Championing for Change: An Influencer’s Fight for Her Own Reproductive Health

“If we have so much shame and stigma about these health issues, how do we talk about them and notice a pattern? How do we know what signs to look out for? How can we properly advocate for ourselves?”
– Latoya Shauntay Snell
Latoya Shauntay Snell is a chef, ultrarunner, and social justice advocate from Brooklyn, New York. Last summer, she sat down for an interview with me about her journey navigating fibroids, endometriosis, and polycystic ovary syndrome (PCOS) as a Black woman. Latoya started her blog, Running Fat Chef, in 2015 as an outlet for her issues with the fitness community. Today, her blog has evolved into a worldwide community beyond runners and foodies, and it has reached some of the farthest corners of the internet. From the beginning of her online platform, she began to open up about her experiences with reproductive health diseases, but she turned from runner to advocate when she was heckled while running the New York City marathon and after she miscarried twins. Letters started coming in from people around the world telling Latoya that they had found her story similar to their own with fat-shaming and medical hardships.
Since she was 10, Latoya has been battling myriad gynecological issues including painful periods, which caused her to writhe in pain on the floor of a friend’s house while she was in middle school. She frequently had to bring a change of clothes to school, anticipating her pants being soaked through with her menstrual blood. These intense periods followed her into adulthood, where she struggled with steady employment. Her period cramps were so painful that she would frequently pass out. Latoya wasn’t discouraged by family members or friends to seek further treatment for this pain, but they normalized the pain. They didn’t have the tools or knowledge to help her, and she was assured by her physicians that it was normal.
One of Latoya’s biggest supporters is her husband. As young adults, they married and had a son together. After attending culinary school and beginning to work as a chef, she found the fast-paced nature of cooking in restaurants diminished the severity of her period symptoms. It wasn’t until 2012 when she was misdiagnosed with dyssynergia, a degenerative disc disease (she really had sciatica) that she temporarily stepped back from her culinary work. This diagnosis led to what Latoya called a weight-loss journey where she lost almost 100 pounds in a year. While some of her gynecological symptoms dissipated during this time, she still suffered from extremely heavy periods and violent cramps. In 2015, Latoya was diagnosed with anorexia nervosa and this led her to change her focus from weight loss to body neutrality and positivity. This shift in her thinking about her body created a shift in her blog’s tone as well.
By 2017, Latoya was considered an ultrarunner, someone who runs more than 26.2 miles or 42 kilometers at a time. But while running the New York City marathon that year, she was heckled by a spectator who called out “It’s going to take your fat ass forever.” Later on in 2019, at the infancy of her internet fame, she ran the same marathon again while spectators harassed her with racist and fatphobic remarks. They said she was disgusting, bleeding through her clothes on purpose, creating clickbait, seeking attention, etc. While enduring this heckling, Latoya was also trying to navigate changing her menstrual products, as she was bleeding through everything she wore after mile 14. By the end of the race, her clothes were saturated with blood. Latoya said the marathon was another turning point in both her life and career.
It was also in 2017 that Latoya miscarried her twins and was diagnosed with over 21 uterine fibroids. Uterine fibroids occur more often in Black women than in any other ethnic group. According to Ashley M. Florence, MD., more than 80% of Black women will develop these benign muscular tumors in and around the uterus by age 50. Black women are often underdiagnosed and undertreated when it comes to fibroids, and their fibroids tend to occur at younger ages and grow to larger sizes. In addition, Jodie G. Katon, PhD, MS, found that Black women are also two to three times more likely to have recurring fibroids or suffer from complications. The cause of uterine fibroids is unknown; however, their growth has been linked to the hormone estrogen. If a woman with fibroids is still menstruating, it is possible for the fibroids to continue to slowly grow.
If you become pregnant and suffer from fibroids, it is critical to know their location with regard to the uterus. Because fibroids are estrogen dependent, they can grow faster throughout a pregnancy which can lead to complications during pregnancy, labor and delivery, and the postpartum period. Therefore, it is crucial that you talk to your OBGYN about monitoring your fibroids. To learn more about fibroids, click here.
At the same time she was diagnosed with fibroids, Latoya was also diagnosed with stage 4 Rectovaginal Endometriosis (RVE). Paulo Cossi, MD. notes that RVE is one of the most severe forms of endometriosis, and it can infiltrate the vagina, rectum, and the spaces in between. This type of endometriosis is rare, but endometriosis in general is surprisingly common. Endometriosis (endo for short) is a condition in which endometrial tissue grows outside the uterus. According to Johns Hopkins Medicine, in the US, around 2 to 10% of women between the ages of 15 and 44 are affected by endometriosis. Symptoms of endometriosis include painful menstrual cramps that may go into the stomach or lower back, heavy or irregular periods, pain during or after sexual intercourse, as well as diarrhea and constipation while menstruating. Many women with fibroids also have endometriosis, but as Outi Uimari, MD. PhD. points out, the symptoms of the two diseases are so similar, the possibility of having both is often overlooked.
Over the decades, endometriosis has been perceived as a disease of white women; however there is no conclusive evidence that the condition is more common in white patients, writes Dr. Katon. Almost all of the patients diagnosed with endometriosis in the US are white, Jacob Christ, MD. found, and only around 5% are Black. This is a staggering racial disparity in terms of diagnosis and subsequent treatment, especially considering that in the actual incidence of endometriosis, there is no significant difference between races. There are a multitude of personal narratives of Black women who have been misdiagnosed with other diseases, like pelvic inflammatory disease (PID), or had their concerns dismissed. In addition, Black women often face a lack of empathy in their interactions in certain medical settings. Part of the problem is a lack of clinical research that includes Black women and their reproductive health. Medical education and practice could also be examined and changed, in order to mitigate the misinformation spread about gynecological diseases and who they affect, like the assumption that endometriosis primarily affects white women. To learn more about endometriosis, click here.
During our conversation, Latoya expressed that her diagnosis of fibroids and endometriosis created a turning point, not just in her personal life, but more specifically in her work as an activist. Prior to this, her online platform was mostly about her journey in becoming a runner and other musings, but at this point it took a hard and fast pivot toward enacting social change. While trying to process the loss of her pregnancy and her pain, her platform became a home for many others suffering from the same chronic menstrual problems Latoya faces. This has not come without backlash though; she has been the target of doxxing attempts, hateful messages, and threats-even to her son’s school. Most of the hate comes from people who are angry about her advocating for racial justice, but many of the insults also target her weight.
As a fat athlete, Latoya is familiar with comments about her size. Fatphobia is another barrier for many people seeking treatment for gynecological problems. Latoya told me that the majority of her physicians blamed her reproductive health issues on her weight and insisted that “being active” would relieve her symptoms. To no avail, she would reiterate her status as an ultrarunner and tell them about her previous weight loss experience and their failure to solve her problems.
Latoya’s story is similar to the stories of other Black women facing reproductive health problems. Dismissed by physicians and treated as a nuisance, many Black women give up trying to find answers to their health issues. However, both in her personal life and on social media, Latoya was supported by a network of people who championed her and encouraged her to continue seeking medical care. Unfortunately, many other Black women do not have this same type of community support and often have to navigate the healthcare field alone.
During the pandemic, Latoya noticed she was gaining weight and attributed it to decreased physical activity and increased stress. It wasn’t until her son said she was slurring words and she noticed she was displaying signs of low glucose that she began to wonder if there was something more. Soon after this happened, Latoya noticed she was also developing hirsutism, which is the growth of coarse, dark hair in women in a male-like pattern. For Latoya this presented as a dark mustache and beard hairs as well as hair on her stomach, chest, and several other areas. In addition, her hirsutism was accompanied by cystic acne. Coming along with those symptoms were hormonal changes that affected her moods. She began to look for a new OB/GYN to see if she could begin the diagnosis process for polycystic ovary syndrome.
Polycystic ovary syndrome or PCOS is a condition in which the ovaries produce an abnormal amount of androgens, male hormones that usually are secreted in low levels by the ovaries, according to Johns Hopkins Medicine. When Latoya walked into the office of her new provider and began describing her symptoms and her suspicion of PCOS, the doctor immediately responded in a dry tone, “based on your weight, yes it’s PCOS.” This cold response immediately put Latoya into high alert. “There was no blood test or pelvic exam even performed,” Latoya lamented. The doctor flippantly listed off various treatment options such as ovarian diathermy, oophorectomy, and hysterectomy as though they were menu items at a restaurant. Latoya said the entire interaction felt detached and transactional, as though they were not talking about something as serious as removing her reproductive organs. Despite the indifferent way she got to the diagnosis, Latoya was right to suspect PCOS; however, her PCOS difficulties didn’t stop there. PCOS has a close relationship to diabetes, and Latoya was diagnosed with that disease as well. She is now on a plan to manage her diabetes. For further information on PCOS, click here.
Latoya ended up having a hysterectomy in July 2024. During the surgery, doctors also found fibroids throughout her gastrointestinal tract. Her urinary tract and bowels were also affected. While her uterus, fallopian tubes, and cervix were removed, Latoya kept her ovaries. Post surgery, she said “I’m looking forward to a new reality. It is an adjustment. Some pain is still there because of PCOS; I still feel myself ovulating or something that feels like ovulation, but I don’t have the burden anymore. I’m not worrying that I’m gonna soil myself. I’m not keeled over in pain the way that I was before.”
Nearing the end of our discussion, we reflected on the need for improved reproductive healthcare. She hopes women, specifically Black women, speak up more about their reproductive health issues so the shame and stigma around these diseases can dissipate. Latoya also described her relationship to resiliency and how she is proud of her ability to overcome struggle, yet she wishes that resiliency was an option, not a necessity. Latoya still maintains a positive outlook for her future and looks forward to running marathons to support different organizations that conduct reproductive health research.
Following this conversation, I reflected on the various themes we touched upon, specifically the lack of empathy and understanding from some healthcare providers. I realized it is imperative that changes come to what medical educators teach and how healthcare providers discuss treatment for these reproductive health issues. Providers should display a level of sensitivity towards their patients. It is not just enough to recognize racial health disparities; people must try to counteract them, and the onus lies upon educators and clinicians to change the way patients are treated. LEAVE A COMMENT Resources for More Information and Support Regarding PCOS, Fibroids, and Endometriosis
- The White Dress Project
- Center for Fibroids at Boston Medical Center
- Mayo Clinic: Uterine Fibroids
- Johns Hopkins Fibroids Center
- Endometriosis Foundation of America Resource Portal for People of Color
- Johns Hopkins: Endometriosis
- PCOS Awareness Association
- Johns Hopkins: Polycystic Ovary Syndrome (PCOS)
- Resilient Sisterhood Project: Black Women and Uterine Fibroids
- Resilient Sisterhood Project: Black Women and Endometriosis
- Resilient Sisterhood Project: Polycystic Ovary Syndrome (PCOS)
- Christ, J. P., Yu, O., Schulze-Rath, R., Grafton, J., Hansen, K., & Reed, S. D. (2021). Incidence, prevalence, and trends in endometriosis diagnosis: A United States population-based study from 2006 to 2015. American Journal of Obstetrics and Gynecology. 2021;225(5). doi:10.1016/j.ajog.2021.06.067
- Cossi, P., Schor, E. Gonçalves, L. F., & Werner, H. (2019). Assessment of rectovaginal endometriosis using three-dimensional gel-infusion sonovaginography. Ultrasound Obstetrics & Gynecology, 53: 558-560. https://doi.org/10.1002/uog.20135
- Florence, A. M. & Fatehi, M. (2023). Leiomyoma. StatPearls. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK538273/
- Johns Hopkins Medicine. (2022). Endometriosis. Accessed July 28, 2023. https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis
- Johns Hopkins Medicine. (2022). Polycystic ovary syndrome (PCOS). Accessed July 28, 2023. https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycystic-ovary-syndrome-pcos.
- Katon, J. G. Plowden, T. C, & Marsh, E. E. (2023). “Racial disparities in uterine fibroids and endometriosis: a systematic review and application of social, structural, and political context.” Fertility and Sterility. Vol. 119,3 (2023): 355-363. doi:10.1016/j.fertnstert.2023.01.022
- Uimari, O., Nazri, H., & Tapmeier, T. (2021) Endometriosis and Uterine Fibroids (Leiomyomata): Comorbidity, Risks and Implications. Front Reprod Health. 2021 Oct 26;3:750018. doi: 10.3389/frph.2021.750018. PMID: 36304022; PMCID: PMC9580755.