Medical gaslighting is unfortunately something that many women have experienced, especially when it comes to reproductive health. A survey by the Women's Health Network found that 45% of women felt they had experienced medical gaslighting. And in a study published in the Journal of Medical Ethics, 71% of women reported experiencing dismissal of their pain by healthcare providers. So, if you’ve ever been led to believe that your symptoms were ‘all in your head,’ you are certainly not alone.
About two years ago, I started experiencing sharp abdominal pain that would come and go at seemingly random times. Some “episodes” would be worse than others, but it was always noticeable. As the pain became more and more consistent, I decided to make an appointment with a gynecologist.
Almost immediately, I felt dismissed by the doctor.
I was told that because of my age (I was 23 at the time), the chances of anything being wrong were extremely slim. She did a pelvic exam, said everything looked normal, and sent me off saying I was just experiencing symptoms of ovulation. That explanation didn’t sit right with me — especially since I had been noticing the discomfort at all times throughout my cycle, not just during ovulation. That’s when I started tracking the pain. Could it be stress? A gluten intolerance? I wanted to see if there was anything specific I could trace it back to, so I wrote a detailed list on my phone of everything going on in my life each time the pain would strike.
Still, I was unable to find any connection or recurring theme. Deep in my gut, I had a feeling something bigger was going on; I just didn’t have the tools on my own to find out what.
It was also in the back of my mind that my Grandma beat ovarian cancer when she was in her 50’s. Growing up, my mom always reminded me to be in tune with my body, especially since ovarian cancer is known as the “silent killer” because of its lack of effective screening tests and rapid progression.
During this time I did my best to continue with my life, but I couldn’t help but feel an overwhelming sense of fear every time I felt the pain. It started happening more frequently, and I also began experiencing unusual bloating.
After a long trip down a Google rabbit hole, I learned that most ovarian cancer symptoms are very hard to detect and can be tied to a wide range of other issues — abdominal pain, back pain, bloating, feeling full when eating, and more. I had almost every symptom on the list.
Knowing that most ovarian cancers are detected through an ultrasound and bloodwork, I decided to get a second opinion from a different gynecologist in my area. After expressing my concerns and advocating for myself, I left there with a sense of confidence and hope that I was finally going to get some answers.
What happened next changed my life forever.
My first ultrasound showed a mass on my right ovary, with a note reading, “referral to an oncologist recommended.” Questions immediately started flooding my mind: Do I have cancer? Will I need any sort of treatment? What if my whole ovary has to come out? I was terrified; and yet, the news was also strangely validating.
The next few weeks were a total blur. I saw an oncologist to discuss next steps, which were surgery to remove my entire right ovary and fallopian tube and a biopsy of the mass and the surrounding tissue to make sure the cells hadn’t spread. And as much as I was dreading it, I also felt oddly gross and uncomfortable living my life with a lemon-sized ovarian tumor inside of me. All I could think about was how I wanted my ovary out as soon as possible.
After several long months of living in the unknown, I finally got the biopsy results back and discovered that the mass was a Stage 1 Borderline Tumor. It was not benign, but fortunately, it wasn’t yet malignant. Any potentially cancerous cells had left my body with my ovary. I felt an overwhelming sense of relief that it was still borderline, but also felt proud of myself for taking initiative and fighting for answers before this turned into something worse.
I can’t help but think about what could have happened if I had let this go on without getting a second opinion and fighting for that ultrasound.
I’ve since realized that there is a huge gap in education when it comes to women’s health issues — reproductive cancers being towards the top of the list. And in sharing my story, I hope to share a few lessons learned during my ovarian cancer scare with other women:
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Know your risks for hereditary cancers: This is the easiest way to be vigilant and catch cancer early. In fact, scientists estimate that up to 10% of cancers are associated with an inherited faulty gene.
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Don’t be afraid to get a second, or even third, opinion: There aren’t many women in my life who don’t have a story about medical gaslighting. But it isn’t always the fault of doctors; rather, it’s the result of a broken healthcare system. It’s important to fix the system first, so we’re incentivizing keeping people well vs. seeing as many sick people as possible.
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Be diligent when it comes to your preventative health, and know the warning signs: Did you know that by the time most patients see a doctor about a potential ovarian cancer diagnosis, 70-80% of them have Stage III or IV cancer? A tissue biopsy, which is invasive and painful, is currently the only way to officially diagnose ovarian cancer. And while I’m thrilled to see companies like AOA Dx innovating in the ovarian cancer space through a blood test that detects early-stage ovarian cancer, I hope to see much more of this life-saving innovation in 2024.
Lastly, as always, if you believe something may be wrong don’t hesitate to ask your healthcare provider for further testing. Your life could depend on it.
Jacqueline Romero is the Operations Associate at Rescripted.