Confronting Clitoral Pain and Navigating Spinal Health’s Impact on Sexual Function

00:01 - Speaker 1

Hey y'all, it's Dr Samina Rahman GynoGurl. I'm a board certified gyno-cologist, a clinical assistant professor of OBGYN at Northwestern Finebrook 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 youth 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 GynoGurl. Presents Sex, drugs and Hormones. Let's go.

00:50 - Speaker 2

Hi y'all, it's me, dr Samina Rahman GynoGurl. I'm so excited about today's episode. I had the opportunity to interview a very lovely patient of mine on her journey with clitoral pain, which we call clitoral denia, and we're going to call this patient crystal, and I wanted to highlight in this episode the association between the spine and sexual function, and I think that oftentimes gets missed either from clinicians, from patients, from surgeons, etc. And it's not emphasized enough because it can really impair someone's quality of life. And so today we're going to speak specifically about the cauda aquaena and I'll define that in my podcast cauda aquaena syndrome and clitoral pain and I also review our regional-based approach to different genital pelvic destesias, which is just an abnormal sensation of pain, basically. And so I hope you guys enjoyed this episode. I really enjoyed it. I have so many wonderful patients that are willing to come up and advocate for other patients, and so I really, really appreciate that. And so, again, my goal here is to educate so you can advocate, and let's listen to the episode today.

02:08

Hi y'all, welcome back to another episode. I am so excited today I have the opportunity. I have so many amazing patients who have had so many amazing journeys, and one of the things on this podcast that I want to do a little bit differently was to bring on actual people that have gone through a journey of either in their menopause journey or sexual dysfunction journey and kind of you know, talk about how, especially the ones that are big advocates In this day and age, self-advocacy has been really huge in promoting and trying to get the word out about all of these issues, whether it's clitoris, whether it is sexual pain, whether it is menopause management, and a lot of the voices that you're hearing nowadays are actually patients that have gone through it, and it's really important to understand these stories and they may or may not relate to you. In one of my last episodes, I did talk about precision medicine and how you know I don't practice cookie cutter medicine, that everything is individualized, and so I really wanted to emphasize that.

03:12

You know, some of these journeys are really important and can give you an example of how to sort of advocate for yourself, because that is a big thing that I feel is prominent and paramount in helping patients overcome very complex problems. And so today I have a very lovely patient and she's been with me for a couple years now and we've been working together. We're going to discuss her journey with clitoral pain, but specifically today I wanted to build awareness on how the spine and other parts of the body are involved with various types of sexual dysfunction. So I'm going to let Crystal introduce herself and then I'm going to just delve into a brief overview of how that happens, and then we're going to hear her journey. Thank you for joining me, crystal.

04:00 - Speaker 3

Hi Dr Oremon. Thanks for having me. As Dr Oremon said, my name is Crystal. I'm a 41-year-old female patient of Dr Oremon and I live in the Chicago area.

04:13 - Speaker 2

Amazing, thank you. I, you know, I ask all my, I ask myself and I ask my patients many on this podcast so far that you know, are you brave or are you shameless? But Crystal is totally brave and for coming on today she really believes that building awareness for these issues. You know, if it helps someone else, then you know I'm all for it. So I wanted to briefly describe in the last few years how we've looked at different types of dysthesia. A dysthesia is an abnormal pain sensation, and so when we think about remember, when we think about pain and your nervous system, remember we have a central nervous system that includes your brain and your spinal cord, and it's really important to remember that our nervous system is very complex, and so when patients develop pain disorders, it can come from a variety of sources, and so over the last few years, I'm very prominent in the International Society for the Study of Women's Sexual Health, which is Ishwish, and in the last few years, ishwish, as an organization you know, has come together with a regional and some other you know very prominent leaders, come together with sort of a rough algorithm and how to address patients with complex pain issues in the pelvis that can cause sexual dysfunction and it is a regional approach to this. So you know, I'm going to do an episode on persistent genital auralisal disorder, which is PGAAD. This is another form of genital pelvic dysthesia, and so this is important to know because all of these different sort of neuropathic pain issues can be addressed in multiple ways and it's a multimodal approach with multiple specialties involved, and that's very key to understanding. Additionally, it's important to know that again I said this in my other podcasts as well that we approach things from a biopsychosocial perspective, because we know that sexual dysfunction needs to be addressed not only from the biological perspective of what's happening, from a biological point of view, but we know that our brain is very much involved in all of this and social situations and cultural situations also contribute to sexual dysfunction. So, again, biopsychosocial approach as well as multidisciplinary. So these are the things that I want you guys to remember.

06:33

So, again, just going back to the regional approach to sexual dysfunction or dysthesias, we talk about really treating the end organ, which is could be, you know, your clitoris, and it could be your vestibule and it could be any part of the vulva. So you look for issues around that. The next region is really the pelvic floor, the muscles that contribute to the pelvic floor I'm going to have my therapist, my pelvic floor therapist, on an episode coming up as well. So treating those muscles when people are in pain they tend to clench. When they clench, their muscles become super hypertonic, which means that they become weaker and many times cause additional issues with sexual dysfunction and sexual pain. So pelvic floor is very important.

07:14

The next region is the cauda aquaena. So let's take a step back and just talk about what our central nervous system is. Remember it's the brain and the spinal cord. Your spinal cord travels in the back along with your vertebrae, which is basically your backbone, and you have a cervical portion, a thoracic portion, a lumbar portion and a sacral portion and these nerves travel within that canal and can get compressed and can get, and they end at the cauda aquaena, which I think is Latin for horse tail, because all these nerve roots then converge into what is known as the cauda aquaena, that eventually, you know, the sacrum and the cauda aquaena kind of feed into the pelvis. Those are the nerve roots for the pelvis, and so this is important to know anatomically because when we think about our pelvis and sexual function we think about especially those sacral nerve roots and the cauda aquaena really contributing to sexual dysfunction or pain down there.

08:12

And so that is region three and region four, because the fourth region is the lumbar sacral spine.

08:17

And remember, one of the biggest reasons people get seen I think over 90% of patients at some point in their life will have lower back pain and that usually comes from that lumbar area.

08:26

I'm married to an interventional pain doctor who is a spine doctor, and so a lot of people joke that I'm the one gynecologist that can diagnose what we call lumbar and sacral radiculopathy is very readily, because he taught me a lot when I opened my practice, and so I think that it's really important to understand that. And then the fifth region, when we talk about pain and these disdeges, the genital pelvic disdeges or the persistent genital arousal disorder is the brain. So the brain is in again in the central nervous system. What that and the spine work together. You know your nervous system sends these signals from the brain to the spine, to your peripheral nerves. Those peripheral nerves then sends signals to the organs and sometimes the nerve endings and those end organs get affected. So it's a regional approach to pain.

09:18

I reviewed what the spinal cord, the caudal Aquina and the central nervous system are. And now I'm going to give it back to Crystal and she's going to tell us how she developed back pain, how this back pain developed into a surgical emergency and I will interject what Conaquina syndrome is when she talks about it. And then she's going to tell us how that left her with an interesting form of genital pelvic dysthesia known as clitoral dinia or clitoral pain. Okay, crystal, it's back to you now.

09:49 - Speaker 3

Sure. So in: 2011

11:04 - Speaker 2

So a disc bulge or a herniated disc, you have discs or cushions that are in between each vertebrae. So she's talking about the lumbar vertebrae, which is L5, and then the next one that is right under it is the S1 or the sacral vertebrae. So in between those are cushions that help, you know, with shock and everything when you're—when we have, you know, any kind of activity, and it cushions the vertebrae essentially. And sometimes that cushion or that disc can move and it can move from back to back and forth or side to side and it can cause nerves that are kind of coming out of the vertebrae to get compressed and those nerves can then cause what sometimes you hear about sciatic pain, radiating pain down your leg, numbness, tingling, all these abnormal sensations or dysthesias. So Crystal developed something that was a pretty significant herniation, because we all get a little bit of movement sometimes. You know, or maybe a slight you know a herniated disc or a slipped disc, but hers was significant enough that the orthopedic surgeon thought she needed surgery.

12:11 - Speaker 3

And so, being 29, I wasn't ready to do surgery. So I tried physical therapy for about six months and still like that hip pain which was caused by the herniated disc bulging on my sciatic nerve, it just I couldn't shake it. And finally I made an appointment with him and I said let's do it, so let's do the surgery. And so we scheduled the surgery for about a month out and let's see. About two weeks before my surgery I did a yoga class and I remember thinking in the yoga class oh, I'm really going to stretch, this is really good for my back, I'm going to stretch really really well. And then I went home, I went to bed, I woke up in the morning and I had lost sensation in my genitals and essentially all down the left side of my leg and into my foot, so I didn't have any sensation for going to the bathroom. It was scary. Yeah, it was super scary. I had no, I had no idea this could be something that could happen.

13:24 - Speaker 2

Well, it was not warned to you.

13:26 - Speaker 3

No.

13:26 - Speaker 2

Mm-mm. Oh, wow, no.

13:28 - Speaker 3

Yeah, no, I know in most orthopedists they'll, yeah, you'll, they'll tell you that there is a risk for that, did not, was not warned, and then actually, so I called my doctor's office, my surgeon's office, because I knew this wasn't right, mm-hmm, and I couldn't get ahold of them. It was a Friday and so how scary.

13:52 - Speaker 2

So how long was that going on for?

13:54 - Speaker 3

I didn't get a call back on Friday, so I went through the whole weekend like that actually.

14:00 - Speaker 2

And so more than 48 hours.

14:01 - Speaker 3

It was more than 48 hours.

14:03 - Speaker 2

And.

14:03 - Speaker 3

I started to develop some really severe pain in my lower back as well, so I was taking a bunch of a leave. It would help for a little bit, but then I'd go back to like shooting pain in my lower back plus the sensation of not having a sensation in my leg and in my genitals, and I felt like I was going so scary it's going to the bathroom all the time because I was so worried about, you know, peeing my pants to be you know.

14:31 - Speaker 2

Right, right.

14:33 - Speaker 3

And so I finally got a call on Monday morning and his I think she was his PA, she was she said Crystal, go get in a cab, get to Northwestern Memorial and we'll admit you and we'll do the surgery. And so this was about a little less than two weeks when I was supposed to have the surgery. So I remember being so scared I just, you know, packed up my stuff and got in a cab.

14:59

I told my roommate at the time, like here I go, I'm going to go, and, yeah, my parents live in Michigan and they drove, you know, I let them know what was happening and they drove and they were able to do the surgery on Tuesday. So it was kind of a it was Friday to Tuesday when they yeah.

15:19 - Speaker 2

I'll pause for a second and explain why it was so important that Crystal knew that these symptoms happened, that she needed to go to the emergency room, which she was not counseled on, and that's very unfortunate, because Cata Aquina syndrome is considered a surgical emergency. I'm not an orthopedist, I'm not a you know, a spine surgeon, but you know that's something we're taught in the medical school setting as well, and remember I told you, the Cata Aquina are those nerve endings that converge at the end of your spinal cord, and so there are a number of things that can either narrow the canal or put pressure on the canal. It can be a large herniated disc, it can be, you know, a stenosis or narrowing of the canal, it can be a tumor, it can be an infection, an inflammation, a fall, an arterial venous malformation. Any of that, and potentially more, could cause what's called Cata Aquina syndrome, and if you have a big enough herniation or big enough pressure, it can put enough pressure on those nerve roots that you know you get some nerve damage.

16:19

Remember the nerves that are feeding into the pelvis, control your bladder sensation, control your sphincters down there, control the anesthesia and the feeling of of around your buttocks, around your vulva, around your legs, and so some of the prime symptoms is it can lead to urinary retention or or complete loss of urine, where you can't control your urine, you can't control your bowel function, so complete loss of that.

16:46

Well, another potential is saddle anesthesia, which is basically a numbness of the of the area where you're sitting, and then weakness or even paralysis of the lower extremities, which is kind of what you know Crystal was facing with and can eventually lead to, you know, sexual dysfunction Because again, those sacral nerves and those nerve roots kind of feed into the, the pelvis, which you know end up feeding into your vulva, your clitoris, your pelvic floor, the whole thing. And so she lost sensation in her legs, she lost sensation where she was sitting, she was having urinary urgency and you know, potentially could have been incontinent, and so at least what is traditionally taught again, I'm not a spine surgeon, so and this, none of this, is really meant to be medical advice for anyone listening, but just as a as an awareness builder that you know you should go emergently to the emergency room and you're supposed to have that surgery within 48 hours before causing like potentially permanent nerve damage, which unfortunately did not happen for Crystal.

17:47 - Speaker 3

Yeah, so they did the surgery and my orthopedist said, you know, apparently the bulge had gotten more severe so they ended up removing the disc completely to take that pressure off my sciatic nerve. So but unfortunately he told me to maybe wait about six months to see if I would get feeling you know back and I just I never did. Yeah.

18:16 - Speaker 2

Meaning? Where did you not get feeling back?

18:18 - Speaker 3

anywhere, like he thought that maybe the sensation in my foot it would start on my foot, where I'd start to feel more, and it would travel up my leg and then make it to my pelvic region. But I just what I felt that morning is Essentially what I how I still feel today.

18:38 - Speaker 2

So yeah, and so that is, you know, very interesting, because obviously, without sensation in your vulva, if you have any kind of vulva or abnormalities, you're not gonna feel it Mm-hmm. If, without that sensation in your clitoris, you may not be able to have a clitoral Orgasm, right, and so you're losing sensation, you're losing sexual function, you may not feel as much in when you're getting having penetrative intercourse, and you can tell us as much as you want in terms of that. But obviously you know this was Building and building concern for you. So you can tell us, crystal, what you, what you did next.

19:17 - Speaker 3

h gosh, it was probably about: 2016

20:01 - Speaker 2

What crystal tell us about your urinary function and your bowel function? Do you think that?

20:05 - Speaker 3

Yeah, urinary function and bowel function. I have to really think to To get my urinary function to go the other. Sometimes I have to stimulate, like my lower back, you know, to get yeah, to get that to come out, you know, in the bathroom.

20:27

So, and I'll be honest, when I first had my surgery I like had to wear a diaper because I wasn't attuned to the you know, my signals. Now, actually, jumping ahead a little bit, I did have some pelvic floor therapy through Dr Ramon and that has been able. That's helped somewhat some of my control and all that. But every once in a while if I have a lot of coffee I might, you know, not go the bathroom and you know have an accident.

20:57

So it's still even to this day you know I have to be really thoughtful about About that and make sure I'm going to the bathroom right.

21:08

there. So, yeah, so in about: 2016

21:52 - Speaker 2

So meaning when you touched over the clitoris or like your clothes, if you wore some clothes that touched the clitoris.

21:58 - Speaker 3

Yeah, if I wore jeans that were really tight, that like kind of rubbed on the clitoris, it would be painful if I touched it, if I put pressure Going to bathroom, like wiping, I could feel it. But day to day it wasn't painful and I think what got me was just, you know, sex in general is not like Ultimately satisfying for me. But I don't want. I can still have fun, I just don't want to be, you know, in pain while it's happening.

22:29

Yeah, it got. I'm at a point where we just avoid that area, you know, avoid the clitoris, so, anyway. So I was having that clitoral pain and I knew something wasn't right, like that was. That was clearly not normal and probably had to do with my nerves or maybe an injury, the spinning coming on the bike saddle hard. So I started Googling, looking for a gynecologist that might have some some knowledge with lumbar and nerves, and I Happened to come across dr Rahman and that was one of her Attributes listed on her website. So I just, you know, had a leap of faith and just went and made it an appointment. Yeah, that's after a long time.

23:17 - Speaker 2

Yeah, and so Crystal and I have been on a journey for Lisa for over a year now. She has, you know, a combination of of distigio, which is, you know, abnormal clitoral sensation, but she also has hypostesia, which is really like no sensation. So it's a very complex situation because some of her nerves, you know, are not Doing anything, and then some are sort of hyper firing and and so we've been taking a regional approach. I think you also had some foot related pain at some point, is that correct?

23:48 - Speaker 3

Yeah, that's true as well. Yeah, I have at night. I tend to get like nerve kind of spasms in my left foot, which is again like that kind of acute sensation where the rest of it is numb, but then there is pain in my foot, so similar to the clitoris.

24:07 - Speaker 2

And so in our journey that and and it's a continuous journey because this is obviously we're dealing with almost permanent nerve damage from, you know, the, the caught, caught Aquinas syndrome, and we're trying to, you know, get to a point where she is able to, you know, have some enjoyable sexual activity, and we've made a lot of progress. I think you know she's gotten again. I told you I was married to an interventional pain sports medicine specialist, dr Suja Murtaza, and he's taught me a lot about the spine and he's been able to help crystal with a number of Blocks from the level of the spine. That, I think, has made her quality of life better.

24:50 - Speaker 3

I yeah, absolutely, because I would get some lower back pain as well, and he's been able to really help with that.

24:59 - Speaker 2

And then the other issues that we're dealing with is and I will do a separate podcast on the vulvar vestibule, which is the area between the interlabia menora, what we refer to as heart's line, to the hymenal remnant extending up to the erythra and at the perineum, and so this special piece of tissue is a concern for a lot of patients when they get insertional pain with sex, because their number of factors can cause it to get inflamed either chronic infections or increased nerve density in this area, or hormonal changes, and these hormonal changes or deficiencies can be related to a small subset of patients that use birth control pills, or postpartum patients who are breastfeeding, patients who have had their ovaries removed, patients in menopause, patients who have breast cancer who maybe have gotten some hormonal suppression, and so that vulvar vestibule can get very inflamed, causing pain.

25:58

And so I remember one of the first things I talked to about crystal was like wow, your vulvar vestibule is super, and I would do what we do, a Q-tip test, which is a test with the soft part of the cotton Q-tip around the vestibule to see if people have pain there. And I said, in anyone with normal sensation, if I touched your vestibule right now you'd probably jump off the table, but she never had that. Do you remember that crystal when I first was like, wow, your vestibule.

26:25 - Speaker 3

Oh yeah.

26:27 - Speaker 2

And so that was one thing that I felt like we worked on. We have worked on whether or not clitoral adhesions have been involved in that clitoral pain, and it didn't seem to be the source. Again, we're doing a regional-based approach More than likely it's the peripheral nerve, like the prudental nerve, but haven't been able to really get a balance on trying to tone down the nerve ending while giving you sensation at the same time, and that is, I think, the complicated situation. So we're trying some new, novel approaches.

26:57

Different blocks, prolotherapy and potentially even PRP will be attempted, but one of the and she, I think it's now isolated just to the left side, right crystal. It is, yeah, and we've gotten some success with certain things, but we're just not at a place where she's actually like I'm having an orgasm or I'm really enjoying sex. But we're going to get there because there's always new research coming out, always new types of therapy to try. And again, because some of this is very unique and not a lot of research is being done, we're going to use other nerve endings and peripheral nerves as an example and try to do some of these more innovative techniques. Between us and interventional pain. But she's also seeing pelvic floor therapy, and how's that working? Crystal.

27:45 - Speaker 3

Yeah, that's been really beneficial. I know initially I didn't have a lot of string in my pelvic floor region and I didn't know. You know I had no idea that I didn't so because I have no sensation. So that's been a big help just day to day for my lifestyle of having more control with my urinary function and I feel like your pelvic floor therapist, grace, is incredible and she Grace Preach.

28:20 - Speaker 2

She'll be on the show soon.

28:22 - Speaker 3

Yeah, she was really. She's like Crystal, you're going to have an orgasm. She gave me some books, you know, she's so knowledgeable and I think what I appreciate most about Dr Rahman and her staff is, you know, like they haven't given up on me. They're willing to try different therapies, and it makes me feel, oh gosh, so supported, because I think before my experience with my orthopedist, he was kind of like you know what, you're just going to have to live with this. And I guess I thought, okay, you know, when I was in my 30s and then when this pain clitoral pain happened, I'm like this is stupid Like I need to, you know, try to figure out what's going on.

29:08

There's people that can help me, and I'm just grateful we're on this journey together Absolutely.

29:14 - Speaker 2

And when? When Crystal? After Crystal has her orgasm, we will have a follow-up show and talk about how we got her there. But we are using some novel therapeutic approaches and my husband says this about her all the time, like he'll do anything to help Crystal. He always says that like but I think that you know, one of the the best things that I've seen as a patient from Crystal is, you know, she's willing to try a lot of stuff too. She understands the.

29:41

The landscape of sexual medicine is sort of an evolving field that has never had a lot of research or emphasis, just like most of women's health and specifically in all of women's health, probably the least amount that's been really vested in. And so with Ishwesh, with Dr Irwin Goldstein and some of the really prominent members, we are learning more and doing more and trying more. So I do, and I and I like the fact that she doesn't feel defeated, that she still, you know, after after so much I would say medical induced trauma, doesn't really have ill feelings toward the people that you know maybe could have helped her navigate this journey a little bit better. Right, like I feel like we're all human beings in medicine and we all, you know, learn and have evolved in terms of how you know we understand the different traumas that we put on to patients sometimes, but also you know the understanding that you know sexual health is health, that sexual health matters. And so you know, when you're not even given as an example, that you know sexual function can go away with these conditions, even though, at the end of the day, you know it may not have changed things. You know, maybe it would have changed your mindset a little bit that like, okay, I didn't even realize this was a possibility, but now I do. And so a lot of this is, you know, unfortunately, stuff that does happen, and you know different patients react differently to different surgeries and different situations.

31:09

But what I love about Crystal is that she's very positive and she's always I'm always like, well, we could try this, there's some data on this. And you know she's always like, okay, let's try it If you think so, dr Ramon. So we're going to get there and then you guys will have a follow up with her. But you know I really wanted to emphasize the understanding number one that you know the spinal cord, the back, the brain, they're all really involved in sexual function and when we're going down the route of trying to help our back, trying to help our sciatic pain, trying to help, you know, just always in the back of your mind, remember that sex for so many couples is really a crucial part of the relationship.

31:47

It makes you, it has so many added benefits and it can really cause a big amount of distress and a large distress for a lot of patients when they cannot, you know, achieve the level of activity that they've been in in the past. And so, understanding the complexities of that and understanding and having awareness of sort of you know, how our spine and our brain and our caudal quina and the pelvic floor and the end organs and the peripheral nerves, it's just like a dance that has to occur in certain ways to make everything go right and if one thing is out of whack then it can really mess up the whole system. But you know, I really credit her so much because she really does have a very nice attitude about this and very positive, optimistic, and that's how I know we're going to be able to help her as well. Crystal, do you have any other comments to make?

32:40 - Speaker 3

Yeah, I would just say you know, like Dr Ramon said, if you have injury to your back or you know, you're kind of weighing a procedure just in the back of your mind, remember that it's all connected you know.

32:54

So think about if you delay something it could have an adverse effect in an area you're not expecting, and I wish I had known a little bit more. And I would just say do your research. When I was diagnosed with caudal quina I had no idea what it was and I had to, you know, look into it. And luckily I have like a, fortunately a more mild case, even though it doesn't seem like it. But I know people are in some severe pain. So do your research and be your advocate and look for those people you know that can really help. So that's what I'd say.

33:35 - Speaker 2

Thank you so much for you know bringing this topic to light. I think that awareness is always the first step and you know your journey may be different than Crystal's, and everyone's journey is different when it comes to their medical history, and you know their genetics and you know their race has an effect on everything as well. So I just like to elucidate different cases in this podcast as well, so that we can see, you know, how things evolve for different patients and, hopefully, how things get better as well. So you know, I really appreciate you, crystal, for being on the show today and can't wait to have you back. Whenever it is when we, after that first orgasm, we will have you back. So, okay, I will be there. I will be there, amazing, and you know, until next time. You know we will delve deep into another topic and, you know, hopefully continuing to educate so that you can advocate. That's it, gyno girl out. Take care.

34:34

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34:58 - Speaker 1

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35:04 - Speaker 2

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