A broken system, silent suffering, and how self advocacy saved me

I was only 10 years old when severe chronic pain took hold of me and decided to never let go.

I had unbearable periods, so much so that I would schedule my entire life around my menstrual cycle. I wouldn’t go on school trips, I wouldn’t hang out with friends after school, and every night was a struggle to get my homework done. The first few times I went to the doctor, they reassured me that nothing was “seriously wrong” and simply prescribed me a high dose of NSAIDs (NSAIDs stands for NonSteroidal Anti-Inflammatory Drugs. I was specifically on a high dose of naproxen).

The NSAIDS barely made a dent in my pain.

Being young and frustrated that my pain medication wasn’t working, I eventually ended up overusing the pain medication prescribed to me, in hopes that taking a larger dose would help reduce my suffering. As a result of my desperate overconsumption of NSAIDS, I eventually developed gastrointestinal issues from them, including acid reflux and severe stomach ulcers. Once I had developed stomach ulcers, I could no longer use any oral pain medication, leading to me having to battle both the pain of my stomach ulcers and the pain of my period at full strength, with no possible avenue of relief. By the time I hit high school, the debilitating pain that I only felt during my ten-day periods started to extend to the weeks before and after my period, leading to me being in constant pain at all times. Even stopping my periods completely (by taking a daily dose of norethindrone) did not stop the pain at all. My quality of life continued to decline- I was missing many days of school, I was barely able to concentrate, and I simply had to go about my day, pretending to be alright, because I had no doctor’s note affirming my claims of pain; therefore, I was not eligible for accommodations.

I continued to visit doctor after doctor after doctor. My subsequent appointments went no better than my initial ones, and I ended up with similar responses. Throughout my trials and tribulations, every doctor I visited and listed my symptoms to maintain their stance that there was “nothing seriously wrong” and that the only treatment plans available to me were “NSAIDS” and “birth control,” both of which were not working for me.

At this point, after having suffered from chronic pain for the past five years and being told that I was “perfectly fine,” my fifteen-year-old self realized that simply going to doctors and expecting them to help was not enough. I was going to have to help myself. I started to do my own research on my symptoms using the internet, and I shortlisted possible conditions that I could have and possible tests that doctors could run on me. I had a new fire burning inside of me; I was determined to find the cause of my pain. I visited more gynecologists and advocated for myself at every appointment, urging doctors to take my situation seriously, and calling them out when they didn’t. Throughout my time advocating for myself, it took an additional two years of visiting doctors and presenting my case to them over and over before finally, at seventeen years old, I met one doctor willing to hear me out. Under the care of this physician, I was finally diagnosed with endometriosis and the physician offered to perform a laparoscopy to remove my endometrial adhesions.

I accepted.‍

Endometriosis is a debilitating, underdiagnosed condition, despite being estimated to be present in seven to ten percent of women. It takes an average of ten years to be diagnosed with endometriosis after the onset of symptoms, mainly because many doctors are quick to dismiss a female patient’s symptoms, and also due to the fact that endometriosis is under-researched.

It is a sad reality that if a woman presents to the doctor’s office with the same condition as a man, she is less likely to receive the same evidence-based care. From studies and journal articles, to personal anecdotes, it has been well and widely documented that women are more likely to be accused of “faking pain” or “exaggerating symptoms” and have higher odds of being sent home from hospitals and doctor’s offices without a proper evaluation of their symptoms. This practice can leave women without proper diagnoses for years, and can even be fatal.

In my case, despite presenting symptoms of severe abdominal pain since the age of ten, it took seven years of constantly visiting doctors, developing severe stomach ulcers due to my excessive use of NSAID medication, and pestering doctors endlessly before I finally met one doctor willing to hear me out.

This does not have to be our reality.

In order to combat gender bias, we need to understand its roots. The truth is that in medical science, we inherently know less about the female body compared to the male body because of the exclusion of women from the majority of past clinical trials. Because of this inequity, women are often misdiagnosed and brushed aside when they don’t present symptoms the same way men do. Because of this lack of information, physicians may be less likely to know what condition a woman may have/ be suffering from upon learning about her symptoms, and, as a result, are more likely to accuse women of being “hypochondriacs” or “emotional/dramatic” when they don’t know what’s going on.

I believe that the best way to work towards eradicating gender bias is to raise awareness that gender bias is a real problem in the medical community. Many physicians aren’t even aware that they are discriminating based on gender; it’s a subconscious bias that they need to be conscious of in order to change. Awareness of this issue will lead to improved education in medical schools, as well as make the general public more aware of the problem so they can recognize it when it occurs to them or a loved one. Patients sticking up for themselves and holding doctors and other medical professionals accountable is crucial to the process of combating gender bias. By sharing my story, I hope other young girls and women are encouraged to stand up for themselves at medical practices. Although my journey towards getting taken seriously was harrowing and long, due to a combination of my self-advocacy efforts and some luck, I was eventually able to get help—an opportunity that many women across the nation never get. While the road to combating gender bias may not be easy, it is critical to developing a happier, more equal society.