Opinion: What I learned from having my uterus removed

Chandelis Duster removed her uterus in September 2022 after years of struggling with endometriosis. In this article, she details her journey and how it has changed her perception of "womanhood."

Opinion: What I learned from having my uterus removed


A September afternoon in 2022 was the day I wrote my letter to my uterus. I wrote a letter to my uterus, praying to God for the mental and physical strength I needed to endure the next day. It would be a life-altering experience that would alter the core of who I am.

In my letter, I reflect on the pain that I'd experienced since I was nine years old when I had my first period. I thanked my uterus and expressed gratitude for its ability to function as best it could. I said that I wished more could have been done in order to prevent it from being removed. At 34, I was ready for a new chapter.

Since I was young, I have experienced painful periods that caused nausea, vomiting and bowel problems. I later learned that this condition is called endometriosis. Endometriosis, also known as "endo," is a condition in which the tissue liner of the uterus spreads and causes other problems. It can spread to the bladder, bowels, and even the lungs.

While I was still a freshman at college, I was diagnosed with the disease during laparoscopic surgery to remove an ovarian cyst. Endometriosis is not curable. However, there are treatment options, including medication and surgery.

Double whammy of pain

I had grown accustomed to the painful effects of endometriosis on my body, including chronic pelvic pain and lower back pain. But I didn't know that there was another condition that could cause such severe damage.

Twelve years after my endo-diagnosis, I was diagnosed with uterine fibroids. These non-cancerous tumors can grow to the size of melons and cause heavy bleeding, pelvic pain, and other symptoms. My symptoms of fibroids included bloating, heavy bleeding, and pain that felt like my pelvis was being pulled apart. It became more difficult to do simple tasks like sitting in a seat.

My doctors first found two small fibroids about the size of peas. They grew quickly and were eventually discovered to be larger. To make it less frightening, I named them mini Dragon Balls after one of my favorite anime series.

Over the years I tried to manage fibroids and endometriosis with medication for excessive bleeding, nausea, vomiting, and strong painkillers like Percocet. I also tried changing my diet but the endometriosis continued to worsen despite my best efforts. Side effects of the medication added to my health problems. It was not only during my periods that the pain became severe.

According to the American College of Obstetricians and Gynecologists (ACOOG), heavy bleeding during a period is not normal. A woman or girl may need treatment if she changes her pad or tampon more than once every 1 to 2 hour. To stop my bleeding, I used adult diapers and slept on an Incontinence Pad to keep my bed clean at night. I also developed iron deficiency and severe anemia from excessive blood loss.

Endometriosis, uterine fibroids and other complications were two punches in a fight that I wasn't mentally, physically or emotionally prepared to win. They had a negative impact on my mental health. I was depressed and sometimes contemplated suicide. Over 25 years, my life was a living hell. I had to miss school, pay thousands in medical bills and grind through excruciating pain throughout my career. My body was ready to have a break and start over.

It was a difficult decision, but it is now time for a fresh start

It was difficult to make the difficult decision to have my uterus taken out. It was difficult to think of losing the part of me that is so deeply connected to my femininity. Therapy helped me realize that I couldn't hold on to the things that were causing me so much pain. To live the life I desired, I had no choice but to let go how society defines womanhood.

Although I was open to the idea of motherhood before my uterus was removed, it wasn't something that I felt strongly about. Despite my current health, I believed that I would one day be able to have a biological baby. In 2021, I requested and received fertility testing results. They were shocking: I had less eggs than the average number for a woman my ages.

My uterus was surgically removed by robot-assisted laparoscopy on September 21, 2022. This happened exactly one year later. My fallopian tubes were also removed by the doctors during the procedure, but I decided to keep my ovaries as well as my cervix. My pelvic area was also cleaned of scar tissue and endometriosis from previous surgeries.

I had to endure many complications over the next days and multiple doctor visits. However, each day was better and I continued to take daily walks and rest as my body healed.

At last, relief

Six months later, my health is better than it was when I was young. It is difficult for me to admit that I used to have fibroids. Although the surgery wasn't a cure, it has helped me win a significant battle for my health and my quality of my life.

I have lived with my pain for many years. Family members often said that painful periods "run in the family," and I was forced to live with my pain. As a Black woman, this perception that I should just get through it was particularly difficult. Black women who seek treatment for conditions such as mine can sometimes find it difficult to get proper care. This is due to the disparities in healthcare and lack of trust Black women have in a system that wasn't designed with them in mind.

In the hope that young girls and women of color will not be left in the dark about their struggle with fibroids and endometriosis, I have made it clear.

Virginia HOPE is a support group for women with endometriosis. I founded it and have heard many similar stories. Worldwide EndoMarch and other support groups provided me with guidance, as well as a safe place to share my suffering. You can decide whether you want to have your uterus or other reproductive organs removed. But you should be empowered to make the best decisions for your health and not follow what others say. You are your best advocate. Ask questions, voice your opinion and find the best treatment for you.

It's not just a problem for women's health

Because endometriosis is a condition that affects women, and both fibroids and endometriosis have been reported in men, it is important to ensure that treatment and outreach for these conditions are gender-differenced.

These conditions should not be viewed as a problem only for women. They can affect anyone, even medical professionals. Endometriosis Foundation of America (The White Dress Project) has begun to educate youth about fibroids. To make it easier for people with both conditions to access additional care, there should be greater financial support for those who can't afford it.

Our society is too focused on telling girls and women what to do with their bodies. We need to have more conversations about and access resources for basic solutions on how we can properly treat and heal our pain.