Episode 8: Power in Numbers
Today, we’re bringing you a story of change. One that gives a glimpse of what’s possible when patients, researchers, and policy makers come together to fight for a healthier, more hopeful future.
In 1994, Phyllis Mate led a small, dedicated group of women to found the National Vulvodynia Association, the NVA. Their mission was to be the central destination for the most up to date resources and research on vulvodynia. The problem? There wasn’t any medical information on the condition. On today’s episode we learn how a small group of vulvodynia patients fought for research and solutions to a problem they were taught not to talk about.
Full Disclosure: The National Vulvodynia Association is a sponsor of The Tight Lipped Podcast.
A note on gendered language in this episode: we want to be clear that not all women have vaginas, and that not all people with vaginas are women. In this episode, you'll hear the term "women" used to be consistent with clinical research and data available on this topic. However, vulvar pain can affect people of all genders and across the spectrum of gender identities.
Correction: An interviewee states that the National Vulvodynia Association makes research grants of $10,000-$20,000 a year. We have since learned that the NVA makes grants of up to $50,000.
Resources:
The V Book by Elizabeth G. Stewart, MD and Paula Spencer
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
Studies included in the episode:
Transcript
Episode 8: Power in Numbers
Episode
Noa: The year was 1969 and Phyllis Mate was living in Quebec working as a school psychologist.
Phyllis Mate: I was, remember standing on a bus riding to my job in the school system in Montreal. And feeling these strange symptoms. Discomfort at first. Just a strange sensation.
Noa: Phyllis described a mild burning around her vulva. Kind of like a yeast infection, but when she got tested for yeast, it came back negative.
Phyllis Mate: I might have told my best friend. But that's all. I believed that I was an aberration, I was like the only person who had this.
Noa: Although she couldn’t name it yet, Phyllis had vulvodynia -- which is chronic pain of the vulva. It can feel like stinging, burning, irritation, rawness, or sharp pain.
Phyllis Mate: I went to three gynecologists. They knew nothing about it. I went to a dermatologist who knew nothing about it. They had no idea how to treat it. At that point my symptoms were not severe, so I coped.
Noa: The pain was irritating, but it didn’t interfere with Phyllis’ day to day life. She played tennis, met up with friends, and went skiing and ice skating. Throughout Phyllis’ thirties her vulvar pain, that little burning, was like a tiny flame moving down a fuse. But then:
Phyllis Mate: It exploded in my 40s. The symptoms came back and they came back much more severe. It felt like there was a knife in me. It was excruciating to the point of having to go to the emergency room, you know, many times.
Noa: The pain ripped through every aspect of Phyllis’ life. How she dressed, how she sat, how she walked, how she had sex.
Phyllis Mate: And I was suffering with a condition that no one talked about and I completely lost my life. I was totally consumed by the pain and getting medicine for the pain.
Noa: By that point, Phyllis was living in Washington DC working at the US Department of Education. She eventually met with a neurologist. One who treated patients with chronic pain conditions. To her surprise, he told her that he had a number of other patients with identical symptoms. And that he could put her in contact with one of them, if that’s what she wanted. That’s how she learned that there was a support group for people with vulvodynia in DC.
While they didn’t know it at the time, Phyllis and a small group of others were about to embark on a journey. One that would give support to so many people suffering with vulvovaginal pain and help the medical community take its first crucial steps to understanding the condition. This is their story.
Noa: This is Tight Lipped, a public conversation about a private type of pain. I’m Noa.
On this show we ask big questions about chronic vaginal and vulvar pain -- and pelvic floor dysfunction. We talk about painful sex. And shame. And the politics surrounding these conditions that we often keep secret.
Over the season, we’ve heard story after story of people with vulvovaginal pain. They faced communities who didn’t believe them. Providers who couldn’t diagnose them. Specialists who weren’t prepared to treat them. And the shame and stigma associated with vaginas and pain, only made everything more difficult.
But in today’s episode, we’re going to talk about change. We want to learn what it takes to chip away at these obstacles. And we’ll hear the story of what’s shifted in the last 25 years -- and what work is left to be done.
To fully understand today’s story, let’s zoom out a little. It was the early 90s, and activists were shaking the foundations of the American health system. Disability rights protestors piled up their wheelchairs and crutches and pulled themselves up the steps of the Capitol building. They demanded that congress pass the Americans with Disabilities Act. HIV/AIDS activists staged political funerals and spread the ashes of their loved ones on the White House lawn. And Breast Cancer patients formed the National Breast Cancer Coalition and advocated for access to mammograms and research funding.
Across causes, patients saw that they were their own most powerful advocates -- both in winning public support and effecting policy changes. Their first priority was usually to increase investment and attention from the National Institutes of Health, the NIH. Especially for women’s health. By 1991, members of Congress began taking up the issue.
CSPAN Clip - NIH Funding Debate July 25, 1991: Women are missing from these clinical trials. we’re just not included. Certainly there is a very strong need for research on women’s health issues. We simply cannot continue to tolerate the gender bias in medical research. This bill is really only a beginning….women’s health must be an integral part of any research agenda.
Noa: There was a spirit of change in the nation’s capital, and it didn’t take long to reach Phyllis Mate and the group of vulvodynia patients around her. The women realized they could do more than compare stories of misdiagnosis and ideas for coping with the pain. They, too, were a group of patients who could fight for research on their condition.
Phyllis Mate: And as they always say, there's power in numbers.
Noa: So, in the summer of 1994, the National Vulvodynia Association, the NVA, was born.
Phyllis Mate: I just did whatever had to be done and if I didn't know how to do it, I figured out how to do it. I remember a lot of activities took place in my dining room, it was very home, homebound business.
Noa: The NVA’s goal was to improve the lives of people suffering from vulvodynia. Sometimes this meant providing support services and resources about how to deal with the physical and emotional sides of the disorder.
Phyllis Mate: The hundreds of women I’ve spoken to over the years have had similar experiences. Of feeling isolated. Of feeling hopeless. Of feeling they can’t talk about it. That no one will understand.
Noa: in terms of official information available, there just wasn't much out there. They needed more research studies to look into effective treatment.
The thing about research is that in order to get funding you need medical providers and researchers to believe that you’re dealing with a real condition, one that impacts many many people. But because vaginal pain is such a taboo topic, people don’t talk about its impact on their lives. If no one talks about it, the logic goes, it can’t be very common.
Phyllis Mate: Vulvodynia was not one of those disorders that was thought to be widespread at the time.
Noa: But as soon as the NVA got started, hundreds of people began contacting them for help. People looking for something, anything really, to help them understand their pain.
Phyllis Mate: Many women have written to us and say, thank god you're out there, because without the information and the support of the NVA I don't know what I would've done.
Noa: Within a couple years, the NVA grew to over 4,000 members. Day by day, the gap between what the medical establishment believed and what the NVA was seeing first hand was getting wider and wider.
Phyllis Mate: We were the only game in town for the US and Canada and the rest of the world. it used to amaze me that I would get emails from Malta or Poland. And then I realized they have nowhere else to go.
Noa: In some ways, it didn’t matter that Phyllis was hearing from so many people. To get the attention of the medical establishment, she needed to speak in terms the medical community could understand: gold-standard peer-reviewed research. That was the key to proving what the NVA already knew to be true. That chronic vulvar pain was a massive public health crisis in America, and no one was talking about it.
To fund that level of research, they really only had one option: the NIH. So, Phyllis and the National Vulvodynia Association approached the NIH in the mid 1990s.
Phyllis Mate: And we encouraged them and they cooperated in holding the first national vulvodynia conference at the National Institutes of Health. And that was really the first step.
Noa: 200 healthcare practitioners showed up. It was 1997 and this was really the first time that the few people who knew what vulvodynia was, came together and started talking. Hosting a conference on the NIH campus was a breakthrough, but it was just the beginning.
The conference gave some much-needed recognition to vulvodynia as a condition. And it prompted the NIH to announce a call for research proposals on the topic. Over in Boston, epidemiologist Bernard Harlow caught wind of the NIH’s announcement. Like most medical professionals at the time, he hadn't heard of vulvodynia before.
Bernard Harlow: And so I went and looked up a little bit about it in the scientific literature and found that there really had been no studies on the prevalence of this condition.
Noa: Without prevalence studies, it was impossible to know -- and demonstrate -- how many people have vulvodynia. This is what Phyllis and the NVA were looking for. Studies that could prove that this condition was widespread and needed more funding for research.
Bernard Harlow: And I wrote a grant to the NIH in response to this program announcement, suggesting that I was going to identify women through what we called census-based directories that we had here in Massachusetts back in those days, and that I would ask them about vulvar pain.
Noa: Counting up the people who live with a particular condition seems like a logical first step for a medical research agency. Which is why Dr. Harlow was so surprised when his proposal was rejected.
Bernard Harlow: The reviewers were concerned that women would never provide that type of information in a survey, it was too sensitive, it was too stigmatizing and that there was no way I would get women to respond.
Noa: He had run straight into one of the largest obstacles to researching vulvovaginal health. Stigma and secrecy.
Phyllis Mate: The embarrassment factor is almost as bad as it was twenty-five years ago. It may actually be as bad as it was twenty-five years ago. It’s difficult for people to talk about it today. And in those days no one talked about it. I know people who won't tell their family members, they won't tell their best friends.
Noa: As it turned out, Dr. Harlow was in good company. The NIH had found reasons to reject every research proposal on the topic. They were happy to pay lip service to studying vulvovaginal pain. But paying money? That was a different story altogether. Phyllis needed a new plan if she was going to find funding for research studies.
Phyllis Mate: I was doing the phones. And one day I got a call from a man who is the husband of someone with vulvodynia. And I spent 20 minutes on the phone with him trying to give him information and then at the end he said, I think I can help you.
Noa: It turned out that the person on the other end of the line worked for Senator Tom Harkin, a champion of healthcare reform in the Senate. Harkin chaired the Health, Education, and Labor Committee and had authored the Americans with Disabilities Act of 1990. Women’s healthcare issues were particularly close to his heart. He explained why at a campaign event in 1992.
Senator Tom Harkin: Both of my sisters died of Breast Cancer before they were 54 years old. Well they lived in rural areas, they didn’t have any health and no one checked up by the time it was caught it was too late.
Noa: To him, the numbers were shocking.
Senator Tom Harkin: Now, get this. 1 out of 9 women in America will get Breast Cancer, 1 out of 4 will die.
Noa: Senator Harkin knew that women’s health conditions didn’t get much attention and weren’t taken seriously. The healthcare system was failing them. Which is why his staff were open to meeting with Phyllis to learn more about vulvodynia.
Phyllis Mate: I just really remember thinking, wow this is amazing. You know, we’re in Senator Harkin’s office talking to his chief of staff. Remember, we were just a bunch of volunteers.
Noa: The Senator and his staff agreed to rally support in congress for research on vulvodynia. Now phrases like “vulvar burning” and “vaginal pain” weren’t exactly common on Capitol Hill. Still, Senator Harkin’s office managed to set up briefings for Phyllis with over 30 staffers from various Senate offices. And, she was convincing.
Phyllis Mate: I used to joke that Congress knew about vulvodynia before doctors did. This was in like 1997, 1998, and not that many doctors knew about vulvodynia at that time, but a lot of Senate staffers did.
Noa: And it worked. In Congress’ report to the NIH, they stated clearly that the NIH should set aside funding for vulvodynia studies. And they did. And the NIH allocated 5 million dollars to vulvodynia research over the next five years. This was an important achievement for funding. It was also an important signal because it sent a message to the medical community. It established that vulvodynia is a real condition, worthy of scientific study.
We’re going to take a quick break. When we come back, we’ll learn what happened next.
Break
Hannah: Hi everyone! This is Hannah Barg, Tight Lipped producer. We’re so proud to be sharing the last episode of our season with you. Little did we know when we launched in 2019, that thousands of people around the world would listen and resonate with these stories. If you want to hear more stories like these, I hope you’ll consider making a donation to support our second season. This type of podcasting -- long-form narrative -- is one of the most time-consuming and expensive to produce. We research the science, medicine and history, talk to experts in the field, transcribe, edit, score and produce stories that we hope will do justice to people’s personal experiences. As an independent podcast and non-profit organization, we couldn’t do this without you and your support means the world to us. You can donate on our website tightlippedpod.com. Thank you so much.
End of Break
Noa: During this time while Phyllis had been working away in DC, Dr. Harlow was laying the groundwork for the research back in Boston. He wanted to prove that women would be open to being surveyed about their vulvovaginal pain. He did a pilot study to try it out.
Bernard Harlow: And got something like an 80-90 percent response rate rewrote my grant application with that preliminary data and low and behold I was funded.
Noa: The NIH funded three studies on vulvodynia. Dr. Harlow’s study was the only one looking at how common vulvar pain is. If successful, his study would make clear what the NVA was hearing all along -- that vulvodynia was everywhere.
Bernard Harlow: So I was working with an amazing clinician, Elizabeth Stewart, who is really a pioneer in the studying of vulvodynia. And she was my mentor.
Elizabeth Stewart: And I thought I had died and gone to heaven. Just out the blue there was Bernie. And he was the most delightful person to work with just all enthusiasm.
Noa: Dr. Elizabeth Stewart is an OBGYN who specializes in vulvovaginal pain and disorders. She’d gotten interested in these conditions because of her patients.
Elizabeth Stewart: Doctors think that they know about the vulva and vagina and they don't know what they don't know. Well, I noticed in my practice that women had a lot of different complaints that I didn't know anything about -- painful bladder conditions and sexual pain and all kinds of skin abnormalities. And I realized that there was a great deal missing from my training.
Noa: Together, she and Dr. Harlow sent out about 5,000 surveys to a randomized population across the Boston area. The goal was simple: to screen people for whether or not they were likely to have vulvodynia.
Bernard Harlow: The difficulty about diagnosing vulvodynia is that it is sort of a diagnosis of exclusion. When you've ruled out all of those other conditions, you are left with this diagnosis of vulvodynia.
Noa: Anyone who reported symptoms that couldn’t be explained by other conditions was invited to see Dr. Stewart for an exam.
3,358 people completed the surveys. After three years of work, it was time for Dr. Stewart and Dr. Harlow to make sense of all the information they’d gathered. This was the first time that this kind of data had ever been collected. And the results were shocking. The study showed that at least 16% of women suffer with chronic vulvar pain -- meaning pain for three months or longer. At that time, this would’ve meant that about 14 million people in the US had vulvodynia!
Phyllis Mate: To those of us who created NVA, that was an astounding number because each of us thought we were the only one with this unique condition. And it was, mind-blowing, to think that, even it was 10% let alone 16%, that to me was an enormous number of women.
Noa: This was the data that the NVA had been waiting for. It further legitimized the condition -- and proved why they needed more research, and research funding, in the future.
Bernard Harlow: 05:46 Well I was thinking, I'm in on the bottom-floor of something that is a huge public health problem. That's equivalent to something like the prevalence of major depression in women, in the general population. So to think that this condition of vulvar pain could have a prevalence that is close to that is, to me, quite astounding.
Noa: The data showed that chronic vulvovaginal pain was massively underreported. Many people thought their pain was normal.
Bernard Harlow: I learned that only about 50% of women who suffer from this condition actually seek treatment.
Noa: Of the people who did seek treatment, the majority saw 3 or more doctors before they got a diagnosis. Over 30% saw more than five. And there was something else, too. It wasn’t only the number of people that was a surprise. The scant existing research on vulvovaginal pain indicated that it mostly affected white people. But those studies only looked at patients already under the care of a gynecologist.
And the people who can afford to see a gynecologist - let alone spend the time, money, and resources to see 3 or more of them - skews dramatically whiter and wealthier than the general population.
Bernard Harlow: What we realized was that this is not a condition that's restricted to white or caucasian women, this is a condition that affects women of all races and all ethnicities.
Noa: Their survey actually showed that Hispanic women were 80% more likely to have vulvar pain than white and African American women. And, overall, it was common among people from all different backgrounds.
Now researchers, patients, doctors, and the public could begin to understand the gravity of the issue. Finally, someone had confirmed how big the public health crisis was and continues to be. But big crises need big solutions and there’s a long way to go to get there.
Bernard Harlow: It's a problem that's very poorly understood by the clinical community the treatments that are supposed to be the first-line treatments for these conditions only work in a small proportion of women.
Noa: Once it was clear that vulvodynia was highly prevalent, Phyllis was intent on figuring out what leads someone to develop it in the first place.
Phyllis Mate: Because with any medical condition until you can establish the cause, you're merely treating the symptoms. So the ultimate goal is to prevent it, but at least if we find the cause we can, you know, develop a treatment that addresses that cause.
Noa: It’s important to remember that Phyllis is also a patient herself. For her, there’s no separation between her work, her body, and her health. It’s part of the reason she’s never taken a salary.
Phyllis Mate: I do this for no money. It was worth it to me to have that money to fund research and also to fund an online program to teach doctors about vulvodynia. So that benefited women with vulvodynia, benefited the medical community. And the researchers.
Noa: Despite spending 25 years dedicating everything she had to vulvodynia, Phyllis’ advocacy couldn’t stop her own pain. Her symptoms dissipated for a while in her forties. But when Phyllis was in her sixties, her pain came back worse than ever.
Phyllis Mate: I was basically falling off a cliff. Oh god, in 2010, it was for like six months. It destroyed my life. Try to imagine pain so severe that you read a book but, you know, the words are just passing in front of you, you can't absorb it. You know, you watch television to try and distract, but you can’t. When you have pain that severe, there's no distraction it takes over your entire life.
Noa: Nothing could bring her relief. She was in constant burning, knife-like pain. Running back and forth to the emergency room once a week for months.
Phyllis Mate: It's the worst nightmare I've ever had and I think I ever will have. In my sleep I could escape, but as soon as I woke up it came back and my days were hell. You know a month passed, two months passed, three months passed, and I was hanging on by a thread.
Noa: Phyllis ended up getting an invasive and severe form of treatment. It’s a metal implant in her abdomen that leads into her spine and releases an opioid. She calls it her hockey-puck.
Phyllis Mate: And that’s what saved my life in 2011.
Noa: It’s been ten years since Phyllis has felt pain that extreme. But she still doesn’t like talking about it.
Phyllis Mate: But if I tell my story you know, most people would be terrified. You know could I get that bad? It would actually serve to scare women and that’s something we don’t want to do.
Noa: She doesn’t want people to think that this is what vulvodynia is like for everyone. And she doesn’t want anyone to think there isn’t hope.
Phyllis Mate: I use my story in any venue where it helps to get research money or convince doctors that this is something that women really suffer with. I use it wherever appropriate.
Noa: Research funding continues to be the top priority for Phyllis and many others. It’s been over two decades since the NVA’s early success working with Senator Harkin. But, in the last few years, the National Institutes of Health, the NIH, has devoted about 2 million dollars annually towards vulvodynia. Given the prevalence, this is extremely low -- it’s about 33 cents per person with vulvodynia. And it’s completely insufficient to fund the research that’s necessary. For perspective, the NIH allots about 7 million dollars annually for Hay Fever, an allergy that impacts fewer people than vulvar pain.
One major obstacle stems from how the NIH is set up. The NIH is a collection of many institutes, each with its own niche mandate and budget. There’s the National Cancer Institute, the National Institute on Aging, and today, 25 others too. You might think that a vulvar pain researcher like Dr. Bernard Harlow would apply to the National Gynecological Institute for funding. Except, that doesn’t exist. Maybe he’d try the National Institute for Women’s Health? Well, no, because that also doesn’t exist. Here’s Dr. Harlow himself.
Bernard Harlow: All of the women's gynecologic research funding comes from the National Institute of Child Health and Human Development, doesn’t even have women in its title, but they are charged with funding all of the pediatric research as well as women's gynecologic research. And they have the smallest budget of all of the institutes of the NIH, so it's very difficult for them to carry out or to fund a lot of studies in this area.
Noa: So, just to be clear, all research on vaginal health -- and pain -- is competing with child health and development. Besides the NIH, the National Vulvodynia Association is one of the only places to look for research funds for vulvar pain.
Bernard Harlow: But they don't have more than ten or twenty thousand dollars to give out in research grants. And that's just not enough to do research in large populations of women.
Noa: Vulvodynia, like all types of chronic pain, is chronically overlooked. The NIH channels money to areas with the most interest from the research community. Meanwhile researchers gravitate towards projects with the most available funding. It's a feedback loop -- there’s little funding, so people don’t want to join the field.
There are a handful of researchers who are really committed to this topic, like Dr. Harlow who is working to generate more interest.
Bernard Harlow: Trying to convince the next generation of researchers to move into this type of research that is really poorly understood, poorly studied, poorly funded. So one of the things that I've been doing is all of my students are working with my data. And they may or may not go on to become vulvar pain researchers but they sure are getting an understanding of the magnitude and the importance of this condition.
Noa: He even feels some optimism.
Bernard Harlow: I don't want to paint a doom and gloom kind of scenario around it. there are a lot of wonderful researchers who are trying and actively working to identify treatments that will work.
Noa: Dr. Harlow says that as vulvar pain and vulvodynia gain more awareness, there will be more opportunities for research and funding.
Bernard Harlow: I'm hoping that if not sooner at least in ten years or so maybe vulvar pain will become more accepted as a condition just like erectile dysfunction, although it's a much greater and more debilitating condition.
Noa: Over the last 25 years, Phyllis and the NVA have worked on their piece of the puzzle: providing patient support, shedding light on vulvovaginal pain as a legitimate and serious medical condition -- and supporting ongoing research.
But what will the next 25 years look like? Well, it looks like us.
Rebecca: I am dreaming of a world where nobody, for one second, will question whether their pain is real
Katrina: I see a future where experiences of vulvovaginal pain are seen and heard and validated by the medical community.
Gabriela: A future where addressing pelvic pain is part of my community’s intergenerational healing. Donde podamos conseguir el apoyo y lo recursos necesarios para nuestro sanción.
Navah: Where people with chronic pain can see an essential pelvic floor, physical therapist , or any specialist, without going bankrupt.
Mary: Where a patient can walk into their doctor's office and get diagnosed on their first visit.
Sararosa: Because doctors believe us, because the other people in our lives support and believe us.
Hannah: Creating a conversation about these things and talking about them instead of keeping them silent and feeling ashamed is the most important part and first step to building this movement.
Sophie: I used to feel this really profound sadness every time I thought about my condition. I don't feel that brokenness anymore, if anything I feel like this gassed up anger to dismantle all these systems.
Kayla: I'm here to fight for more research, more resources, for better education, and more access to healthcare providers who take us seriously, not just all of us who are here right now, but for future generations too.
Sararosa: I hope that everyone else with these conditions can feel the release of that shame someday too.
Alyssa: And I hope that you feel hope in sharing your stories and in working towards action to change the medical system
Tangela: You're not alone. I know that's kind of like a cliche and what everybody says, but I'm serious, you're not alone.
Navah: I’m Navah
Mary: My name is Mary.
Tangela: I’m Tangela.
Sararosa: I’m Sararosa.
Alyssa: My name is Alyssa.
Katrina: This is Katrina.
Rebecca: I’m Rebecca.
Sophie: My name is Sophie.
Hannah: My name is Hannah.
Kayla: My name is Kayla
Noa: We hope you’ll join us.
Credits
Thanks for listening! We’ll be working on season two throughout this coming year. Make sure to fill out our survey to help us put together the next season! To learn more about this episode, check out the episode page on our website - tightlippedpod.com. This episode was produced by me, Noa Fleischacker, Hannah Barg and our production and storytelling fellows: Sararosa Davies, Eve Bishop, and Sophia Lo. Our editor was Judah Kauffman. We also received editorial support from Daniela Tolchinsky, Arianna Skibell, Erisa Apantaku, Rebecca Magnan, Valeria Donoso, Grace Anderson, Tiffany Yuen, Peter Reinecke and Lisa Goldstein.
We’re incredibly appreciative of the professionals who gave their time and expertise to this episode. Our episode art this season is designed by Arielle Stein and our logo is from Gaby Escovar. Melissa Guller at Wit & Wire designed our current website - you can check it out at tightlippedpod.com. The music you hear is from Blue Dot Sessions.
We’re so grateful to have the support of our sponsors. This season is supported by the Dorot Fellowship Alumni Leadership Award, the National Vulvodynia Association and The Vagina Collective.