What is happening to my body?! Pelvic Organ Prolapse explained...

When Sherrie Palm noticed something unusual going on down there, she had no idea the path her life was about to take - but her diagnosis of pelvic organ prolapse set her on a journey to become an author, internationally recognized speaker, authority on pelvic health and founder of APOPS, the Association for Pelvic Organ Prolapse Support. Listen to her story to learn all about prolapse, how she treated her condition - and how you can, too. 

For more information about APOPS, visit www.pelvicorganprolapsesupport.org.

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Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we'll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America's leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I'm your host, Bruce Kassover, and joining us as always is Sarah Jenkins, the executive Director for the National Association for Continence. Welcome, Sarah. 

Sarah Jenkins: Thanks Bruce. 

Bruce Kassover: Yeah, I'm excited because today's guest is Sherrie Palm, and she is a pelvic organ prolapse patient advocate. She's a women's health activist and award-winning author and international speaker and, really, she's been leading the global charge to destigmatize vaginal health and to amplify awareness of pelvic organ prolapse, which is something we've talked about a bit in the past, but we haven't spoken about nearly as much as we ought to.

So I think that this is going to be really, really beneficial to a lot of our listeners. So, welcome, Sherrie. Thank you for joining us. 

Sherrie Palm: Thank you so much for the energy here, Bruce and Sarah, I'm delighted to get into a conversation with you. This is going to be a great conversation. 

Bruce Kassover: So tell us, first of all, how did we get to be speaking with you today? How did your journey begin for you to become a specialist on the condition of pelvic organ prolapse? 

Sherrie Palm: Well, the beginning actually began before the POP flavor. POP is the acronym for pelvic organ prolapse. I was diagnosed at the age of 30 with multiple sclerosis, nothing to do with POP, and I was, it was a very negative prognosis.

I was wheelchair bound, short timeframe, and so I did everything I could to level the playing field for myself because I could not imagine myself navigating life in a wheelchair at that point, at 30. So I did my homework. It took me about three years, but I found answers to address that backdrop. 

And then moving forward, if we look, flash forward into my mid fifties, to be diagnosed with a condition I'd never heard of, when I had spent so much time exploring not only multiple sclerosis, but also women's health in general, I became a real self-help health advocate at that point in time because I was so freaked out by the MS diagnosis. Everything that I ran across that had to do with women's health, I devoured it, and I was, I thought, pretty well educated about the basics that we have to know to maintain our health as we age.

So to be diagnosed in my mid fifties, some 25 years later with a condition I'd never heard of, and then I found out it was really common, was very unsettling to me. The. Catalyst was, I mean, I've always worked a 60-hour week. That's very, very common in today's society. And when you have to work that many hours and you have to go to the bathroom, there's no thought process… you just run to the bathroom, you drop trou, you pee or poop, whatever you have to do, and then you wipe, you pull up your pants, you wash your hands, you get back to work. 

And on a particular day I was doing just that. And then I realized when I wiped, after I urinated, that it felt like there was a lump down below, and I thought, you know what? I've been feeling that lump for about three months now. I wonder what the heck that is. So I got a handheld mirror out and took a look to see what was going on down below and was pretty shocked to see about a walnut-sized lump coming out of my vagina. I, well, I didn't freak out, but I knew it wasn't normal.

So I went back to my computer and I contacted my PCP, who was a good friend of mine, and she said, “Well, come on over and I'll do a pelvic exam after we both get off work.” So I did that and then she did that and she very calmly said to me, “Sherrie, you have pelvic organ prolapse. I will fit you with a pessary, and if you're not happy with the pessary, I'll refer you to a good ologist and you can discuss surgery.”

I had no clue what she was talking about. Pessary, urology, pelvic organ prolapse. I never heard any of those terms before, so I went home and she did fit me with a pessary and she did a good job with that. 

Little brief sidebar here: a pessary is a, usually a silicone-based device that you insert vaginally, which supports the organs in your pelvic cavity.

So she treated me with a pessary and it worked well. I went home. And did what I do best. I started researching and everything I pulled up about pelvic organ prolapse said the same thing: It's so common. It's extremely common. Very common. And the more I read, rather than focusing on defining the condition for myself and the types and the causes and the symptoms I was focusing on, it's so common. It's so common. How come I don't know about this? I was livid. I was flames shooting out my ears, smoking hot, mad. I could not believe after all the health research I had done in women's space, I'd never heard of this or read about this before. At that point in time, this was 2007. At that point in time, the stat used for POP prevalence was 3.3 million women in the us.

There were no global statistics at that point in time, and now they're saying 50% of women. We'll get into that later. So the reality is, this condition is just – and was just – so incredibly shrouded in silenced that unless it's happening to you and you're diagnosed, you have no clue it exists. And then to compound the frustration of that in the big picture, women that are diagnosed with prolapse rarely tell anyone about it.

It was just a complete curtain. It was a closet door. It was just closed off from society in general. So I recognized relatively early into this discovery that this was my space. I knew within two weeks of being diagnosed that I was supposed to go down this pathway, and I'd been always happy with the career path I'd been on prior to that, the jobs I'd had before that.

I wasn't looking for a career that was outside of what I was used to doing, but I just, it grabbed me by the roots and it made me so frustrated and angry that this is, and was so dismissed in women's health when it's so common. I knew I had to do something, so I thought, I know what I'll do. I'll write a book and then I'll get the book out there, and then women will find the book and then women will know about this condition.

What a clueless moron. It just doesn't work that way. So I wrote the book and it, I was diagnosed December of 2007. I had surgery. I opted for surgery quickly. I had surgery February of 2008, and as soon as I, the light bulb went on for me, I started gathering research about prolapse. And digging deeper and finding more and more information, reading studies and so on.

And so I used the time before my surgery to make all my notes for this book. And then I spent the time in my, I had a 12 week heal curve because I had three types of prolapse. I was grade three severity, so I had a 12 week heal curve post surgery, and I used that time to write the book, and then I spent the, the next time between like July and October of 2008 marketing the book, trying to get the, not marketing, but trying to get the book out there, find a publisher, and finally I'd found it in October and then the following year in April of 2009, the book was, my first book was published. So it's a process, it's a whole process that I went through. And the bottom line, it was all just because I was mad.

That was kind of the beginning of that journey. And after that first book was written, then I was about 15 to 18 months into marketing that first book when the light bulb came on, that if I wanted to reach women effectively and help them effectively, I should found a nonprofit. And so, and I knew nothing about, I wanted to know more about founding a nonprofit.

I knew about writing a book before I went down that path, so lucky, luckily for me, Marquette University here in Milwaukee has got an awesome nonprofit, pro bono program, and they help you write your 501(c)3 document to submit to the federal government to get that status. And they helped me through it. I applied, I was accepted, they helped me through the process, and that's how APOPS came to be. The Association for Pelvic Organ Prolapse Support was just part of the vision of trying to reach women effectively, educate them effectively, help them, support them effectively surrounding this condition, pelvic organ prolapse. 

Bruce Kassover: It's absolutely amazing. So, first of all, you get a diagnosis of multiple sclerosis. It sounds awfully grim. You work your way through that and then develop pelvic organ prolapse. And we talked about how when you first saw the lump, you didn't freak out. I can't imagine how you wouldn't freak out because that does not seem like something, you know, you take, take very lightly. And then instead of just getting treatment, you decide, “I'm going to get it treated. I'm going to get it fixed, and I'm going to write a book about it and start an advocacy organization.” I mean, that takes an enormous amount of energy and self-confidence and I mean just gumption to be able to do that. I mean, I’ve got to applaud that. That's remarkable. Where do you get that sort of drive from?

Sherrie Palm: You, you missed one of the ingredients. Craziness. Craziness. It's just like my father used to say, if you wanted to get Sherrie to do something, tell her she can't do it. And so that's kind of the subliminal message my brain and my body give me. It's like, “Okay, we got to fix this. This is a problem, we got to fix this.” And then there's no, really, no thought process to it. It's just a matter of, it's just, and then it's just ‘goal mode.’

Bruce Kassover: Can I ask what, what did you do beforehand as a career before you went in this direction? 

Sherrie Palm: I had the, at the baseline, I was, I was a clerk at Walgreens. I became a pharmacy technician at Walgreens. I had a little bartending in the evenings thrown in there. When I met my life partner, we, he and I built a semi-truck shop together. And he knew all the shop stuff. I knew all the bookkeeping stuff because I eventually, at Walgreens, I became a bookkeeper too. And so with the training I got from Walgreens, I knew how to build the books for the service business that we built together.

We ran that for 25 years before the economy puked back in the 2008 timeframe. And then we had to shut it down. But that was the backdrop of my life, my world, and we had just, this all began about the same time that things started disintegrating with our semi-truck body shop due to the economy. And so I, I was like, “Gosh, should we shut this business down?” You know, I hate to do that, our employees were like family to us. And then I said, “You know, this is, we're bleeding money. We got to shut it down.” And then. I discovered this lump and then I discovered my new career path. It just kind of, the layers just kind of happened. There was no intent, no plan. It was just life.

Bruce Kassover: Well, first of all, so tell me, so how successful was the surgery for you? 

Sherrie Palm: Oh, very successful. It was transvaginal mesh surgery, which is no longer allowed to be done. I had a great, great urogyn. I'm thankful for that referral to her, but I had, as I mentioned, 12 weeks heal curve. It was extensive surgery. So the surgery went well and it was, the first week was pretty, you know, ragged heal curve.

But I knew, because I had done the research to write the book, I knew what to expect and I knew what I should and shouldn't do. And one of the things my urogynecologist said to me when we, she wanted me to wait until summer to have my surgery. I'm like, “Fix it yesterday! I got to get down with my life.” And she said, “You know, okay, here's the deal. We'll do the surgery and, but you have to be good after surgery. 12-week heal curve, no exercising. I know your type.” So I'm like, okay, I wont exercise. And that was, that was a rough thing to give up for those 12 weeks. 

But because I knew what to expect… women very, very often do not know what to expect with the surgery. They're terrified of it. Thus, one of the reasons it's important we get information into the hands of women so that they can educate themselves as best as they can prior to the treatments, and whether it's nonsurgical or surgical either way, and the symptoms and the quality of life impact so that they're not so freaked out and so scared it, it's important.

Bruce Kassover: Yeah. So let's talk about education because I want, maybe we can step back a little further, even, and just sort of talk about, so you, you found this lump that you were told was pelvic organ prolapse. For those who are first discovering this, what exactly is a pelvic organ prolapse?

Sherrie Palm: What pelvic organ prolapse is, is a condition that occurs in women where they have got the, in the pelvic cavity, at the base of the pelvic cavity, you have got a bowl of muscles that sits between the two hip bone areas, and what that bowl of tissues does, it kind of acts like a trampoline that sits below the organs in your pelvic cavity, your bladder, your rectum, your uterus. It holds those organs up in place. 

Now, those organs are also supported from the top end by ligaments and tendons, but below them it's that pelvic floor muscle structure, and that is what helps support those organs and tissues. As we age or after we give birth, or there are other causes as well, what can occur is that bowl of muscle tissue becomes weaker or becomes damaged because of things that happen during life, and they can no longer hold and support those organs up in that pelvic cavity where they're supposed to be.

So they start to shift out of their normal positions and they'll move, and this is going to sound kind of weird, they move toward… into that vaginal canal. Now they're actually sitting behind the vagina, behind that vaginal wall tissue. But the organ itself will push its way into the vagina and shift downward until it comes out the bottom end of your vaginal canal. 

So, basically, your organs are sticking out of your vagina. They're behind the vaginal wall tissue, but they're sticking out of the vagina. So when that happens, what women see, if they look with a mirror down below – which all women should do – it'll look a little bit different depending on what type of prolapse you have.

Five types of prolapse, four degrees of severity. So what you're going to see at the opening of the vagina is going to differ from woman to woman. And with me, what it looked like was this ball of tumor tissue. It was a circle, looked like a walnut-sized ball of tissue. And so, if a woman has got, let's say she's experiencing vaginal vault prolapse where the cave, the vagina, keeps in on the top end and that comes off the bottom. Well, that's two little flaps there sticking out of the bottom. It doesn't look the same as like a bladder coming out or the uterus coming out. So, depending on what type of prolapse you have or types, because women can have two or three types at the same time, will change how this actually looks to you.

Bruce Kassover: Is that bulge that lump, is that really the primary symptom or are there other symptoms as well that you might encounter? 

Sherrie Palm: There are other symptoms. That is the most common symptom. That is the most obvious symptom. Women will feel pressure in the vaginal area. Sometimes in the rectal area, but if they feel that pressure in their vaginal area and they actually get curious enough to look with the mirror, they will see that bulk of tissue coming out the bottom.

And either it can be a tiny, small one if it's early grade prolapse, or they'll see a larger one like I had, because that was grade three prolapse and then at four grade four, that's the highest level of severity you can have. 

So other symptoms are common too, though… on what you all do at NAFC on the incontinence side is priceless. Incontinence is, I'm going to guess, and it's hard to say solid for sure because the stats are all over the page for types of, of incontinence. There are so many different types and even with just looking at stress urinary incontinence, the data that you find on that varies a lot from study to study.

So that's the second most common system, I would say, of prolapse. But there's also urinary retention where you can't get the pee to come out. You have to go. You want to go, but no matter what you try, you cannot pee. You can have chronic constipation. You can have fecal incontinence, just the opposite of the constipation.

Women, they have got chronic constipation, and that's from a rectocele. Their urge to poop is so strong. They want to poop so bad and they could sit on that toilet for an hour and nothing comes out. And that's because what a rectocele is, is like a hernia-type bulge that comes off the side of the rectum that poop gets stuck in that hernia and it can't come out the bottom end. So that's a big deal, that kind of constipation and that's all day everyday for those women that found a rectocele, that's a severe rectocele. On the fecal incontinence side, that can occur, and it's not as common as the chronic constipation, but it's equally frustrating.

You can have a vaginal, rectal back or pelvic pain, so, or pressure. So, if you're noticing a pressure sensation at your vaginal space, if you're noticing the pressure back on your rectum or your anus. If you've got back pain that comes with an enterocele, often a pelvic pain that can be common just because your organs are all out of position, not where they're supposed to be, and they're putting pressure on nerves and so on.

Those, all those types of pains can occur with prolapse. You can have a loss of intimate sensation, which you'd be surprised at how much women in our support forum talk about that. It's very, very bothersome to them. You can have pain with intimacy. Very, very common. And a symptom that I extremely rarely see in studies is tampons pushing out. This is when you have a prolapse and you insert a tampon vaginally, but you can't, all of a sudden, for some weird reason, you can't keep that tampon in and it just pushes itself out. That's a huge flag of prolapse because your organs are not where they're supposed to be. They're, you know, pushing the spaces they're not supposed to be hanging out in, and that's putting pressure, disabling that tampon from staying inside. 

So those are pretty much the most common symptoms that occur with prolapse. And they're very variable. So women can have just one of those symptoms, or she can have many of those symptoms. I mean, I had many symptoms of prolapse, but I had no clue it was a condition, so I didn't put two and two together. And for me, chronic constipation was the worst. I had that for years, no clue. You know, eat more fiber, drink more water, and nothing worked. 

Bruce Kassover: Wow. And, so how long can this condition be sort-of developing before it becomes really apparent to, you know, reaches the point where you seek out medical help?

Sherrie Palm: We have women in our space that were, they just noticed symptoms and they went to their doctor and they were diagnosed right away. We have women in our space who have had this condition for decades. Not recognizing what it was, and they would not, that they wouldn't report their symptoms to their doctors, for example, on the chronic constipation side, they can go in and ask their, you know, PCP or their, or their gynecologist, what to do about their constipation.

But POP curriculum is very poorly provided. Fields of practice that provide pelvic exams – and I think the urogynecology side, well, they're well, really well versed. The women's health physical therapy side, they're really well versed. But the other fields of practice that provide those pelvic exams don't have adequate POP curriculum.

And so it's not uncommon for patients who go to their primary care or their gynecologist and say,” I can't poop. I'm so constipated. I've been this way for a month now.” And the doctors will order diagnostic tests. Upper/lower GI, they may have a colonoscopy tests that they don't need to have if the practitioner was well versed in POP.

So there is really is no… you know, it's about, ballpark, two years before women realize they have it. It doesn't work that way because the symptoms are so diverse and the practitioners you see are from different fields of practice that frequently have insufficient curriculum about this condition. 

Sarah Jenkins: I was just going to add that I think, you know, I have read a lot about pelvic organ prolapse. I actually also have a pelvic organ prolapse I developed after my first son was born. You know, very similar, kind of like, ‘what the heck is this’ moment? And I think because mine happened during childbirth, I did experience some good recovery, you know, as I healed from childbirth and with physical therapy, but in some of my research, I have read that a lot of women may develop it and not even know it during childbirth because it might be really low grade one, you know, it doesn't affect them. It doesn't cause problems yet. But then as you get older, and as you were saying earlier, hormonal changes happen and cause some of your tissues to be thinner and your muscles start to grow a little bit lax, but they may have had it for years. 

Sherrie Palm: Exactly. Exactly. Yeah. Well, childbirth is a leading cause. Menopause is cause number two. There are certainly a bunch of other causal factors that come into the picture or can come into the picture, but those are the two biggies, the childbirth and the menopause. And so sometimes we're looking at women that have gone, they give birth and they may notice some leakage and they may have some problems with constipation, but no one's told them X plus Y equals Z, right? So they don't put the dots together, and then when they hit menopause and the estrogen levels drop and estrogen feeds your muscle tissue, muscle tissue strength and integrity. So of course, the pelvic floor being muscle tissue, that's going to get weaker. That's like a double whammy then.

And so that's for many women, that's when it becomes really problematic. They may have had some symptoms before. They may even be aware of pelvic organ prolapse, but because the symptoms weren't that bad, they're like, well, okay, I'll just deal with this. And then they hit menopause. It's a whole different ballpark.

I have conversations pretty regularly with women that are, I'm a fitness junkie, but I don't run and I don't lift heavy weights because those are both causal factors for POP and women love to run. There's a lot of junkies that love to run and, and they'll, they're determined to not give up their running. And they've done all the right stuff as far as, you know, trying to keep their body level. And then I ask them, you know, because they, they think I'm being, you know, ‘Miss Anti-fitness’ because I suggest that they explore the running layer more deeply. They get a little upset with me. because, you know, they love to run.

And I understand that. When you hit menopause and those estrogen levels drop and you keep running, guess what's going to happen? That bottom end is going to just cut loose and stuff's going to start happening at a more aggressive level. So, and certainly there are some fitness people that are so fit on that bottom end that they're good to go, but that's not the norm, that's not the majority.

So the estrogen loss is a big piece of the puzzle, a huge, big piece of the puzzle. And I'm sure not everyone's going to agree with me saying this, but once you become menopausal, it's thought of as, like, you go through this stage where you're in menopause and then it's, it goes away. Once you're in menopause, you're there for the rest of your life.

And if you're not supplementing with some kind of a hormonal protocol, whether you're using bioidentical estrogen, or you're using the traditional pharmaceutical, if you're not supplementing with something to keep putting some estrogen back into your body, nothing's going to rebuild that muscle tissue.

You can exercise and that helps obviously, but the estrogen loss is significant. It's a big deal. So women should be told, informed of that, you know, signal, know that ahead of the curve. 

Sarah Jenkins: Have you found in your research, Sherrie, that vaginal estrogen is effective over systemic or doesn't matter actually? 

Sherrie Palm: Vaginal is more promoted and it, it's a good thing in a way that a lot of women experience atrophy with the drying of tissues in the vaginal canal. It's very uncomfortable, so it's very, very beneficial from, from that angle. I use a combo, I use both systemic and vaginal estriol, so it's just a matter of, of how, what your normal is. Where your baseline was at and what happens is that changes as its life cycle goes on. And I use, personally, I use progesterone, I use vaginal estriol, and mine are all topical. I don't, I shouldn't say, I shouldn't have said ‘systemic.’ This, mine are all topical. They're all creams I put on. I don't swallow any pills. It gets right into the system, putting it on your skin. 

But I also use testosterone. So the combination from woman to woman, or the type from woman to woman is going to vary depending on what your individual needs are, and it's really a value to have a baseline evaluation of your hormone levels and include testosterone in that because every woman has got testosterone, every man has estrogen.

We just don't talk about that really openly and discuss it openly. So as a woman, you can lose your testosterone level to the point where you've lost your libido completely. Your sex charges just went out the window for some reason, and you don't know why. And having a balance of the right amounts of each is critical. And that means blood testing to know where your levels are at or some kind of formal level testing to check that. 

Bruce Kassover: So if a woman is noticing that she has some of these symptoms, what do you recommend her next steps are? Do you go to your general practitioner first? Can you seek out a specialist? You, you mentioned urogynecologists in particular. What would you recommend for a woman who says, “Hey, this might be pelvic organ prolapse – or something else”?

Sherrie Palm: Typically, it's best for women to see their primary care practitioner or gynecologist first, get a baseline screening from them, but be aware of the fact that when they do a vaginal exam, which is what they do, a pelvic exam, a vaginal exam, to diagnose prolapse, what happens when you're laying down on your back is your organs float back into the normal positions. So when your doctor, your primary care doctor or your gynecologist is assessing you for prolapse, they may not recognize the degree of severity or even that you have prolapse because your tissues are no longer bulging out like they were when you were standing up and, and it's a gravity thing that makes those organs come down. So it's really important. A lot of women, this is going to sound pretty graphic, but a lot of women take pictures when they're standing of what that tissue bulge is so they can show those to other doctors.

This is, a doctor may say, “Well, it's not that bad. Go home, go your kegels, come back and see me in a year, don't worry about it.” And behind APOP, we're all about proactive. There is no such thing as, it's no big deal when it comes to prolapse because it's going to advance because of lifestyle behaviors, et cetera. 

So you see your PCP, your primary care doctor, you see your gynecologist. If they tell you it's not that bad, then you whip your phone out with your picture on it, which obviously you want to delete that picture as soon as you're done showing your doctor. And then typically how, what our patient following tells us is, their doctors say is, “Oh!” They didn't realize it was that bad because they're not subspecialist urogynecologists; they're their gynecologist or primary care. 

Then they will refer you either to a women's health physical therapist – and they're fabulous; love, love, love them – or a, and they do the non-surgical stuff treatment-wise, or a urogynecologist, and they handle both nonsurgical and surgical options for treatment, and they will give you a baseline of, “Okay, here's what I found.”

They can tell you definitively what types of prolapse you have, what grade of severity you have, and that kind of points you in a direction of what the next steps will be. Women, typically we find if, if they're fitted with a pessary, which is the doctor does, the physical therapist does not fit pessaries. The doctor fits a pessary, which can be, that can be a gynecologist or your primary care or the gynecologist. Any of those three can fit a pessary, which is that support device that goes inside your vagina to hold your organs up. So they may send you with a pessary. Physical therapist has multiple types of treatments that they can educate you about. They will do a vaginal exam also. They will check to see internally, what tissues are where to give them a better idea of what tools would be best to use for treating women individually. They may train you how to do Kegels. Women have heard of Kegels. They don't always know how to do them properly, so they'll train you in how to do a proper Kegel.

They can refer you to different types of pelvic floor or core muscle strengthening exercises to help shore up that whole part of your body, make it stronger to help support your organs. They can talk to you about biofeedback or some physical therapists actually do biofeedback, which is how they, they can hook you up to a machine with electrodes and that can gauge how your muscles react and help train you. “Okay? This is what's going to happen now.” What, how your muscles feel when they're contracting, if they're contracting properly, how to help you learn how to recognize sensations to strengthen them. There's support garments that women can wear, which if you're going to run, put a support garment on, please.

I'm begging of you. And that's kind of like the old-fashioned girdles, except they don't call them girls anymore. They're made out of Spandex, and they're much more comfortable and user-friendly, which can support the tissues around those organs and kind-of help pull them in place. 

There's tibial nerve stimulation where they can hook up electrodes to a nerve in your ankle area, and that kind of helps with the whole, not just strengthening the pelvic floor, but the incontinence side of the equation.

There's that vaginal tissue rejuvenation therapies that they can have done. Some of them are laser-based, some of them are radiofrequency-based, which helps strengthen those tissues in there. But that's, most of these treatments are temporary. You have to keep doing them over time. There's myofascial release therapy, which is, sometimes women have got a a tight, they have tight pelvic floor muscles as well as weak muscles, so they're both tight and weak. And a physical therapist can help you understand that. And sometimes they'll use these internal massage therapy techniques to kind of help loosen up the tight muscles so that they're not so painful. So there's a variety of treatments. 

Typically women will have multiple different treatments that they're using. They've got all kinds of app exercise apps. Now. there's one that's actually like a game. It's like, and you're trying to make the birds jump up and over around, you know, blockades and trees and stuff, and some may adapt to that easily. There are some kinds of non-surgical devices, and there these devices are mostly, and the apps are mostly related to something that you insert vaginally and then you're squeezing against it. There's some devices actually, and apps include biofeedback and the strengthening exercise regimens kind of separately, and you can look on your phone, actually see by a moving wand if you're contracting properly. So again, the treatments that there's all over the page on the non-surgical side and surgery wise, you're looking at vaginal surgery versus abdominal surgery.

And abdominal surgery can be robotic, it can be laparoscopic, it can be an abdominal incision and. On the vaginal side, they can't use mesh in surgeries when they're doing repairs. Vaginally, that's called Native Tissue Repair, where they're just actually sewing tissues together to, to lift them up. And with the abdominal approach they can use mesh.

And there's a lot of controversy about mesh, and we'll talk about that in a second here. Mesh to help hold those organs up where they're supposed to be taking place of the support structural tissues. So there's many different types of prolapse surgery, many, many different techniques that they use and.

The baseline with the, the reconstructive surgeries is they're repairing damage, but there's also what's called obliteration procedures where they literally, this is going to sound pretty freaky, sew your vagina shut. Now obviously this is not done in young women. I don't know of any urogynecologist that will do that procedure if you're under the age of 65, but for some women in mostly in their seventies or above, they're having zero interest in sex and they just wanted their prolapse fixed the least invasive, safest way possible, and that would be colpocleisis surgery, which is sewing the vagina shut. So obviously they go through extensive question-and-answer sessions with their urogynecologist to make sure they recognize and realize that means no more vaginal sex, no more intercourse.

But everyone that I know that's had colpocleisis surgery done has been very, very happy with the outcome. The heal curve is very fast, pain is very minimal, and I've asked a lot of urogynecologists because I assume this wasn't done very often. I've asked many urogynecologists how often they do colpocleisis surgeries, and they all say, “All the time. We do 'em all the time. It's commonly done.” 

So is one of those layers that's not talked about out loud. They can, on the mesh-versus-no-mesh side, mesh is a very valuable tool in the right hands for the right patient. There were a lot of mistakes made in the past and in the 2008, 2011 timeframe. And by the time they recognized that there was a lot of cases of complications with mesh being inserted through the vagina for repair.

So that's not to say that it's mostly successful. Mine was done that way. And I know a ton of urogynecologists that had successful surgical procedures inserting mesh vaginally, but that tool was marketed to gynecologists as well as urogynecologists. And so, there was improper training, insufficient training, and a urogynecologist has got two to three years of extra schooling after becoming a gynecologist.

They're the experts in that pelvic space. So it's not the mesh that was at fault, it was, well, typically the ‘who was doing it, how they were doing it’ kind-of scenario. And it's still used frequently. And the value of mesh is, it's long-term success with surgery. There's no hundred percent guarantee that it's going to last you the rest of your life. Life happens, different stuff happens to your body. We age, the body degrades, et cetera. But by and large, I've had, my insertion of mesh was 2008. I'm good to go. So I don't say I'll never have to have surgery related to prolapse again, because I don't know that. The slings that they use for incontinence, I mean, are the same material that the mesh is made out of to treat prolapse surgery.

So there's a lot of misconceptions, misunderstandings in in the mesh space, and I encourage women to research all options when they're thinking about surgery. All surgery comes with risk. It doesn't matter what kind of surgery you're having, it doesn't matter if it's for prolapse or for incontinence or for kidney failure or whatever your surgery is for. Every surgery comes with risk, so there's no 100% success with any procedure guarantee ever. And I'm always amazed when people are heading into surgery that they assume, you know, the worst and panic and get anxious and so on. Do your homework. Look up all the information that you need to have prior to surgery before you make a decision to move forward with surgery.

Recovery time with prolapse surgery is very variable depending on what procedure you've had done, whether you've had mesh or not, whether you've had one type of prolapse fixed or three types of prolapse fixed, the technique used is so… generally they ballpark around six to eight weeks for the surgical heal curve.

I encourage urogynecology to tell them in 12 weeks just to play it safe. They can go back to work at six weeks if they feel up to it, and they may go into when, say, you have a, you're a secretary and you're sitting all day, it may be uncomfortable for you to sit all day after prolapse surgery at the six week point. So having that leave time, that that time span, flexible is of good value for women. 

When we think about prolapse coming back, having it again, what I find when I look through studies is, I don't often see information that differentiates… You have, let's just say you had a bladder prolapse fixed, and then the next year you have uterine prolapse, and that's not recurrence, that's a different type of prolapse. If you have bladder prolapse fixed and then a year later you have bladder prolapse again, that's reoccurring prolapse. So again, kind of a misunderstanding in the space. And this is just a matter of doctors appropriately educating their patients appropriately, educating themselves about this condition.

It's just, it's so variable and we see women go about, typically about two years using a pessary and or other non-surgical treatments before they opt for surgery. And usually they opt for surgery because they're just tired of digging around with it. They're just like, “Just fix it!” 

Now that doesn't mean you quit doing maintenance. When you go to the dentist and you have a cavity fixed, you go home and you brush your teeth. You don't just do that to keep your teeth clean. You do that to maintain the health of your teeth. And so when I think about prolapse and the intersects of those symptoms that that display, I think about it from the maintenance side, maintenance for life.

I, yeah, I'm a fitness geek, but I recognize the stuff I shouldn't be doing. A good example of this that women don't recognize the things that cause prolapse that you might want to reconsider whether or not you should be doing it or not, the hard foot strike fitness activities… Speed walk. Speed walking is great. It exercises all the long limbs in your body, all the long muscles, and if you do it fast enough, you're going to get the aerobic effect out of it too. When you jog or run, that hard foot strike to the ground, it jerks all your organs down. And so doing the kinds of exercising that are not going to be harmful to your body is very valuable.

That, that's a good thing. If you can learn the proper way to do a Kegel and doing them, whether you're using an app on a phone, some kind of a medical device that you purchase, do them routinely. Very often we're busy, and women are busy. We're working, we got children to raise and all the school activities to go to and making the meals and cleaning the house and blah, blah, blah.

So finding time to do maintenance is hard. It's hard to carve out time. And if you're using a device that you insert vaginally, you have to be in a private over the door closed to do it. And kids might be knocking on the door on the outside and the husband's out knocking on the door going, “When's dinner going to be ready?”

You know those interruptions. You have to find the timeframe and the space that is user-friendly for you so that you'll continue to do it and consider that time ‘me time.’ That's how I think of my exercising. I exercise in the morning. I jump on the computer first, and I just, emails that have come in and touch base in our forum, but after I get past that hour, hour and a half, that's my exercise time and my family knows, if you start blabbing at me when I'm exercising, you're going to get growled at back in return because that's my me time. So looking at this through long term, through end-of-life lens is priceless for women staying on top of it, recognizing that I, you are going to have pockets where you slip up, but get back on the horse. Get back on the horse. Get back on the horse when you realize that, and then maintain that course as best you can to the rest of your life. And know that anything that happens with your pelvic cavity can be addressed. Either surgically or non-surgically. 

And there there's a small pocket of women that have the biggest struggles. Those are the ones that've had Ehlers-Danlos syndrome, which is a tissue integrity condition that is genetic, and that's a real tough row to hoe, and that creates extra issues for them. But by and large, the majority of us, if we stay on top of our maintenance and do the right stuff, the majority of the time, we’ll sail through pretty good.

Bruce Kassover: Well, now you're talking about maintenance and management and a lot of the physical things that you can do to help keep things under control. Maybe you want to talk a little bit about the mental side of things, because I can imagine that could be a real struggle as well. 

Sherrie Palm: It is huge, Bruce. Impact to self-esteem with pelvic organ prolapse is probably the hardest part of what women have to navigate. It impacts women physically, emotionally, socially, sexually, in their fitness regimen, in their employment. So it pretty much dissects through every aspect of their lives. But when we're talking about self-esteem, women are devastated. They feel less than, they feel dirty, they feel icky, and they're terrified that their intimate partners, if they see that bulge are going to be turned off. There are women that, because sex is painful, it's hard for them to engage in intercourse, that causes conflicts in the relationship and that impacts her self-esteem.

When we, we think about how it impacts our body image, how we feel about ourselves mentally and physically, both, how that ripples through our daily lives, how do, how do we navigate that? Well, the most beneficial thing that we have found to be helpful for women is being in a support forum. 

Now there are a few pelvic organ prolapse support forums out there now, and they're pretty much, as far as I know, they're all, well, I, let's say 95% of them are Facebook-based, and our forum has got 29,000 women in 184 countries. And within our space, what's different from our space and other spaces is, we've got a pretty strict base of rules and guidelines in our space. We don't permit any bashing, member-to-member bashing. They have to be kept pretty… you can, you can talk about the graphic nature of prolapse, but we don't allow a lot of like out of control swearing and that kind of stuff. Now you can, obviously, the baby words are all fine, but anyway, the bottom line is, is we run a pretty tight ship and the members in our space thank us for that, and they not only come into us to learn from other women about all of these issues of prolapse, but they also come in for the emotional support. So when they're having a particularly down day and their bulge is really bad and they feel horrible, they see it, they feel it, they're uncomfortable, and their significant other, or their husband, their partner is acting a little amorous and they're terrified because they not only feel icky, but they look to them selves icky as well. They can come into our form and they can dump their stuff. They can talk about all those anxiety-provoking layers and that lifts them up. And when a woman does that, she comes in there and she, she shares her story, her question, her concern. She is surrounded and answered by other women who have ‘been-there, done-that,’ experienced the same thing.

So to address the emotional impacts that self-esteem impacts, having support in no matter what form you find it valuable, whether you join a support forum and we screen very aggressively on our side. We don't, it's female-only in our space, unless they're doctors, and I don't know how much the other prolapse forums screen the request to enter. 

But, but when you, when you have got a space where it's a secure space and we can come in and talk about any of their prolapse aspects, it lifts them up. It truly lifts them up and helps guide them on their path to prolapse recovery, whether it's to sticking with the non-surgicals or having surgery to fix the prolapse itself. So self-esteem is right behind awareness in what we do, addressing those self-esteem issues. It's a big deal. It's a very important big deal. 

Bruce Kassover: It sounds like an amazing resource. So maybe for people who are interested in going themselves and visiting your organization, your forum, how can we find you?

Sherrie Palm: Well, if you Google APOPS,  A-P-O-P-S, our website will come up on the internet and you can go into our website and you will see in the dropdown menus at the top of the page, you will see ‘forum.’ And also on any, like, the homepage has also got a link to it and different pages that you, we've got the forum link on several pages on our website.

Then when you click on that link, it brings you into our forum. You don't get right into the form. You get into like a queue, a holding queue, and you'll be sent three questions. It's Facebook based, so you have to have a Facebook page to get in there, and you'll receive a message in the Facebook, your Facebook page.

This has three questions. You have to respond to those questions, and they're very basic questions about why you want to enter our space, that kind of stuff that gets you into the queue to be screened. And then we go into the Facebook page and we look at your page to see if you're a legitimate person – we don't want any bots, we don't want any men. It's not, ‘we don't want men in there.’ It's just that the women feel more comfortable having an all-female space. And then once you've been screened, then you're, the gate is open and you're waved in, and that can take one to seven days, depending on how many women are in the queue ahead of you.

We typically get between 150 and 200 requests to enter per week. So sometimes it takes a little bit more time to go through the screening process. But within a week, you're in if you're going to be let in. And if you're not let in, then you usually, if you're, you know, question it and you want to know why you can't and you're not in yet, whatever, we'll answer you.

We'll respond to you from our volunteers that run the forum and they can give you information, further information about the whys and the how's and the wheres and that kind of stuff. So just you Google APOPS and you look for the word that says ‘forum,’ and then you'll be fed the information that you need to try and try and get in.

Bruce Kassover: In fact, while you were talking, I just did that myself. I just went to Google. I typed APOPS, and you guys are the very first hit. And the website itself is a little long. I'm going to put a link to it in the show notes. It's pelvicorganprolapsesupport.org, correct? 

Sherrie Palm: Yeah, that’s the one. 

Bruce Kassover: It's a fantastic website. I mean, you have an enormous amount of resources here. If you could, if you mouse over the resources button, there's just tons and tons of information, so I definitely recommend people go and check you out because then it, it's a fantastic destination for people. 

Sherrie Palm: Oh, thank you. Thank you. Yeah, we just had the, the website rebuild. It's been a, one of those six months labors. Finally born! So I'm very, very happy about that. 

Bruce Kassover: Oh, we, we know exactly what that's like... 

Sherrie Palm: You went through that. You guys know. Yep. 

Bruce Kassover: Yeah, absolutely. So now, as you know, this is Life Without Leaks. And one of the things we'd like to do as we wrap things up is leave our listeners with one little hint, tip strategy, bit of advice to help them live a life without leaks. So maybe you have one you could share with us today. 

Sherrie Palm: Well, I think the most important thing that women can do to help themselves, and that's the pivot point here, is pay attention to your body. Pay attention to signs and symptoms of your body that it doesn't normally make. If you're having leakage, if you're chronically constipated, if, if you have pain, if you've got, if sex is painful for you.

Some of those, those life shifts are important to recognize you need to do something about and explore more deeply. So, assess your body. Pretty much, you know, pay attention to every day. And if something's out of whack, do go see your primary care practitioner. Do go see your gynecologist, and write your questions down. Don't be embarrassed to ask any question. Health is health and experiencing things like incontinence or tissues building on your vagina, that's health. That's nothing to be embarrassed about, and feel comfortable asking your practitioner about those symptoms. If you write them down and you're looking at that piece of paper and you're reading them off that piece of paper, you might not feel quite as uncomfortable talking with your doctor about them.

Sadly, patients are really asked questions about the pelvic space, and they should be asked about that, so pay attention to your body. Write your symptoms down, take them to your doctor, ask your doctor about those symptoms. And then as you work your way through finding the answers that you need, and Google can be your best friend, but Google can also sometimes have inaccurate information, so go to sites like NAFC, go to sites like APOP to find the accurate information for your symptoms. And then when you find out what you have and you work your way through treatment and even post treatment, then share your information with the other women that you know and love, because one of the biggest roadblocks to what we're trying to do in both of our organizations is overcome the stigma that's attached to vaginas, overcome the stigma that's attached to incontinence, overcome the stigma of tissue spilling over the vagina.

This is health. This is simply health. And the more we talk about it out loud, the more women will know this stuff and the more they'll get comfortable with it. If we think back to when, well, you guys are probably too young to remember, but back in the mid seventies, 1970s, you could not say the word ‘breast’ out loud on radio, on TV, in a newspaper, in a magazine. You could not put it in print or say it out loud. Look where we're at now. That's where we need to get with vaginal health, intimate health, incontinence, all of these subjects, we need to be on that page so that women are comfortable talking about these layers and issues openly. Get the word out.

Bruce Kassover: That is a great and incredibly important message, and thank you for sharing with us. We appreciate it and we appreciate everything you had to share today. So thank you, Sherrie. It's really been great. 

Sherrie Palm: You're so welcome, Bruce and Sarah, and I'm so happy to tag in with you all and shine a light and share the information. It's all good. 

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.