In this episode, we are privileged to host Sherrie Palm, the founder, and CEO of the Association for Pelvic Organ Prolapse Support (APOPS). APOPS is a 501(c)(3) nonprofit advocacy agency founded to generate awareness of pelvic organ prolapse (POP). APOPS following consists of patients, clinicians, researchers, academics, and industry reps throughout 177 countries.
Sherrie shares the genesis of APOPS and educates us on how the organization is creating awareness of pelvic organ prolapse, and ways it is supporting women navigate different aspects of life. Sherrie also gives us a walkthrough of the APOPS website which is a wonderful resource for all who are experiencing pelvic organ prolapse as well as hospital administrators who want to learn more about the disease. She also talks about challenges, some symptoms women can experience and encourages us all to learn more about POP.
This is a great interview where you’ll learn about POP and what we can do to help, so please tune in!
About Sherrie Palm
Sherrie Palm is the Founder/CEO of the Association for Pelvic Organ Prolapse Support (APOPS). She’s an APOP advocate and key opinion leader, a vaginal and intimate health activist, author of the award-winning book Pelvic Organ Prolapse: The Silent Epidemic, and an international speaker regarding women’s health empowerment and multiple aspects of pelvic organ prolapse quality of life impact.
The Next Evolution of Vaginal Health Awareness, Screening, Practice, and Policy; Shrinking the Patient/Practitioner Gap with Sherrie Palm, Founder/CEO of Association for Pelvic Organ Prolapse Support was automatically transcribed by Sonix with the latest audio-to-text algorithms. This transcript may contain errors. Sonix is the best audio automated transcription service in 2020. Our automated transcription algorithms works with many of the popular audio file formats.
Saul Marquez:
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Saul Marquez:
Welcome back to the Outcomes Rocket, Saul Marquez is here and today I have the privilege of hosting Sherrie Palm. She’s the founder and CEO of APOPS, the Association for Pelvic Organ Prolapse Support. She’s the author of three editions of the award-winning book Pelvic Organ Prolapse The Silent Epidemic, A Pelvic Organ Prolapse, Patient Advocate, vaginal and intimate health activist, international recognized speaker POP key opinion leader and prolific writer regarding POP, which is the pelvic organ prolapse, we’ll be using that acronym. Pioppi Emotional, Social, Sexual, Fitness, and Employment Quality of Life Impact. She writes on all of these things. And today we’re going to be learning more about pelvic organ prolapse, how it affects folks, why, and what we can do about it. So, Sherrie, thanks so much for taking the time to be on the podcast with us today.
Sherrie Palm:
Thank you so much for this opportunity. So I really do appreciate the time to share some information with your following.
Saul Marquez:
Absolutely. And so, Sherrie, I’m excited for our chat, too. Before we dive into your organization. I want to learn more about you and what got you started in this health care journey.
Sherrie Palm:
Well, it’s a classic case of discovery upon diagnosis with a health condition you’ve never heard of. I was diagnosed with MS at 30 and had done everything I could to change the dynamic of my own life. I was told I’d be wheelchair-bound for, short time frame. And so I did a lot of proactive engagement with what I can do to optimize my health. And it worked. What I’ve done did work. So moving forward into my mid-50s, I started to notice symptoms and I was a little curious what those symptoms meant. And I’ll give you the condensed version of it. I’ll give it kind of tidy for your following. When I would go to the bathroom, I’ve always worked a 60 hour week. That’s my norm. And I go to the bathroom to pee. And after about three months of noticing a bulge down around my vaginal area, I got a little bit curious and I got a handheld mirror out to take a look to see what was going on down there and discovered a walnut-sized lump. And of course, your brain goes to a tumor right away when you think about it. So I was I wasn’t freaking out completely because I had no pain with it. It was just something that was weird. And I knew it was normal would have to be addressed. So I sent an email to my buddy who happened to be a doctor, lucky me, and she said, we’ll do a pelvic exam upon examination. She told me very matter of factly, you have public organ prolapse. I will fit you with a pessary. And if you’re not happy with the pessary, I will recommend a highly skilled urogynecologist to address it from a surgical angle. I never heard of any of those terms before, so I was a little put-off, needless to say. But she fitted me for the past three, which is actually an incredible device that you can put in, kind of like a diaphragm to support your internal organs. And the backdrop is let me give you the short version of prolapse first. It is a condition where the organs in your pelvic cavity start to move into the vagina and push their way down and out of the canal as your pelvic floor muscle is no longer strong enough or is damaged and cannot support those organs from underneath them anymore. So I came home from that appointment and did what most people would do. I had Dr. Google and asked what up with that and found tons of information about prolapse and everything that I read said the same thing.
Sherrie Palm:
It’s so common. And my takeaway from that was how come I’ve never heard of this before if it’s so common? So within a very short time frame, my curiosity turned to anger and frustration, to be honest with you. And I knew that if I didn’t know about this condition, that other women didn’t know about this condition because I had been so proactive about my health. So I moved into action relatively quickly. I knew that there was only one way to really optimize getting information out to women, and that was to write a book. I didn’t have any knowledge of writing books, but it just felt right. So I went up in that direction. And within two weeks after I was fitted for that test from my doctor, I realized that that wasn’t going to work for me. And she did a great job. You did it on the inside as we are on the outside. And so when it’s a physician fits a woman for a pessary, sometimes it’ll go through two or three or more, tries to get the right fit with me. I was lucky. I had a great doctor. She got the right fit right off the shoot and I went home and I was happy I could take it out at night time and insert it in the morning. And it worked well for me. It provided support for my organs. I was comfortable, but within two weeks of doing that, I recognized that I just didn’t have time to deal with that. I have a very active work kind of backdrop. I always have had, and I didn’t want to add one more thing to it. It’s kind of like, well, you want context, you want to see, well, not have glasses on your face. But that’s one more thing you have to do, and that’s what kind of fits in that same kind of energy. So I contacted my doctor and I said, well, the pessary works great, but I’m not happy with it. So remove it for me, so she did. And I went to see my urogynecologist for just about a month, a little bit more than a month. And she just described to me what types of prolapsed I had, there are five types I have three of the five types, there are four grades of severity, I was grade three, so I was in a pretty advanced age of prolapsed. So she said that I could take the summer off. This was in January when I saw the urogyn and take the summer off, you know, and enjoy yourself and relax, et cetera, and then in fall, we’ll do surgery. And I was of the opinion that if you can’t fix it yesterday, fix it today. I just want to get this squared away.
Sherrie Palm:
So she scheduled me for surgery in February. So I use the time between when I was diagnosed and when I went in for surgery to do my research for the book. And there was a 12-week yield curve for me after surgery. This is major surgery. So I use that time frame to write the book. So when I came out of that heel curve, I was then off scouting for a publisher for the first edition, and I was about maybe 15 months into marketing the book. And of course, I had to go through all the usual stuff people go through when they’re the first time. Anything these days, authors or business developers or whatever, you had to learn how to build a website and you have to learn how to do social media and all that kind of stuff. So I did all that. And then about those 15 months into marketing, I recognized that if I wanted to truly help women effectively and guide and support them effectively, I should find a non-profit. I knew nothing about the non-profit world beyond coaching the Special Olympics Festival. So that was a whole new pocket for me as well.
Sherrie Palm:
So lucky for me, Marquette University, I’m in the Milwaukee area and Marquette University has a great pro bono program that they have to help people develop their 501 NC3 three non-profits. So I used I applied, I was accepted. I used their assistance to build the nonprofit. And then it was just a matter of moving forward after that. So it’s evolved over time. We now have that this in, I founded APOPS in 2010. So we’re now this year we hit the ten-year mark and we now have patient following and practitioner following in 177 countries. So grassroots did what grassroots does and spread the word. And women find you. They, they Google different terms, and they find you and they come into our space. So it’s been a labor of love. And I’m happy with everything that has flowed forward throughout that time frame except the fact that there is still so much stigma attached to this condition and it’s still difficult for women to talk about it out loud. And that’s what we’re trying to tear down now.
Saul Marquez:
Wow, that’s awesome. Well, thank you for your education and your story. It’s certainly an area that needs more attention. And thanks to you Sherrie, the information is available rather than leave it to the end. I think it’s fair to share right now, I’m sure, given such a topic that affects so many women, I mean, one out of every two so. Fifty percent of women.
Sherrie Palm:
Fifty percent. And that is an estimate. The reality is we won’t have any accurate data. You can find data that range from three percent to 90 percent on this condition. We won’t have any accurate data until all women are screened during routine pelvic exams because there are so many causal factors for this condition. So we use, I use fifty point fifty percent all the time. And I do believe in my heart that to be a relatively accurate figure, if it’s not accurate, I would guess that the exact number is going to be higher, not lower.
Saul Marquez:
Well, you’re doing awesome stuff and you’re bringing awareness, you’re providing education, you’re providing resources. I think it’s it’s wonderful all the things that you’re doing, Sherry, to inform women on this very critical issue. And so I would say give us some resources around your website, because, I mean, I was looking at it. And it is just there are so many resources there, especially people focus and you have videos. You’ve got an education. You’ve got the podcasts you’ve done. Where do people need to go and help them navigate this site?
Sherrie Palm:
That’s wonderful. What a great question, Saul. I would everyone’s needs are different because our patient following is mid-teens through the end of life. It’s women, it’s all women. So what they’re going to look for and value the most is going to differ, obviously. But I highly recommend that two places to start off at would be our POP down drop menu. There’s a ton of pages on that section.
Saul Marquez:
So much information there.
Sherrie Palm:
And you can just tell by the titles of each page if it’s going to be what you’re looking for, whether you’re just looking for basic information or if you’re looking for something more specific.
Saul Marquez:
Let me read some of them. Pop Risk Factor questionnaire. How common is pelvic organ prolapse? Patient voice. Mesh questions. Ask your physician. Pessary info. Mesh updates. I mean, the list is long just for men. It’s just for men. Fecal incontinence and it goes on. I’m so sorry. I just wanted to do that because the list is long. And if you or someone you love are going through this or one of your patients is going through this, you’re thinking about care management for your organization or your provider, like the list goes on. This is a great resource pelvic organ prolapse support bag. If you Google APOPS, it’ll get you straight to the site. That’s the easiest way to get there. But get getting back to the walkthrough here, Sherrie, please continue.
Sherrie Palm:
Ok, the second thing that I would recommend women look at is the Sherrie Palm articles because that’s more heart. That’s more gut. I have been writing for many, many years now and I don’t sit down and tend to write an article. Something hits my gut and then I write. And so if they’re looking for that more heart to heart personal flavor, the POP page is a bit more suction is more about here are some basic facts for you. Whereas the articles talk about impact, women’s quality of life and the stuff that is the more heart wrenching or gut-wrenching aspects of women, in general, are impacted in so many ways by this condition that they’re when they come to us, they are typically in high seats of either anxiety or anger or frustration. And so reading some of those articles may help level that a little bit. And also the is we have actually two videos, YouTube video streams and the older stream you’ll find by Googling YouTube plus Sherrie Palm. And those are videos that put together several years ago and that has got more of a breakdown between impact to the quality of life and the more recent one, there are links to both of those on our video page on the website, you can find both of those YouTube sections. The more recent ones are a bit more from the gut feeling. Again, where is here’s a more updated version of where we’re at right now. And I tend to just like with the articles with the YouTube’s, it’s not so much about yours, the data, it’s more about that emotional and physical quality of life impact. And I often write and talk about the aspects of the impact that don’t get the more graphic things that women are just so uncomfortable talking about or admitting to. So for those that are suffering from embarrassing symptoms that are feeling very awkward about it, check out the videos, because that helps break that down a little bit and soften it up a little bit.
Saul Marquez:
So, yeah, it’s interesting. You know, I wonder why it’s so taboo.
Sherrie Palm:
Well, when we think about areas of health care that are stigmatized, let’s just compare it to breast health. For example, if you think back to pre-Kohlman days to, let’s just say, all of the 60s and before that, with all of the 60s and early 70s, you could not say the word breast out load. You could not write the word breast in a magazine article or a newspaper article. Radio stations couldn’t say the word breast.
Saul Marquez:
Oh really.
Sherrie Palm:
Oh, yes. And people don’t realize that if they’re young enough to not have lived through that. So what happened was there was a whole paradigm shift with their movement. And that’s what this is, is a movement as well. If you think about it from the male side, erectile dysfunction. We didn’t use to be able to talk about that out loud either. And now no one bats and women don’t care if you take little blue pills. Who cares? As long as you feel good about yourself. Let’s have some fun, you know, and that’s extended it. So they normalize that. And the same thing will happen with POP. But as of right now, so many won’t talk about it. I’m not talking about just women. I’m talking about those in health care and I’m talking about those in an industry that have got devices and products that they’re marketing. And they may have websites that share information, but they’re not talking a lot about this graphic aspect of this health condition. And that’s what has to be done to soften the stigma. We normalize when we talk about it out loud. So if you’re talking about prolapsed, we’re talking about women often have of made big symptom that all of them recognize is tissues bulging out of the vagina. Who’s going to talk about that out loud? Someone’s got to and I’ve been doing it, but it’s got a long way to go yet to open it up. So that’s a big deal. And women are very stigmatized by that. And the impact to self-image is devastating. Yeah. So they think and women think it’s just down because they’ve never heard of this condition before.
Saul Marquez:
Right. That nobody else is going to say, hey, I’ve got I guess what I found there.
Sherrie Palm:
And there’s also there’s urinary incontinence. There can be fecal incontinence, there’s pain with intimacy. These are all areas of impact that have got so much stigma. And again, the only way we’re going to overcome that stigma is by talking about them out loud. That is the bottom line. So I do everything I can to take advantage of this, like this wonderful opportunity to talk a lot about this stuff because of the 50 percent. This is your wife and your mother and your daughter and your sister and all women need to know this information. They truly, truly do.
Saul Marquez:
Well, it’s a wonderful service that you’re doing for all of the women out there and, you know, it’s important that we talk about this and normalize it in our day to day, Sherrie. So as we think about, like solutions, it happens. So what are some of the ways it gets addressed? I mean, I understand there’s this device and there’s also surgery. Tell us a little bit more about the device. You said some. It takes two to three times to get it right. And then tell us about the surgery, if you could cover that. I’d love to learn more, and I’m sure the listeners would, too.
Sherrie Palm:
Ok, well, there are both surgical and nonsurgical treatments and there is a considerable number of each. This isn’t a single item on either column. So with the pessary like I had, that is actually…
Saul Marquez:
What is a pestor?
Sherrie Palm:
Picture, well, you can’t be too young to know what a diaphragm is too. So it’s a circular device that I shouldn’t say. It isn’t just about 20 different sizes and sizes, but types of pessaries because again, is different on the inside as we are on the outside and because women experience five different types of prolapse, that the support that they need on the inside is going to be a bit unique because what happens with prolapse as those organs shift out of their normal positions, the gap that is where you insert the pessary up into because it goes up into the vagina. That gap is a different shape and a different size. Got it. So they have to be sized individually. So that is one device and they work fantastic for some women. Some women are fitted for a pessary and they get the right size and shape and type and they use them for the rest of their life. They don’t even want to have surgery.
Saul Marquez:
And it works.
Sherrie Palm:
It works. They have to be used the right way. You have to make sure you’re keeping your ear the acid balance in the vagina and healthy and we take an — and be clean and so on, but a very, very valuable device. There are also a lot of fitness programs that women should be engaging in. And most people have heard of Kegel exercises. But when we think about optimizing nonsurgical treatments, we need to think about both the pelvic floor being strengthened, which is their Kegel’s, and the core muscles being strengthened because they work together as a team. And so women can find many different kinds and types of fitness programs on the computer. Many of them are free. There’s also biofeedback, which is something that a physical therapist will provide for you to help understand what muscles are working effectively and which ones are electrical stimulus, the support garments, those tibial nerve stimulation. There’s hormone replacement therapy. There’s a ton of different non-surgical options here. And typically women will utilize one or more of those options at the same time when we’re talking about surgery. I just want to make a little sidebar note here. It’s important to see a subspecialist for surgery. And actually, you should see some specialists for POP in general. There is gynecology, and then there’s OBGYN and then those to urogynecology. Urogynecologists address POP specifically. That’s their area of expertise. So there are many different types of surgeries that they can provide. Again, depending on what type of prolapse you’re experiencing, type, or types because women often have two or three types at the same time. And they can do the surgery through the vagina, which is called transvaginal. They can do it immediately as an incision and they can do it as laparoscopic and robotic. So there are multiple options. And typically surgeons will have an area that they prefer to work in., the type of surgery that they provide. And then within the types of surgeries that you can have in each of those individual four sectors, there’s a multitude of ways to do these repairs. So and that’s best left not patients shouldn’t be looking either that they should leave that to the gynecologist to make that decision. What’s the best way to go for that patient? So lots and lots of options. We do find that typically women will utilize a pessary for about two years and then she gets tired of the fuss and loss and then moves on to surgery. That’s pretty much the norm that we see.
Saul Marquez:
Well, folks, that’s the tip of the iceberg on this. There are so many things that you guys and ladies can learn about. Is it chronic disease?.
Sherrie Palm:
It’s not classified as a disease. It is like a chronic condition.
Saul Marquez:
Right because you’re dealing with it.
Sherrie Palm:
nd you’re dealing with it every day. Exactly.
Saul Marquez:
I like the condition we’re in better.
Sherrie Palm:
Yes.
Saul Marquez:
And there are ways to address it. There’s when you have something like this, it’s very common diabetes, very common. There are ways that we can manage it and address it kind of longer-term. And so Sherrie is just touching on some of the things, but there are so many more. And the resource is her website for sure. So make sure you check that out. Also, if this is something that affects you and you like what she’s doing, there’s also an opportunity to make a donation on her website. Again, just go to Google and Google APOPS, and there’s a place there where you’ll go straight to her website, you’ll see a top right. place to make a donation if you feel like she’s making a difference because she is. And also to keep yourself informed, whether you’re a practitioner or an individual working through this. Sherry, what else would you like to share about the work that you’re doing and any call outs there that you’d like for us to be thinking about?
Sherrie Palm:
I do feel that it’s important that women recognize that this is not just them. And I mentioned that earlier that women typically think this is the only person in the world that’s experiencing this. So there’s comfort in numbers. There’s always been comfort in numbers with any kind of medical condition. So I cringe women that are feeling too awkward to share this with the man in their life, to just grab that glass of wine or a cup of tea or whatever and sit down and start that dialogue, start the conversation, because men don’t understand if women are just saying that and there’s that whole misconception that tonight I have a headache and that’s not really reality. But if a woman is having an embarrassing symptom of a condition, it’s very difficult for her to engage in intimacy, especially one that’s as graphic as this is. So I encourage women to start the dialogue with their partner about this condition, what they’re experiencing. And I encourage men if the woman in your life that you have been with for many, many years and you’ve had an active, satisfying sex life with all of a sudden that that intimate life just shifts. There’s probably a health reason behind it, encouragement to recognize that and to gently ask the right questions. And that’s what that article Just for Men comes in. That’s to give you some kind of tips on how to do that, how to engage in that process. So I wanted to share that. And for the women that are feeling devastated or anxious or angry or depressed when they’re first diagnosed, just know that we see that and listen to that all day, every day in all of these spaces. And I’m so, so blessed to get to witness women that come into our space in that state of mind, morph into these amazing, beautifully empowered women who are moving forward with their lives because they’ve found answers for themselves and they now understand it wasn’t just them. It’s half of the female population.
Saul Marquez:
It’s so great that you’re doing this. And we’re certainly lucky to be helping you share this story. Definitely. We’ll do our part. The podcast will. We’ll make a donation just to help continue what you’re doing because it’s so impactful. And we certainly appreciate your message to our listeners today. So really, I guess the last thing here from us Sherrie is what’s the best way for listeners to get in touch with you and continue supporting your learning from the work that you’re dedicating your life to.
Sherrie Palm:
Well, thanks so much for asking that question. So the easiest way to find us again is to Google APOPS. And that will bring you to our website. If you can also typically find any of our social media feeds by Googling APOPS. So if you’re not finding what you’re looking for, toss my name in there Sherrie Palm and that will get you to those spaces. We’ve got a lot of energy on Facebook and LinkedIn for the white-collar side and we share information on Monday through Friday. That’s of value to both our patients and to the clinicians who treat them as well as the industry that develops the devices and tooling for this condition. So we can’t forget about the researchers. We’d be lost without the research cause they are priceless. So I’m an open book. I’m happy to share information with anyone that’s looking for information. And I am delighted to have this opportunity to talk with you today Saul and thank you for mentioning the donation in part because donations are priceless to help us build the programs in the pipeline to help the women that we serve.
Saul Marquez:
Absolutely. We appreciate you and what you do and certainly appreciate the education you’ve given us. Don’t be afraid. The call to action is don’t be afraid. You’re not alone. And there are resources, there’s community. And Sherrie is spearheading a lot of that. So, Sherrie, appreciate you jumping on here to share the message.
Sherrie Palm:
Thank you so much for the time today. So you have a wonderful afternoon.
Saul Marquez:
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Things You’ll Learn
Resources
https://www.pelvicorganprolapsesupport.org/
https://www.facebook.com/pelvicorganprolapsesupport.org/
https://www.instagram.com/apops.sherriepalm/