*Written by Averi Kaplowitch*
On March 25, 2013, I was sitting in my seventh grade math classroom taking the Massachusetts Comprehensive Assessment System (MCAS) exam when I felt a sudden pain in my stomach.
I asked my teacher if I could go to the bathroom and when I got there, I realized I had gotten my period for the very first time. Little did I know, the pain I felt in that classroom was something I would experience every day for the next eight years.
Just like every other girl, I get my period every month. However, I experience extremely uncomfortable cramps, constipation, bloating, nausea, mood swings, headaches and occasional acne. My pain is often unbearable and not something anyone I knew experienced.
Debilitating period pain is not normal — don’t let anyone tell you it is and don’t let any doctor convince you that such severe pain can be treated by birth control. Birth control pills mask symptoms. It won’t solve the problem. Trust me! I tried, it was an epic fail.
Months later, I started to experience pain in my legs. Whether it was walking, working out or playing sports, I felt a constant numbness and tingling in my calves.
I spent the majority of my free time in middle school and high school seeing doctor after doctor and specialist after specialist. They thought maybe there was something wrong with my nerves.
I was tested for brain tumors, muscular dystrophy, MS, iron deficiencies, kidney dysfunction, chronic pain and more. Sometimes these tests were invasive and painful.
I was told my hips were not aligned, and I needed physical therapy. Next, I saw a chiropractor for my back. The list goes on and on.
When I was 16, I saw a gynecologist for the first time. My mom and I asked my gynecologist if there was a possibility I had endometriosis. He performed an ultrasound, took more tests and determined that there was no way I had endometriosis. So, I continued to see more doctors.
I saw an orthopedic specialist at Massachusetts General Hospital where I was tested for compartment syndrome. The doctor quickly determined that I did not have compartment syndrome, but only after puncturing a nerve in my left leg, which left me on crutches for three weeks. Ever since I went to that doctor, I have had damage in my left leg.
Finally, I got an MRI on my back. The scan showed that I had a cyst on my kidney. While I was very nervous about this finding, I had hope that they might have figured out why I was experiencing such severe leg and back pain after all these years. However, when I saw a kidney specialist at Boston Children’s Hospital, they later determined the cyst was not harmful nor the cause of my debilitating pain.
Years later, I went off to college, and the pain became more severe. I had lost hope that any doctor was ever going to help me and I eventually stopped wasting my time trying to figure out what was wrong with me.
At the beginning of my sophomore year, my leg pain significantly impacted my left ankle. I went to the doctor and I was diagnosed with peroneal tendonitis in the left ankle.
Then, the COVID-19 pandemic hit. The only source of exercise I could endure was at-home workouts and walks with my family. I could barely walk a quarter of a mile without being in pain and wanting to break down.
I was devastated and truly believed I would be enduring this pain for the rest of my life.
Now that I was trapped in my house, I was determined to figure out why I have been in so much pain for so long. That’s when I saw supermodel Olivia Culpo started to share her story about endometriosis on Instagram.
I once again thought to myself, I know I am not a doctor, but I definitely have Endometriosis.
Endometriosis is a disorder where endometrial tissue grows in other places in the body outside of the uterus. Endometriosis leads to severe pain in the uterus, ovaries, and throughout the body.
My mom and I consulted with one of our family friends, Dr. Irish Orbuch, director and expert of the advanced gynecologic laparoscopy center in Los Angeles. I told her about my leg history, my migraines and my painful periods. Just by talking to her quickly over the phone, she was 75 percent sure I had endometriosis.
Dr. Orbuch was the first doctor who finally showed me that there might be a light at the end of this long, long tunnel.
Dr. Orbuch referred me to a team of people who she thought could help improve my condition.
First, I began seeing a women’s health integrative nutritionist where I learned that nutrition is key in managing endometriosis. While I always have been relatively healthy, I knew that there was always room to improve my diet.
I am now 11 weeks gluten, dairy, soy and nut-free. Let me tell you, giving up some of my favorite foods was far from easy— if you know me, you know how much I love pizza and a good chocolate cake. However, I knew that I needed to help myself, and if that meant giving up pizza, I had to give up pizza.
Since then, I have found a love for new foods. I altered my diet and noticed small improvements.
I also consulted with a surgeon—Dr. Kenny Sinervo from Atlanta, Georgia. While endometriosis can genuinely only be diagnosed by a surgical procedure, I had every classic symptom. He needed to operate in order to examine my ovaries, tubes, and uterus from different angles. He explained that the things he would be looking for are things that will not appear on a typical lab or radiology exam.
When Dr. Sinervo first told me I needed surgery, I didn’t take the news so well. I was scared and I felt alone.
My parents, roommates and friends kept reinforcing that Dr. Sinervo and Dr. Orbuch are the best in their field. Dr. Sinervo would not agree to take on my case and operate if he did not completely believe I would have some resolve. So, from that moment on, I started to have hope again.
On January 4, 2020, I traveled with my mom to Atlanta, Georgia, where Dr. Sinervo performed laparoscopic excision surgery of endometriosis.
When I got to Dr. Sinervo’s office on the morning of my surgery, I was terrified. Interestingly, I wasn’t nervous about the surgery. I was more fearful about not finding anything wrong with me and living a lifetime with chronic pain and a poor quality of life. I wasn’t sure I could handle going home with no answers, like I had so many times in the past.
Dr. Sinervo and his nurse, Wendy, were two of the most comforting medical professionals I have ever worked with — and with my history, that is a lot! They held my hand from the second they visited me in pre-op until the second I fell asleep in the operating room.
When I woke up from my surgery, the first thing I said was, “Please tell me if they found anything.” My mom responded, “Don’t you worry, they got it all.”
Dr. Sinervo diagnosed me with stage two endometriosis, and also removed my appendix.
Although I am only writing this a few weeks post-operation, I can already see and feel significant changes in my body. I finally see a shape in my ankles instead of looking at a swollen lump, my back doesn’t hurt me for the first time in six months, and I feel like I can finally breathe again.
Dr. Kenny gave me my life back!
My intention for writing this piece is not for anyone to feel bad for me or wonder, “Why haven’t I ever noticed that Averi is constantly in pain or suffering?” In fact, I was always in pain, and I rarely complained.
I am writing this story for two reasons. First, trust your body. If you know that something is wrong, keep fighting, and don’t stop fighting until you figure out what it is. I have spent hours, days, and years sitting in my room behind closed doors crying because I was in so much pain and I felt so defeated. You are your best advocate.
Second, I am here to educate you on endometriosis. Most doctors and health workers have little experience diagnosing or optimally treating endometriosis through excision surgery. I saw almost two dozen doctors over eight years, and not one doctor ever thought that endometriosis was a possibility. Even when I brought it up and reviewed my medical records, not one doctor was open to the idea until I spoke to Dr. Orbuch. Endometriosis is a very specific specialty. A pediatrician will refer you to a GYN, who are trained primarily in obstetrics and gynecology and may not know the best course of treatment. Dr. Orbuch told me she learned more about endometriosis on day one of her fellowship than she did throughout all of medical school and her residency as an OB-GYN.
I hope you can take my story and educate your friends and family on endometriosis. I know I have a long road ahead in my recovery, but I can’t wait to see the changes that take place in my body and my health over the next few months. I have hope again, and I will forever be grateful to Dr. Sinervo and Dr. Orbuch.
One thought on “My Endo Story”
I have stage 4 endometriosis and I got my surgery January 10. I’m still having extreme level 10/12 pain. It’s been 10 days since the surgery, is my pain normal?