30 Black Women Share What It’s Like to Live With Uterine Fibroids
Uterine fibroids are a condition all too common in the Black community. According to a 2020 report published by the University of Michigan, Black people with uteruses are far more likely to develop these masses in comparison to their white counterparts. In fact, between the ages of 18 and 30, an estimated 25% of Black women* will be diagnosed, while only about 6% of white women will receive the same news. By 35, that number spikes to 60% for Black women — not to mention, this demographic is at least two times more likely to develop recurring fibroids post-treatment.
But despite its prevalence, medical professionals still have yet to pinpoint what exactly makes Black women so much more likely to end up being diagnosed.
“More research is needed, but fibroid growth seems to be linked to prolonged exposure to estrogen, and African ancestry is considered a key risk factor for fibroid development,” shares board-certified obstetrician, gynecological surgeon, and founder of Lady Parts: a multimedia platform created to demystify female health care, Dr. Stephanie Hack. “Environmental factors such as diet, history of abuse, exposure to stress, and vitamin D deficiency have also been linked to fibroid growth.”
Fibroids, otherwise known as leiomyoma, can be described as “smooth muscle cells and connective tissue” that are most often found in the uterus, but can also grow in other reproductive organs such as the fallopian tubes and ovaries, according to Dr. Hack. Symptoms can include heavy and/or prolonged periods, spotting between menstrual cycles, pain in the abdomen, pelvic region, and lower back, constipation, and in some rare — emphasis on rare — cases, infertility.
“They may be the sole cause of infertility in two to three percent of women,” the OBGYN explains. “Much of this has to do with fibroid location, with fibroids that grow into the uterine cavity, known as submucosal fibroids, being the main culprit. Many people get pregnant with fibroids and go on to have healthy pregnancies and births.”
Everyone’s journey with fibroids will look different, but if gone untreated, these masses can continue to get larger, cause more intense symptoms, and put physical pressure on other organs in the pelvic region. Thankfully, there are numerous forms of treatment that can be tailored to a patient’s specific needs. Some options include hormone therapy to shrink the size of the masses, as well as introducing birth control pills, IUDs, or progesterone shots to help curb bleeding and pain. People can also choose other minimally invasive procedures such as uterine artery embolization to cut off blood flow to the fibroids, or undergo a hysteroscopic myomectomy or abdominal myomectomy to surgically remove the masses. A full hysterectomy, where the entire uterus is removed, is another option.
Some may consider adding supplements or certain foods to their diet as well. A 2022 study published in Nutrients, a peer-reviewed, scientific journal of human nutrition, found a strong link between vitamin D deficiency and uterine fibroid formation. The findings also showed that a vitamin A-rich diet may prevent or limit the growth of fibroids as well. Additional research has found that people who tend to eat at least four servings of fruit or vegetables a day were less likely to develop fibroids in comparison to those who only ate one serving in the same timeframe.
With all of this in mind, it’s clear that living with uterine fibroids as a Black woman, while also trying to navigate a discriminatory health care system, is rarely ever a straight and narrow path. Along with the common physical symptoms, there is the mental anguish, fatigue, anxiety, loss of pleasure during sex, high cost for treatment, and many other factors that are oftentimes not accounted for.
Since the severity and side effects of fibroids can vary so wildly, it’s important to work with your doctor to find the best treatment plan for you. But hearing other people’s stories can be a source of comfort and empowerment as well, if only because it proves you’re not alone. To highlight the extremely common, but under-discussed, experience of living with uterine fibroids, Allure spoke with 30 Black women from all walks of life to discover what this journey is really like — and how it has transformed the ways in which they now care and advocate for themselves, and their bodies.
Bonita Jalane
Atlanta
I found out [I had uterine fibroids] in 2022 after experiencing excruciating nausea for a few months during my cycle. I also noticed that although I was working out three times a week, and was losing weight, I could never flatten my stomach. At first, I was hospitalized and the doctors said they didn’t know what was wrong with me. But after receiving a sonogram, I was diagnosed. My OBGYN said one was the size of a cantaloupe and another a mango, with one sitting on my uterus. He also said that if I wanted to have children I would have to have the fibroids removed, so I made the decision to have surgery. It took six weeks to recover, and while there was a sense of relief, I was also worried about the scarring when my skin started to keloid. But as the days go by, I’ve come to peace with the way my body now looks — my scars are a part of me. They remind me that I’m a survivor. Each day I make it a part of my practice to love on myself and will one day tell my future child that I did this for them.
Meaghan Taylor
31, Atlanta
Before being properly diagnosed, I had visited several doctors trying to figure out why I had such heavy menstrual bleeding and a bloated stomach. Finally, one ordered a vaginal ultrasound and confirmed it was fibroids. Before then, I had no idea what a fibroid was, so it was a very scary experience, filled with constant ER trips for morphine and blood transfusions [to treat pain and anemia]. The diagnosis made me come to grips with what was really going on with my body, and why I was experiencing acne and an enlarged stomach. But also the mood swings, tiredness, and heavy bleeding. I’ve had fibroids removed twice, once in 2018 and again in 2021, and I’m going back in two weeks for an ultrasound to see if they may have returned. While this experience has been tough, it’s taught me to be very conscious of what’s going on in my body, so I’ve taken a holistic approach to treatment. Keeping stress levels low is very important, which means even with everything going on, I try to focus on the positive and remember to relax. I also think a part of the healing has to do with building community. Despite its prevalence, I was shocked to find out there is so much the medical community doesn’t know about fibroids. We as Black women have to lean on each other. I’ve talked about it with friends, family, and my social media community to the point where people come to me for support and advice. This is a serious issue in our community, and I’m glad we’re starting to have more conversations.
Dara Pinkston-Scott
53, Cortlandt Manor, New York
I was first diagnosed with uterine fibroids during my third trimester when I was pregnant with my second child. At first, they did not give me any discomfort, but after giving birth, I had very heavy periods for the next 17 years. I had to double up on pads and tampons. It was expensive, and leaking onto my clothes was embarrassing. The bleeding became so bad that I eventually became anemic and suffered from extreme fatigue. My situation was bad, but I admittedly delayed surgery because to me, not having a uterus made me feel like less of a woman, and my gynecologist understood. I did try laparoscopic cryoablation to try to shrink them, but it didn’t offer any prolonged relief. During this whole journey there were often times where mentally, I felt really alone. I wasn’t fully understood by the women in my family — they didn’t get how this condition was impacting my daily life. By the time I hit my late 40s, I decided I had enough. I knew I wasn’t going to have any more children, so I opted for a partial hysterectomy, and kept my ovaries. After my surgery, I was amazed at how much energy I had. A few weeks post-recovery, I hiked the Virginia Appalachians with a group of other women of color. I wouldn’t have dreamt of doing such a thing if I did not have a hysterectomy.
Chelsea VonChaz
34, Los Angeles, CA
I was initially diagnosed in 2016 after complaining of menstrual pains and blood clots to my doctor. I had a transvaginal and abdominal ultrasound before I finally got a proper diagnosis. It wasn’t great news to receive, but wasn’t exactly surprising since my mom and both grandmothers had fibroids before undergoing hysterectomies. At first, I didn’t have any discomfort from the tumors, but in fall 2020, I experienced the worst bleeding and most excruciating pain during my period. It was like non-stop running water with clots. But to my surprise, even with a diagnosis, it took time to find a physician that took my case seriously, and didn’t try to encourage me to take birth control. I had to take photos [of the bleeding] and show my doctors. Was this extreme? Maybe to some. But it was this kind of behavior and self-advocacy that got me a rushed surgery and the medical attention I deserved. I initially opted for holistic treatments: I did everything from acupuncture to getting rid of meat, dairy, sugar, and alcohol in my diet. In the end, I had two separate hysteroscopic myomectomy procedures to remove the fibroids. My final surgery was in December 2022, and while I’m still in the process of healing, I feel so much better. Self-care now looks like continued acupuncture, pelvic floor therapy, and lots of rest.
Maxine Grant
36, Brooklyn
In 2012, my OBGYN found a single fibroid during a checkup. I was told they were common, and I had nothing to worry about — even though my periods had been longer and heavier for almost a year at that point. I decided to find a new doctor who could closely monitor its growth via sonograms. By 2016, I had all the symptoms: bloating, extreme menstrual pain, and heavy and irregular 10-day periods — which meant spending at least $50 per cycle on tampons and pads, along with pain medication and heating pads. The discomfort I felt in my own body was unreal — I was detrimentally anemic from all the bleeding and chronically fatigued. I also had to deal with the emotional toll of chronic pain while trying to balance work and my social life.
In 2020, before undergoing surgery, I committed to a diet of no meat, processed foods, alcohol, or dairy. Thankfully, it alleviated most of my symptoms. I had shorter and lighter periods, but pain and bloating persisted. Two years later, on May 11, 2022, I had an open myomectomy where my doctor removed 29 fibroids. It was the best decision I’ve made in my life.
Augustina Ampofo
32, Toronto
I was 27 when I first discovered I had fibroids, after years of heavy and painful periods. At one point, I was bleeding for nine months straight, and ended up in the ER multiple times for blood and iron transfusions. One of the fibroids even began inducing contractions — it was the worst pain I had ever experienced. That’s when I got a myomectomy to remove 11 masses. While I was relieved, I would be lying if I said the recovery process was easy. I couldn’t sleep or walk properly for weeks. I have a hard time understanding why there’s such a lack of research, funding, and mental health support in this area. So many people are suffering in silence, which is why I started my own non-profit Jurnni. We are dedicated to tackling common health issues, such as uterine fibroids, by providing accessible information and creating a supportive community. I want women to know that they are not alone and that heavy and painful periods are not normal, and there are ways to get help.
Crystal Anderson
41,Brooklyn
In 2014, my belly looked like a bag of potatoes when I was lying down. Multiple people would ask me, “How far along are you?” because my belly was so distended from the masses in my uterus. I soon rushed myself to the doctor in a panic to find out what was wrong. The first gynecologist I saw was horrible. And while he gave me a diagnosis, he also told me I would have to live with them and would likely never be able to have children — spoiler alert: he was wrong! I finally found a wonderful MD who assured me that he could remove the fibroids and that if I wanted to have babies, I could. He also explained that my abdominal pain and severe menstrual bleeding would be curtailed once I had surgery. I opted for an open myomectomy in 2014 and again in 2021. Nineteen fibroids were removed on the second go. While this journey hasn’t been easy, the silver lining is that I am much more aware of my body now and intentionally tune into how I’m feeling and what is actually happening in my uterus. I also advocate for myself more in medical settings. The fact that fibroids disproportionately affect Black people with uteruses and very little clinical research has been done is so telling and upsetting. It’s also shocking in a way, because when I shared on Instagram that I had undergone surgery, my DMs were flooded with folks wanting more information about my surgery, sharing their stories, and commiserating. We deserve better than this.
Ashley Grant
33, Farmington Hills, Michigan
No one ever tells women our periods aren’t supposed to be painful, so I spent so much time just pushing through something I thought was normal. I had all of the key symptoms, and thought I contracted a UTI. But when I went to visit a new gynecologist in April 2021, I found out I had a fibroid. Getting the diagnosis was stressful and honestly depressing. My doctors have been working on different treatment plans since finding the mass — mostly focused on shrinking it before opting for surgery. But since finding out the fibroid had attached itself to my bowel, they determined the risk was too high with other treatments, and now I am scheduled to get an open tummy myomectomy in a few weeks.
Self-care has been hard for me throughout this journey, because I don’t feel or look like myself. When I’m up to it I get together with my friends, for something as simple as dinner, or spa days alone just to clear my mind. I have also started recording and documenting my thoughts when I feel overwhelmed. But one thing I think people may not realize is how much it can affect your self-esteem. It’s such a mindfuck not looking like myself or liking what I see in the mirror, because this fibroid has me measuring as if I’m four months pregnant. It’s so emotionally and physically draining in ways I never expected. Some days I just stay home sad because I’m exhausted and angry. I really hope for more education around this topic, so women can know more about our menstrual cycles. It’s not meant to be painful — if they are, something is off.
Bianca D. Smith
34, Baltimore
I discovered I had uterine fibroids in April 2022 through a visit to the emergency room for severe anemia. Prior to that, I had been bleeding for almost nine months. The location of my fibroids posed a serious threat to my fertility, and I now have to have fertility testing to prepare for my journey to motherhood. Since my diagnosis, I’ve had to make some huge shifts in how I handle my overall health and wellbeing, and I am hypervigilant of my period symptoms. I ended up opting for surgery to shave some of the uterine fibroids down. Thankfully, the procedure did provide me with some relief.
I used to feel imprisoned by my body, but now I’m working on feeling and being free. I used to stay home all the time, too afraid to go out, because I was constantly bleeding. Now I go outside to the library, coffee shop, and walking trails. But in the back of my mind, I’m always afraid the surgery did not work and the uterine fibroids will come back. For any other Black women out there who are experiencing symptoms, know that you’re not alone. As a collective, we have so many shared reproductive experiences that are often downplayed or overshadowed — and fibroids are very common in our community. When you visit a doctor, be sure to ask questions and extra testing. My first two physicians didn’t listen to me, and it almost cost me my life.
Anonymous
44, New York
I have had heavy menstrual cycles since my teenage years. I suffered from excruciating menstrual cramps three to five days every month. I missed out on school, extracurricular activities, and social events because of my heavy cycle. My high school nurse in Jamaica first mentioned that I may have fibroids and suggested my mom and I look into it. Between my late teen years to early 20s, I was officially diagnosed with having uterine fibroids, which affected my fertility. As a result, my OBGYN suggested my partner and I try IVF to get pregnant. But this only led to multiple miscarriages — and one that almost cost me my life, if I’m putting it gently. I’ve had two myomectomies, nine years apart, and last year I did a uterine fibroid embolization. What has surprised me the most in this journey is the effect these masses have had on my body and overall health. I have been receiving iron intravenously every three to six months, on and off, for approximately seven years if not more, due to severe anemia from the bleeding.
Michelle Chung
39, Toronto
I was 15 years old when I first discovered my fibroids. The diagnosis explained why my periods were so heavy and why I was clotting so much. But it wasn’t until my college and university years when it started to affect me the most — there were no medications or support for the pain, and one doctor recommended removing my uterus completely at the age of 19. I would miss weeks of school and once I got into the workforce, my sick days were used for dealing with fibroid pain. I haven’t gotten [medical] treatment for mine, but I’ve made several lifestyle changes. I take my body very seriously, from the food I eat, to the places I go, and even the people I hang around with. Every morning, Monday to Friday, I hit the gym as my me time. For anyone noticing similar symptoms, keep in mind that uterine fibroids affect women differently. It’s your body — and nobody knows your body like you do. So when you go to the doctor, ask questions, do your own research, and take care of yourself.
Julissa Arzu
30, the Bronx
I discovered I had fibroids when I was 17 years old during my annual gynecology exam. Initially, I was clueless about what the diagnosis meant for me, but it was the reason behind my iron and vitamin D deficiency, as well as the unexplainable fatigue. After doing a sonogram, my doctor saw that my uterus was pressing against my kidneys, and recommended myomectomy surgery to remove the masses. In 2019, my doctor removed 21 fibroids, and I immediately felt like a brand new woman. The diagnosis completely changed the way I look at self-care.
I now take vitamin D supplements and have eliminated dairy and red meat from my diet. I also work out several times a week. What has surprised me the most was learning about the amount of Black women I personally know who have been diagnosed with fibroids, and for years had no clue. It’s so important for our community to take care of ourselves and go to a doctor you trust — Black doctors matter. If it wasn’t for mine I would probably still have fibroids today.
Cami Beck
46, Chapel Hill, North Carolina
I found out about my fibroids in 2018. I was talking to my personal care provider about how heavy my menstrual cycle was and the fact that it was lasting for 10 days. I was passing big blood clots and wearing a pad and tampon at the same time. She referred me to a gynecologist and he had me get an endovaginal ultrasound — that’s when I got the news. With the diagnosis, I got a better understanding of my symptoms and why they were happening. I wasn’t worried about fertility, because I wasn’t planning to have any kids, and luckily, it has not really affected my daily life. As for treatment, I’m on a form of birth control where I have my period every three months. My doctor also gave me options to think about, such as an IUD or having an endometrial ablation, and thankfully never tried to pressure me into a hysterectomy — I am very lucky. In terms of self-care, I’m very mindful of what I eat and drink, I make an effort to exercise, and also have started to soak in the tub to relax.
Jenelle Hamilton
Los Angeles
I discovered I had one fibroid over 10 years ago. The physician said it was nothing to worry about and it was “normal” for women to have these in their uterus. Little did I know that it would cause years of pain, discomfort, and misery. I became more tired, and I started feeling more down and depressed — and I am a typically positive person. They also added so much stress and anxiety to my life, since I never knew how the fibroids would impact my body on any given day, whether it be pain, bloating, or any other symptom. I started to experience heavy bleeding as part of my monthly cycle, to the point where I was nervous to leave the house the first few days of my cycle in anticipation of a bad leak. The pain was excruciating during my cycle and some days I would almost look pregnant, but I still had to function regardless. I had a demanding job and a busy social schedule.
For over a decade I took the holistic route, and tried to shrink the fibroids naturally: medically supervised water fasts, specific diets — plant-based, alkaline, or raw — sweating every day via exercise and saunas, weekly lymphatic massages, acupuncture, detox retreats and more. I tried everything, and they definitely helped, but could not completely solve the issue. Once my fibroids became dangerous to my health, I decided to undergo abdominal myomectomy surgery earlier this year, which has provided relief. But this cannot negate how emotionally exhausting this process has been — not to mention just how expensive the surgery is. Coming from the UK where health care is free, my mind was blown [by the costs in the U.S.] The price of surgery means that some people would have to rule out that option, and it shouldn’t be that way.
Danielle Gray
29,Michigan
My journey started in March of this year. One Sunday, I decided to take an hour drive to the closest IKEA with my mom. Before we got on the road, I used the restroom to change my sanitary items. The ride was fine and everything felt normal — until we got out of the car. As soon as I stood up, I knew I had a leak. In line for the restroom, I touched the back of my thigh and looked at my hand: three of my fingers had blood on them. As I ran to the nearest Target for new panties, baby wipes, and leggings, all I could think was “something’s not right… what’s going on?” The next day, I called my OBGYN’s office to make an appointment for an ultrasound. That’s when I found out I had uterine fibroids that were taking up half of my uterus.
The diagnosis didn’t scare me, since I’ve had other health challenges since I was young, but it was something I knew I shouldn’t ignore. Due to the extreme blood loss, I had extreme fatigue. I couldn’t get through the day without taking a nap. My primary care physician put me on iron supplements, and thankfully, that helped tremendously. In terms of treatment for the fibroids themselves, my doctor gave me three options: medication, multiple myomectomy surgeries, or a hysterectomy. I decided to go with the myomectomies. I had my first procedure in April and the following in early June. Aside from medical procedures, mindfulness has been a key part of my healing journey. To be in the moment and to do things that make me feel good is so important.
Danielle Prescod
34,New Orleans
I discovered I had uterine fibroids as I was freezing my eggs five years ago. They told me, “Not to worry, everyone has them.” Yet five years later, something seemed very wrong with me — and as it turns out, [the fibroids] had grown much bigger. I have yet to decide on treatment, because the fibroid diagnosis actually triggered another inquiry into a potential case of polycystic ovary syndrome (PCOS). I am waiting to see if I can get that diagnosis first, and then will decide on the best path forward. In the meantime, I have started seeing an acupuncturist to help relieve some of the symptoms.
In terms of self-care, I am treating myself like a Tamagatchi — seriously. I am really strict about my sleep. I take my vitamins, I eat really healthy and carefully, and I drink my water. I am trying to take over what I can control. Although uterine fibroids are so common, it’s shocking that Western medicine knows so little. It is a huge problem and so many other women have horror stories. Even when it comes to treatment options, they aren’t great. Plus, living in a state that has outlawed almost all abortions has really highlighted for me that there are crucial gaps in women’s health care—especially ones that affect Black women. Everyone cares about what you do with your uterus, except when it actually comes down to your health.
Shaquana Glymph
New York City
I found out I had uterine fibroids in 2014 when I felt and saw a bulge near my lower abdomen, and went to the doctor to get it checked out. My diagnosis was surprising, because my periods had been shockingly light, the opposite of what most women experience. However, it helped me understand why all my ab workouts weren’t effective — and explained why I suffered from anemia. Luckily, the masses didn’t affect my ability to get pregnant, but the fibroids caused lots of pain. Last year, I decided to undergo a myomectomy, six months after having my son. Post-surgery, my self-care routine didn’t shift much. I still prioritized hanging out with friends and enjoying life as much as possible. But I was surprised at my strength during recovery, considering I had numerous fibroids removed. There needs to be more education around this condition — whether you have fibroids or not. There are so many women with a bulging belly, and people just assume they’re pregnant — don’t assume. She may be walking around with numerous fibroids.
Whitney Wright
29, Washington, DC
The first indication that I had fibroids was when I had a protruding stomach, and suffered through a two-month period when I was 17. Since I was a virgin, the nurse and doctor didn’t bother to do an ultrasound and just placed me on birth control. I wasn’t officially diagnosed with uterine fibroids until January of 2019, when I was 25. My mother had fibroids removed to have me, so I assumed the diagnosis meant the difficulties my mother suffered — extremely painful and irregular periods, fertility issues, weight gain/loss with stomach size growth — were set to be in my future.
I had a myomectomy in November 2019 to remove some of the fibroids and a cyst on my uterus, but because a few of the fibroids were resting on my left fallopian tube I was told my fertility may be compromised. I’ve since been informed that I have a new set of fibroids that are growing. I might start a hormone treatment, but I am a bit hesitant. In terms of the day-to-day, the fibroids have caused random pains while working out, and caused body dysmorphia when putting on clothing due to the bloating, which makes self-care so important. I try juicing at home, and avoiding processed foods. Thankfully, after living with this condition for a number of years, I’m so pleasantly surprised at how much better I feel in my body now that I’ve been able to give myself some grace — that’s been a bit of a silver lining.
Tomeka Kolleh
33, Los Angeles
Before I got an official diagnosis, I actually suspected I had fibroids in 2020 and grew especially concerned when I learned both of my older sisters were diagnosed. My cycles were excruciating and painful on the first day, the pain I experienced felt as if someone was kicking me in the back. I also became anemic overnight, which has been a huge challenge for me. When I met with my OBGYN, I expressed my concerns and requested that I be checked. I was informed that my symptoms weren’t “severe enough,” and that I was perhaps just experiencing a heavy flow.
Fast forward three years, when I decided to begin my egg freezing journey, and on my first ultrasound I was informed that not only did I have a fibroid, but it was covering my ovary. Due to the placement of my fibroid, they were afraid they would not be able to reach my right ovary at all. I hyperstimulated during my egg freezing process, causing my follicles to not only double in size, but also in number. They were able to retrieve 37 eggs, but I was bedridden for a week to avoid my ovary rupturing.
I have not started fibroid treatment yet, since my body is still in recovery from the egg freezing. So for now, my main priority is to explore some options and figure out the best approach moving forward. Self-care now looks like remembering to take my liquid iron, lots of baths during my cycle to alleviate the back pain, massages when my body needs TLC — and let’s not forget my disposable heating packs. What has surprised me the most about this journey is that I was right about my symptoms all along, and I wish I had advocated for myself more. But regardless, I am proud of my body for pushing through the toughest of times.
Crystal Peters
36, Chicago
I found out about my fibroids in July 2022 while I was in Miami for work. Out of nowhere, I started experiencing severe pain. I couldn’t sit down or stand up comfortably. I went to the ER straight away and they discovered I had a fibroid on the outside of my uterus that was the size of a large orange. The diagnosis really shed light on the pain I was experiencing in my daily life. I had sharp pains, because the fibroid was outside of my uterus and was pushing up against my other organs, excessive bleeding during my cycles, as well as breakthrough bleeding. I was lethargic and drained.
After the diagnosis, I immediately rushed to see my Black gynecologist to discuss my options. Ultimately, I received an abdominal myomectomy which is similar to a C-section. The recovery was pretty painful, but about a year later, I am healthy, free from pain, and the amount of bleeding has decreased tremendously. When you are bloated, exhausted, and in constant pain it is hard to feel like yourself. But even before I got my surgery, I would make sure to prioritize getting sufficient rest, and do small things to make myself feel good. For the women who are just starting this journey, it’s so important to know you’re not alone. Talk to the women in your life that you trust — many are likely experiencing the same thing.
Marina Beck
41, Los Angeles
I discovered I had fibroids during an annual visit to the gynecologist. I knew something wasn’t right and told my doctor how I was feeling. After an ultrasound, she told me the news. It definitely explained the cramping I experienced, even when I wasn’t on my period. I was also dealing with lower back pain, fatigue, discomfort during sex, and pressure on my bladder. It eventually got to a point where the amount and sizes of the fibroids were affecting my fertility. Things have gotten better after getting a myomectomy back in 2018. My doc removed a ton of fibroids that varied in sizes, with the largest about the size of a cantaloupe. I still experience some symptoms — but not as severe as it once was. In terms of what I do for myself, working out and making minor changes to my diet has made a huge difference. I recently cut down on my sugar intake and have incorporated more anti-inflammatory foods into my diet. I’ve noticed it’s helped with cramping and feeling bloated and puffy.
Ehime Eigbe-Akindele
Washington, DC
In 2009, I had been feeling pressure in my lower abdomen and scheduled a doctor’s visit. I was 22 at the time, so the diagnosis was shattering: My doctor said I would need to have children within a year if I wanted to have surgery to take out the fibroid. At the time, I was experiencing painful periods, and would experience bleeding randomly, which would sometimes soak my chair at work, leaving me feeling embarrassed. As I’ve been on this journey, I’ve been quite surprised at how many women suffer from fibroids and the impact it has on our lives. My sister also has the condition, and after accepting a prescription from her OBGYN to take birth control pills in order to reduce the fibroid size, the masses instead grew larger, and resulted in more extreme bleeding. With this in mind, I’m currently trying a holistic approach. I started eating better by focusing on proper nutrition and cutting out a lot from my diet.
Brittney Oliver
34, Nashville
I discovered that I had uterine fibroids when I was 25 during an annual visit with my doctor. I had no symptoms at the time, but when she told me, I felt like life got real and that I would need to start thinking about my fertility and my future. With no current partner and confusion about my career, the diagnosis overwhelmed me. Soon after, my period started to become really heavy — to the point where I had to get up in the middle of the night to change my pad. The fibroids also transformed how I looked. My stomach was big and I had discomfort wearing jeans with the button sitting right on top of a big fibroid.
When it came down to treatment options, I would have preferred a radiofrequency ablation (RFA) or any other laser option for a faster healing time, but nearly a decade ago in Tennessee, the only option I had was the myomectomy. Things have changed since, but it was pretty much impossible to find a doctor who performed RFA for fibroids there. I did try to get a second opinion at a hospital in New York City, but they wouldn’t take my insurance, so there really wasn’t much I could do. In terms of my own self-care, I’m intentional about moving my body more, and I’ve cut down drinking and sugar intake. There’s so many things you learn while living with fibroids, but the most surprising thing for me was realizing how many Black women are affected — I’m blown away by it. It’s like the severity of this is overlooked. It’s almost as commonplace as a Black person saying they have heart disease, and I don’t like that. When we start acting nonchalant about it, so do our physicians and it reflects in the care we receive.
Joylynn Johnson
45, Las Vegas
I discovered I had fibroids in 2014 after getting the results back from my annual gynecologist exam. For me, it cleared up why I dealt with painful periods for much of my adult life. That same year, I had a myomectomy, where they removed three masses that measured in two-and-a-half to eight centimeters and weighed 132 grams total. Basically, imagine having one the size of a strawberry, one the size of a peach, and one the size of a grapefruit, sitting in your uterus. I still have a handful of fibroids in my uterus that are too small to warrant another invasive procedure, but will need to be monitored.
Self-care for me looks like finding doctors who are specialists in fibroids and hormone replacement therapy to help me decide on the right treatment. What has surprised me most about the journey is that there’s no one to really talk to after this type of major surgery. I went into a deep depression after my myomectomy because I gained about 45 pounds, and my hormones were out of whack. It also messed with me mentally because now I’m at a place where I have to decide if I want to have kids or have a hysterectomy to finally get rid of the fibroids. Even though I’m 45, kids are something I’m still trying to figure out — but this year the decision may be made for me, based on my next round of test results. I wish that in addition to sex education, we taught our young girls about hormones and their bodies. So many of us suffer in pain thinking this is normal, but if we teach them early on, we can help so many girls with not only about fibroids, but many other reproductive conditions.
Camille Easy
38, New York City
I found out I had a fibroid at the end of 2014. A few weeks before my annual doctor’s appointment in the fall of that year, I started experiencing really sharp pain in my lower abdominal area, and I could feel a solid mass when I applied pressure. Following my annual physical, an ultrasound, and MRI, my doctors confirmed that I had a fibroid and it would need to be surgically removed. As someone who at the time experienced severe menstrual cramps, I was somewhat relieved to have an explanation as to what was causing this pain, but also scared due to the size of the fibroid — it was the size of a grapefruit — and knowing that I would require surgery to remove it. I was also worried about scarring on my uterus as a result of the surgery and what lasting effects it would have. I felt very bloated most of the time, and really uncomfortable in my body. Thankfully, a few months after my diagnosis, I had laparoscopic surgery to remove the mass, and all went well.
Through this journey, I have definitely become more in tune with my body and pay close attention to any changes. I also make sure to schedule annual appointments with my gynecologist. But what surprised me the most was finding out that a number of women in my family had fibroids, how common it is for Black women, and how little it is discussed widely. And I learned a few more surprising things about my body during this journey, too: Post-surgery, my doctor confirmed that I had endometriosis, something that I had suspected for a while due to the years of severe pain during my menstrual cycle. I also found out that I am prone to keloids, which appeared post-surgery in the areas of the incision to remove my fibroid. Something else we should be discussing is what scar treatment looks like for Black women with uterine fibroids.
Debra Edwards
41, Kingston, Jamaica
Around three years ago, I noticed my period was a lot heavier, longer, and more painful than it had been before. A scan showed I have a fibroid pushing against my uterus. I knew something was wrong, but this confirmed what I was feeling was actually happening to my body. Right now, I’m not sure if it has affected my fertility, but having fibroids can be debilitating. Not only are my periods painful and heavy, but due to the blood loss I have become severely anemic. And with anemia comes a myriad of other issues: weakness, fainting, lack of concentration, and more. In February, with a hemoglobin level of six, my doctors were so concerned they were about to give me a blood transfusion. Instead, I went on a strict routine of prescribed iron supplements and have changed my diet to include a lot more green leafy vegetables and meat, which has helped raise my iron levels without the transfusion.
My doctor and I have tried many things — and originally I didn’t want a myomectomy, so I was willing to try anything else. With my anemia, my doctor suggested “shutting down” my period for a couple of months, which would allow my body’s hemoglobin levels to build. In order to do this, I could either take an injection or go on a hormonal pill similar to birth control, but experienced some really negative side effects. I ended up getting a second opinion recently from another local gynecologist who had me do a transabdominal and transvaginal scan. I found out I had four visible fibroids, with the largest measuring 6.5 cm. This particular doctor recommended surgery to remove them, and while this isn’t what I initially desired, these fibroids have negatively impacted me for too long — so I’m going to do it as soon as possible.
Jessyca Mathews
42, Burton, Michigan
I was diagnosed with my first fibroid at 25, and it completely changed my life. It has been a life filled with pain, chances of embarrassment, and the possibility of no children. At first, the treatment options I was given were always surgeries. I’ve had a total of 10 for all my reproductive issues — with four focused solely on fibroids. Currently, I have three fibroids; one is embedded in the inner lining of my uterus. I now do treatment with the University of Michigan’s pain management team, and I can’t imagine life without massage therapy and stretching. It is a core part of giving myself temporary relief. In terms of self-care, giving myself grace has made all the difference. I have accepted that it’s alright to have a day on the couch, cuddled up with my blanket. Although this is such a common problem in our community, it’s disheartening that uterine fibroids are not spoken about as openly as they should be. Even I went through a span of time suffering in silence. But now, I am strong enough to share my story. Through being open, I’ve met others who have been strongly affected by reproductive issues, especially women of color, and we’ve built a supportive community.
Anonymous
44, New York
I discovered I had fibroids in 2019 during a routine check. I didn’t have any symptoms at the time, and my period had been pretty consistent since the age of 12. However, there was a point where I had my period for about three weeks — but I brushed it off as being stress-induced. Because I didn’t have severe symptoms, I didn’t seek treatment until I decided to freeze my eggs in 2022. The fibroids had grown to the point that the growth of the eggs were affected, and I ended up with only three eggs. When I went back a few months later to do another round, I was 40 at this point and given how expensive the previous round was for me — I paid over $15,000 for one round of egg freezing and medication — and the disappointing outcome of only three eggs, I decided not to do it again. I was also told that if I do get pregnant, there is a possibility I will have difficulty carrying and during labor, given the placement of the fibroids.
Motherhood aside, the masses make sex painful. And even if I wanted surgery, having crappy insurance doesn’t help with the cost. With this condition being so common, I’m shocked that there’s not more conversation around it. I really believe there needs to be more awareness for both women and men. Men are incredibly ignorant about how it affects us, especially when it comes to pain during intimacy and the impact on fertility and delivery. Also, how do we prepare younger women and educate them on how to take care of their bodies? They should at least be aware of what’s going on and what can happen in the future.
Lauren Napier
43, New York City
I discovered that I had fibroids in my early 20s, and since then I’ve taken both medical and holistic approaches to managing my fibroids. Some of the symptoms I’ve experienced include debilitating cramping, back and thigh pain, heavy bleeding, eight to 10 day periods, discomfort during sex, and disruption in work and my social life. I would RSVP to events based on where they fell in my menstrual cycle. Vacationing on my period was inconceivable. I had a wardrobe for the preceding week of my period, a wardrobe for during my cycle, as well as different sheets and towels to manage blood spill while on my period. I felt that I was missing out on life, experiences, and opportunities. I felt I was under attack by my own body.
I have done all of the treatments that were available to me including herbs, teas, yoni steams, two laparoscopic myomectomies, uterine fibroid embolization, and finally decided on a laparoscopic hysterectomy. When I realized that I felt less pain recovering from the hysterectomy than I had while on my period, that’s when I knew something was very wrong. I wish I had made the decision sooner. Post-surgery, there is no greater form of self-care than the freedom I’ve afforded myself. Today, I will spontaneously decide to take a vacation, take a walk, practice all of the positions of the Kama Sutra, or sleep on my sofa without fear of an accident, pain, or embarrassment.
Lamanda Ballard
Austin
In 2021, I began noticing a hard mass in my lower abdomen when I laid down in bed. Assuming it was body fat, I spent months strengthening my core only for a bulge to appear and cause me to hit a plateau in my fitness journey. Through an ultrasound I learned I had multiple fibroids and the largest was the size of a grapefruit sitting on the outside of my uterus. My diagnosis explained why I was experiencing high-functioning depression, memory loss, weight gain, and bad menstrual cycles; all while trying to show up to work every day like nothing was wrong. It created a stressful life for me to the point where I rarely functioned outside of my home. I eventually opted for a combination surgery, Acessa and laparoscopic myomectomy.
Post-operation, I show up for myself daily by balancing my hormones through diet, fitness, and taking supplements. Being intentional about what I eat, moving my body more, therapy, and creating healthier habits have all helped me through my journey. And the more open conversations I have with my peers about my fibroids journey, the more I realize there’s a lack of education in understanding our own bodies. But through this, I’ve learned to advocate for myself at the doctor’s office. I had to speak up multiple times before my physician took my concerns seriously and allowed me to get an ultrasound. No one knows your body better than you so if you don’t advocate for yourself, your concerns will often go unheard.
Interviews have been edited and condensed for clarity.
*Current studies are not inclusive of the gender spectrum. We use the term “women” to align with available data, which focuses on cis women.
Source URL: https://www.allure.com/story/black-women-uterine-fibroids-stories