Learning to Be My Own Advocate as a Woman Battling Chronic Pelvic Pain

Women’s chronic pelvic pain is a frequent topic of conversation among women, but we rarely see it discussed in the media. It’s a personal health issue that I felt awkward and even embarrassed to talk about with anyone outside of my immediate family and friend group for the longest time.

My pain, along with a variety of other health difficulties, has frequently been shot down by doctors, many of whom believed it to be anxiety manifesting physically or even just hypochondria — which I guess was the nicest way of saying that it was all in my head.

In 2018, during my senior year of college, I finally found a few wonderful doctors who figured out the cause of pretty much all but one thing: my horrible periods and the debilitating pelvic pain which accompanied them.

From a young age, my period had been irregular. It was so heavy and painful that I’d call my mom, begging to leave school early because I could barely walk, and even speaking and breathing felt difficult at times. My pediatrician suggested that I simply take ibuprofen for my pain and wait a couple of years for my body to regulate itself — but it never did.

Later on in college, fevers, chills, and excruciating pain beyond anything I had ever experienced stole about five to 10 days from me once, sometimes twice a month. Nothing about my body had been healthy for a long time at this point, but I knew in my gut that this was not normal, nor was it OK in the slightest.

When googling my symptoms (as one does) I realized I could have endometriosis. Thoughts of the condition actually passed my mind quite frequently, as my mom has it, and it’s believed to be genetic. Endometriosis causes the tissue that normally lines the uterus to grow in other areas of the body. While the most common symptoms are menstrual irregularities and pain, its ill effects can disrupt one’s life in a variety of ways beyond physical health. And although it’s a chronic and commonly painful condition, it takes, on average, eight to 10 years for a diagnosis to be made in the U.S.

Over the course of four years, I visited five gynecologists: the first four told me that my experience was common and that over-the-counter pain medications were my only option past birth control. But as someone who experiences chronic migraines, hormonal birth control is a bit tricky  — it puts me at a higher risk of stroke. I left each visit feeling defeated and even lower than the last, and I began to wonder if this pain would define the rest of my life.

Toward the end of college, I’d lost most of my trust in Western medicine and finally just started to accept the reality of my pain without any explanation for it. Having dealt with health issues that Western medicine couldn’t seem to help, I found much relief in Ayurvedic and homeopathic remedies. A mindful diet including healing foods, such as ginger and turmeric, and the addition of magnesium supplements to my daily routine made everything just a bit more manageable.

But when my mom suggested that I see her gynecologist, whom she had recently started seeing, some part of me became hopeful again. At that point, I figured it couldn’t hurt to relay my symptoms just one more time. So, I made an appointment, bracing myself for the possibility of being let down again. But to my surprise, within five minutes of describing my symptoms, her doctor diagnosed me with endometriosis and suspected adenomyosis. Although endometriosis can’t be confirmed 100 percent without an exploratory laparoscopy, she was confident in her diagnosis because it can be genetic — and I checked off every single textbook symptom. And before I left, we’d already made a game plan to lessen my symptoms, starting with an IUD.

A weight was lifted off my shoulders that day. For the first time in a long time, a happier future was in sight; I no longer needed to carry the burden of an undiagnosed illness.

I realize I am one of the lucky ones — that my journey was significantly shorter than most. When doctors told me that my experience was normal, they weren’t really wrong; according to womenshealth.gov, about 11 percent of the U.S. population has endometriosis or other pelvic conditions. That’s 10 percent of women who spend about 10 years of their lives heartbroken and in fear of a painful future.

In a country where hysteria once was the default diagnosis for women’s pain and discomfort, the current reality of female reproductive rights and healthcare comes without surprise to me. Far too often, women’s needs are shut down or disregarded by doctors. Not only are we discredited by years of the patriarchal ideal, but we are shamed into keeping things like this on the down-low. Whether it be hiding a tampon up our sleeve on the way to the bathroom or trooping through, day after day, with debilitating pelvic pain, women are often taught to set their own needs aside for the comfort of others.

There are multiple women in my life who have had similar experiences to mine; women’s health is a feminist issue for which we mustn’t stop advocating. If I, like many other women, hadn’t kept fighting for an answer, I’d still be carrying the burden of my pain with me wherever I go.

If this experience has taught me one thing, it’s that I am stronger than I’d ever imagined. Advocating for my body is worth it, and I’ll continue to do so for both myself and others until the diagnosis and treatment of women’s chronic pain is made a priority.

Sources:
https://www.womenshealth.gov/a-z-topics/endometriosis