Overcoming Stigma with Care and Community

Thomasine’s journey through uterine fibroids started with pain but led to empowerment.


Three years ago, when she was 32, Thomasine Haynes had a menstrual period that was so heavy her sister had to rush her to the hospital. When she arrived, she’d lost so much blood that she needed a transfusion. The hospital referred her to a gynecologist, and Thomasine was told she had one option left: a hysterectomy.

Feeling she had no other choice, she scheduled the surgery. She spent the night before the procedure praying. Was this the only answer for her? Did she have to accept that she couldn’t have more children? When she woke up the next morning, Thomasine had the clear-eyed feeling that she just couldn’t go through with it.

***

Myovant Stories

This story is the first of many Myovant is publishing about redefining care for women’s health and prostate cancer. Be on the lookout for more.

Thomasine grew up in Clarksdale, a swampy, half-deserted town in the Mississippi Delta that’s famous for its blues and barbecue. “I started experiencing bad cycles early on,” Thomasine says. “I was cramping so hard and bleeding so heavy I’d have to stay home from school, sometimes for two or three days.” She got her first period on her 13th birthday, and from then on, every month brought misery.

“No one ever talked about what you should expect from your cycle,” she says. “It was one movie in fourth-grade PE class and my mother saying, ‘Just don’t get pregnant.’ Pain was considered part of being female.” Where she grew up, periods, including what was normal, weren’t discussed.

Clarksdale, a rural town in Mississippi, has a population of around 16,000.

The period pain that dogged Thomasine added to other stresses. Her mother, Juanita, worked late nights dealing blackjack at a casino and was rarely around. Her father, who’d been imprisoned, had disappeared. Thomasine’s grandmother, Ruby, was a stable presence in her life. “My grandmother always said that you are not your circumstances,” says Thomasine, now 35. “I was determined not to be a product of my environment.”

“No one ever talked about what you should expect from your cycle.”

“I didn’t like being home, so I threw myself into school and social activities,” she says. And despite her debilitating periods, Thomasine got good grades, ran track, participated in band and majorette, and attended church. She worked throughout high school at a video store to afford her majorette uniforms and school supplies, and she saved up money. Thomasine headed to Mississippi State University and became the first person in her family to graduate from college, with a degree in business and healthcare administration.

NEW PAINS

Despite her successes, no amount of hard work or determination could conquer her internal pain. At 21, Thomasine had a son, Christian. After the baby was born her period pain came back, this time with new symptoms. “All of a sudden, I was having mood swings, I was nauseated, and my abdomen was not only cramping from the inside, but very tender and sore to the touch,” she says. She was now staying in bed two to three days during her period, her head and back hurting, and her joints aching.

“I was having mood swings, I was nauseated, and my abdomen was not only cramping from the inside, but very tender and sore to the touch.”

Thomasine thought her new pains, like her old ones, were normal, just part of what women had to endure. No doctor had ever told her differently, nor had any of her family or friends. The doctors she saw during her regular checkups put her on birth control pills to alleviate her periods, but they made her feel nauseated and caused her to break out in acne. She got off the pill, but her terrible periods and her premenstrual mood swings continued. “I would just curl up in a ball in bed every month and wait for it to pass.” With a young son and full-time job, she asked her mother, Juanita, to come live with her to help. “I couldn’t even take care of my son,” she says, which added to her emotional turmoil.

Thomasine's mother, Juanita, helped her care for her son when her symptoms became increasingly difficult.

She kept trying different doctors, and several hormonal treatments, but nothing helped; all the treatments made her feel ill, and one caused her hair to fall out. At 25, she moved to Dallas and saw a new gynecologist, who finally figured out what was wrong: uterine fibroids.

“When he reviewed my medical history, the doctor told me that fibroids were what had been going on the whole time,” Thomasine says. “He wondered why I was never diagnosed.”

Thomasine wondered that herself and today accounts for that oversight as the difference between rural and big-city doctors. “In Dallas, they had the tools to figure out what was going on with me,” she says. “In rural areas, when women have a lot of period pain, it’s the pill or a hysterectomy, take your pick.”

“In rural areas, when women have a lot of period pain, it’s the pill or a hysterectomy, take your pick.”

Uterine Fibroids

Up until then, Thomasine hadn’t been familiar with uterine fibroids, which are noncancerous growths that develop in the muscular walls of the uterus, causing the heavy bleeding, cramping, and other symptoms she’d experienced. Yet fibroids are very common, particularly among Black women, who are not only more likely to develop fibroids but to have more, larger fibroids and severe symptoms. The difference may have something to do with genetics but also with a lack of resources for treatment in rural communities like Clarksdale.

Over 25% of women of reproductive age in the US have uterine fibroids, making it an extremely common condition.

“In the African American community there are a lot of disparities in access to resources that would allow for diagnosis and treatment,” says obstetrician-gynecologist Dr. Jessica Shepherd, Chief Medical Officer of Verywell Health and surgeon at Baylor University Medical Center in Dallas, Texas. “A lot of women with pelvic pain and heavy bleeding are told it’s normal, deal with it, and so there is no impetus to seek a healthcare provider.” Dr. Shepherd believes there’s a widespread lack of education and awareness about fibroids, particularly when it comes to treatment. “Often women hear that the only answer is a hysterectomy, and they’re trying to avoid that, so they just neglect the issue.” Dr. Shepherd says that not only do uterus-sparing options exist but that lifestyle changes, such as diets that can decrease the inflammation of fibroids, can ease the symptoms.

African American women are three-times more likely to have uterine fibroids compared to white women.

“A lot of women with pelvic pain and heavy bleeding are told it’s normal, deal with it, and so there is no impetus to seek a healthcare provider.”

“Many times women feel lost in their journey going through fibroids,” says Dr. Shepherd. “I would like women to feel empowered and let them know that they’re not alone.”

INCREASING SYMPTOMS

In Dallas, Thomasine had found a doctor who listened to her but now faced a complex pregnancy. When the doctor had diagnosed her fibroids, he had also discovered that she was pregnant, and the hormones that fed her pregnancy were also feeding her fibroids. “It was like I was carrying twins,” she says. “Every time the baby kicked, she hit a fibroid, and it was terribly painful.” The pregnancy was also high-risk, as the fibroids put her in danger of bleeding out during labor.

Her daughter, Caley, was born premature, spending one to two days in the ICU. Thomasine thought that after giving birth she would finally have some relief from the fibroids, which had grown bigger, but the doctor told Thomasine she needed to recover and finish breastfeeding before she could have them removed. “I was still sick every day—to where it put me in a state of depression,” says Thomasine. “I couldn’t handle my kids by myself … I had no relief, bleeding heavily, always having to put pads down in my bed so I wouldn’t soil through my bed and clothes.” Once again, she asked Juanita to come help take care of her children. “I was blue and just couldn’t care about my baby, which made me feel worse.” Normally outgoing and cheerful—“Everyone loves Thomasine,” she says—she was listless, bedridden, and thinking dark thoughts.

Though 70% of women see a doctor within the first year that they experience symptoms of uterine fibroids, it takes nearly five years on average to get a diagnosis.

Thomasine continued to struggle for a few more years, despite surgeries to remove the fibroids. “My life was controlled by my cycle,” she says. She had to keep sanitary napkins in her car, her purse, and at work. “Forget about dating,” she says. “Between PMS and my cycle, I had about one good week a month, and I just didn’t want to explain the whole situation to anyone.”

“My life was controlled by my cycle.”

Then three years ago came that horrible trip to the hospital, the blood transfusion, and the decision whether or not to get a hysterectomy. “I didn’t want a hysterectomy,” Thomasine says. “The doctor seemed to think that since I already had two children it wasn’t a big deal. But I was still young, I wasn’t married, and I just didn’t want that option taken away from me.”

She left the doctor’s office determined to find another solution. But when her cycle came the next month, her period was heavy again, and the pain was excruciating. “It makes me teary-eyed to think about it,” she says. “I was bleeding so heavily, I couldn’t get out of bed. I’d been living like that for a decade—physically and emotionally drained, with no relief.” She scheduled the hysterectomy, but in the end, she decided it wasn’t the answer.

Thomasine considers that moment a turning point.

A NEW PATH FORWARD

Thomasine wasn’t going to get a hysterectomy—despite the pain, it wasn’t worth losing her chance of having more children. But she also couldn’t keep living as she had been, and she began looking for other options.

She began focusing on her spiritual life and her wellness, paying more attention to eating nutritious food and getting more exercise, which her doctor supported. She completely changed her diet, giving up red meat, processed foods, dairy, and the fried foods that are famous in the South. She says that after several months, she felt physically and mentally better. Eventually, she felt some relief during her period. “I wasn’t in a funk all the time, and I had more energy,” she says. Different treatments work for different people, and Thomasine had finally found something that worked for her. “It wasn’t an easy journey, but I was determined not to have a hysterectomy.”

Focusing on her wellness, Thomasine saw her symptoms start to improve. "I wasn't used to not cramping and not being in bed for three days when my cycle came on."

Thomasine also began to research everything she could find about fibroids. As she learned more, she said she felt desperate to talk to other women who’d had similar experiences. She reached out to the Fibroid Foundation, whose founder, Sateria Venable, asked if she wanted to chat. Sateria had likewise been diagnosed with fibroids, at 26, and was told she should have a hysterectomy. That prompted her to look for other options and create an organization where women with fibroids could support each other.

“When I talked to her, it was like me hearing my story all over again,” says Thomasine. “It brought me to tears. I wasn’t the only one out here going through that.” The silence was finally broken. “It helped me to hear other women’s stories, and for them to hear mine,” she says. “It gave us all strength.”

“When I talked to her, it was like me hearing my story all over again,” says Thomasine. “It brought me to tears.”

Since she discovered she had fibroids, Thomasine learned that her sister Tomesha, who is 10 years older, also had fibroids, and a partial hysterectomy (a procedure that takes out the uterus but preserves the cervix and ovaries). “Tell me why I didn’t know my sister went through the same thing in her 20s?” Thomasine asks. And while her mother didn’t suffer from fibroids, she told Thomasine that her grandmother also used to have “female issues.” Thomasine found out that her childhood friend Curtisha also had debilitating fibroids; her mother, grandmother, aunt, and sister all had hysterectomies.

Over the years, Thomasine has found support from family and friends. She’s also been connecting with other women with uterine fibroids.

Thomasine has since become a patient advocate and ambassador for the Fibroid Foundation. “There’s so much shame and stigma around periods,” she says. “Women have to talk about it. My daughter is 8 years old and she’s not only comfortable with her body, she can explain to you what fibroids are. She’s never going to suffer the way I did. She’s going to speak up.”

***

The Fibroid Foundation offers support to women with fibroids.
Learn more >>

There’s a billboard in Clarksdale near the bridge over the Sunflower River advertising an upcoming women’s empowerment conference. It features a photo of a pretty woman with a topknot, cat-eye glasses, and prominent cheekbones: Thomasine. In 2019, after giving a business pitch presentation, she won an entrepreneurial grant. As part of her pitch, she told her story about having fibroids, for the first time in public, to a large audience.

“It was scary to tell my story—I had the trembles—but I could see the women in the room nodding their heads at everything I was saying,” she recalls on a recent visit back to her hometown, looking up at her face on the billboard. “Some of the women were in tears, which made me realize that I’m on the right path.” Over the past few years, Thomasine has made overcoming silence and misinformation about fibroids, particularly in Black and rural communities like the one she grew up in, her mission. She has just finished her prerequisites for nursing school, where she’ll enroll in the fall. She plans to eventually become a nurse practitioner, with a focus on educating women about feminine health and supporting their journeys to wellness.

“My whole intent is to erase the silence around fibroids because we’re suffering by ourselves. We need to create a community of women who are able to freely express themselves without feeling like something’s wrong with them.”

“My whole intent is to erase the silence around fibroids because we’re suffering by ourselves,” Thomasine says, gazing into the muddy waters of the river below, turtles surfacing for air. “We need to create a community of women who are able to freely express themselves without feeling like something’s wrong with them.”

A few minutes later, she steps into Abe’s Bar-B-Q, situated at the crossroads where musician Robert Johnson reportedly sold his soul to the devil to play the guitar. Inside, Thomasine warmly greets one of the cooks, a friend from childhood who never left town.

“What’re you doin’ here?” he asks her.

“Oh, I’m just here with this lady talking about my fibroids,” she says in a loud, cheerful voice.

The cook pauses. “All right,” he says, making a little bow in her direction. “All right, Thomasine.”

Thomasine’s Advice for People with Fibroids

Through navigating her journey with fibroids, Thomasine gained important perspective on what worked for her. Here’s a few pieces of advice she has to share.

BE YOUR OWN ADVOCATE

“We’re used to trusting doctors because they’re experts. But you have to educate yourself about fibroids and your feminine health and be your own advocate. Don’t be scared to ask for another opinion, especially if a physician is suggesting surgery.”

TAKE GOOD CARE OF YOURSELF

“You have to become more conscious of your health and wellness. Try to relieve your stress—maybe through meditation, exercise, or talking to a friend. Be mindful about what you eat and pay attention to what foods seem to irritate or calm your condition. I personally feel better when I don’t eat dairy, red meat, or gluten—but more importantly, I focus on the positive, eating a lot of fruits and vegetables.”

BE ACTIVE

“I found that getting at least 30 minutes of physical activity a day would alleviate some of the pain. It can just be gentle exercise, like walking, but get up and move. It may not only improve your symptoms, but your mood.”

SHARE YOUR STORY

“It makes a huge difference to know that you’re not alone if you have pain from fibroids. Reach out and share your story with other people—with friends, in social media groups, in organizations like the Fibroid Foundation. We can share resources and support each other when we’re down. The more we speak out, the more we erase the silence and stigma around fibroids and feminine health.”

UNDERSTAND THE ROLE OF RACE

“There’s a history of people believing that African American women are much stronger than other women and that they can endure more pain. Often doctors don’t take us seriously when we ask for pain medications. Black women are underserved, medically, and have fewer resources. Educate yourself and advocate for yourself, and find resources to get help paying for the treatment you need.”

Note: This story shares one patient’s journey through fibroids, and every individual has different needs. As always, before making any major health or lifestyle changes, consult with a healthcare professional.

About the Author

Laura Fraser is a journalist who has written extensively about women’s health for magazines including Vogue; O the Oprah Magazine; Self; Health; and others. She’s also a New York Times-bestselling author.