Today, we bring to light a deeply personal journey through pain, healing, and self-discovery. We'll explore the intricate relationship between spinal health and pelvic wellbeing, delving into how issues like persistent genital arousal disorder, or PGAD, are not merely sexual but deeply interconnected with our spinal anatomy.

With me is April Patterson, a courageous pelvic floor physical therapist who shares her battle with PGAD. Prepare to be taken on a story that stretches from the trauma of pelvic symptoms to the victories of surgery and physical therapy.

As April recalls her years of suffering, reduced work hours, and limited joy, we'll uncover the profound impact of a mysterious injury that intruded on her everyday life, even affecting simple tasks like driving, working, or enjoying meaningful relationships.

We'll tackle the complexities of diagnosis and treatment, discussing why it's crucial to seek professionals skilled in both orthopedic and pelvic health. April's story isn't just about struggle; it's a beacon of hope, highlighting the importance of prehabilitation, the value of informed self-advocacy, and the power of trauma-informed therapy.

By the end of this episode, you'll understand why the pathway to healing isn't one-size-fits-all and how embracing a holistic approach can pave the way for reclaiming one's life from the grips of PGAD.

Highlights:

• April shares her journey with PGAD, from the onset of symptoms after an orthopedic injury to seeking treatment and undergoing spinal surgery, highlighting the immediate positive results on her neural symptoms.
• The importance of a tailored physical therapy approach is emphasized, focusing on the need for therapists skilled in both orthopedic and spine rehab, especially given the intertwining nature of the spine, pelvic health, and sexual function.
• The psychological aspects of living with PGAD are explored, touching upon the trauma and emotional distress caused by the condition and the need for a trauma-informed therapy approach, including the importance of prehabilitation and rehabilitation.

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Hey, y'all, it's Dr. Samina Ramon Gynogirl. I'm a board certified gynecologist, a clinical assistant professor of OBGYN at Northwestern Feinberg School of Medicine, and owner of a private practice for almost a decade that specializes in menopause and sexual medicine. I'm a south asian american muslim woman who is here to empower, educate, and help you advocate for health issues that have been stigmatized, shamed, and perhaps even prevented you from living your best life. I'm better than your best girlfriend and more open than most of your doctors. I'm here to educate so you can advocate. Welcome to Gynogirl presents sex, drugs, and hormones. Let's go.

You guys. I just did an amazing podcast with April Patterson, a friend of mine who's a pelvic floor physical therapist that specializes in pelvic floor pt, especially for patients that have persistent genital arousal disorder. And she talks about her journey with PGAD and also talks about her treatment strategies as a therapist. And so you guys are going to really enjoy this one. I hope you enjoy it and learn something about how and I hope you learn something about how to advocate for yourself through this educational journey. Hey, y'all, it's me, Dr. Samina Armand Gynogirl. Back for another episode of Gynogirl presents Sex, drugs, and hormones.

I am super, super excited today. I have a friend of mine here on the show who we befriended many years ago at Ishwich, the International Society for the Study of Women's Sexual Health, which you hear me talk about all the time, but we're going to today talk about persistent genital arousal disorder and what that is, and we're going to learn about April's story. So today I have April Patterson. She is the owner of whole Body Physical Therapy in Studio City, California, which is a private practice that specializes in pelvic health, physical therapy for all sexes and genders and gender identities. She has been a physical therapist for 20 years, practicing in orthopedics and sports medicine for the first nine of her career, and then she shifted into pelvic health eleven years ago after the birth of her second child. Her passion for pelvic health began long before that, through her own journey in healing and managing persistent genital arousal disorder, or genital pelvic dysthesia symptoms. She was symptomatic for 13 years before she underwent spinal surgery in 2017, which set her on the path of permanent resolution of her symptoms. She is a member and expert on the Ishwish Consensus panel for PCAD and co authored the Iswish Process of care paper for the management of persistent general arousal disorder and general pelvic dysthesia.

I use this every day when I see my PGAD patients. I show them this, actually, I show them the process of passionate. She's extremely passionate about pelvic floor therapy, but also about PGAT. And so this is really an amazing opportunity for us to learn not only more about PGAT, but about specific journeys so that we can all learn how to advocate for ourselves like she did. Thank you, April. Welcome.

Thank you so much for having me. I'm thrilled to be here.

Awesome. So I just want to first explain a little bit about what persistent genital arousal disorder for the listeners who actually are not familiar with it, and just in general, it's considered a condition where you have an unrelented sort of remitting sensation in the genital pelvic region, and it's associated, and it's potentially these feelings of arousal without thinking about sex or wanting to have sex. And so it's associated with significant psychosocial impact on patients lives. I know from the patients that I've treated, there have been patients that have been suicidal with this, that have been dealing with it their whole life. It's extremely misunderstood and understudied, just like most of sexual health. I think the first case was reported in 2001. And really, we have a process of care of how to treat patients for this. And I'm going to let April get into this a little more detail.

But essentially, we do it based on the regions that we think are most contributing to this neuropathic pain syndrome, for the most part. And we're looking at either the end organ, which is considered region one, and that could be your clitoris, that could be your vulva, that could be your vulvar vestibule, that can be your bladder. And then it could be related to vestibulodynia, it could be related to vulvar dermatoses. It could be related to clitoral pain and adhesions. And then the region two, which is the pelvic floor and the importance of that musculature. Region three is considered the cada aquina, which is the convergence of all your spinal nerves at the end of your backbone, the end of your vertebrae, and then region four is considered the lumbar sacral area. So your spinal cord, again, a little bit above the cauda aquina, and then region five is your brain. So if the signal is believed to be coming from the brain.

So these unrelenting feelings can come from any of those. It can come from the nerve endings, it can come from the nerve roots, or it can come from the brain. Remember your spinal? We talked about this in the podcast about clitoral pain, but obviously remembering that our central nervous system is composed of both of a brain and our spinal cord. So these areas communicate with each other. They send signals down the spine, to your peripheral organs, to your end organs. And this is how our nervous system communicates. And sometimes when it goes a little out of whack, it can create very distressing symptoms, whether or not it's just regular pain, whether or not it's burning, whether or not it's symptoms in the area where you have erogenous tissue. And that's what we're going to discuss.

So, April, I actually met April for the first time at Ishwish, and I think I remember hearing her compelling story when the link between the spine, and I like to say I was always almost in the room where it happened.

But I wasn't in the room where.

It originally happened, which is where. But I was almost in the room where it happened, because I heard her testimony to the international study of, the study of women's sexual health, all the providers that came from all over the country in the world. And so she was very brave. My first podcast, I asked, am I brave or am I shameless for doing this podcast? But I might be shameless, but you're definitely brave. So I appreciate you coming on the show, and then please tell us how you knew something was wrong when it came about and sort of your journey into self advocacy.

Thank you. Thanks so much for saying that. Overall, it was really an orthopedic injury that eventually reared its ugly head and progressed into something where most of my symptoms were in my pelvis. I'd say I was a college soccer player, and I wasn't.

That's amazing. Tell me, what was your role in soccer?

I was a left dependent, left back. I also was a figure skater growing up, so I had back pain most of my life. I put my back in pretty extreme positions, and I think just the mentality of an athlete, especially back in the early mid ninety s, you just went back out there. So I was always plain hurt. And I was cleared by my athletic trainers. I had, they diagnosed me with a thigh joint dysfunction. All my symptoms were always on my left side. It was like, it was very eerie.

Eventually, when things progressed so much, because it was like one half of my body was completely different than the other side of my body. And it was just very strange. But that's what I knew. And I'd say I started having persistent general arousal symptoms. It wasn't distressing yet where I would say it was a disorder. I just noticed sitting in class in college, it would take a certain amount of time. If I were studying in the library, after a couple of hours, I'd be like, oh, what is that? It didn't distress me. I was like, maybe I'm bored.

I'm like, daydreaming, or I would walk, I'd leave, I'd be gone. And at the time I was dating, who's now my husband, and when we would have intercourse, I'm just going to go right there right now. We would have intercourse and from deeper positions. It would cause this pain in really deep. I call it, like, my left corner pocket. Back then, it felt like I was getting socked in my spine. And it felt like eventually he was hitting my sciatic nerve and I would start to get leg pain and I'd start to get a burning but deep nerve pain in my vagina. And eventually it would just go away and fast forward, and I would sort of clench around that.

And we communicated. But I was like, 21 years old, and, I mean, you don't really know at that point. PGAD wasn't even mentioned yet in the literature. There was really nowhere for me to go. And there's no one I told about that. I didn't even know anything about that. Right? And then by 2008, I was an orthoped, and I'd run on my lunch breaks, and all of a sudden on my runs, I would get the same burning vaginal pain. And I was like, this isn't right.

Something's wrong here, because why would I feel my sex symptoms when I'm running and that already is like, it's not coming from your vagina. Maybe there's a polyfloor problem. The forces change when you work. Like, when you work out, things change. I wasn't familiar with pellet floor physical therapy to definitely piqued my interest of, like, how am I going to fix myself? Who am I going to go to about this? So my coworker's wife was a Pelley floor physical therapist. I started going to her, and then eventually I found someone who was like, my person, who really worked with me through some of my worst years, and she could sort of get me back to what a baseline was. So I was functional through my pregnancies. And, I mean, those were really hard, especially my second pregnancy as you know, after you have a baby, I had no core left, like my spine was.

I think that was like the nail in the coffin, so to speak, the second carrying of the baby, just like my spine just never really recovered after that. And my symptoms at that point, postpartum. And again, this was slow. This took time. I had left hip pain burning in my hip. Oh, you have pariformis syndrome? I don't have pariformis syndrome. I never really fit into any box. I thought maybe my skating, the way I was one sided and always tilt, like, maybe I actually did have a puddle nerve entrapment.

But the amount of different nerve sensations that I had pretty much all the time, that at a lower level, that once I sat down, would just shoot through my body. I had the PGA, the persistent arousal I had shooting into my hip, which felt like was going to the spot in my vagina, stabbing in my rectum. Eventually, I was getting twitches. It was a neuromuscular problem. I was getting fasciculations in my pelvic floor, in my rectum. And over time, I sort of learned little tips and tricks to keep me functional and get through my day. But by the end, nothing could touch my pelvis. I was so sensitized.

If anything, like anything just sat, it would just immediately shoot. And it was like the whole nerve pathway. If you go look at the anatomy from, I had an l 45 disc surgery. If you look from there down, it was everything. It was my cloneal nerves. It was everything. Like, this is not preudental neuralgia. And so I didn't tell anybody.

My husband knew somewhat, but I didn't ever go see a professional at that point. I didn't tell my gynecologist who delivered my baby. I think being on the other side of things, I thought they would tell me, you're crazy. They would look at me, and many.

Of them say that to.

And they do, and I know that because I'd see people with pelvic pain, and I'm like, I don't want to be in the other end. I was highly anxious, and that would have been devastating to me, so I just avoided it altogether. I don't recommend that, but I do think at the time, I really didn't have an option. There really wasn't anyone who was doing this research. It was not as well known as it is now, and it's still not well known. Right. I didn't want to be the crazy one. I didn't want to be the crazy patient.

I didn't want them and I had to. Towards the end, when I finally started getting help, I had to go get an x ray of my spine. How was I going to get that approved? I had to be honest. I had to be vulnerable. I had to tell. I sat in a room with these intake sporty looking people, and they were like, okay, where's your pain? And we looked at the dermatome diagram, and I pointed to, like, s three, s four, s two. And they were like, that doesn't make any sense. Like, you don't make sense.

And everyone would tell me that. And then the doctor would be like, I think this is from when you delivered your baby. And I'm like, I had two c sections.

You didn't even have labor.

I didn't tear. No. And they sort of just looked at me, and this is a place I took my kids to. That's where they had their sports injury. And I was like, I just need that. Just give me the MRI. Because. Give me the MRI.

Right? And that was when we got the ball rolling. But before that, I'd say, when I was at my worst.

Yeah. What was your tipping point? Because obviously you'd been struggling for a while. You found ways to kind of deal with it. Maybe arousal got better. Sometimes with sex, maybe it didn't. But everyone has a tipping point at some point, right, that they'll feel like. And I think what's interesting is you and I are both in the medical profession. We both had issues, and I talked about vaginismus for myself.

But it is this whole idea that, how are we going to present ourselves to somebody? And it's this idea of like, oh, yeah, are they going to be like, what's wrong with this other medical professional? I don't know. You try not to make yourself that vulnerable.

I guess I felt like I didn't have a voice. Like I couldn't speak up. I felt like I couldn't speak. And so I just stayed quiet. And a lot of this was really through my healing. When I did get the care I needed and I did find solutions, it was very emotional. And I evolved as a person through all of this because I came out the other side, but also I had to learn to create. Like, I was just so used to just putting up and being in pain.

And in order to heal well, I had to put myself first a lot. I have two little kids. I had to really create the boundaries for my health and healing, which I think, too, even with our own patients, you just want to be the person you were. You want to be that I used to do everything and now I can't. And who am I? And who am I? And it doesn't mean I won't get back there. But I really struggled with when things were bad, when I was at that tipping point. Who am I? I don't know my role anymore in society. I'm a mom.

I can't pick up my kids. I can't sit on the floor with them. I have to say, oh, mommy's back hurts all the time. When is mommy's back going to get better? It was very emotional. And even just within the marriage in my relationship, I am a doer. I could go, go, push, push, push. Push isn't great. Push is not good for you.

Pushes.

Balance is really what we should be striving for. But I had to really reprogram what. This is what I need and these are the things I need. And how am I going to change my life and my lifestyle so that I can get better? Because it's not a quick fix. Surgery was amazing. Without it, I would not be better. I would not be better. I needed that surgery.

And thank God I had that surgery. But I really had to reevaluate my entire life and how I was living and make it so I could heal optimally and just take care of myself in every aspect. And really, that's how I was there for my kids and my family in the long run.

Amazing. Sorry that you struggle like that, but this is actually a very common. Unfortunately, we see the patients like this all the time, right, that are trying to do everything for everyone, but then at the end of the day, they can't make time to take care of themselves. And then eventually everyone hits a tipping point. Like, all right, if I don't do this, then no one in this whole sphere I'm in are going to be able to function, right? Exactly. So what was your tipping point?

I remember being so sad, like, just so. I don't know what I'm going to do from here. I am becoming disabled, and this isn't who I am. This has never been me. So tipping point. The pain was atrocious, the arousal was atrocious. So the way it feels, at least for me, I know it's a little bit different with everyone. Some people have an orgasm, they'll get a little bit of temporary relief, and then it comes back every time I sat down, which is similar to, like they say, oh, that's similar to pudendal neuralgia, too.

When you sit pain with one sided. But mine was my entire leg like, sciatica would go numb. And then I think I said I had many different nerve pathways that felt like many peripheral nerves were affected, even though they was coming from upstream. But the orgasm piece, it went from, like it used to take me. Remember in 2013 when I started, like, I had mad, my second kid? I started driving further, and then I was working about a 40 minutes drive from where I dropped off my first son to preschool. And that drive to Santa Monica was brutal. Every single time I drove to work, after about 20 minutes, that was sort of when things really kicked in. I would start having the throbbing.

The throbbing pain in my genitals. I'm building up to an orgasm, and I would eventually, if it were an hour, I would have to pull over. I would be having these involuntary contractions that would lead to orgasm. And I'm just trying to drive to work, and it hurts. It's never pled.

Like, the four or five shouldn't make anyone organize me.

Yeah, I know. I'm like, exit now. Drive someplace maybe no one can see. I'd park and I'd walk to work, and my leg would be, like, throbbing in my genitals. And then by the time I walked for about, like, ten minutes, I'd walk from my car to work, I was okay again. Like, not okay, but I was at my baseline again, where I could do my job. So that's sort of how the organ. And then with my partner, that position that originally started the sciatica, that became a no gamer.

Between even my pregnancies, there was no rear entry, no deep, nothing of that sort. Or I would be in tears, and it would make my symptoms worse. So our sex life definitely evolved over time to, like, we can't do this. We can't do this. We can do it this way. This is something I can do. But even just with self stimulation, masturbation. I used to be able to have a little bit of relief, and then it would come back, but now I almost couldn't peak and climax.

I almost couldn't climax. It was almost like I became. Even though I was hyper, I was hyper aroused. My motor function had changed. Like, my actual orgasm had changed, and it was dull. I couldn't get over the hump. I just couldn't get there. It would take longer.

It would hurt. And it was like, what do I do? Okay. I was just in this in between zone all the time. And then when I sat, it was just, like, blew up. So by the time that wasn't even really my rock bottom, I was getting there right I sat down in the car. My kids are in the backseat crying, just like, let's go, mom. And I'm like, and the second I sat down, it was just searing and I was shifting to my side. I tried the donut cushions like nothing was enough.

And then it's like, oh, mom can't drive us anymore. Oh, I'm avoiding going to dinners. I'm avoiding being social. I'm avoiding meeting with friends. I used to enjoy all the things we would do at our school. It was like, what time is that? Because by the end of the day.

It would be pretty bad.

Yeah, by the end of the day. And they'd run and jump up, up to me. And I used to be an active person that played with my kids. It was like I was a shallow of myself. I didn't know. So that was, I don't know what I'm going to do. Something has to.

Did you find yourself catastrophic? Because I have a lot of patients who either had anxiety that might have promoted this or contributed to this, or they develop anxiety because they catastrophesize about. Especially if you've struggled so many years, you feel like this is never going to go away. And I think that then leads to more anxiety, more depression. And that's why, unfortunately, there are PCAD victims who will actually attempt to take their life because they've been dealing with this for so long. And that's some of the most compelling stories that we hear, I think, is that what an amazing thing for patients when they see you.

Yeah, I was there. I was close. Yeah. I didn't have suicidal ideations. I didn't have anything like that. I really started to feel like I knew. I'm like, this is only getting worse. I could always keep it where I was functional, but this has now gone over, and I don't know how I'm going to get back.

And I had taken a trip around that time. It kind of crazy when I look back at it. I did a backpacking trip with my husband and I bought a backpack, and I remember going to Rei and was almost in tears, and I probably seemed like such a bitch. Like, they were like, what's wrong with that lady? Because I was nice about it, but I was like, I can't use any of these backpacks. Nothing could touch my pelvis. Nothing. So I got a special order, one that only went to my thoracic spine, and I would carry my stuff that way. And the flight back from Spain was the worst thing ever.

And I didn't have business class. I was in economy. That was sort of like the end when I came home. That was October 2016. And then I want to say, in February of 2017 is really when my life changed. And I was part of a group called pelvic floor sexual medicine. We haven't had any of those meetings since the pandemic, but back then, it was a mini of the physical therapist, pelvic therapist in southern California. We'd meet with sexual medicine, Dr.

San Diego sexual medicine, and we'd have different topics, and we'd have speakers at topics, and it was just really fun, really way to get together, network and maybe learn something new. And a flyer went out, like a paper flyer that said neurogenic pelvic pain. And I was like, oh, this is what I have. This is the first thing. This is me. This is me. I have to get down there. Oh, but I can't drive two and a half hours from LA.

What am I going to do? So my friend May, who also was a pelvic PT at Cedars, she's like, I'll drive you. And I was like, I was the passenger, and I was just night, and I got there, and then I was like, I can't sit down. And I'm in the back and I'm fidgeting. What shoes do I wear? I have to look professional.

Yeah. This was at Dr. Goldstein's office or whatever. Yes. So we're speaking of Erwin Goldstein. He's the godfather of sexual medicine, as we always call him in ishwish. He's actually one of the founding or the founding member of Ishwish, I think the international study for the study of woman's sexual health put.

So they had a room at Elvarado hospital, and Dr. Goldstein spoke, and they brought up the spine. So even though I hadn't really ever told anyone my story and I hadn't told any doctors about my. Mean, I was so lucky because he was the first person who was like, oh, yeah, I know that. I know exactly what you're talking mean. Anyone would know. It would be him. I am so, like, I feel like it was meant to be.

Like, I'm here in this state. I'm not from California. I live here. I got the flyer. I could have not seen the flyer. It was a paper flyer. I saw. It wasn't even in an email back then.

This was 2017. I get there. I think at that point, they'd only had a couple people who had actually had surgery, and it was him and chol Kim, and they talked about it, and I was like, I know these nerve pathways. Like, I did all this know, and I'm learning it, and I'm like, this is me. This story is me. They had someone in their office who also had PGAD, who maybe found him for this reason, but she also had the surgery. And I just connected. I went up to him at the end of the day, and I tapped him on the shoulder.

And he tells it to you. I tapped him on the shoulder. He turned around, and I was like, I have this. I have PgAD, and I think it's coming from my back, and I'm going to call you tomorrow. And I did. I called him the next day. He wouldn't let me come, but I didn't even think of it. I do feel like I was constantly in a sympathetic state for at least.

Two survival before this.

I didn't even think of that because I was just, like, trying to survive every day. I was trying to get through the day every day. Two little kids, responsibilities, a job, which I used to work four to five days a week, and I was down to one day a week at that point. I was working on Fridays, and then Saturday, Sunday, Monday, Tuesday, Wednesday, I would be recovering. What kind of life is that? I had no joy. I was just recovering to work one day. That is not living here. He was.

I tap him on the shoulder. I call him the next day. We do our little ten minute call. He schedules me. I go down there, have the neurogenital test. We call them. They sent me. They're like, here.

I had the order for the MRI, when you have to have the x ray for insurance in order to get the MRI. So I went to this physiatrist doctor, spine doctor, that I knew that I had taken my kids to. I've referred patients to. So again, it was like, really vulnerable state. And I was really happy. I got the PA, who's a woman, and she was the one that was like, isn't this from birth? And I was like, no, but I was really embarrassed. And then I was like, I'm not. I don't care.

I was like, it hurts in my butthole. It hurts here, it hurts here, it hurts all. And they're like, yeah, this doesn't make any sense. And they tell me it doesn't make any sense. And she's like, I thought your disc problems would be more like s one, s two.

It's happening. Believe your patients.

Yours is at l four. That's not the right dermatome. That doesn't make sense. And I'm like, well, it's happening, and I'm sorry. And it's happening. So I was like, I just need the MRI. So I got the MRI. They read the MRI, and I did have a pretty significant.

It just depends who you talk to, you know? Fine. It's like someone. You can have hundreds of patients who have terrible looking mris but have no symptoms, right? Then you have ones that just have, like, tiny little tears that are really symptomatic. And so I actually had a pretty good, like, I have a lot of wear and tear, arthritis type symptoms in my back. Like, I have the arthropathy at my joints. I have all that, but l 45, definitely a pretty big dys protrusion, like, fecal sac.

Was there an annular tear? I can't remember.

It actually said nothing looked affected on my nerve root, but it was. And definitely, I did have an annular tear. I did have an annual tear. It didn't say the disc was impinging on the nerve root. So I did have an annular tear. And that fluid, as you know, can just leak onto the caudalquina, and you can get all kinds of symptoms. I also had bladder symptoms that was like something else. I had urgency, frequency, pain that didn't start till after my second c section.

So I was like, is it my c section scar? My pelvic floor did sort of change, but I never really had roll, like, pelvic floor dysfunction. I had areas in my vagina, like, on my pelvic floor, that maybe were more like connective tissue restrictions, but, like, tense, tight pelvic floor. I could contract. I could relax, I could lengthen.

So, just for the listeners, when we think about our vertebrae and our spine, we have your cervical spine, which are your backbone, basically, from your neck down. Then you have your thoracic spine, which is that middle portion. Then you have your lumbar, which is your lower back. And then you have your sacrum. So in between your vertebrae, which is your backbone, you have a cushion. And that's what the disc is, right? When people say they slipped a disc or they herniated a disc, that means that some point with some movement or some activity, something happened that propelled the disc to move in one direction. And those nerves that they traverse through that canal into the foraymen and all that stuff. And so you can get that.

And then I think within each disc, you have an annulus and a nucleus. And so if you have a tear within that, their cerebral spinal fluid can seep all the way down into the lower spine, as well as, like, you said the cadar aquina. So just for listeners that maybe don't have too much background in the spine, which can be a lot of people, because I don't think.

Yeah, and I think there's more people once the spine was really on my radar for this. Potential symptoms of pudding, neuralgia and just like, really any pain, like bladder pain, urethral stuff, obviously there could be hormonal. It could be, like you said, the end. Like, I've had patients who have, like, four or five different potential contributors. You just have to kind of chip away and treat each one and see.

Like Rachel Rubin says, we're sex protectives and ishwish. Right. Because you actually have to take each region.

Yeah. You have to test each region musculoskeletal wise, there's so many different contributors to the pelvic floor. And I know region two is pelvic floor, but I find a lot of restriction in all my patients with PGAD in their abdominal wall. And your clitoris attaches to your abdominal wall. It blends into your abdominal wall. And the guarding that happens. So a lot of the. Just even the fascia within the abdominal pelvic cavity that we can treat as physical therapists that can relieve a lot of my patient's symptoms.

And I like to have that area.

That'S amazing, really clear.

And it doesn't always have to be pelvic floor. There can be other muscle cell contributors as well. But anyway, going back to what was.

The actual pathology that they found on your MRI?

Yeah, so I looked over my MRI recently. It's been a while. And I was like, oh, I didn't realize that's such a big disc herniation. I did have a herniation, but it was the annular tear that was causing that disc fluid to come out and just leak onto cadaquina. First they set me up with an injection. Once they saw the pathology on the MRI, I had an injection targeted. It was a diagnostic injection. I had steroid in it as well, and that was at al.

So they were targeting that space for the nerve root to see if indeed that was causing my symptoms. And, oh, my goodness, it took a couple of days for that to kick in for me because I had more of a steroid base block. I don't think that's what actually Dr. Kim ordered, but that's what they gave.

I'll tell you a story in a minute. But my husband's interventional pain, and they always put a little steroid.

Yes, a little steroid in there. And I was very appreciative. That is what seals the deal for me. You're supposed to go home when it kicks in, and you're supposed to do the things that cause you your symptoms, which can be really traumatic for my patients. They're like, I don't want to because they have catastrophes, and they're like, these are the things I never do anymore. I don't do these things. And it's like, in order to find out if you are a candidate for this surgery, and that is where we need to treat, you have to do these things right, which can be definitely mentally challenging to put yourself in those positions again. And so we had sex in the way that I haven't had in, like, ten years.

And I was like, we're going to do that position. I'm a little bit more research oriented in that way where I'm like, okay, now we have to test it.

It's time. Let's go. Yeah, exactly. Very romantic.

Very romantic.

I know.

And that's sort of what had happened to our sex life, to be honest. The intimacy was gone because it was like, I need to do this before I go to work so I can get 20 minutes of relief. Thank you. It was a tough time.

Was it only intercourse that relieved it, or could you have relief with masturbation? Or was it both? Just intercourse?

No. So that's what I was talking about. Like, my masturbation changed. I could never use a vibrator.

Well, because you never fly. Okay.

Vibrator was always too painful. I always just use my hand, but now I can use vibrators. I love vibrator. I love all the sensations. I couldn't use that back then because it was way too much for my nervous system. And I know some people fine with vibrators. I was not. There's no way that was coming near me.

But I did, actually, one of the things that relieved my symptoms. And I'm just letting you know in case this helps other people. But if I had any rectal, like, rectal work always helped me. But also if I put in, like, a rectal dilator, butt plug, whatever you want to call it, we're going to get into it. But when I used that, that was one of my ways where I would get relief. If I put one in my butt, I think it would slacken my vagina and actually slacken the nerves. And I could get just like, that makes sense. Like, 75% relief.

And I was like, great. But obviously you can't live like that. That was like, 20 minutes of my day, but I would do little things to kind of get me through. But that was a big one. Yeah.

It was basically, we think, the l four, l five annular tear. Not even anything below. Nothing in the sacrum. No Tarlov cyst, anything like that. Yeah. So it was actually.

I had no Tarlov cyst.

Do you remember the injury that caused it from.

I was 19, I was playing soccer. I actually was having sex, and it was a sex injury, but I was.

Playing soccer at the same time.

I was doing something like a kamasutra, like back bend position.

Oh, nice.

Sorry for the viewers. Sorry, husband. This was before him. I was doing something, and I remember being like, wow, I strained my back. And I remember my teammates were like, hi, you have a sex injury. I couldn't run. I couldn't run in practice. I had to get therapy on my back.

But I already had back pain before that. I think that just exacerbated points. That tipped me over the edge, and I had a real injury. I didn't have leg pain then. I did have weakness in my leg later on when things had progressed and I was like, really neural? I mean, everything is neural. I had a positive straight leg raise. I had positive slump tests. All these orthopedic screening tests for spinal disc dysfunction, I had all of them.

I was like a clear disc case. By the end, there was no question that my spine was discol. It was just like, how is this causing issues in your pelvis? And that's why I couldn't tell anyone. And I would lie. I'd be like, my back pain. Oh, my back pain. And it wasn't until I went into that therapist where I needed to. Why do you need a pelvic MRI? You don't have.

Well, I do have pelvic things. Well, that's not. And that was that whole circle of things. It was the pelvic MRI that I couldn't keep it from anyone anymore.

Right.

I had to tell. And it was what I expected, but I was prepared for it because I was like, I don't care anymore. I don't care if he's going crazy.

That was one of your tips.

I need this done because I have a team now behind me that's going to figure it out. I don't care what you say. I didn't say that to them, but that was the mentality. That's how you felt. Thank you so much. I wanted that MRI. I wanted to make them want me to have it. They hold the power.

They have the power. I don't have the power.

Yes. And I think this is one of the frustrating things as we, as clinicians face, right, is that when you're dealing with issues around sex and around sexual pain and genital pain, it's never clear. Like, insurances sometimes don't clear it.

Right.

The MRI is not. Oh, that's not a straightforward reason to get an MRI. Like, this happens to my patients all the time. When I order for PGAT, I'm like, okay, the major thing is PGAT, but can I say anything else? So then I'm like, just as a side story, my husband's an interventional pain doctor, so he taught me spine once he started his practice in 2012, I started mine in 2014. He's like, let me teach you a little spine, because if you have patients that can benefit from me, then you can refer to me and vice versa. I was, like, the only gynecologist in town that would ask about the spine all the time, because we were both trying to build our practices. And it was at one point within the first two years that we were married, I was like, I have this patient with all these weird pelvic pain, but she also has a little bit of sciatic stuff. Do you think if you treated her this, it would help that he goes, well, let's try.

And so we would go through and do some of that, actually. And so that's why I always was like, oh, this spine is. And then I would see it at ipps. Eventually, some interventional pain doctor started coming, and I thought that was very interesting, that the connection between the spine and the pelvis became real. But my point really is that, okay, we have people that believe in this, right? And that they're able to do it, but insurances sometimes don't buy into it, so it's out of pocket cost for patients. And then if you do find somebody that's willing to do the injection, right, like, I can just send my patients to him, and he'll inject them. The next roadblock that we find, at least in this area, is like, what surgeon's going to do that procedure? Because you have sexual stuff, right?

Right.

This is a big inhibitor. I mean, you're lucky that you were in this San Diego sexual medicine center where they were studying. You know, I've had to send my patients to Texas and other places, know, this patient had a very big tarlov cyst. I diagnosed because she had all the Volvo stuff. She ended up in specialist in.

I mean, I always screen the spine anyway, and I think most pts should be treating the spine because it affects the pelvis, but it's definitely changed. Like, I'll have someone come in who I had a male that comes to mind who had been having pidental symptoms for years and some other sexual function issues, and he was getting cortisone injections all the time in his back, but he was doing all the things that would make a back injury worse. And so I actually just said, we're going to treat your back. So I'll have someone come in, and the way I change, maybe how I'm going to do my treatment, you go, like, proximal to distal sometimes. And so I'll say, well, I'm going to treat you like a back patient today. And his symptoms went down. We treat people with disc injuries all the time.

We don't make the connection really an.

Appropriate place for us. And, I mean, I think the question comes to, by the time someone is suffering so bad and they're going to get, when they figure out it's their back, how much can pt help at that point? And that's sort of like, what we don't know. I have one person who at one point, she had lichens, she had vestibulodynia, GSM, all the different Contributors, as well as a spinal issue. And she did a positive neurogenital testing. She didn't want to do a surgery. She actually did okay just with PT, but that's what she wanted. We got it in time. We got it in time.

There's nothing wrong with having a surgery. It's more invasive, but it's done so well. I'd been doing PT for years. I was not going to get better with PT. There has to be that point where it's like, this isn't enough or this isn't working. And I think most of the people that do get the surgery, they're at that point, or they haven't even had their back treated because someone's been chasing their pelvic symptoms and they haven't even.

Had their back treated or assessed.

Yeah.

Tell us now. So you had the surgery and then how did it go after? So, okay, the block worked, right?

But the block blew my mind because I remember walking around and being like, my leg. I've had just constant symptoms for so long, and I felt like my leg was floating. There was nothing. Talk about identity, because you sort of live with something like, it's part of you, even though you don't want it to be part of you. It is part of you. It's sort of part of your story, and then it isn't anymore. And it's really strange. I'm like, I'm so glad it's gone.

And there's that little piece that's like, it's wild. It's wild when you don't have it.

Because you don't remember what it's like without it.

Right.

That's what my patients always say. And you wonder, that's probably how the brain gets activated in some patients that get that phantom leg syndrome and all these centralized pain syndrome.

It's fascinating, right? And so two days later, gone. It did not last more than two days. And, I mean, I think it just leaks out. I think I have that hair. It just leaks out. And I was like, sign me up. When can I get in? So I had my surgery May 17 of 2017, and it's a small. The one that Dr.

Kim does told Kim it's minimally invasive, and it's through an endoscope. And that's also why they target what side? Because he's going to go in through the lateral frame, and instead of having that dysectomy scar in your back where they actually have to cut through the muscle, he can bypass the muscle and just go through your vertebra. They clean that out and uses a laser to repair the dent. And so I was particularly, I'd say from the way I would describe it, as neural. I had neural symptoms for very long, so soon after the surgery, right away after, I was like, oh, boy. I had surgery where some people wake up and they're like, I feel great. It's almost like having the shoulder surgeries that are done so well now they have barely no restriction. I really had to restrict myself just because my pathway was very neural.

But one of the things I always tell people when I do a consult them with them for surgery. And so this gave me sort of peace of mind. Like, I knew it worked. I knew it worked right away because thing was different. Okay. So the many symptoms I had, there were less of them. It was reduced. I just had what felt like, I can only imagine, like a gunshot to the back, because everything was centralizing.

Okay, so physical therapy and orthoped, we talk about peripheralization and centralization. So if your disc. Your symptoms are getting worse, the pain is going to start to go to your extremities, your symptoms are going to go down.

The nerves talk to each other.

Right.

So they're talking to each other. Organs talk to each other.

Yeah. You can think of it as, like, the same thing as having pain down your leg. I happen to have both. Right. But if your neural symptoms are getting worse, coming down to the extremities or going into your genitals, you need to back off. When it's worse in your spine, that's a good sign. Your back pain is worse. Great.

Less in your genitals, it's more in your back. That's a good sign. So I was really careful with, and movement is good. But I knew my body at that point, like, what makes me better, what makes me worse? I knew how to move, I knew how to transfer, I knew how to use my breath so that I wasn't like bearing down on your disc, like coughing, sneezing, all the things that would make you feel more discal and just irritate your nerves more. And so I was really just getting out of bed, just all the things I walked every day, but I knew how to pace myself. And that, again, is something like when I work with their patients, even from out of state, I can just do a consult. I can just give some education and really try to set them up with a good physical therapist in their area that can orso and pelvic, because I have an issue with people. Oh, well, it's my back.

I'm just going to go to back PT. Well, you're not going to tell them you have PGA. You're not going to tell them. How do they know you're getting better? You're making your functional goals as a physical therapist. This person has back pain. You're not going to say, oh, they're going to be able to have sex again. They're going to be able to have an orgasm again. They're going to not have pain into their genitals.

You have to be able to talk to your physical therapist to make appropriate goals. And also having PGAT is like, it's traumatic, right? Just like having pain is traumatic. But there's something about having the arousal component. It depends on the person, but it can feel like you're being raped all the time, like constantly violated, constantly. Just. You didn't ask for this. This is not a sensation.

You're not thinking about sex. Right.

There's nothing pleasurable about it. You feel like you're being punished. You feel like it's grueling, you're in agony. How are you going to go to a sports spine PT and tell them these things? I don't even know if they're familiar with how the nerves into the genitals. I wasn't until I studied it, until I went into pelvic health. So we need pelvic health therapists to be really good at ortho, really good at spine rehab, and be able to do both. And I try to be that liaison with education I always offer. Like, if I do a consult with someone, I help them find a PT, I give them a few options.

I try to find them in their area. I go through my network and then we usually have conversations and I don't charge them. I charge for the consult because there's a little bit of extra work and time. But I will be open to work with that PT at any point and just be part of that journey with them so that they can. I really just want the best outcome because the surgery works if you're a good candidate and they really screen you to if you're a good candidate. I feel like the surgery works. It's just sometimes the way the brain works with pain, and I'm not saying people mess up their surgery or anything, but it's just we need the brain to know it's safe and it's okay. And if you're constantly aggravating things and making things more inflamed, it's going to feel like it didn't work.

If you're going back on activities too soon, it's not like the tissue. These are people that have had that whole nerve pathway has been inflamed, sometimes for a long time. A lot of compensation takes place. Motor patterns change. I didn't rotate my hip in, I didn't internally rotate my hip because it would just send it. And that may not make sense to someone. Why does hip internal rotation affect your genitals? I had a spine doctor say that to me and I'm like, well.

Your.

Sciatic nerve goes right through your hip rotators. Your prudential nerve passes right through there. And yeah, when I turn my hip, it gets tugged.

It makes it worse all the way.

Down and it gets tugged. So even just this is something that you can't give someone necessarily a pariformis stretch with this. It's going to flare them, right? Yeah. That's sort of where I think having this and being who I am, I want to help people. This is one of my purposes in life. I have this thing that is absolutely terrible and I wouldn't wish it on anybody. And I can do something with this and I'd like to do more. I need to get myself out there a little bit more because, of course, I have my own ways of how I think people with PCAD should be treated.

And gone about. But you need someone who's trauma informed to work with you all the way through. Surgery can be like the big missing piece of the puzzle, but it's kind.

Of like when we do vestibulectomies for congenital neuroproliferative or whatever you think, okay, I've removed the inciting factor, but now you have vaginismus, and now you have this because your response is that this is going to hurt. And so you have to retrain everything. And so it's that retraining that's so important, too, because otherwise you think this is a failed surgery, which it's not, but you have to do the rehab and the prehab are just as important.

It's not failed. The prehab is really important. That is one thing I'd like to figure out a little bit more. I would love if we could get someone who's going to have surgery set up with a pt even a month before, not under the pretense of like, oh, they're not going to have surgery. No, let's do some prehab and let's figure out your body before.

Absolutely.

After. It's also really fun to see the before and after.

It's so cool.

For instance, for me, when I could turn my hip again, it changed how I walked. I had so many compensatory strategies to do things and, like, aches and pains in all these places. And even through my leg, I did have true radiculopathy. And for years, I couldn't plan or flex. Like, if this were my ankle, I couldn't do this or this. I didn't have drop foot. I could plan or flex, but I was making up for it with other muscles in my body. And I always have spasms and cramps.

And all of a sudden, two weeks out of surgery, I do this motion. It freed my nerve. So I had orthotics for like, 20 years. I didn't need them anymore because my foot actually started to pronate, like, all these little things that if your physical therapist can assess you before, and I'm not talking even, like, internal pelvic floor, I'm talking muscular. It doesn't have to be internal. Internal work does have its place, and it is important, depending what's going on. But I think, just so listeners know, if you have PCAD, and I think a lot of women are afraid to go to physical therapy because they assume, like, oh, I don't want to have an internal exam, or what if I have orgasm or what if I have a worse episode or what if I flare, ideally, there's always informed consent, but I want them to know. I mean, there's always informed consent, but none of these things are have tos, right? So we have a menu of things we can do the first day, and it doesn't have to be a pelvic exam.

And even if someone's like, oh, yeah, I consent to that, just do it. Their body language is telling you otherwise. That is not appropriate. We don't do pelvic exam. I very rarely do a pelvic floor exam the first day. Or like, I'm going to be like, I'm going to look at your clitoris. They don't want you anywhere near their clitoris. They're not comfortable with that.

And that's okay because this is the thing. You can flare from many different contributors, right? You can think about flaring and flare. You can be anxious about going to PT and flare. No one can touch you and you can flare. So you want to establish that therapeutic relationship of trust. And we're going to go slow. We're going to check these things out. What can we do from the outside today? There are so many things we can do externally that don't involve your pelvic floor, that can have a relationship on your nervous system, on your pelvic floor.

So you can start anywhere. But your PT really should be like your ally, like your investigator, right? Like your detective. And it's a team. It's a team effort to figure things out. Like, you might have triggers that you.

Don'T make your anxiety worse or getting treated all these things. So that's why sex med is biopsychos.

Or even just like biopsychoscial, even just mechanical. Like, you're doing certain activities. Okay, so a lot of people with PGAD, their main way they manage is distraction. So think about, you're basically going out of your body. You are distracting yourself with all these things so that you can survive the day. And it's such a catch 22 because we want to bring you in your body, we want you present, but at the same time, your body is not a safe place. So it's really challenging. But they need to be aware of, like, this thing makes me worse and they may not know it makes them worse.

So if we can pick up on these mechanical assessments, screen for spine, screen for neural tension. Like you said before, it's not cookie cutter medicine. It's not cookie cutter physical therapy. And figuring that out gives you tools to reduce symptoms. So even if you're not going to be fixed by physical therapy, you may not be. Usually, it's a lot of things at once that. There's a lot of things that need to be treated. But same with predinal neuralgia.

I mean, you could have PGAB because you also have predominant neuralgia. You need to figure that out for yourself. And it's very individual, which is why when I see people being like, do this stretch for PGAB, I'm like, it's not cookie cut. That's not okay. It's not okay. I want people suffering with this to know that your pt is spoke. And if you don't get a good vibe from your pt, that's not your.

Pt, find another one.

You got to have that. And not every person is for every person. And you should never.

Same with your sex med doctor, your clinician, your psychologist, your sex therapist, hairdresser, whoever's helping anyone.

Yeah, anyone. Recreate. Getting those motor patterns back post op is really important. And I think, like you said, the prehab. I love that you said prehab. Because we get prehab for ACL surgery. We get prehab. You get prehab for back surgery.

Most people, they go in for back surgery. They've failed. I hate the word fail. But they did their course of physical therapy. It wasn't enough. They needed surgery. So it's like, surgery is usually the last resort. And I think sometimes these patients with PGAD, they've just been through hell and back.

It's like, do it. Get it done. Especially if the injection works. But it can be challenging working with them in post op because they haven't had that figuring out phase really hasn't been established for them. Right. Yeah.

Well, April is a definite, amazing physical therapist, and she is a fierce advocate for PGAD as she has struggled for so many years with it and is now PGAD free, which is the beautiful part of the story, is that she is free of these symptoms. As many of you, if you have suffered from this, you can also get there. The right team has to be involved, and you have to advocate for yourself. So, hopefully, this episode gave you a little bit of education so that you can advocate.

I think that there's so much information more now that we have out there, comparatively. Yeah. I don't know what I would have done differently, because I don't think I could have handled the gaslighting, but I feel bad even saying that, because there are women that are much older than me that had suffered for longer, and it's just really sad. But there is stuff now. There's studies.

Tons. I mean, not tons, but much more than when you suffered in the past.

And you can arm yourself with those things. And if they don't want to listen to you, it's not on you. It's not.

So. And April is a big advocate. She has her own practice again, at wholebodypt. She has her own practice in Los Angeles. I'm going to put in the description how you can get in touch with her if you need to see her for consultation or other things. Do you want to repeat your website for us?

You can reach me through my website.

Okay.

Oh, it's wholebodyla.com. One word? Yeah, wholebodyla.com. And yeah, you can just send me a message through there and I'll get back to you in a day or two at the most. I mean, usually I get back right away and we can do I offer a ten minute free just phone call anyway, even before I take someone on as a patient. So I'm happy to do a call with you, too. It's just I have to kind of keep it at the ten minute mark if we want to do something longer. I do charge a consult fee.

And also ww dot isswsh.org is the ishwish organization website. The patient facing website for ishwish is pro sala prosayla and more information on PGAT. I think the main organization that deals with it is ishwish. Well, thank you again, April. I mean, your story is so compelling. The work that you do is so compelling. I do believe that. I do have a feeling that God gives us things that we can handle so that we can further benefit others.

And I do feel like your suffering was not for nothing because you've made such a difference in so many.

I feel the same way.

And hopefully people listening will reach out to you or get some bits of information they can take back to their clinician, whoever's taking care of them. But I appreciate everything that you do.

Thank you so much, Samina. Likewise. And really, it's an honor. Thank you for reaching out, and I'm so happy I got to share.

Yeah, I'm going to have you on again, so we can just talk about some general pt stuff.

Fantastic.

And everything, how you treat, maybe. But I feel like we wanted to touch on the story of PGAD today, but once we get going with the podcast, I'll have you on.

Thank you. Thank you so much. Okay.

All right. Yeah, of course. All right, hon. Thanks again. I appreciate it. If you have a second, please subscribe to this podcast.

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