Mother-Daughter Perspectives on Endometriosis:
Nicole and Michela
“Nicole soldiered through her pain for years, but Michela’s early diagnosis promises an easier path.”
Nicole Pearlstein, age 47, and her daughter Michela, age 16, both have endometriosis, a disorder that has a hereditary component. Nicole spent over a decade hiding her pain, never letting it cast a shadow over Michela’s childhood. But when Michela started showing symptoms of the disease, Nicole ensured that she had an early diagnosis and treatment. Today, as endometriosis advocates/activists, they use their perspectives to help others.
Michela: As I was growing up, Mom was at all of our events. She picked us up from school, she cooked dinner, we had fun – just normal stuff. Sometimes she’d say, “I don’t feel well,” and go lie down for a while, but she didn’t make a big deal of it. I didn’t know she had endometriosis.
Nicole: By the time Michela and her two brothers were born, I had already undergone ablation and hormone suppression treatment for endometriosis, as well as had nine miscarriages. With three kids, a husband, and a house, I had to work through the pain. I remember when I had to drive the kids to three different schools. The pain I had in my pelvis and down my leg while driving were just unspeakably excruciating. I would drop off the kids, go home, do housework, and cry knowing I’d have to drive again in the afternoon.
Michela: When Mom got really sick and she told me she had endometriosis, I didn’t know what that was. I knew it was serious because she had to stay in bed. Finally the doctor said she needed surgery, and that was scary. I just focused on helping her.
Nicole: The pain became debilitating, and suddenly I couldn’t hide it anymore. I was bedridden. The kids were about 15, 13, and 11 – critical, busy times in their lives. They all needed me. I felt terrible guilt, anger, and shame that I couldn’t be my best. I underwent a hysterectomy, followed soon after by two excision surgeries that totaled 11 hours. Now I’m adjusting to hormone therapy, and my pain is much less.
Michela: I was shocked to find out soon after Mom’s surgery that I had endometriosis too. I’d had mysterious abdominal pain since I was about 8 years old, and then when I got my period, I was in a lot of pain. It became so bad that I was missing school and I had to quit varsity cheerleading.
Mom and the doctor told me I had endometriosis, but I didn’t really understand. My problem didn’t seem anything like what my mother had gone through, but I knew my periods were much worse than other people experienced. I was afraid that I might have this problem all my life like Mom. The doctor said I should have surgery, but I was scared to get a needle and go under anesthesia. He encouraged me to be brave. I had excision surgery right before my 14th birthday. I’m feeling better since the surgery. I won’t have to deal with endometriosis for decades like Mom did.
Nicole: It was devastating to find out Michela had endometriosis. I was so scared she would end up like me! Hormone suppression did not work. She had generalized pain all day, every day, and she was unable to walk, function, and go to school. Our surgeon promised to get every bit of endometriosis. He operated for 4.5 hours, finding endometriosis everywhere.
After surgery, Michela’s symptoms improved, and she could return to normal life. I am very hopeful for her. Her path will be very different from mine. Proper excision can preserve fertility and quality of life, especially when endometriosis is diagnosed early. My daughter will never have to suffer in silence, and she will never be alone.
Nicole hid her pain remarkably well for someone who needed 11 hours of excision surgery, such that Michela and her siblings were oblivious to the severity of the condition. Once Michela was afflicted, they went on a mission to educate people about endometriosis in the New England area where they live and beyond. They both work at The Endometriosis Enigma: Unraveling the Mystery (www.endoenigma.com) and Endo What’s School Nurse Initiative (www.endowhat.org).