I got diagnosed with endometriosis in November of 2023, at the age of 25, after a year of doctors not believing me. I understand that I was lucky to only experience a year of medical gaslighting, compared to other individuals, but it was still the hardest year of my life. I first got my period when I was 12. They were always super heavy and unpredictable. I experienced uncomfortable bloating, unbearable pain, and lasted for almost 2 weeks. Nothing could help me. At 14, I begged my mom to let me go on birth control and when she finally agreed, my APRN put me on an estrogen-based birth control (which I now know is like the worst kind to be on when you have endo!) Instead of having a medication that was going to help, it was inadvertently making it worse.
Once I became sexually active, my pain increased -- words cannot describe the feeling of being torn apart from the inside when I had sex. I thought it was just part of the female experience and thought nothing of it. After all, when I spoke to doctors about it, they said it was "just because of my period."
Endometriosis isn’t present on either side of my family. It hadn’t even been on my radar to test for it. I continued taking birth control, having extreme pain and unexplainable cramps, until 2 years ago. In November of 2022, I started having debilitating gut health issues. I developed new food intolerances that I hadn’t struggled with, started painfully bloating to the point of looking pregnant, lived day in and day out with extreme nausea and other heartburn related issues. In 3 months, from January to March, I had lost 30 pounds due to the onslaught of these new symptoms. The weight loss was triggering in of itself as someone who danced her whole life and struggled with body image. I grew accustomed to being the same weight I was when I was twelve and rejoiced in being a size zero. I fought tooth and nail to see a GI — they didn’t see me until May. Until then, my PCP was prescribing medication after medication to manage my symptoms. Again, endometriosis never crossed their minds. From sunup to sun down, I was living off anti-nausea medication, constantly in pain, and feeling so defeated.
Come May, my GI suggested I try a different probiotic, begin the low-FODMAP diet, and take fiber supplements. He was convinced this treatment plan would work. Spoiler alert: it didn't help. He wouldn’t see me again until October at the earliest, but I could get an endoscopy/colonoscopy in July if I felt that my symptoms were continuing -- only if I felt like "I needed it." He was convinced nothing was wrong with me and that my pain was “just because of my period.” He even went as far to say that my symptoms could all be psychosomatic because of my history with mental illness.
I listened to a podcast in June where the host spoke to a nurse and female fertility specialist about her endo diagnosis, which directly mirrored what I had been going through. The guest spoke about gut health issues, weight loss, and new food intolerances. Curious, I called my OBGYN. She could see me in August, and then the process started to see if I potentially had endo. After several tests and ultrasounds, she decided I would be a strong excision surgery candidate.
Prior to my excision surgery, I had seen a naturopathic doctor to see if they had any alternatives to treating my gut health issues. During my first few visits and rounds of blood work, it was determined that I also had a bacterial overgrowth in my stomach as a result of all the medications different doctors put me on to “treat” my symptoms. Unknowingly, the infection I had was causing my undiagnosed endometriosis to flare-up, adding to the pain I was experiencing. I had my first excision surgery in November of 2023, where it was confirmed that I had endometriosis. My lesions were so far back on my uterus they were almost undetectable by the scope, but they were there.
After the surgery when she told me it was confirmed endo, I felt so relieved that I listened to myself and advocated for my health, but it caused several new fears to come in. Would I be able to have children? Would my lesions come back? What if I needed a total hysterectomy down the road?
Post-op I struggled with the healing process. I work out almost every day, teach dance, and lead workout classes. I’m a very active person — so not being able to engage in those activities was hard. My body was healing, and I knew it was going to take time for me to get back to where I was pre-operation. I wanted to get back to doing what I loved, what offered me solace and peace during the time of my diagnosis journey. I couldn’t walk on my own, bend over to put on socks, stand for long periods of time, wear certain pants, and even now, moving certain ways pulls on my incision sites.
I’m 2 months post-op now and while I’m still learning about my diagnosis and what it implies, I’m still struggling with pain and navigating my new body. It can be really hard to have an “invisible” illness because some people take one look at you, see that you’re healthy, and then assume that you’re overreacting. Endometriosis can't just be "fixed" by excision surgery. I have no control over when I have flare-ups. It's frustrating that so many women are ignored and gaslighted by health professionals when we have concrete symptoms.
My boyfriend, friends and family have been so supportive with my journey. It has been a nightmare trying to get doctors to believe me and my symptoms, but I’m thankful to have a confirmed diagnosis that allows me to get the best treatment. Living in Boston allows me to have access to the mecca of healthcare, but other barriers, such as insurance, limit what doctors I can see. It is unfair that there were so many hoops to jump through initially and now, even with a diagnosis, there are still more to tackle.