What It’s Really Like to Get a Hysterectomy

I remember before I went under, I grabbed my doctor’s hand and said, “Please don’t grab my uterus unless you absolutely need it.”

I had a hysterectomy when I was 17. My doctor removed my uterus but left my ovaries and part of my cervix. I felt better since the painful cramps started at age 13, before my first period. At 14, I collapsed in pain. That’s when doctors first suspected endometriosis, in which endometrial tissue grows outside the uterus and adheres to other organs.

Years of pain followed. I was often bedridden and unable to function. The pain was so intense that I couldn’t even think straight. After several laparoscopic surgeries, my doctor suggested surgery to remove my uterus.

The night before the operation, I was in a hotel with my mother, completely panicked. She was ready to take me home. We have compiled a list of pros and cons. Disadvantages? I couldn’t have children. Advantages? Pain free, live life, go to college. The pros outweighed the cons, but this downside was major.

I remember thinking, “Who’s going to want me if I can’t provide them with a family?” I don’t think that now, but it was the first thing that came to my mind; that I was in a genetic impasse. It wasn’t the cookie-cutter future that people think of. I know I can adopt and have other options, but I thought about the fact that I wouldn’t be able to provide for my parents with grandchildren.

Specialists in Atlanta thought I had adenomyosis, in which endometrial tissue grows into the uterine wall. After surgery, my uterus showed signs of adenomyosis and endometriosis.

In the months that followed, I still had some pain and was a little depressed, but I felt better. I was able to go to university. But by my second year, I started experiencing intense pain from endometriosis again. It was like a knife in my stomach. I had given up so much and now I was hurting again.

I learned that my endometriosis was not properly cleared. Part of it was still there, growing again. Throughout my studies, I underwent a few at-home surgeries with local specialists. I went back to school less than a week later, just to try to get through it, because I didn’t want to leave school. When I called my healthcare providers in Atlanta, they told me there was nothing else they could do and made me question myself. Am I a baby? Will I have to live with this pain forever?

Halfway through my first year of law school, I had what I call “the breakout of my life.” This sounds dramatic, but I thought I was dying. I couldn’t eat, I had no life. Never before had I been completely shaken by this surge. I knew something had to change. I studied in my bathtub and brought my heating pad to class. I had to set it so high to feel any relief that it would burn my stomach, which is now covered in scars.

I took a medical leave from law school and my health care providers in Atlanta still didn’t take me seriously. This new pain I was feeling was nothing compared to the pain I had before my hysterectomy. It was 10 times worse and it hit me like a tsunami. I was drowning. I lost so much weight and was throwing up from the pain.

After a two-year battle, I finally contacted Tamer Seckin, MD, who was also Lena Dunham’s endometriosis specialist. He changed my life with a voluntary excision operation in March 2015. He described my endometriosis as a bundle of “crumpled newspapers” and apologized to me for the seriousness of the situation. He told me that the part of my cervix that was left in place was causing problems. This just goes to show that a hysterectomy is not a cure.

It took me about two years to recover from that surgery, with injections and pelvic floor physical therapy, which was expensive. Then I finally started to rediscover part of the person I used to be.

In 2020, I was preparing for acupuncture school so I could help women with pelvic issues. I just wanted to enjoy my 30s. I was never able to live like a normal teenager. I had wonderful friends who would read to me while I was in the bathtub to ease my pain or just lie in bed and watch TV. But I missed the moments people look forward to, like school dances.

Dating isn’t that great, even though I’ve tried to put myself out there. I don’t mean when I’m in pain, it’s just annoying. I have come to peace with not being able to have children. I hope my brothers will do it so I can become an aunt. Because I still have one ovary (the other was removed while I was in college), health care providers could collect my eggs, but even going through that process—having these hormones injected into me—could send my endometriosis out of control. After having 12 surgeries between the ages of 14 and 25, this is not something I want to experience.

When I heard about Lena Dunham’s hysterectomy, my heart ached for her. I accepted this, but I’m really upset that I could have had other options or a different outcome. Hysterectomies are not always a cure, and you may experience pain throughout your life if you have endometriosis. Treatment is complex and individualized depending on the affected person.