequently misdiagnosed with Pelvic Inflammatory Disorder (PID). Moreover African Americans are systemically undertreated for pain, than are their white counterparts. Many women with the condition, such as myself, have been dismissed by doctors. When I went to the emergency room in severe period pain, I was told to “take ibuprofen” as if I couldn’t have done that myself. Clearly, many healthcare providers are uneducated about this disease. We like to think of medicine as a purely scientific field, but health care practitioners don’t live in a vacuum. Rather, they exist in the same complicated and messy world as we do and aren’t immune to bias or prejudice. My diagnosis and access to treatment were delayed because I had doctors who believed that periods should be painful. Moreover, I often find that healthcare providers are uneducated about the disease. As a child, I was in my school’s nurse’s office every time I got my period. Not one time did the nurse question as to whether this could be indicative of something larger. Even more recently, I went to an urgent care clinic and wound up explaining endometriosis to the Physician’s assistant. I don’t blame individual healthcare providers for their ignorance, but rather the underlying biases in medical training that lead to this lack of understanding about a highly common disease.
Since last week was National Infertility Awareness Week, and since endometriosis is one of the leading causes of infertility, it’s a good time to talk about this excruciatingly painful disease. Infertility is an issue we all should care about. Currently only sixteen states mandate insurance coverage for infertility treatment; therefore, if you are either uninsured or reside in a state that doesn’t mandate coverage, you will likely have to pay all of the costs out of pocket. This means that if a member of a marginalized group with less economic resources experiences infertility they may not have the option to have children. To me, this is another form of eugenics where those with money and access to care can reproduce, and those that lack these resources cannot. One of the ways to prevent infertility in the first place is to remove the barriers to endometriosis care. This can only be accomplished by addressing the systemic sexism, racism, ableism and other forms of prejudice that are ubiquitous in both our society and unfortunately in our medical system. While I am grateful to both my medical providers, and to all healthcare workers who are fighting on the frontlines of the Covid-19 pandemic, we cannot ignore the fact that this bias exists, and that it causes real harm. By lowering the barriers to early endometriosis diagnosis, cutting the disease out, and never letting it grow to the point where it causes infertility, more people will have the right to choose whether they want to have a child or not. There may not be a cure for endometriosis, but by raising our collective voices and talking about our bodies, we can help raise awareness for this condition.