Black women are more likely to develop uterine fibroids and experience more severe symptoms than women in other ethnic groups.* Even though the condition is common in our community, conversations about getting diagnosed and treated are not. Chelsea VonChaz, founder of the nonprofit #HappyPeriod, is working to make sure fibroids and overall menstrual health become a regular part of discussions about Black women’s bodies.

While educating others about their bodies, VonChaz started experiencing new period symptoms that signaled her to make space to care for herself: abnormally heavy bleeding, nausea, periods lasting up to 14 days and spotting between periods. Because her mother and other women in her family had dealt with painful symptoms from uterine fibroids, she assumed fibroids were also the cause of her discomfort. Back when VonChaz first received the diagnosis, her doctor said there was no need to remove the fibroids because she could alleviate symptoms through taking birth control and changing her diet. She took their recommendations and the symptoms got better temporarily. “I managed it on my own, until I couldn’t,” she says.

In 2019, VonChaz was hospitalized due to her symptoms. “I demanded another ultrasound and exam, then consulted with physicians on my options for removal after I was told that I had more fibroids than I did during my previous exam.”

During a September 2020 appointment, VonChaz had to advocate for herself once again to make sure doctors followed through with what she wanted. “That was the catalyst for the surgery. During that visit, I was assertive and demanding for ultrasounds, and told them I would not do birth control [or] tranexamic acid and that I wanted more options,” she says. “Maybe because of the pandemic, I still had to wait for surgery scheduling, but during the wait I had consultations and was hospitalized one last time in April 2021.”

In May 2021, VonChaz had one fibroid removed with no complications. After navigating doctors’ appointments, surgery and relief from fibroids, she added more components to #HappyPeriod education programming: fibroid care and patient advocacy. VonChaz talked to 21Ninety about her experience leading up to her fibroid removal.

This interview has been edited and condensed for clarity.

On Recognizing the Symptoms

I feel like my symptoms started to shift in late 2019. Then 2020 came around, and it got worse. When I was around 25 or 26 — around the time I decided to start #HappyPeriod — I created a period journal. I would keep notes of what my period was like, what the blood looked like and the clotting. Even from my notes, I knew it was changing. I felt nauseous; I couldn’t really keep food down my first 24 hours. Friends would have to come over and make me something to eat because I couldn’t really move. It got to where my periods were longer than seven days. It was debilitating. I was bleeding like running water, which was super scary. Sometimes I would feel a clot pass, and it almost felt like birthing a jellyfish.

On Getting the Uterine Fibroids Diagnosis

I honestly just took a guess at first because there is a history of fibroids in my family. My mother is someone who experienced fibroids before and after her pregnancy with me. I’m the only child, and the main reason why is because my mother opted to have a hysterectomy because she didn’t want to deal with fibroids anymore. The same thing goes for an auntie or two. Fibroids run in my family on my mother’s side — and on my father’s side, I found out not too long ago. It wasn’t until 2016 when I was officially diagnosed with fibroids, and that just happened because I had horrible cramping.

I was told [by my OB-GYN] at that time if it’s not giving any major, crazy symptoms, or if it’s just period cramps, then it’s nothing to to worry about. Later, I had a complete shift in my health. The cramping got worse, the periods got longer. The excessive bleeding definitely started around August or September 2020. [After finding a new doctor,] I was very demanding with my new OB-GYN and the residents that she had around her. The tech told me she saw the fibroids and that there were at least four. I went to another doctor who actually counted six fibroids when he did my ultrasound.

On Talking to a Doctor

I made sure I let them know I’m not your average patient who comes in here and doesn’t know anything. I have a lot of knowledge, and I have data. My data was my period journal. I showed them it’s getting worse and worse. I made them put things on my medical record. It says “Do not give her pain meds, don’t give her ibuprofen, don’t give her fentanyl, she won’t take birth control.”

And I didn’t just get one opinion — I got three. I got one opinion from the OB-GYN that I was assigned to through my primary care physician, then I saw two doctors outside of my insurance. I didn’t make a decision to schedule my myomectomy until after those additional consultations. It’s really important for folks to understand that they have to be an advocate for their own bodies. Your body is your own home that you have complete control over.

I think a lot of us are so used to coming into these spaces feeling timid or intimidated, but you really don’t have time for that because you’re in pain. Black women certainly need to understand that they have to be an advocate for themselves. They may look at you as being difficult already, so you might as well use a little bit of that power to get what you want, which is for them to treat you and to be of service to you.

On Her Uterine Fibroid Treatment

The option of a hysterectomy did not exist in my mind at all. I’ve never been pregnant, and I want to give birth. I think if I did that, it would’ve been another unnecessary hysterectomy done on a Black woman. Also, it was never brought up during my initial consults. After getting three exclusive medical opinions, I felt the laparoscopic myomectomy was best. I was nervous at first, but once I got to the hospital, I felt fine. [The procedure] was a little under three hours. After the surgery, I didn’t have a period for eight weeks. When I got my period back, I just saw blood and felt nothing. Now I just bloat for the most part. I’m all for holistic medicine or alternative medicine. I’m all for integrative medicine, eating healthy, changing your lifestyle, herbs — I’m all for that. But sometimes, once your body gets to a certain point, there’s no reversing certain things.

Chelsea VonChaz is part of a growing collective of women who want to help others by speaking publicly about their experiences with uterine fibroids. Learn more ways Black women are moving conversations forward about fibroids at unmutingfibroids.com.

*Source: Catherino, W., Eltoukhi, H., & Al-Hendy, A. (2013). Racial and Ethnic Differences in the Pathogenesis and Clinical Manifestations of Uterine Leiomyoma. Seminars in Reproductive Medicine, 31(05), 370-379. doi:10.1055/s-0033-1348896

This editorial is brought to you in partnership with Hologic, Inc.