Endometriosis: My Long awaited Diagnosis

I let fear stop me from getting the help I needed when it came to my health, so when I noticed changes in my body in 2016, I was lead to believe that everything I was experiencing was normal. I was 26 years old when my cycle began changing, dramatically - it became irregular, I was wearing about 3-4 pads at a time do to heavy bleeding, and some days the pain was so unbearable, I couldn’t even get out of bed. At the time, my doctor equated this to stress, and yet, I couldn’t recall living a “stressful” life - I was young, working full-time, and trying to enjoy life as much as possible, and yet my cycle seemed to have other plans. However, things would continue to go downhill, and the pain I simply felt during my cycle would become an everyday thing, sending me on a downward spiral of over the counter medication, and a search for answers as to what was happening to me.

In November of 2019, I started experiencing excruciating pain on the lower left side of my stomach - I figured that if I took enough ibuprofen, the pain would magically go away on its own.

Instead, it got worse; did I say anything? No. Why? Well, when I did speak up, I was met with uncertainty and gas lighting - “it’s normal” …. “these things happen” …. or my favorite, “it will go away on it’s own.”

Because Black women have been conditioned not to complain, we carry the burdens of so many and simply say nothing. The pain became unbearable.

So much to the point where I could no longer sleep, and I was taking an upwards of 3,200 mg of ibuprofen a day, just to manage. You see, I had this immense fear of going to the doctor; perhaps it was because when I had gone previously, the focus was always on my weight, and never on the pain I experienced. I was ashamed … embarrassed that being overweight meant that all of my problems would merely go away, so long as I lost 100 pounds. It was never a friendly conversation - it was scolding, condescending, and left me feeling alone. So, instead of getting help, I self medicated.

One day, I couldn’t take the pain any longer.

After I mustered up the courage to go, I was shuffled from doctor to doctor before given a cat scan and told that I had a 6cm cyst on my left ovary but it would go away, “once I lost weight.” I was then referred to a new gynecologist who immediately insisted that bariatric surgery was my only option and that even though it was a 6cm cyst, it would “dissolve’ as I lost weight. I began discussing how my cycles had gotten extremely draining and uncomfortable, even to the point where I was wearing 4 pads at a time due to heavy bleeding. My cycles were unbearable and, literally, left me bedridden for days. I was light headed, nauseous, exhausted, pale, and could barely keep down food. All of this was deemed, “normal,” or simply overlooked because my size was the only noticeable issue during the time.

This was the first time I had an Endometrial biopsy - I know, such a scary word. Your mind goes all over the place. Do I have cancer? Am I going to die? As I lay there helplessly, I trembled with fear, praying that the pain would soon be over. The doctor made no effort to comfort me or try to “talk me down” during that time. Instead, she told me that I was SO overweight, that the biopsy was extremely hard for her to do. After she finished and left the room, I laid on the table and cried for 20 minutes before getting dressed and leaving the doctor’s office in complete shame.

I couldn’t stand up for myself …. I couldn’t let this woman know that my weight was not an issue, and that she chose to ignore my pain because she was disgusted by my appearance. It was the longest 2 weeks of my life, all for me to get a phone call saying everything was negative, thank God, but that I should, immediately, follow up with a weight loss surgeon before returning for my pap in 3-5 years.

3-5 years.

No regard for my pain, no concern for the heavy bleeding (that would later land me in the hospital), and no true follow up.

I continued to self-medicate with ibuprofen for months and go from doctor to doctor with no true help. It was the same “advice” every time: my weight was the issue, not the insufferable cycles and the pain in between. Little did I know that I would not get a true diagnosis until 2021, when I was officially diagnosed with Endometriosis. I was severely anemic and would have to begin getting iron infusions, in dire need of a blood transfusion, and unaware of the damage years of ibuprofen had wreaked havoc all over my body. In addition, it was discovered that I had several fibroids protruding against my back and stomach that only became more inflamed and aided to heavier bleeding during my cycle.

I realized that I could no longer continue to take copious amounts of medicine, and it was time to stand up for myself - something I had never truly done before.

Did it take forever? Yes. Was I afraid? Also yes, extremely. I knew that the only way I could truly get help was to demand that I be treated as any other patient, and that my weight could NOT be the sole focus. When I felt that I was not receiving that attention, I would ask for my file to be documented. Interestingly enough, that worked.

Finding a doctor who looked past my weight and continued to work with me until I got a proper diagnosis truly saved my life. I think about the nights I spent writhing in pain, forcing myself to take medication, and spending hours in the bathroom trying to get some type of relief. I think about the times I bled so heavily that I could barely stand without my vision blurring and I would be terrified that I would pass out and it would be hours before anybody found me. Or maybe it was the times where I would be telling a doctor about my extreme mood swings, sadness, and feelings of hopelessness and they simply advised that being overweight would cause stress and feelings of inadequacy.

Everyday, I’m hearing more stories about Black and Brown women experiencing the same symptoms, some even worse than mine, and it pains me to think that our cries are being unheard. I spent years living in shame, and I can no longer sit by without sharing my story. I am urging Black women to get the help they need, and if one doctor won’t listen, go to another immediately. I spent years searching for my voice, and I wish I would’ve found it sooner, because I can only imagine how different things might have been.

Endometriosis has changed my life, but I am learning that it does not define who I am as a person. Am I still overweight? Yes, but I have worked extremely hard to heal my relationship with food and make changes in my life. I hope and pray that every woman who has ever felt unheard finds their voice.

You matter.

Your life matters.

Your health matters, and I am fighting this journey with you.