Sateria brings a unique perspective to the conversation around menopause, getting real and vulnerable about her experience living with uterine fibroids. Her menopause story also brings to light many experiences that women in midlife often face: managing anxiety, taking care of elderly loved ones, and maintaining a healthy work-life balance.
In this episode, Sateria paints a vivid picture of what it’s like to live with uterine fibroids. She brings a unique perspective to the conversation around menopause, getting real and vulnerable about her decades-long struggle with fibroids, navigating the healthcare system as a Black woman, and becoming an advocate for women across the globe. Sateria shares aspects of her journey that many women may relate to including managing anxiety, experiencing weight gain, and moving back home to care for an elderly loved one. As the founder of the Fibroid Foundation, a global community of fibroid patients, Sateria discusses the power of patient advocates, in addition to how she maintains a healthy work-life balance. Sateria’s story helps empower women to be their own advocate in their health journeys, “there is a lot that a patient can contribute to understanding of a health concern because they've lived it.”
About Sateria and the Fibroid Foundation
Sateria is a patient advocate who was diagnosed with fibroids at the age of 26. After receiving the recommendation of a hysterectomy in her 20s, she was prompted to explore other options to manage her fibroid diagnosis. She began a quest for information, which led her to found The Fibroid Foundation. As The Fibroid Foundation, Founder and CEO, Sateria has supported over 26M women globally across 71 countries, providing better care and education around women’s health. The organization’s mission is to amplify the voice of women living with fibroids, through innovative programs, strategic initiatives, and powerful partnerships.
Disclaimer: menopause: unmuted is designed to raise awareness, encourage communication, and share information. It is not designed to provide medical advice or promote or recommend any treatment option.
Useful Links:
Listen to our bonus episode on brain health and stress: A Calm Menopause w/Dr. Pauline Maki
More information on uterine fibroids at the Fibroid Foundation
Episode 2, Sateria's Story
MJM
It's time to unmute menopause.
Hello, and welcome to menopause unmuted. This podcast is for anyone going through menopause. I hope it's a reminder that you're not alone. But I also want to welcome anyone who just wants to find out more. Being informed is such an important part of strong relationships, so thanks for listening.
The path through menopause doesn't always run smoothly. There are the physical and emotional changes, but this can also be a time to think about your general health, wellbeing, and outlook on life.
I'm your host, Mary Jane Minkin. I'm an OB-GYN and clinical professor at Yale University School of Medicine. And over the past three seasons of this podcast, I've been sharing real women's stories on many aspects of menopause. You can access every episode, including bonus interviews with experts on nutrition, fitness, brain health and intimacy right here. Simply follow or subscribe to this feed to start listening.
Some menopause experiences are so common they can almost be thought of as universal. But no two pathways through menopause feel the same. And for many women menopause will happen alongside a pre-existing medical condition. Today's guests Sateria knows all about that. Through decades of lived experience and dedicated work, she's an expert on living with uterine fibroids. But despite all her knowledge, Sateria had to begin a whole new learning journey in midlife. Let’s unmute Sateria’s menopause.
Sateria Venable
Hello, I'm Sateria Venable, founder of the Fibroid Foundation. And the Fibroid Foundation is an organization that I founded after my third of four fibroid surgeries. I was on a mission to find answers and to find someone to care for me. And now, we have a grassroots movement that spans the globe, which blows me away. And I think our mission really now focuses on erasing the stigmas that exist around menstruation. And I'm happy to be here with you today. Thanks for having me.
We just celebrated our 10th anniversary as an organization. And although I'm not trained as a physician, I work with physicians, I work in the medical field now as a result of leading this organization. And it struck me as shocking really, that despite my access to the foremost women's health and gynecologic experts in the world, I was not prepared for menopause, personally. And I thought to myself, if I'm having this experience, and I don't know what to expect, with the exposure that I have, and the access that I have to text gynecologists and ask them questions, what are other women struggling with, as they enter menopause? It just has to be like an avalanche. It is an avalanche.
People often ask me how menopause and fibroids connect. And when you've experienced uterine fibroids, you're waiting with bated breath for menopause to occur so that the hemorrhaging stops, and the pain stops.[1] And you're hopefully not looking at yet another fibroid surgery. And when I encountered menopause, I was very nervous about taking anything that would retrigger the fibroids. So, I think I suffered through the symptoms for a long time for that reason, because for the first time in my life, the fibroids were somewhat dormant. And I could move around without worrying about would I be on my period would I bleed spontaneously? I didn't have to cancel social engagements.
So, I was so excited about… you think of it as I just have to get to the finish line. I just have to get, to through to menopause to the periods stopping. My periods had started to be every other month then once a quarter. And then I thought, okay, just hold on, hold on. And through that whole time, even when they came once a quarter, that was part of the journey as well. I had to go see one of our clinicians, because I was hemorrhaging so horribly when those quarterly periods would occur while I was in perimenopause. And when I finally met a menopause specialist, he recommended a vaginal therapy. And I said, after three decades of hemorrhaging, I don't even want to discuss a vaginal anything. And he looked at me and he was kind of taken aback. And he just laughed. And he said, “I never thought of it that way. That makes perfect sense.” He said, “Okay, vaginal anything is off the table.” And I said, “Okay, thank you. Because that is not an option.” Because for the first time in my life, I don't have to have a suitcase full of menstrual pads to take to work or wherever I'm going. I know, there are things that you don't even think about, like now I can carry a much smaller purse. My whole life I've been carrying huge tote bags, and it's still a mental adjustment for me when I leave the house when I can take a small purse with me because I don't have to pack it with pads and, or medicine. And I was enjoying my new reality, which was not having to have all those considerations.
MJM
I'd like to give you a little information about uterine fibroids because it's a condition which affects a lot of women. A fibroid is an exuberant growth of the muscle wall of the uterus.[2] They can occur anywhere in the uterus, and the symptoms depend on where they are located. Two thirds of women in this country have fibroids.[3] African American women are three times likelier and Hispanic women are twice as likely as white women to have fibroids.[4] Fibroids can present with many symptoms including abnormal uterine bleeding, which can lead to iron deficiency anemia, infertility, back pain, pelvic pain, urinary symptoms, such as frequency or even urinary retention, and bowel symptoms such as constipation.[3,4] These symptoms may require intervention.
As many of you know, the decline of estrogen levels is the hallmark of menopause.[5] Fibroids are dependent on estrogen for growth. So, menopause is a blessing for women with fibroids as they will usually shrink.[5] However, many of you also know the decline in estrogen is not smooth, it may bump up and down as it does decline overall. Hence the potential erratic bleeding.[6]
Sateria paints a vivid picture of what it's like to deal with uterine fibroids. Awareness and understanding of the condition have improved over the years. But there still are too many women suffering more than they need to. If you are one of these women, I want to encourage you to have a detailed conversation with a healthcare professional. And if you're not getting the right level of treatment, exercise your right to find a doctor who will listen and work with you. Let's return to Sateria who really captures how she felt, as she transitioned into menopause.
Sateria
For me, menopause was bittersweet because it was the end of suffering for me. But because I was never married and never had children, it was also heartbreaking. So, I like to think of the Fibroid Foundation as my baby that I birthed, so that I have something to show for those decades of pain. And I understand that many women do see menopause as a rite of passage; when I first heard that, I thought that's ridiculous. Why do we need to suffer again to experience a rite of passage?
But the symptoms, there are myriad symptoms of menopause. Back pain, anxiety attacks, bloating, hot flashes, bone density changes, skin changes, hair changes.[7] It's like an assault, it causes you to assess your priorities. And that does make you put a spotlight on that time of your life and assess the importance of everything. When you hear news stories of women who are walking into the workplace and quitting during menopause, I totally, totally get that. Because I've had to learn…you have to exercise differently, you have to eat differently. 20 pounds just comes on, and it just won't go anywhere. Despite what you do.
I, I eat so much less than I did when I was younger, I exercise more, I've really had to relearn my body. And then you add to that, to those dynamics, the fact that in my instance, you're caring for an elderly parent, you're leading an organization. There's just no room for craziness, anything that's not a priority. It caused me to become laser focused on what I needed for my own preservation, where before I had been a huge people pleaser, and trained or, or thought that I needed to follow the expectation, which is to just work myself to death. Like, before my second surgery for fibroids, my hemoglobin was six. It's supposed to be 12.[8] And I went to work every day. Today, I would not even consider that. I'm a different person in terms of my pace and my priorities. And it's because of the assault of all of these symptoms, and the impact that they have had on my life over the past 10 years.
I started noticing that my anxiety levels would peak at times of the day when I was stressed but like clockwork, every evening, so when the day would end, and I would be preparing dinner or sitting down for dinner, I would have a massive anxiety attack. And this went on for years and it happened every single day. And I just, within the last few months found a solution for me. Well, one of the things that happened to me was my primary care physician, I shared this with [with] my primary care physician and she wrote in My Health Record, anxiety - diagnosed me with anxiety and I was like that is not what I have. What I have is menopause. Which is causing the anxiety, like I am laser focused on making sure that my interfacing with the medical community is accurate, particularly when it relates to my own personal health records. And so, I asked her to remove it because that is not accurate. I am not having random anxiety and just crazy. I am adjusting to hormonal fluctuations in my body, period, and its menopause.
MJM
I'm very impressed with Sateria’s self-awareness throughout her menopause journey. Her role at the Fibroid Foundation means that she's become an expert in advocacy. But we can all learn to advocate for ourselves. Self-care is something we hear talked about a lot more these days. And self-care can take many forms. It might be something simple like taking a break for fresh air in your working day. But it can also be much more fundamental. Like recognizing the trying to do it all or pushing yourself too hard is ultimately just not working for you. I'm very glad that Sateria has learned to prioritize her health over work, and that she also has the knowledge to know when her hemoglobin levels are too low.
Remember that hemoglobin carries oxygen to our tissues throughout our bodies, and lack of sufficient oxygen can lead to shortness of breath and fatigue and Sateria’s hemoglobin levels were half normal.[9] which is why you want to be in contact with your primary care physician and monitor your blood levels of hemoglobin very carefully. And honest and thoughtful conversation with your health care professional is also very important. As Sateria notes, anxiety can be a symptom of menopause.[7] So, these seemingly small details like what's written in your health record, are all part of a growing culture change towards greater health literacy.
Sateria
I moved back home thinking it would just be for a year, a decade ago and I'm still here. And I'm here because my family needed me. I think that that's a huge factor in thinking about the time drain on me daily. And you add to that the pandemic, managing a business and having a parent who got sick during the pandemic, who moved in with me. And menopause, it is a lot. I have a few friends who are in similar circumstances or have been in similar circumstances of caring for parents who are my, and they are too my age. And one of the things that we express to each other is putting our oxygen mask on first because if we do not care for ourselves, we can't care for our loved ones either.
So, I now think, okay, are you okay? Do you need a minute, you know, even if it's just breathe, meditate, walk the dog, get some fresh air, and just try to be very present? Because there are a lot of things pulling at you constantly, all day long. I feel as though when my feet hit the floor at 7am, or 6:30, I don't stop moving until 11 o'clock at night. And then one of my friends in the UK, she told me about bedtime procrastination. But it's basically when you have so many demands on your time during the day, that even when you're tired, exhausted, you don't go to sleep, because that's the only time that you've gotten to yourself. And I found myself doing that.
So, I recently took two weeks off. And it took me more than a week to calm down. And I realized that we get into a spiral that is very challenging, we stay up late, we get up, we're tired. We don't feel like working out. And we're not thinking as clearly when we're exhausted. I know I'm not. And so, since those two weeks off, I've recommitted to shutting down my computer at the end of the workday, not looking at email, going to bed earlier, building in some time for me to read or cook dinner or whatever I want to do in those hours, getting my workouts in in the morning, and trying to create more balance for me to thrive. And it's still a work in progress. But I can definitely see that I'm doing better.
One of the things I've stopped doing is checking my email every five minutes, literally. I check it three times a day. And anything that does not fall within that window of time. I'll just get to it when I get to it. Because otherwise, everything just gets too overwhelming. I find that the constant checking of emails and social media makes me feel worse. It makes me feel stressed.
MJM
There's a phrase that Sateria used there which really caught my attention. She's trying to create more balance to thrive. When you're living a full life, it can be very tempting to keep pushing, get things crossed off the list so you can relax afterwards. But how often do you actually take that time to relax? I think it's something we can all get better at. And sometimes you have to recognize that pushing through is actually counterproductive. Sateria’s tip to limit contact with email and social media is very wise. We only have 24 hours in a day. How much of that should we really dedicate to distractions that are ultimately quite stressful. Recognizing what triggers your stress is an excellent first step to minimizing it.[10]
Managing stress is a topic that I explored in more detail with Dr. Pauline Maki, in our season three bonus episode A Calm Menopause. You'll find it here on our podcast feed, and I encourage you to check it out.
[music]
This is menopause: unmuted, where we talk about real women's menopause stories. I'm your host, Mary Jane Minkin. And if you'd like to listen to other women's stories about their menopause experiences, visit menopauseunmuted.com. You can also talk to your healthcare provider to get more information about menopause. And that relationship with your healthcare providers is a crucially important one. It's something that Sateria has a lot of experience with.
Sateria
When I think about my relationship with the medical community, I think earlier in my life, it was more adversarial because one: I'm a person of color and have experienced significant disparities in my life. And in our family. For instance, when I was three years old, I was very ill. And the doctor told my mother that he would try a less radical surgery because she spoke so well. And those are experiences that African American people, people of color have had for decades, centuries.[11] And so that, you know, oftentimes you feel like you're going to battle when you go to a medical establishment.
As I've grown in this career in my health journey, I've started to work with providers more as partners, as if we are trying to solve a problem together. I bring my patient knowledge, they bring their medical knowledge, and together we try to find the most optimal solution. And I think a key ingredient to the success of that strategy is a physician with a great bedside manner, who is caring and open to receiving that feedback. I think there are some physicians who sadly don't think that there's much that a patient can contribute to their practice, but there is a lot that a patient can contribute to understanding of a health concern because they've lived it. And there is no compensation for lived experience.
And now I see the same thing with menopause. The physician partners that I work with who initially may not have had as much to contribute to the menopause conversation are now going to the menopause conference. And I thought, well, isn't that lovely? That shows progress to me. And I think that a lot of women, bless them, who have been so vocal. A lot of women influencers, I think that's one thing that's really a beautiful, serendipitous occurrence with menopause is that many women experiencing menopause have significant influence, and their voices are being heard now. And that's a gift. And I believe that the medical establishment is responding to them, us being vocal.
MJM
As a physician, I could not agree with that sentiment more. Sadly, the medical profession still has some way to go when it comes to addressing health inequalities and working collaboratively with patients. But I see much of the same positive change that Sateria has experienced, and even now, with decades of experience under my belt, I still continue to learn with my patients, and the power of patient advocates should never be underestimated.
A very popular phrase these days is shared decision making. I just think that's being a good provider. I want to thank Sateria Venable from the Fibroid Foundation for sharing her experience with us today. I’m Mary Jane Minkin, thank you for listening to menopause: unmuted.
Would this episode resonate with someone you know? Please do share it to help keep the conversation about menopause going. You can also find more information about the Fibroid Foundation in our show notes at menopauseunmuted.com
In our next episode, we’ll be listening to Gina’s story.
Gina episode 3 clip: “My husband and I adopted this ‘say yes’ attitude to things. We say yes to as many things as we possibly can. If we have the time, we'll find the money, if we have the money, we find the time.”
MJM
Before I go, I’d just like to say: don’t suffer in silence. Don’t worry about speaking up about your menopause. Women should be able to discuss menopause with their health care providers. A woman can speak out about menopause with her OB-GYN, primary care provider, nurse practitioner or midwife. There are even designated menopause practitioners that a woman can visit if she needs more information.
Special thanks to the Women's Health team at Pfizer and to Studio Health for producing this series.
Talk soon.
[Disclaimer]
[Pfizer sting]
The podcast is powered by Pfizer.
References