In the United States, an estimated 26 million women between ages 15 and 50 have uterine fibroids. However, many women aren’t aware that they have these usually noncancerous tumors. What’s more, even when they experience symptoms triggered by fibroids, such as heavy and prolonged bleeding, pelvic pain, and other health issues, many women perceive these to be a normal part of their menstrual cycle. Such was the case for Eugenia Buie, 43, a customer service representative, who was diagnosed with fibroids at age 21. Real Health talked to Buie about her journey with fibroids. The conversation has been lightly edited for clarity.
Real Health: Were you having symptoms when you were diagnosed with fibroids?
Eugenia Buie: At my first ob-gyn visit, my doctor said that she noticed I had fibroids. She said it wasn’t anything for me to really worry about and that they weren’t that big. I was given Loestrin birth control pills. My cycle was heavy, but I thought it was normal because all the women in my family had heavy cycles, so this wasn’t something I thought of as being uncommon. Also, we really didn’t talk much about that type of stuff. I let my mother know, and she said, “Just make sure you check on yourself often.”
Were any of your female family members ever diagnosed with fibroids as well?
In my late 30s, I found out that my older sister had fibroids. She ended up having a hysterectomy. We didn’t talk much about it. I knew she was in the hospital, but we really didn’t get in depth with the conversation.
What happened with the birth control pills?
I never took them, because the doctor told me there was nothing to worry about. That’s what stuck with me. Plus, I wasn’t the type of person who liked taking any form of medication or pills. At that point, it didn’t seem like something that I needed to do.
How did you learn that the symptoms you experienced during your menstrual cycle were not normal?
My cycle at that time was about seven days. When my cycle first started, I believe I was 9 years old, and it lasted about three days. During my teenage years, my cycle was five days. By the time I began seeing my ob-gyn, my cycle had increased to seven days, and the cramps were consistently painful. I also began having migraines and experiencing anxiety attacks. That is what caused me to wonder what was going on with my body overall. But I never knew these problems had anything to do with fibroids. I was told that I could not drink coffee. I was addicted to caffeine. No one said that the anxiety attacks had anything to do with fibroids. But later in life, I found out that they actually did.
I had begun passing out quite often; it became something that I would just brace myself for. It was no longer like a fear thing. It was more so to make sure I was in a space where I wouldn’t get hurt when I passed out. That’s how normal these anxiety attacks became. I used to work for a youth center. Once, we were on a college tour and meeting with a group of kids about what we were planning to do and where we were getting ready to go, and during the meeting, I passed out. Everybody was so nervous and scared, but for me, it was normal.
Another time, I got up to take my nephew to the bathroom and passed out while I was taking him to the bathroom. He was about 3 years old, and I became really fearful because 1) for him to see something like that happen at his age and 2) I could have hit my head on something. That really made me feel concerned that something was not right with me. But every time I would go to urgent care or when I went to the hospital, they would tell me something vague.
When did you experience a turning point in solving this mystery?
This year, after passing out yet again, I was told that I was dehydrated and given a full-spectrum blood workup. When I went to visit my ob-gyn, she called me the next day and told me that my test results had come back showing that my hemoglobin level was at a 3.6 [grams per deciliter]. [Editor’s note: The healthy range for a hemoglobin count for women is 11.6 to 15 grams per deciliter.] She told me that I needed to get someone to take me to the emergency room. She said, “I need you to go right now—you need to have a blood transfusion!” This took place in March 2021.
When I told them why I was at the ER, they put me in a room right away. That made me a little more panicky. At this point, I wondered, Am I dying? And so naturally, from all of this fear, an anxiety attack started to come on. When we sat with the doctor, the doctor said to me, “I don’t know how you’re still alive.” They gave me three units of blood, and the doctor stressed that I needed to do something about the blood loss caused by my fibroids.
She explained that the blood loss caused by the fibroids was causing me not to get enough oxygen to my brain, and this was causing the panic attacks. I never knew that fibroids could affect anybody that way. But, unfortunately, my doctor could no longer see me because my insurance had changed, so I had to find a different doctor.
During her search for a new ob-gyn, Buie experienced another panic attack, and her menstrual cycle lengthened to 25 days. Once again, she was forced to seek care at the ER. This facility was closer to her home and accepted her insurance, so she was able to schedule an appointment with a new doctor.
What happened at the first visit with your new ob-gyn?
A hysterectomy was the first thing she offered me. After I asked her if that procedure was the only option, she said I could have a myomectomy—another surgical procedure that removes only the fibroids and leaves your uterus intact. But the fibroids can return within five years. But I really didn’t want to have to deal with fibroids again.
Interestingly, during the time between the blood transfusion and my procedure, I happened to watch The Real Housewives of Atlanta. Coincidentally, this episode was the one about Cynthia Bailey’s experience with fibroids. The program showed her going to her doctor and talking about uterine fibroid embolization (UFE), a procedure used to shrink fibroids. In that episode, I noticed that after the treatment, she no longer had to struggle with this problem.
I had never heard of uterine fibroid embolization in my life, so I googled Cynthia Bailey’s UFE procedure and found a blog she wrote about it. After that, I began to research the procedure, so when my new ob-gyn mentioned a hysterectomy and a myomectomy, I asked her, “What about the UFE?” She looked at me as if she saw a ghost. The look on her face was like, How did you know about this? Who told you? It was like this was the best-kept secret. And so I’m looking back at her not talking; we’re having an eye conversation, right? Then she said, “Oh, that’s just not really the procedure I would recommend, and we don’t do that here. You would have to go somewhere else.”
So I asked her, “Do you know who does it?” She said, “You would have to go to a radiologist. I don’t really know, but maybe I can link you to someone.” She was definitely taken aback when I mentioned the procedure, and she strongly suggested that I have a hysterectomy because of my age. She said, “You’re 42 years old. You’re not really planning on having any children, are you?” I told her, “Well, I’m not sure. I may want to.” Then she repeated my age. I told her, “I know UFE is possible, and I don’t want to take away my reproductive function just in case I may want to have kids a little later.”
Then she told me that there was somebody that performed UFE in that location, so I asked her to give me as much information as she could. That’s how I ended up scheduling the UFE procedure despite only getting the other two treatment options offered to me. I felt like UFE was something that—for whatever reason—those doctors didn’t want people to know about. But I also felt that if Cynthia Bailey could come out on top and be well after this procedure and still have her uterus intact, I would give this a shot. Why are some doctors keeping this from us? Is it because doctors don’t benefit from this procedure, and so maybe that’s why they don’t want people to know about it? This is why I think that it’s very important for women to research all available options for fibroids treatment.
I researched UFE and found out that this procedure has been around since the 1990s. That’s almost 40 years, so why have doctors only just now began talking about UFE? Currently, everybody’s talking about fibroids, which is a beautiful thing. This procedure that shrinks uterine fibroids has been the best-kept secret. But I’m glad that the secret is finally out now.
How did you become an advocate for uterine fibroid awareness?
In July, the month that I had my procedure, I went to an event with my friend who invited me to this dinner that was being hosted by USA Fibroid Centers and the Fibroid Fighters. The following day, I went to a speaking engagement at a church, and I was able to share with the women there in just a few seconds that I had just had the procedure that they were talking about. I told them about the episode of The Real Housewives of Atlanta with Cynthia Bailey and how I ended up having the procedure and how great I felt. Staff from the USA Fibroid Centers were there as well, so we ended up having a conversation, and they asked me to join their team. I joined them in August of 2022 and became a Fibroid Fighters ambassador. They ended up actually creating a show for me on Instagram where I go on live to talk to women on social media about fibroid awareness, share my story and discuss different things that they can do to address their fibroid problems. I advocate for them and let them know that there’s nothing to fear. We don’t fear fibroids; we fight them. Right now, I’ve been in this fight for almost a year.