If you told 13-year-old Jesille that after almost 7 years, she has yet to get a full confirmation diagnosis on her chronic pelvic pain, she’d probably scream in your face. I can’t blame her, even now, I’d probably still scream in your face over it. I’ve been in and out of the hospital since I was 13 years old due to my chronic pain. I vividly remember my first-ever flare-up as if it were yesterday.
I was sitting in my 7th-grade math class when suddenly I was feeling incredibly sick and in extreme pain. I had told my teacher at the time, and she sent me to the nurse’s office. Walking down the stairwell was an incredible challenge. I had to take multiple breaks, and I was convinced I was going to tumble down the stairs because of how close I was to passing out over how much pain I was in. The rest was a blur; the front office had called my mom to pick me up, and the second I got home, I began vomiting all over the place for the next hour or two.
This became a routine, once a month, when my period would near, I would get into the worst pain in my entire life, have to call out of school and spend the rest of my day lying on the floor vomiting until my body sorted itself out. My perfect attendance was ruined with me having to call out of school countless times because my body wouldn’t allow it. I was under the impression that it was normal, but my mother had always said that no woman in either her family or my father’s side ever had these issues before. It wasn’t until quarantine hit and I was extremely active on Booktwt (book Twitter) that I had one of my flare-ups, and during it, I was tweeting about it. I had multiple online mutuals at the time who had various types of disabilities, and I will never forget the day when they privately messaged me, showing concern about the pain I was talking about, saying how it sounded awfully similar to their own pain and how I should go see a doctor. So the process of going in and out of the gynecologist began, and each time I kept getting the same response, “We believe you might have endometriosis, but you’re too young to be diagnosed with it, so just use birth control to manage your pain.”
For anyone reading this who might have endured a similar ordeal knows the frustration that comes with going back and forth with the doctors to only be dismissed countless times. It’s the most tiring thing in the entire world, knowing that the estimate that it takes 7-10 years to gain a proper diagnosis isn’t just a myth but a reality. While the reasoning behind why such a long timeframe to get diagnosed is primarily due to how little research there is when it comes to the female body, particularly the pelvic region. In my experience, that had told that the only way to get a true and pure diagnosis is by performing Laparoscopic surgery, where you’ll perform small incisions to be able to visually see what’s going on with the tissues and gather samples directly from your pelvis. My gynecologist and doctors told me that with my age, it’s not fully worth performing the surgery because once they remove the tissue, it will eventually grow back and it might come back ten times more aggressive, so it’s best to perform as little surgery as possible within your lifetime.
The journey of finally getting the diagnosis is one with countless obstacles when you’re under 21, as well, since it begins to limit the type of test they can perform when you’re under 21. If you ask me the question of how I’ve been managing my pain for this long, I will be honest with you, I’m more surviving and getting by rather than thriving and conquering my pain. Those with chronic pain, whether it’s pelvic or not, know that there’s no true cure to make the pain permanently go away. There are certain treatments and medications that you can take to help make it more manageable, but it can also do so much. Especially in my own body that gains a resistant to medication after taking it consistently for a long period of time.
However, I’m still here and trying my best to win against my pain. Going through this without having a formal diagnosis, and my chart simply noting chronic pelvic pain with no other description, is hard to process. Endometriosis can especially impact someone’s hormone levels greatly, which in turn can make the concept of getting the help you need mentally more important than ever. This is why I strive to see a mental health professional, such as a therapist, to talk through your feelings of medical disappointments, because going through a long journey of not being heard can be taxing on someone’s mental health. I, myself, am someone who began going to therapy to talk through these difficult emotions that can be hard to explain to someone who might not be trained to or understand what you’re going through.
Through my pain, I’ve also found comfort and healing when I educate and talk about women’s reproductive health. Once I got to my freshman year of high school, that’s when I became more heavily involved with educating myself on the gynecology industry and highlighting the aspects that most people aren’t aware of. This followed along the lines of how abusive the gynecology industry is when it comes to experimenting on Black women and how it was men who created a lot of the technology we use today, which has yet to be properly updated.
The beauty of educating myself on the horrors and struggles that other women had to endure when it comes to gaining reproductive health treatment has made me want to become a stronger voice in the community, so reproductive justice is met. Knowing that I am not allowed in this confusing and disheartening medical world makes the loneliness that these conditions cause me to feel, lightening ever so. For everyone who’s going through something similar to what I am going through, know that you are not alone in this journey, and we will all one day beat this battle.