Breaking the silence on fibroids and empowering women with UFE

Episode Transcript

Recorded live from Cook Medical and featuring leading experts in the field of interventional radiology, discussing a wide range of IR-related topics, this is the Cook@ SIR podcast series.

We want to welcome everybody today to the Cook SIR podcast. It’s going to be an amazing podcast today. I’m so thrilled to have a patient and Ms Black USA 2025, Elizabeth Perry, co-hosting with me today. We’re going to talk about fibroids. We’re going to talk about this amazing procedure, UFE, that despite being around for 30 years, most women don’t know about it. So, we’re going to jump right in. I’m so happy to be here. I’m Dr. John Lipman. I’m the founder and medical director of the Atlanta Fibroid Center. And welcome, Elizabeth. Tell us about yourself, and we’ll go from there.

Fantastic. As you stated, I am Elizabeth Perry, the current Ms Black USA 2025, but I’m also a doctoral student studying to be a family nurse practitioner who realizes I have a commitment to women of color in my community to stay well versed in this area. And I can do so because I’ve been a patient, I’ve been a survivor, and I have a story to tell that I’m hopeful will move people to take action.

Well, your story is very compelling and we’re going to jump into your story. We know that fibroids are a very common condition for all women, adult women, but particularly women of color disproportionately suffer with these benign fibroids. Some say at least 80% of adult African American women have these fibroids. What was the moment that you realized your symptoms weren’t normal? Because we see a lot of patients in the office that have been bleeding, let’s say, for a long time, and they just think it’s their normal. When did you realize you needed to see medical attention?

Dr. Lipman, that is a very interesting question because in the African-American community, oftentimes our mothers and our grandmothers and our aunts suffered from fibroids, but they didn’t know what it was. And because they had children earlier, it resulted in early onset hysterectomies. So, when I approached my mother with the symptoms that I was having, she was able to relate to me, but her only solution was to wear an overnight pad or to eventually have a hysterectomy. So, I didn’t have that parental guidance that I may have needed, but it wasn’t to her fault. It was because of generational curses of not being aware of what’s happening with your bodies, not knowing the anatomical, physiological things that are occurring that causes this morbidity over your life. So, for me, I think when my blood transfusions started to exceed my monthly menstrual cycle, I knew that something was happening that needed to be followed up upon.

So, I remember just bleeding and feeling as if I was hemorrhaging almost and not knowing what to do. And this started in 2003, so almost 23 years ago, even though UFE was around, my doctors did not know about it. It wasn’t even an option for me. So I tried Lupron, and I tried Mirena® and eventually had a surgery, a myomectomy. But for me, to answer your question, it’s when I couldn’t walk five feet without holding onto a wall. And when my heart pounded out of my chest because my ferritin was two and my hemoglobin was five, and I was having two and three blood transfusions a month just to survive.

Well, you described the most common symptom that we see is heavy bleeding. Fibroids are the number one reason why women have heavy periods. And yet it took extreme example of bleeding so horribly and requiring blood transfusions for you to seek medical help. And one of the things that we want to educate people on what’s abnormal as far as their bleeding, because as you saw, it took a pretty extreme example for you to come forward. We’d like women to realize when their periods are not normal, because a lot of times, as I say, people even will tell me, “Well, are your periods normal?” “Yeah, they’re normal.” But if you don’t dig into it deeper and ask, “Well, how many pads are you changing? How frequently do you see clots? Are you afraid to sleep on your girlfriend’s couch? Are you afraid to soil clothes or linens in blood?” You’ve got to dig deeper because oftentimes people just think, “Well, yeah, it’s normal. That’s normal for me.”

Well, that’s not normal. You were hemorrhaging and you also saw the result of that, which is you become anemic. It’s a deficit of iron and hemoglobin, and hemoglobin is what carries oxygen around our body. So, these women that run these deficits, they’re bleeding so much that they can’t possibly replace it, they become tired and fatigued. This anemia will cause women to have migraine-like headaches. They’ll sometimes chew or crave ice or sometimes chew inedible things, corn starch, dirt, clay, chalk, flour. Those are very important signs of anemia. You also mentioned palpitations. So, these clinical signs of anemia should alert women that that’s not normal. But the simple thing is, I’ll tell patients, if you’re bleeding such that it’s interfering with your quality of life, it doesn’t matter what your hemoglobin is. That’s not normal, and seek out medical attention for that.

And if it’s due to fibroids, we have some great ways to treat fibroids. You saw some of the medical therapies, whether it’s progestin-containing IUD like Mirena, or it’s birth control, but unfortunately these medical therapies don’t work very well. Or if they do, it’s temporary because while we don’t know where fibroids come from, and that’s a problem, we know they grow with estrogen and progesterone. So, what’s in birth control, what’s in a progestin-containing IUD? Hormones. And so, while it might lighten your flow for a little while, in the background, it’s like pouring gas on a fire. It’s stimulating these fibroids to grow more rapidly than they otherwise would, and then it no longer works, and that immediately transitions to surgery. And we’re hoping to put UFE in between there so that women don’t automatically get knee-jerked to surgery. As you did, you had a myomectomy, which is surgically cutting out some of the fibroids, and that’s one of the Achilles heels of that surgical procedure, or hysterectomy.

It sounds as if you held a mirror up to me and just recited everything that I’ve experienced in my life. In addition to that, a lot of women have psychosocial concerns because it’s a mental health concern as well. As women, we worry about being able to have children, and the fear of saturating our clothing or not being able to engage in social activity or just not being in control of your body. I think that the narrative needs to change. Medical professionals need to bring this conversation to patients who are unfamiliar with their options. Also, women need to have the autonomy to do their research. 20 years ago, I didn’t know to look into other options. I solely trusted my provider to direct me on the right path. So, I asked you, Dr. Lipman, with fibroids affecting so many women, and despite it being around for so many decades, women never hear about it. Why do you think the awareness is so low? What can we do about it?

Well, we can talk about some numbers first, and then I’ll go into why women don’t know about UFE, the non-surgical outpatient choice for fibroids. So, just to throw some numbers out, hysterectomy is the second-most-common surgery performed in the United States. That’s kind of staggering to me because half the population doesn’t even have a uterus. The most common reason why we do hysterectomy is fibroids, not cancer. If you have uterine cancer, hysterectomy is appropriate, but we’re doing hysterectomies for benign fibroids. They cause a lot of misery, but these are benign non-cancerous tumors. The average age of hysterectomy in this country is less than 40. And I’ve met way too many women, less than 30 have already had a hysterectomy. It’s tragic and completely unnecessary. So, we have to ask a question that may be a difficult one. Why are physicians essentially amputating young black women for benign disease?

And so, while it could be uncomfortable for the gynecologist, that needs to be addressed, that needs to be answered because there is no reason to do a hysterectomy for benign fibroids. It is an option, but in my opinion, it is the option, or should be the option, of absolute last resort. Well, why are hysterectomies so common, and why is UFE unheard of even though it’s been around 30 years now? It’s been well-proven, safe, and effective. It was endorsed by the American College of Obstetrics and Gynecologists back in 2008, 18 years ago. We started doing it in the mid ’90s. So they finally got around to it in 2008. They gave UFE the highest level of medical evidence, level A, but yet the rank and files still don’t mention it to people. I mean, women are entitled to know all the options, not just the surgical ones.

And the reason— Gynecologists are the gatekeepers of women’s health; they’ve unfortunately done a very good job of keeping UFE under wraps. You have to know about it, and that’s wrong. You should tell women all the options, not just the surgical ones that you can do. And that’s a big problem. And I want to thank Cook, while I remember it. Again, thank Cook for this podcast today. I’m hoping this will be really helpful information for the women that view this. They will see that there are these other non-surgical options that are outstanding for caring for women with fibroids.

Absolutely. It’s debilitating. It is beyond debilitating. And one of the things I can attribute to my GYN doctor, Dr. Melinda Miller-Thrasher, who works close by you, Dr. Lipman, when my fibroids return after myomectomy and she wanted to do a myomectomy again. And I had a pelvic ultrasound. I had done everything but an MRI and she paused, and she paused and she remembered you. And one phone call, you offered me a consultation. And because of that, it became life changing for me because I remember walking into your office, and, after having an MRI, you were able to see things that my GYN could not see on ultrasound. And you told me had she opened me up again for a myomectomy, she would’ve had to close me right back up.

Right.

Because I also have adenomyosis. And for black women who hear the word “fibroid,” they automatically then associate that with hysterectomy and abnormal bleeding.

But there are other components to the location of fibroids, the type of leomyomas, adenomyosis, that can change the narrative around your treatment. But if you don’t have that information to make a well-informed decision or a provider who advocates for you to tap into additional resources, you could be someone like me who almost went back to surgery for a surgery that would not have been beneficial for me. But because of Dr. Lipman, I was able to have a procedure that totally changed the outcome and the trajectory of my quality of life.

Well, yes, you had fibroids. You also had adenomyosis, which is a condition. The lining cells of the uterus are called the endometrium. And when the endometrial cells are found outside the uterus, that’s a condition called endometriosis, and people are pretty familiar. They’ve heard that term. They’ve often haven’t heard about when the lining cells just infiltrate into the muscle of the uterus. By definition, because it’s still in the uterus, you can’t call it endometriosis, even though that’s what it is. They had to give it its own name, adenomyosis. And unlike fibroids, you really can’t remove them surgically. You can remove the uterus, but you can’t cut out— The adenomyosis is too diffuse. It tends to be difficult or impossible to see surgically. And so it has symptoms that are very similar to fibroids, namely heavy bleeding and pelvic pain, but you really need an MRI to make the accurate diagnosis.

I see patients all the time that have been told they had fibroids, and they either don’t have fibroids at all, or they have fibroids that are kind of minimal, but the adenomyosis is the main story. And so, fortunately, we can use the same procedure that we do with fibroids, this uterine fibroid embolization procedure. We can also use it for adenomyosis, and it works very well, too. So, that’s good news, but you got to have the right diagnosis to know what you have. And we just don’t rely on ultrasound. The resolution compared to MRI is dramatically lower, and it misses adenomyosis all the time. But one other point that you made that I really think is important is the mental aspect about women suffering with fibroids. As a physician, I knew about the physical aspects of it, the anemia, being tired and weak and fatigued, and the physical aspects of suffering with fibroids.

But what I didn’t understand initially was the mental aspect, and you brought that up. And I think it’s really important because women will face this month after month, this dread. Everything they do or don’t do revolves around this miserable period, whether they can work or not, whether they have relations or not, whether they can go out with their girlfriends, whether they can swim. Whatever they do or don’t do, everything revolves around this period. And then each month they, “Oh, here we go again.” So, there’s this mental fatigue and drag on them. And also, oftentimes, our patients are trying to hold down a job, and they may be, say, the only woman in the workplace, or maybe they’re the only woman of color in the workplace. Because men, let’s face it, they don’t understand about periods. They don’t want to know about it. All they want to know is, “Are you doing the job?”

And if they see a woman getting up all the time, going to the bathroom, not doing their work or missing work, having to call out, that’s what they understand is that. And so the woman has to bear this burden of, “I’ve got to just push through. I can’t let the team down because if I let the team down, they’re not going to hire another woman or they’re not going to hire another woman of color.” So there’s this huge mental piece of this that goes along with the physical aspect.

It absolutely is. In social isolation, I remember working as a flight attendant in 2007, I believe, and I was releasing my passengers off of the plane, and I had on a super plus tampon, an overnight pad, and a Depends. And I hemorrhaged so badly that it pulled down my pants and made a pool on the floor of the airplane. And I had to maintain that position of professionalism to deplane my passengers all while holding on, hoping that I wouldn’t pass out. And what do you do when you’re miles away and no one understands and there’s me and a pilot? What do you do when this is a normal for you? What do you do when you can’t make it to the hospital because there’s no one to drive you? You can’t walk two steps. You’re shaking as if you’re having Parkinson-like tremors. When my hemoglobin would drop too low, my body would just shake, and I would just shake.

My mental capacity was unable to focus, and I felt physically depleted. What does that look like for a woman? And then if you ask that question, what responsibility do we have as providers to change that narrative? So, I think that there needs to be some serious accountability, not just for women recognizing their options and being autonomous enough to make informed decisions, but what role do interprofessionals have in making certain that the community is aware of what options are available and when hysterectomy is not the only option? Insert podcasts like this and opportunities like this, where you’re informing not only the desperate woman, not only the woman of color, but you’re informing doctors and interventional radiologists who can take on the responsibility to do something different so that women don’t have to share my same story. It’s not fair.

Yes. And I’m an interventional radiologist, so gynecologists don’t perform the UFE procedure. So, uterine fibroid embolization, or UFE, is performed by a different set of medical doctors called interventional radiologists, and that’s a really important thing to know. So, you’ve got to get that second opinion, but you first have to know that that option even exists. So, how do you think in your journey it would’ve been different if you had known about UFE from the beginning and not toward the end of your journey?

That’s a good question. Dr. Lipman, I look back and— 65 blood transfusions. I stopped counting at 65. 65 blood transfusions I’ve had before I stopped counting. I’ve had anaphylactic reaction to iron. I’ve received iron just fine. And then I got a second dose of iron, and my body rejected it. And I lost my airway, and they almost intubated me. The fear of knowing that this condition has— had taken such a toll on my mental capacity, my physical well-being. Even after having my myomectomy, I remember feeling warm, even feeling as if I was still bleeding, because psychologically I had been bleeding for seven years continuously, 30 days straight, maybe five days off, and then I start 30 days again bleeding. Countless admissions. So, how would my life have been different? I would have had a better quality of life. I would have been more self-assured of myself because at that time I was only 23 years old facing this condition that took over my life.

I was concerned about having children. I was concerned about my fertility. I was concerned about acceptance from a spouse. I was concerned about being able to be a mother. I was concerned about being able to hold a professional position because I needed to take so much time off because I continued to get admitted to the hospital. Now, fast-forward to 2021, and I meet Dr. John Lipman because of my wonderful GYN doctor, Dr. Melinda Miller-Thrasher. And I had a procedure by the most proficient interventional radiologist and a wonderful staff who, after a very minor procedure, changed the complete narrative of how I exist today. Now, it is as if you turned off a faucet. So, this faucet gets turned off, and your fibroids literally just kind of melt away. But then the work starts because you’ve been favored to have this wonderful intervention, but you have to undo 20-plus years of the debilitating mental, physical, and emotional turmoil of untreated fibroids.

So, even after my procedure, it took me time to have confidence in the success of my procedure. It took me time to feel reassured that I didn’t have to still wear Depends. It took me time to look at myself and feel confident that I didn’t need to see my hematologist every month now. Now, I’m checking in every six months, and now every year. So, UFE, for me, was just tremendously life changing. Because of it, in part, I am now Ms Black USA because it was a catapult to give me a voice to want to advocate for women who suffer from this same debilitating illness. And to say that I’m grateful would be an understatement, but even in receiving the information from Dr. Miller-Thrasher and even in receiving the procedure from Dr. Lipman, as women, we have to be okay with not being okay.

And we have to understand that, even though our life may not take the pathway in which we may desire, that we will regain control. And when we do regain that control, we have to step into a position of advocacy to make certain that other women do not share the same journey or pathway, towards a realization that could equate to a better quality of life. All the things that I could have experienced earlier had someone given me the resource to do so, now I have that responsibility to ensure that I inform, educate, and reassure the next woman that there are options beyond taking away your uterus. So, thank you, Dr. Lipman, for that.

It’s what keeps me coming to work every day, I assure you it’s the fuel that keeps me going. But I don’t think it’s hyperbole to say that the UFE, uterine fibroid embolization, procedure changed the trajectory of your life.

Absolutely.

I don’t think you could have accomplished all the things that you’ve accomplished since then without it. And so, UFE can change the trajectory of a woman’s life. You can transform people that are suffering miserably to someone back to normal to be able to achieve all that they have the potential to achieve. And the other point about this is that— There was a study back in, I think 2013, 2014 from the Mayo Clinic. They looked at about a thousand women suffering with fibroids. And the mean time to treatment where these women were suffering, as you were, was three and a half years. A quarter of them waited over five years to be treated. And people at the Mayo Clinic couldn’t understand why they were waiting so long, suffering as you were. And when they talked to them about that and drilled down more specifically, they didn’t want surgery, and I don’t blame them, because a lot of it was hysterectomy.

They didn’t want any surgery, and they weren’t told about UFE. And so this information has been withheld from women for far too long, and it needs to end. You are the CEO of your own body. You know your body better than anybody else. And you said important things about advocating for yourself, which is absolutely true, but the gynecologists have an obligation to mention all the treatment options, not just some of them, not just the surgical options. UFE, in my opinion, is one of the biggest medical breakthroughs for women. I put it up there in terms of significance to women with the Pap smear and the mammogram. It’s that significant and that transformational, as you have witnessed. And it’s so important for all women to know about this. There are over one million women in this country right now suffering on the sidelines. We call them the silent sufferers.

They’re having horrible symptoms. They’re just pushing through. They don’t want surgery, and I don’t blame them, but they’re not being told about UFE, so they just suffer with it and push through as you did. And it’s so unnecessary and we’ve got to stop this.

We absolutely do. And I think, specifically what I believe, with women of color specifically, I think really generationally we keep secrets. Our families don’t communicate as much as we should about pertinent issues, and changing the narrative— my generation of women can change the narrative for our children and our children’s children. So, as a provider—in six months, I will be someone’s provider—and I now have the knowledge to know that I have a call to action to be able to take an active role in that change, to change that narrative so that women are aware.

I’m hopeful that whomever listens to this podcast will then change their narrative because when you know better, you do better. So, this podcast is not only about my tumultuous story, it’s about advocating. It’s about enhancing your opportunity. It is about taking accountability for your responsibility as a provider to make your patients aware of all of their options, so that they can make a well-informed decision because the alternative is a life-changing surgery that takes away your ability to have children, that adds the need for hormone replacement, that changes the narrative of regards to intimacy and how we see ourselves as women.

So, providers, whomever’s listening, I’m talking specifically to you. As a former patient and as a future provider, be the example for me as a provider that I hope to one day be, but also hear my story and my pain and hear my suffering as a former patient who did not have to experience all of that. Not for 20 years. All I needed was one person to give me a different choice, to recognize that I lacked the information to make a well-informed decision. So, be the provider that changes the narrative and the outcome for women who deserve an optimal quality of life. That is my ask.

Absolutely. And we have to increase the conversations, as you mentioned. Women have to talk to other women. There’s a lot of period shame, and people don’t want to talk about their periods, but it’s so important because there’s so many unnecessary hysterectomies. We have patients all the time saying, “I didn’t even know my mom suffered with fibroids. She had a hysterectomy. I didn’t even know it.” I had a woman that, when I was asking her about her bleeding and asked her if she chewed and craved ice, and she said she did. And then I asked her if she chewed or craved any other things like corn starch, dirt, clay, and so forth. She started crying. And I said, “I’m sorry, I didn’t mean to upset you. Why are you crying?” Well, she had come upon her mom when she was a little girl. She saw her mom chewing Argo, cornstarch.

And that was very traumatic for her. She thought, “Well, why is mom doing that? That’s crazy. Is there something mentally wrong with my mom?” No. Now, all these years later, she realized her mom wasn’t crazy. She was eating it because she was suffering with fibroids, and she was so profoundly anemic. She had this condition that’s associated with profound anemia, called pica, where you either chew ice or you chew things like corn starch. And so, it was okay. Mom was normal.

All this burden was kind of lifted, and she just expressed it in crying there in the office. So, it’s so important for women to communicate with each other. It’s important for men to be in this conversation. When we treated Cynthia Bailey from “The Real Housewives,” Peter thought Cynthia didn’t love him because they weren’t having relations. Well, if you’re bleeding so heavily, even a supermodel doesn’t feel very sexy wearing adult diapers, and she was bleeding horribly. She was anemic. Sex is exercise; she was fatigued, so the relations stopped. And so Peter interpreted that as, “She doesn’t love me anymore.” She did love him, but she was suffering, but they didn’t communicate. And once she underwent her UFE, she didn’t have to wear those diapers any longer. Her iron and hemoglobin came back to normal. She had all her energy back, and I gave her her sexy back.

That’s what she keeps telling me when I see her. And so, again, the communication is so important, and it’s such a vital thing that we need to— It’s okay to talk about periods. It’s important subject material.

Absolutely. I have this monthly link up with Mmy friends, I call it “linking up with Liz.” And that’s what we do. We talk about topics that are important to women, where we meet each other where we are and address those sometimes difficult conversations that are informative. So, I have shared my story with my friends. As a result, I have had several individuals who have elected to have a UFE. They may have even called you, Dr. Lipman, because I’ve given them your name in lieu following the hysterectomy recommendation of their provider. And each and every one of them indicated that they were unaware that this even existed.

So, as Ms Black USA, and I hold this position where my voice is heard and extended throughout my community, I know my responsibility to ensure that I continue to advocate for women being aware of procedures like UFE, that I ensure that women are aware that they have a choice and that their voice matters and that you don’t have to suffer. Diaper Depends are not sexy. They just are not, but they’re necessary sometimes. But I’m trying to do my part to make certain that the necessary is unnecessary because someone has done their work to ensure that women get the support that they need.

Well, that’s powerful words. And I would add to that that the simple thing is, if you’re out there suffering with uterine fibroids and your doctor tells you you have to have a hysterectomy, you don’t. It’s an option. Absolutely get that second opinion from an experienced interventional radiologist that does UFE and talk to that individual about whether you’re a candidate for UFE. I would say that at least 99% of patients that are told they have to have hysterectomy are also candidates for UFE. So, it’s very rare that you wouldn’t be, but get that second opinion. It’s so important. Any last words that you’d like to say before we sign off?

Absolutely. It is Black History Month. And Dr. King once said, “It’s not enough to simply be a bystander in this world. You must be an active participant.” And I can attest to: Fibroids are scary. The bleeding is debilitating, and we worry about all things that affect us as women. But I assure you, through the right intervention and the right support, you will be that wife that you worry about. You will be that mother that you yearn for. You will have that quality of life that you need. I’m hopeful that there is a woman, maybe a woman of color, that hears my voice and may have felt doubtful before today. I hope that my testimony has empowered you. I hope that it has given you the willpower to have the control over your pathway and over your healthcare that will change your own personal narrative. Seek the care you need.

Keep talking, keep using your voice, keep advocating for yourself. There are interventions available, and someone will help you. And for every interventional radiologist hearing my voice today, change your narrative. You now have a call to action to do better for your patients, so that their life can change. Put that degree to work, just like I plan to do in six months, and let’s make a true impact on our community. As Ms Black USA, I thank you for the opportunity. As a former patient of yours, Dr. Lipman, I thank you for giving me my life and for giving me my air, for giving me the confidence to stand on this platform and advocate for every woman and every woman of color who deserves the right to be heard. So, thank you.

Oh, I can absolutely see why you’re Ms Black USA. You’re just so eloquent, and you brought everything right where it needed to be. The focus was perfect, and I can’t thank you enough for your bravery. I mean, to come forward and share your story, it takes a lot. A lot of people don’t want to talk about their medical conditions. And I so appreciate you doing this, and I want to thank Cook again. This has been the Cook SIR podcast on UFE. I want to thank them to making it all possible. Thanks very much. I appreciate everyone’s attention and hope that this was a very informative podcast for you.

Thank you for having me.

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