    
Securing Sexuality is the podcast and conference promoting sex positive, science based, and secure interpersonal relationships. We give people tips for safer sex in a digital age. We help sextech innovators and toy designers produce safer products. And we educate mental health and medical professionals on these topics so they can better advise their clients. Securing Sexuality provides sex therapists with continuing education (CEs) for AASECT, SSTAR, and SASH around cyber sexuality and social media, and more. Links from this week’s episode: 
Patient Advocacy and Education on Sexual Health: Evidence-Based Information, Technology and Sexual Health Resources, and Women's Sexual & Vaginal Health Care
As technology continues to evolve, so too does the way we interact with each other. In the digital age, it is increasingly common for people to meet online and engage in sexual activity. While this can be a great way to explore new relationships and experiences, it also carries risks that must be addressed. To ensure safe sex in a digital age, sexual education, patient advocacy, and evidence-based information are essential tools.
Sexual health patient advocates are individuals or organizations which provide support and guidance to those with sexual health concerns or issues, and advocate on the patients behalf for better treatment, access, and care. Some sexual health patient advocates also work as sex educators, either within their capacity as a Patient Advocate or separately, and educate and assist those looking to engage, or already engaging, in sexual activity. They can provide education on topics such as consent, communication, contraception, STI testing and treatment options. Additionally, patient advocates can help individuals navigate difficult conversations about sexual health with partners or healthcare providers. By providing resources and support for those dealing with sexual health issues or looking to engage in sexual activity, patient advocates and sex educators can help ensure that everyone involved is making informed decisions about their health and safety. In addition to patient advocacy and sex education, evidence-based information is also essential for ensuring safe sex in a digital age. Evidence-based information includes research-backed facts about topics such as contraception use, STI prevention methods and risk factors associated with certain activities or behaviors. This type of information helps individuals make informed decisions about their own health by providing them with accurate facts rather than relying on myths or misinformation from unreliable sources. Additionally, evidence-based information can be used by patient advocates and healthcare providers when discussing sexual health topics with patients so that they have access to the most up-to-date research available when making decisions about their care plans. Finally, it’s important to remember that while technology has changed the way we interact sexually with one another it has not changed our need for education around safe sex practices or our need for support when navigating difficult conversations related to our own health and safety needs. Patient advocacy groups as well as access to reliable sources of evidence based information are essential tools for helping us make informed decisions about our sexual health and when engaging in any kind of sexual activity. By providing resources, support, education, and accurate facts, these elements help us make informed decisions regarding our own health needs. Key Concepts: Sexual Health and Education Reproductive Health Care Patient Advocacy Evidence-Based Information Women's Sexual Health Care NIH Funding Drug Trials Healthy Hooha CDC Resources Live Conferences 
Hello and welcome to Securing Sexuality, the podcast where we discuss the intersection of intimacy and information security.
I'm Wolf Goerlich. He's a hacker. And I'm Stefani Goerlich. She's a sex therapist, and together we're going to discuss what safe sex looks like in a digital age. Today we are talking to Aimee Cloutier, a female sexual health patient advocate with over 10 years' experience in research, education, and advocacy around a variety of vulvovaginal, pelvic, and sexual health topics. She's also the creator of Healthy Hooha, a digital resource dedicated to providing unbiased evidence-based resources to women and those with vulvas. Welcome Aimee. Thanks. Hi. I'm so glad to be here. Thanks for having me on. Yeah, it's great to have you. Can you tell us a little bit more about your work and specifically what is patient health advocate? Let's start with a little bit of backstory to how I got into patient advocacy. I was a patient who had many different women's sexual health issues that I struggled to find any qualified healthcare professionals who could properly diagnose and treat the issues that I was having. But this was at a time when research was still basically nonexistent and there just wasn't any knowledge for what was happening. As the last 20 some years have gone by and research has been conducted by the wonderful people at the International Society for the Study of Women's Sexual Health, I have been fortunate to be able to follow along with the research that has been coming out. I have through the university access to all of the PubMed published articles, things like that, and so I can just read along as they get published and learn about all the same things that is coming out. So I just amassed this huge pool of knowledge for myself to try to help me and my doctors figure out maybe what was happening to me. As all this research was being developed more and more doctors were joining the forces and while the pool of clinicians is still very, very small, I found one who was following along, read along with me, who belonged to this organization. She knew exactly what was happening to me when I went to see her the very first time and that basically changed the trajectory of my life. I went home to my husband and among other conversations and said, look, there's got to be a way to fix this for other women. Social media and the internet was prolific but it wasn't what it is today with various support groups, subreddits, things like that. And so there wasn't an avenue really for me to spread my knowledge very well, but I did where I could. So I just kept amassing all of this knowledge and then about 2017-18, something like that, I had a friend who said, check out this subreddit and I went there and it was a bunch of women or those assigned female at birth who were struggling with vulvovaginal and sexual health problems and couldn't find clinicians to help them. And I started just pouring all of my knowledge into this subgroup, this subreddit support group and I was spending an enormous amount of time basically just responding to people. And I turned, you know, I went to my husband when we were talking about all this stuff and I said, it's got to be a better way for me to get my knowledge out to these women and these people who are struggling for answers. And so the website Healthy Hooha was born. I started self-publishing articles of the knowledge that I had where I was able to take the scientific vocabulary and turn it into something that most people could understand if they didn't understand scientific and medical jargon. And I was also publishing information that wasn't very available except in scientific articles that were being published. The website turned into this whole, I call it an organization, but it's really just me. But it turned into this whole organization, this patient advocacy and education organization where I still write articles that are helpful, but I belong to that women's sexual health organization now as a patient advocate. And so I work alongside and collaborate with medical professionals. I give them information about their patient base and what is needed and the things that the patients are saying that might be lacking or that they're struggling with and can direct these clinicians and researchers on where to look next, how to help their patients. But then I'm also able to take the information from these clinicians and bring it back to the patients where they need it in vocabulary that they can use and just up to date information that they might not be able to find elsewhere on the internet. My husband and I are developing an app that will help, significantly help the patient and clinician communication based on what is happening to the patient with their symptoms. I personally am also just doing all kinds of other projects. I'm spreading the word on podcasts like this. I am developing sexual education curriculum, things like that. But patient advocacy involves people who like me have struggled to find answers. And so they've taken it upon themselves to go to the evidence based information. There are all kinds of levels of patient advocates and some don't necessarily work in evidence based. Some are kind of in between. Some are very holistic. There's all different kinds, but the patient advocates that I have encountered seem to just gravitate towards that evidence based information because they have spent 20 years looking at everything on Google that was crap. And I don't know if I can say that on your podcast, I'm sorry. But I've just noticed that they live in this evidence base. And so they take all of that information and they spread it among all of these different social media groups. They are starting fundraisers. They are getting research accomplished. We have basic scientists who have struggled and they said, you know what, if nobody else is going to fund this research, I'm going to conduct the research. So there can be some people in medical professions who say, we don't need patient advocates. I'm the patient advocate. That's what medical professionals are for. But patients are finding that they're not getting the advocacy and education that they need from medical professionals. And so we're becoming advocates ourselves. That was a large mouthful for all of your listeners, but that's essentially what the sexual health patient advocate is. So that's a lot. You're right. Yeah. A little bit of a mouthful, but it's a lot. And part of why I was excited to talk to you is because part of my background is patient advocacy. I used to do patient engagement consulting. So I would go in with the doctors as a part of sort of their condition of their employment. And I would shadow them and watch their conversations with patients, watch them doing procedures at times, and then sit down with them at the end of the day and give them feedback on how to be kinder, more empathetic, how to connect with patients. And reproductive health is one of the areas where that can be a challenge because there are so many sort of social biases about what is and isn't okay to talk about, what is considered polite conversation. And then we have, you know, just this long history of women being excluded from their health care in general in favor of their husbands or their fathers sort of dictating the terms of things. I remember Mad Men back in the day, the TV show, where the doctor is talking to the husband about Betty's care and conditions. And there are people alive today who weren't told that they had breast cancer. Their husbands were, their fathers were, but these women were not included in their own bodily decisions and, you know, life outcomes. So I think what you do is really phenomenal. And I think from what I've seen as a patient engagement consultant, it is so very necessary. Sexual medicine is partly as slow as it is because people are, either the clinicians or the patients are struggling to discuss such intimate topics. And as an advocate, I'm clearly very vocal and blunt about these topics. I have to be, but it's just my personality. And so I kind of internally chuckle a little bit when a sexual medicine clinician says, I find it difficult to bring some of these subjects up with my patients. I'm like, you're kind of in that field. If you're in that field, why are you struggling to discuss these things? And the patient is there because they're having problems. Now, it is more difficult to get the patient to open up because they are not working in the field. They didn't choose to be there. They're there because they're having a health condition. But the clinician, if they are working in that field, they should have no issues discussing these topics. They chose to be there. Because of some of the difficulties that people can have talking about these with clinicians, a lot of people like you alluded to have went to community groups, right? And there's this double edged sword. I love social media for the ability to create a community group, to create a space that people can talk about what they're concerned about and have these discussions. I also get concerned, having seen some of the research on TikTok communities and on Reddit communities, that there may not be good information being shared. So A, is that a valid concern of mine? And B, how do you make sure that these groups are getting the information they need? It is a valid concern. And it's something that I and my cohorts struggle with all the time, we end up actually getting burnout regularly and need to take breaks because we go into these groups and we help. And it is such a plethora of bad information or information that someone was trying to do a really good job at providing evidence based information, but they weren't exactly quite right. I've had moderators who might be a nurse who don't give medical advice, but they're there to make sure that there is somebody who can provide evidence based information. And I even had to correct them on some things. And so it's a constant struggle. And I'm by no means perfect and know everything that there is to know, but the concern is valid. It is constantly a plethora of information that you either have to report or you have to correct or things like wives' tales treatments are being spread and you have to guide people down the right path. Otherwise we're not going to get to a point where people can be relied upon. It's just going to become another place of misinformation. Which leads to your website, your app, your work with Healthy Hooha, because you can't be everywhere all at once. You cannot be expected to correct everybody on the internet live and in real time. So talk to us about your project and how that's unfolded. Like you mentioned, I have the website where I publish. I do have a way to contact me on there. It gives a contact form and it goes to my Gmail that I have set up for that. I've helped women or patients that have come to me through there. But the website is mostly just where I can publish the article so that if I do have somebody that I find online that has a question that I've kind of already provided all the information for, I don't have to spend that time retyping all the information. I can say, hey, I've written an article that answers all of these questions. Here's the link. You can go to it. You can take your time to read it all. If you have questions, please, please let me know. So that's what the website does is just gives people a place to go and read. They don't have to worry about how buried the comment is and whatever profile they have or platform they have. Where did I find that information? It was just on the Healthy Hooha website. I love the advocacy piece that you mentioned too, because we just this week came out of the midterms and Roe has overturned this year. So there were a lot of sort of state level initiatives both for and against accessing reproductive health care. Wolf and I are in Michigan, which was exciting because we were one of three states that enshrined reproductive health care in our state constitutions. I was a little irritated that Vermont and California beat us to it because we were all on the same night and I really wanted to be number one. And then every state that had restrictions or bans or limitations on reproductive agency and frankly bodily autonomy, because so many of these things, they give it the lens of abortion, but it goes into so many more issues and it ripples out into other aspects of health care. Those were all voted down, which I love to see. And I'm curious kind of your thoughts as a patient advocate, what that means for you in terms of health care for people with vulvas and vaginas. We as a people are never going to agree on like when life begins. And that's fine. We don't have to agree. But we do have to find a way to live together. Part of the way that we live together, at least in where we are now, in my opinion anyway, is that we allow people to make their own decisions. Whether someone thinks that my decision is wrong or right, or I think someone else's decision is wrong or right. If we can't make our own decisions, how are we going to get along? How are we going to be our own person? The Roe versus Wade and the reproductive health care debates and all of that, I think as an advocate, we have to fight for the patient to be able to make their own decisions in anything, whether it's reproductive health care, whether it's in diabetes care, whatever it is, we have to be able to make our own decisions. And what advocates are trying to convey to a lot of people is the additional fallout of what can happen when you restrict reproductive health care choice. It's not just about keeping a pregnancy or terminating a pregnancy. There's a lot of medications that have an unfortunate side effect of a board of student. A lot of these medications are not for anything that has to do with reproductive care, sexual care, or vaginal care has nothing to do with that. There are some like acne medications, there are cancer treatments, there are blood pressure medications, there are like a bone health medications, mental health medications. There are a bunch of them, I don't have the list, but they have side effects of being an abortive student. And so these people who have no interest in taking the medication for anything reproductive can in some places are being denied their medication or other health concerns because of that side effect. So I think, like I said, there's a lot of people who just don't seem to understand some of the fallout that can happen when you make a very broad and blanket denial of reproductive health care choice. And that's happening not just for people who are pregnant, that's happening for anybody that could theoretically potentially become pregnant. More and more pharmacists are saying, you're a woman of reproductive age, I'm not comfortable giving you this medication. And that is just unacceptable to me. I've heard stories ranging from 14 years old and a pharmacist declining lupus medication, I'm sorry, rheumatoid arthritis medication, to women who are in their 50s who have had full hysterectomies, but the pharmacist doesn't know that and has no reason to know that, denying them medication for lupus or chemotherapy or any number of other things. Right. And you have women who are those with uteruses who are in that fully reproductive age who might not even be having sex because of their own personal choice. And so there's not even a chance of becoming pregnant because of their own choice and they can't get their medication. You mentioned a couple of times evidence-based and I'm a big proponent, I spend way too much time reading Dorky studies on all sorts of things, cybersecurity, far less time spending time reading studies like that we're talking about here. But I've got to imagine, right, doesn't the National Institute of Health, doesn't the NIH provide some funding for this or where are their funding available and where is their funding gaps? Vomit vaginal and sexual health care, at least for women or those assigned female at birth, get I think less than 2% of the NIH funding for research. Wow. Yeah. One of my cohorts had put out a big blurb about all the different statistics and I can't remember them exactly, but I know that it was like less than 2% because it gets lumped into reproductive and obstetric and child healthcare research. And so then we just, the sexual medicine component gets a portion of that. So it's very little. There's all kinds of stipulations of why we don't get research dollars and why no one has, why there's not a whole lot of interest in getting these things researched and resolved. But there are unfortunately quite a few conditions that are recurrent for women and it's a huge, huge problem. It essentially causes them to not only not be able to function sexually with a partner, but they can't really even function in day-to-day life. There's a lot of pain, there's a lot of doctor visits, there's a lot of medications, and it's this cycle that never, never ends. So not only are there not very many clinicians to help diagnose these people, but there's no research to know how to diagnose, there's no research on treatments, there's no research on... So there's also a lot of off-label treatment use because we're like, well, it kind of works, so let's give this a shot for you. So it's a struggle that we all have in this field of medicine that we are constantly fighting for more dollars. We're constantly fighting the FDA to even approve certain medications for use. So for example, like testosterone, women have eight times more testosterone than they have estrogen. Yes, I just saw your eyebrows go up. So very, very, very simplistically, testosterone turns into estrogen in women. It doesn't mean as well, but a very small portion. So in women, the testosterone turns into estrogen. And so we have, like I said, eight times the amount of estrogen. We also, the vulva vaginal tissues actually have quite a number of testosterone receptors in order to properly function, but it needs both the testosterone and estrogen. The FDA refuses to approve testosterone for use in women. They refuse to approve it, whether it's for hypoactive sexuality disorder, whether it's for vaginal dryness, whether it's for low libido, no matter what it is, we tell them this is working and it's working because women need eight times more testosterone than estrogen. They refuse to approve it. We have some research. It's very, very good research, but it's not as much research as cancer. We still can't get dollars to have more research done to maybe help convince even further. And it's something that, like I said, we constantly, constantly fight for. The other thing that I read years ago that I don't think many people are aware of is how frequently women are excluded from research around medications and drugs. For the same reasons, the hypothetical potentiality that one might become pregnant. So it's considered ethically risky to include women in drug trials because we don't want to risk there being birth defects or other side effects. The best way to prevent that risk is simply to exclude people that could be pregnant or could become pregnant during the course of a trial. But what that means is that the vast majority of medications are only tested on male bodies and male presenting bodies. And so women effectively become sort of post facto guinea pigs because the medications are approved for men. They're ghost based on studies involving primarily men, and then they're prescribed to women. And the differences in hormones, the differences in male and female bodies, talking, you know, biological sex, obviously not gender. But the biological differences are not often factored in to drug trials and studies. And so that means that we don't necessarily know how drugs respond in women until they're being given to women just every day and we wait and see what the fallout is. And that has always been mind blowing to me. You're absolutely correct, Stefani. Not only is it pregnancy that they want to avoid possibly happening during the trial, but it has been said more than once that those pesky hormones that are cycling throughout the months that cause cloudy data. Because not only do you have, you have throughout the cycle, obviously the estrogen and testosterone rise around ovulation, then they plummet real quick and then they rise again real quick. The estrogen and progesterone rise, you know, the second phase of the cycle. And so you have those fluctuations. And so the medication, not only does medication affect us differently just because of our DNA or our biology, but a main component is that because the hormones are going up and down and up and down and women or females, they process medications, they process things like alcohol and illicit drugs, marijuana, they process this all different. A lot of times based on their level of estrogen. Estrogen makes us in general more, not necessarily susceptible, but it causes it to be more, I guess susceptible. So you can have less alcohol and you'll still feel the same effects. They're finding if your estrogen is high, things like that. So it's a lot of the research, while it was passed, I think in the 90s, I want to say that it was required that women were finally, you know, forced to be part of research. We still get excluded because it's so difficult to determine statistical significance with the hormonal fluctuations. You have to track, well, when was your estrogen high? When was your progesterone high? When was it low? When were you menstruating? And so it just makes data so cloudy and makes it so much more difficult for researchers. But that's what your job is. You're a researcher. If you want to help women, do it the right way. I like that line. That is what your job is. One of the things that surprised me about this conversation is I thought advocacy was more with the patients. It sounds like advocacy is equally with the healthcare systems and with the physicians. Is that correct? And if so, what are some of the systemic ways that you're getting this information out to, again, the people who this is your job? It can be either way. It could be all kinds of ways. Or people like Stefani mentioned that only help patients when they go to their doctor visits and they're there to make sure that the patient gets what they need and that their concerns are listened to. They're in the clinic. And then there are patient advocates who, as I mentioned, might be doing some fundraising or starting charitable organizations. There are a couple that I know that are starting some for the post SSRI sexual dysfunction problem right now. And then there's patient advocates like me and a couple of other of my below vaginal health advocates who do a lot of work and that support groups helping the patients. But we're finding that we are doing a lot of great work interacting directly with those clinicians. So we are able to not only, like I had mentioned, give the boots on the ground information to those clinicians, but then we're able to work with all the healthcare providers on various projects. I just got accepted to an education committee and so it's where we're going to be able to direct the education courses that are provided to those who want to learn more about female sexual health. There are a couple of us who want to work on sex education courses, whether it's for K-12 or the general public or med students. There are some of us who are patient advocates who work directly with hospital systems to make sure that patients' concerns are being taken into account on a hospital-wide basis of how patient care is in the entire hospital. So the information is getting out there in a multitude of different avenues depending on what the advocate is passionate about. What about on the provider side, Aimee? If you could wave a magic wand and make healthcare providers more aware or better in one area, what would you fix most? What is the key skill or quality or knowledge gap that you wish you could just magic away? The first one is that healthcare providers stop thinking that young women cannot have hormone problems. They are taught in medical school that infertility can happen to young teenagers all the way up until full menopause. But if infertility can happen to those very, very young people, why is there a disconnect that part of the infertility problem is hormone related? So I'm seeing a lot and I've seen for quite some time that young women are being denied healthcare because the physician or healthcare provider, whatever degree they have, says, you are too young for hormone problems. That is completely untrue. Now while it might be less common, if this is the patient's fifth visit of the same problem, stop denying them healthcare. The second thing that I kind of want to tack on is I really wish that med schools and healthcare schools would start providing more sexual health education. Roughly, so in the United States at least, when you take all of the medical schools and you kind of average how much sexual health education they get, they get roughly between five and 10 hours in their entire education. Now I know that general practitioners don't need to dive into the nitty gritty of what might be happening in an unusual case, but it is clear that there is a huge, huge disparity in their education, especially now that people are becoming more vocal, they're becoming more aware and they're demanding better health for their vulvabaginal problems, especially when pain and quality of life are involved. There are people who can't work as of, there are people who can't sit, they can't stand, they can't walk because of pain in that region and nothing is being done. There's no education. Even something like an OBGYN, while they have an additional set of education and instruction and they go through all this residency, those clinicians are typically still not educated in a lot of these sexual health problems. And so we need even like further, not a residency, a fellowship where they learn from somebody else who's been in this for some time. So those are the two things that if I could wave a wand, we would fix so many people's lives. I think so, we're roughly about what, 51% of the population and about 40% of the female population has a sexual health problem. Yeah. Like where's the funding? Where's the education? That knowledge gap was so very clear in my field as well, right? In mental health, you might get a human sexuality course, assuming it's even mandatory. Some places it's an elective and you might choose to take a human sexuality course. And I remember when I did my sex therapy training, one of the things that was so cool about that was that we had doctors in the room training alongside us. We had doctors that wanted to become certified sex counselors. And that was phenomenal. And also eye opening, because I don't think I had really thought about it until I'm like, wait, you guys didn't already know this. You had to come here and learn it. And it blew me away. So I am right there with you on that. Wolf, I feel like this has been very sort of Aimee and Stefani dominated. I thought you were calling this our token male. Wow. I just became the token male. I was not anticipating that. I am very surprised about the funding. I am very surprised about the lack of education. I'm very surprised about the percentage you put out about people who are women who are having problems. And I'm glad there's some technology available that can help us get some information in their hands. Your website, this app you're working on, the work that you and your fellows do in social media forums. If I am listening to this podcast, and perhaps if I am not a token mail, you're really not. We're going to have a conversation without it. But what advice would you give to people who may find themselves in that percentage that you mentioned who are looking for information or looking for help? What is a good takeaway? Be skeptical of what you are reading. A good way to be able to determine if what you're reading is based in actual study data is to look for the inclusion of the links to the published research papers. It's something that I did at least on my website and things that I do online. I always include the links to the research. And I've noticed whether it was coincidental or because I was doing it, but I've noticed that more and more people are doing this as well. They're including the links to the published data so that when they say, please, please do these things and please don't do these other things that you have seen all over TikTok, you've seen all over the internet, you've seen spread throughout your high school or your college. Here's why it's wrong. Well, if I'm going to try to dispel a lot of these things, I better be able to prove why I'm dispelling it. Where my backup is. And I know that right now in this country's vocabulary is, we'll look at the research. And I really want people to look at the research even though that term is being thrown around a lot. So when you're looking for information, please, please try to verify it in research data or medical data or go to a website that has a phenomenal reputation like the CDC, like the Mayo Clinic, sexual health research organizations. These are all places that are going to publish information that has come from study data and not things like, oh, my grandmother passed on through generations to do this or that or use this product. And it has no basis in evidence-based and reality treatments. There are a lot of products in stores. If you look at real quickly, if you look at a box of something like Vagisil or Summer's Eve, their box actually tells you on the side, this product puts you at a higher risk of vaginal infections. Their own product tells you this. So I say again, just when you read or you look for healthcare information, please take your time, read through what you're looking at, look for sources of the information, look for those links, read the sides of boxes. And if all else fails, contact me on Healthy Hooha and I will direct you to whether there is evidence for something or not. Fantastic. Good, good advice there. So thank you so much for the conversation. Thank you. Thank you for tuning in to Securing Sexuality, your source for the information you need to protect yourself and your relationships. From the bedroom to the cloud, we're here to help you navigate safe sex in a digital age. Be sure to check out our website, Securing Sexuality, for links to the Healthy Hooha website and for more information about the topics that we've discussed here today. And of course, information about next year's live and in-person conference. And join us again for more fascinating conversations about the intersection of sexuality and technology. Have a great week. Thank you. 
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