17 July 2023
“Nothing could hurt worse than this,” Junauda Petrus remembers thinking at the height of her pain from her uterine fibroid.
Petrus had heavy bleeding, and irregular and painful periods for almost all of her 30s. She didn’t think that it was anything out of the ordinary, because people never really talked about what could be behind painful periods, she said.
Fibroids are not commonly talked about – and especially in the way they disproportionately impact Black women. In the U.S., Black women are three times more likely than white women to develop fibroids and also more likely to develop them at a younger age.
“Being a person that bleeds, everybody’s like ‘You got it,’” Petrus said. “You’re not even supposed to name that you have any discomfort or are even experiencing your period … you’re supposed to ‘invisibilize’ that you period. And then being a Black woman, it’s kind of like, ‘Well, you ain’t supposed to really feel anything.’ You’re kind of supposed to thug out everything.”
There are also disparities in the kind of care Black patients receive when it comes to the fibroid removal. For Toni Newborn, a woman who learned about her fibroids after getting lightheaded at the gym, those issues in the health care system became apparent weeks before she was scheduled to remove them.
“The way that they described the surgery, no one ever told me that it was major surgery, that I was going to go under,” she said. “The doctor that I was working with was a man; a white man. I say all that because it mattered with how he handled me and how he approached me. It was like, ‘Nothing’s wrong, this is easy. You’re gonna be in and out, all this stuff.’”
“If you think about like the history of Black women and with the medical industry of ‘You can take it,’ it was totally that. Like, ‘You’ll be fine and everything is gonna be fine.’ There was nothing about this is actual surgery. No one walked me through you’re gonna go under and this surgery is gonna take a couple of hours. It was just none of that,” Newborn said.
She only found out about the intensity of the removal surgery after asking her doctor if she could continue her exercise classes after the surgery.
“He was like, ‘No, you can’t.’ And I’m like, ‘So (the surgery is) something more than that.’” Newborn said.
The decision to get surgery or try other treatments greatly depends on the impact the fibroid has on someone’s life. Fibroids are a really common gynecologic problem and can impact fertility and sometimes complicate pregnancies, according to Dr. Patricia Harper, an obstetrician and gynecologist at Allina Health’s Mercy Hospital.
“It’s certainly a very common problem that we’re dealing with and it has a major impact on a lot of women’s lives,” Harper said.
The impact on women’s lives
Researchers have looked into why Black women are getting fibroids at higher rates and younger in life, but there is no clear answer. Getting periods at an earlier age, vitamin D deficiency and certain environmental factors like stress, diet and history of abuse are all risk factors that have been suggested in literature, according to Harper.
“The reality is we don’t really know why at this point,” she said. “We don’t totally understand the reason some women get them and others don’t.”
Some people with fibroids experience no symptoms. Others experience a multitude of symptoms like heavy bleeding with periods, pelvic pressure and often pain with intercourse, Harper said.
“How I experienced them was like a lot of heavy bleeding and horrible cramps,” Petrus said. “The period would be so painful I would have to go to the ER because you feel like you’re dying.”
Along with having to go to the emergency room a handful of times, Petrus’ heavy periods made it difficult for her as a teaching artist.
“I needed to make my money regardless. So it’s like, I’m literally taking a bus for an hour and a half, do all of the things, prepare myself fresh tampons, two overnight pads, get to the place, change those things, and hope that the session I teach, I won’t bleed through by the end of that,” she said. “When you think about all of these people who are going through this extreme amount of bleeding, a lot of us are doing it on the job.”
There were occasions when she couldn’t even participate in a video chat meeting because of the pain.
“Sometimes the pain was like ‘I want to literally want to perform the surgery on myself now with a butcher knife. Like, I want my uterus out of me. Like, nothing could hurt worse than this,’” Petrus said.
In 2021, Nicole Pacini went to her annual gynecological appointment, and based on her hemoglobin levels, her doctor recommended she get an ultrasound.
“When I went to get the ultrasound, that’s when I found out I have fibroids,” said Pacini. “It was a lot. It was at that time where I was thinking, I don’t know how long these fibroids have been growing inside of me because I had never had an ultrasound before. I was just kind of suffering through it.”
Fibroids can also affect a person’s social life. Pacini said her heavy periods got in the way of her day-to-day.
“These are the types of things that no one really talks about. I can’t go hang out with you because I’m on my period and I have to be close to a restroom because that’s how heavy I bleed; so I can’t leave my house for days at a time because that’s how heavy my flow was,” Pacini said. “You can’t do much of anything during that time.”
Heavy bleeding can often lead to anemia. Newborn was anemic and had very low vitamin D levels, so she got an ultrasound done to see what might be happening.
Pacini also had low iron levels. She says her heavy periods would leave her feeling tired and depleted.
“It was just really bad,” Pacini said. “When you have the fibroids, they’re doing things to you on a daily basis that you don’t know, like, why am I just tired for no reason? Why do I have this pain for no reason? You (are) having all these things that go on, you don’t realize they’re connected to the fibroids.”
After having her last two children of six in 2005, Pacini had her tubes tied. When she brought up her heavy periods to her gynecologist of around 18 years, he thought a hysterectomy could help her with those periods.
“I was just like, ‘no, I don’t want to do those types of things.’ I’ll just wait until I reach that age of menopause where I don’t have to deal with any of that. So I would just suffer through the periods, through the uncomfortableness,” she said.
Treatment options
Some of the fibroid symptoms can be treated hormonally, while other solutions involve removing the fibroids – known as a myomectomy, or hysterectomy, which is the most definitive guaranteed way to eliminate fibroid related problems, Harper said. Other approaches are uterine artery embolization, which shrinks the fibroid and a newer technology called fibroid ablation, which uses ultrasound waves to shrink the fibroids.
Just a week before Pacini’s 50th birthday, she decided she wanted to get a hysterectomy. She got a partial hysterectomy and her uterus, and the fibroids were removed.
For Pacini, Newborn and Petrus the surgery was a game changer.
“It (fibroids) was affecting my quality of life, and I didn’t want to continue to live like that,” Pacini said. “It wasn’t just a period. It was those fibroids, you know, those things were taking over and just kind of doing their own thing inside my body.”
Newborn considered surgery because the fibroid was impacting her and her husband’s ability to conceive. While the surgery didn’t clear all of the fertility concerns, she says the lower back pain and heavy bleeding both stopped.
Petrus says the surgery, which she had done at the age of 41, turned her life around “180 (degrees).” She had been experiencing the symptoms for close to 11 years, she said.
“My life has changed so profoundly. I had no idea how impacted I was by that much bleeding,” Petrus said.
Pacini said her hysterectomy brought her clarity.
“It’s almost like if you wear glasses, how your glasses get dirty and you wipe them off. I could see now. That’s literally how it was,” she said. “I would look out the window and it’s almost like my eyesight got better. I don’t know that to be true, but that’s just how it felt.”
A barrier to relief is a costly surgery. Without insurance, people end up living and dealing with the pain and difficulties that come with fibroids. After Petrus got health insurance through her spouse, she was able to build a relationship with a provider that really benefitted her, rather than seeing a different doctor each time.
“Having that opportunity to build that confidence and a relationship with the doctor to feel like I could trust them enough to advocate and collaborate with me and my health care was super critical and insurance allowed for that versus before I (would) go to Planned Parenthood and maybe they’d give me an exam, but they wouldn’t be able to diagnose me, and then (I would) go to this other place, and I’d just get lost in the sauce,” she said.
Many Black people also have mistrust of medical providers, understandably so to Petrus because of the origins of gynecology as a field, with James Marion Sims – known as the ‘father of gynecology,’ who operated without anesthesia on enslaved women in the 1800s.
“Gynecology was literally built off of a white man experimenting on enslaved Black women. Think, there’s a lot of ways that our bodies remember that particular violence,” Petrus said. “I think the ways that people who are marginalized already have very valid reasons to mistrust the medical system plays into it and that people who are poor tend to not be seen in more preventative stages of their illnesses. All of this stuff plays into it and played into my experience.”
Opening up to the conversation
Pacini said she understands the hesitations many people have with getting any kind of surgery – let alone one for fibroids.
“I shared my story on Facebook and I’ve talked to so many different women who were experiencing the same thing. They’re afraid to go to surgery or they’re afraid to do any types of treatment to remove the fibroids. There’s a lot of fear,” she said.
Education around all the different treatment or surgical options is essential, Newborn said. Her surgery led to other complications. After some testing, she found out one of her fallopian tubes was blocked – which her fertility specialist has since told her could be scar tissue from the surgery. That blockage makes it difficult to conceive; something she and her husband really wanted.
“I’m pretty sure (with) that fibroid surgery that the scar tissue resulted in me having a blocked fallopian tube. Had I known that, there’s no way that I would’ve pursued the surgery route. That was devastating for us because it made it more difficult,” Newborn said.
Newborn and her husband went to a fertility specialist and she became pregnant through intrauterine insemination. In 2021, she gave birth to her son, and they’re planning for another one now.
She wished the long term effects or possibilities of the surgery were more clearly explained.
“I just would have preferred to know what I was getting into going in before making a decision to have the surgery,” Newborn said.
Both Newborn and Pacini feel that talking about fibroids more is one way to bring greater awareness about their impacts on people’s lives and educate people who might have them.
“I feel like a lot of women, and not just Black women but a lot of women, are afraid to talk about their bodies and what goes on with their bodies. Because we don’t talk about it with anyone, we don’t realize that there are so many other people that are going through the exact same thing. And then it makes you feel normal because if you don’t know, you’re like, ‘I’m going through this alone. Why am I suffering like this?’ It’s very sad and challenging to go through experiences by yourself when you don’t know other women that are dealing with that,” Pacini said.