Road to Diagnosis: Katrina Martin’s Endometriosis Story

My story of receiving an endometriosis diagnosis took eight years.

It all started in high school when I experienced pain during menstruation. In my mid-20s, the pain got worse.

My gynecologist didn’t take my discomfort very seriously. In 2001, when I was 24, she told me to take 600 milligrams of ibuprofen a few days before my period to “get ahead of the pain.” She also recommended birth control to help the pain, but because birth control gave me heart palpitations in the past, I didn’t want to do that.

I felt significantly better after cutting dairy and gluten from my diet because of a separate condition I had. But by spring 2009, I had developed a dull pain in the left side of my pelvis that grew increasingly uncomfortable. It started to feel painful to even wear my seatbelt. Scared that it was cancer, I avoided the doctor. Eventually, the pain became too unbearable, and I saw a gynecologist. 

My gynecologist performed an intravaginal ultrasound, a procedure I found so painful it led me to tears. The ultrasound revealed a cyst on my ovary that the doctor said needed to be removed right away. She wanted to book me for surgery the next week.

My head spun. I was terrified of surgery, and now I was going to have it with little time to prepare. The surgery—an ablation (where doctors burn away abnormal tissue)—lasted a few hours, and recovery took three weeks. From it, they were able to diagnose me with endometriosis. The procedure allowed my providers to identify a “chocolate cyst” inside my left ovary. Also known as an endometrioma, a chocolate cyst is a form of endometriosis that occurs inside the ovary. It gets its name because the cyst is filled with a dark brown liquid.  

Six months later, the pain returned. I saw a different doctor, hoping her bedside manner was better. It was, but she recommended the exact same treatment: ablation surgery followed by birth control. 

In February 2010, I had my second ablation. A similar-sized endometrioma had grown on my left ovary again. This surgeon also recommended birth control as a way to stop the endometriomas from regrowing. I tried it for three days, had horrible heart palpitations, and stopped the medication. 

Afterward, I went on an odyssey looking for treatment that could help. I saw many alternative healthcare providers who tried practices like Reiki and acupuncture. I also worked on the mental health aspects in therapy.

For a while, I improved. But in 2018, my pelvis started feeling uncomfortable again—this time on both sides. I tried to ignore the discomfort.

In late 2019, sudden, excruciating pain in my pelvis sent me to the emergency room. An endometrioma had burst. There wasn’t much doctors could do for me but give me pain medication and tell me to follow up with my primary care physician.

Instead, I found a gynecologist who specialized in endometriosis. Their first order of business ordering a magnetic resonance imaging (MRI) scan. The scan showed large endometriomas on both ovaries, and showed that my rectum was tethered to my uterus because of an endometriosis adhesion. 

The gynecologist enlisted the help of a gastroenterological surgeon because the situation was complicated. A long excision surgery in May 2020 revealed that I had stage 4 endometriosis that was affecting the pelvic sidewall, rectum, and bowels. I lost both fallopian tubes and my right ovary during the surgery. The surgeon saved a remnant of my left ovary, a decision I’d made beforehand. My recovery took six weeks and was quite difficult. 

By late winter 2021, I was losing mobility because of endometriosis. I couldn’t walk more than 1,000 feet without a lot of pain. I saw a foot specialist, chiropractor, and back specialist and went to physical therapy. Nothing helped. Then I read about sciatic endometriosis, which occurs when endometriosis grows around the sciatic nerve in your lower back and causes symptoms like leg pain and weakness. I knew I had to push to get answers. 

My gynecologist referred me to a surgeon, one of the few who can perform endometriosis surgery with nerve involvement. After two MRIs and a computed tomography (CT) scan, I learned I had a recurrence of endometriosis. I traveled from Vermont to Boston to have surgery in July 2021. 

During the surgery, the doctor found endometriosis near my sacral nerve—a group of nerves at the bottom of the spine that control movement of your lower body. He also cut out extensive endometriosis from my pelvis and removed what remained of my left ovary. Recovery took two and a half months, and I immediately went into menopause, meaning I no longer get my period.

It’s been nearly four years since that surgery. On the endometriosis front, things are much better. I have occasional pain, but no longer having a period has made an immense and positive impact on me. I struggle with other health conditions, but I am thankful that, for now, endometriosis has taken a back seat.