Do you ever wish there were more open conversations about the complexities of sexual and pelvic pain? On our latest episode we dives deep into these crucial topics with our amazing guest, Dr. Sonia Bahlani!

Join us as we explore these critical issues that affect countless women and discuss the path to better understanding and treatment.

We discuss the often misunderstood and stigmatized conditions of vaginismus and interstitial cystitis (IC), shedding light on the interplay between cultural influences, psychological factors, and the critical importance of specialized care.

Highlights:

• Personal and Professional Journeys: Learn about Dr. Bahlani's unique career path, including her transition from general gynecology to specializing in pelvic pain, and her dedication to comprehensive patient care.
• Cultural and Psychological Insights: Dr. Bahlani delves into how cultural stigmatization, especially in South Asian communities, contributes to conditions like vaginismus. These cultural influences often prevent women from seeking the treatment they need.
• Beyond Physical Pain: We both emphasize that the absence of pain is not equivalent to experiencing pleasure and discuss the comprehensive treatments required for conditions such as vaginismus and IC, extending beyond just physical pain.
• The Spectrum of Pelvic Pain: Discover the complexities of IC, also known as painful bladder syndrome. Dr. Bahlani explains how IC is a spectrum condition with varying treatment approaches for different types of lesions, including both topical steroids and oral medications.
• The Role of Diet: We dive into the nuanced role of diet in managing IC and the conflicting data surrounding its effectiveness. Learn about how only a small percentage of patients are diet sensitive.
• Patient Empowerment:  We stress the importance of patient education and self-advocacy, encouraging listeners to be proactive in seeking specialized care and understanding their bodies.
• Navigating Online Resources: The conversation touches upon the dual-edged sword of using online resources and social media for medical information. Both doctors caution against the potential stress and misinformation that can arise.
• Healthcare System Challenges: The challenges of providing adequate care within a healthcare system constrained by high patient volumes and insurance limitations are addressed, highlighting the need for better specialized training in sexual health.

Who else would you like us to interview? This podcast exists so you can be better educated and advocate for yourself. Please share, subscribe, and give us a 5-star review on Apple Podcasts!

Guest Bio:

Dr. Bahlani graduated magna cum laude with an undergraduate degree and then went on to receive her Doctor of Medicine degree from the Virginia Commonwealth School of Medicine in Richmond, VA. She completed her residency in OB/GYN at New York Presbyterian / Weill Cornell Medical Center. After her residency, Dr. Bahlani joined the Smith Institute following a fellowship in urology under the mentorship of Dr. Robert Moldwin, a leader and innovator in the field of pelvic pain.

As the 2014 recipient of the Marinoff Career Development Award from the National Vulvodynia Association, Dr. Bahlani has been able to continue her clinical and research interests in the treatment of vulvodynia and sexual pain.

She’s been invited to present her research at multiple conferences, including the International Association for the Study of Pain, the American Association of Gynecologic Laparoscopists, and the American Urologic Association. Dr. Bahlani has also been published in top national and international journals and has appeared on Dr. Oz.

Most recently, Dr. Bahlani was named a recipient of New York Super Doctors 2022, a prestigious accolade awarded to leaders in medical excellence. Dr. Bahlani’s specialized training allows her to treat patients with urologic and gynecologic pelvic pain syndromes, such as vulvodynia, pelvic floor dysfunction, interstitial cystitis, vulvar dermatoses, and female sexual dysfunction. As a clinician and through her continual pursuit of knowledge and research, Dr. Bahlani always strives to achieve her ultimate goal of enabling women to spend less time in pain and gain the tools they need to live their lives to the fullest.

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Hey y'all, it's doctor Samina Rahman, Gyno girl. I'm a board certified gynecologist, a clinical assistant professor of Ob GYN 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 gyno girl presents sex, drugs and hormones let's go.

Hey all, it's me, doctor Samina Raman Gynew. Welcome to Gynel girl presents sex, drugs and hormones super excited today. I just finished my interview with doctor Sonia Bilani. She is an amazing friend and specialist in pelvic pain. And so we talked a lot today about south asian culture and pelvic pain, sexual pain, as well as we spoke about vestibulodynia, pelvic floor dysfunction and when it's not either of the two and it's interstitial cystitis or painful bladder syndrome. Anyway, Doctor Sonia Bolani's path to becoming a pelvic pain specialist was unconventional. She completed her Ob GyN residency, saw people suffering from pelvic pain and silence for so many years, and she veered off the traditional course in a fellowship in the urology department, working with the pioneers in pelvic pain at Cornell Weill Cornell in New York City. She trained in this area and has a unique perspective on women's health issues.

She graduated magna cum laude from undergrad at Virginia Common, ended her medical degree from Virginia Commonwealth School of Medicine in Richmond. She completed her residency at Ob GYN in a New York Presbyterian Royal Cornell Medical center. After her residency, she joined the Smith Institute following a fellowship in urology under the mentorship of Doctor Robert Baldwin, a leader and innovator in pelvic pain. She has been on multiple publications. She was the recipient of the 2014 Marinoff Career Development Award from the National Vulvodynia association and been able to continue her clinical research interest in treatment of vulodynia and sexual pain. She's part of the International association for the Study of Pain, the American association of Gynecologic Laparoscopists, and the American Neurological association. She's appeared on many publications, on many news outlets, and she wrote her book, the definitive book on pelvic pain doctor Sonia's guide to navigating pelvic pain. She has a unique holistic approach to pelvic pain, sexual pain, and pelvic floor dysfunction.

And you guys are going to love this discussion. So we're here to educate so you could advocate. So listen up, and this is going to be good. Hi, everyone. Thanks for joining me again. This is Gynel girl presents sex, drugs, and hormones. I'm very, very, very excited today to bring you guys one of my BFF's from IG and now real life. Yeah, actually, and we'll talk about that.

But, you know, my name is doctor Samina Rahman. I'm a board certified gynecologist practicing in downtown Chicago, specializing in sexual medicine and menopause. I'm so excited to have with me doctor Sonia Bilani, who is pelvic pain doc in New York City. That's her IG tagline is pelvicpain doc. You guys will get all her credentials on the show notes, but she's an amazing, amazing person. And it's interesting because we met on Instagram, like, I don't know, six years, years ago or something. Like it was pre pandemic for sure, because you had before you started your practice. I remember.

But anyway, we're going to talk all the things that you guys want to hear about and what she does and how she came to practice, you know, in the sexual medicine space, and we're going to get at it. So thank you, Sonia, for coming to my podcast today.

Thank you for having me. I've been wanting. This has been a long time coming, so I'm excited that we're doing this.

But it's funny because I think we just started following each other. I don't want to say it was like, 2018 or something.

I mean, it was not in 2017 or 2018.

2017, yeah. It was like, it was a couple years before the pandemic, but I had just started getting on Instagram to advertise and educate for my practice and stuff.

But it was when doctors weren't on Instagram, so that we were, like, the only two that were, well, wait a minute. We do the same thing in Chicago and New York.

Oh, we're doing all the same things. And it was like we just became fond of each other.

Yeah.

And then we actually meet at real. In. In real life at a couple conferences and. Yeah. And we text each other quite often about, you know, life and. And patience and everything.

Like, yeah, well, they have the same philosophy of care. I think that's really what it is. Is like, we practice similarly, and then we just happen to be similar people.

But so you guys heard on the intro that, you know, Doctor Sonia Bilani, she is, you know, she has a book out on pelvic pain. She does a lot within the pelvic pain realm. When I met her, I think she was. I think you were still working with some. Some of the urologists that used to work.

I used to work in urology and academics in New York at Northwell, where I did my fellowship for, like, six years. And so then, you know, taking the jump was.

Your fellowship was in, by the way.

So, you know, it's interesting because I'm a gyn by training. So I did my residency at Cornell in New York City. Then I went on to do my fellowship in urology, which is very non traditional for the gyn lab. But I worked with one of my mentors. His name is Rob Moldwin, and he really pioneered the space of pelvic pain in terms of interstitial cystitis. And then you and I have trained with some of the gurus in Vulvodynia and that kind of thing. And so it kind of bridges the gap in this, where people are often tossed around from doctor to doctor seeking answers. So I think that was the benefit of it.

I was able to stay on in urology for a few years doing both, you know, vulvodynia, pelvic floor and icy work, and then ultimately went out on my own and seeing men with prostatitis, which is weird but true.

Yeah, yeah. For a gynecologist to see. Yeah, exactly. Because you and I are both board certified in Ob gyN. No longer practicing ob. But, you know, it's interesting because, you know, patients always ask me, what can you see? My husband, I'm like, I'm not a urologist, but, like, you have some training in that, which is wonderful. Yeah, well, and then you decided at some point, I think it was right before the pandemic or during the pandemic.

To start your own practice right before the pandemic. So my husband and I joke that, like, I decided to start my practice, there was, like a revolution, a pandemic, and, like, basically the world was falling apart, and I was like, hey, let me start my own private practice in here. This seems like a great time to, like, invest in my career, but it ended up working out. But, yeah, it was a really kind of crazy time to go off on my own. But I was so frustrated, you know, I mean, I love academics like you and I are both been in academics for almost our whole careers. And I think that's like, oftentimes when you're so subspecialized, that's what you're geared towards, is, like, academics, research, seeing patients, but really evolving the field forward. But the problem that when you're so clinical, like you and I, is that the patients don't get the support that they need. When you're asked to see patients in 15 minutes increments and their patients in pain, and you're trying to figure out what's happening, and you're not given the.

And they've been traumatized by the health care system over and over again and.

Nothing'S ever covered because insurance will say, no, I won't pay for a valium suppository, but I'll go ahead and pay for oxycodone. And you're like, well.

It'S interesting because I feel like, I always say, like, when it comes to sexual medicine, menopause, pelvic pain, all the areas that women really suffer for years and years on end, like, the system is set up for, like, us to fail as clinicians and them to fail as patients, because, you know, first of all, we don't get educated in this unless we go out on our own and get extra training or get, you know, go to conferences and get extra training or work with the gurus that we have that kind of invented the fields, that's one way to get the extra training. It's not built into the system. And then the other thing is you are in a system, and we were in academics, so you think like, hey, it's an academic medical center. You're going to get the best care. And I used to really believe that until I went into private practice and I realized, you know, barring some examples, I guess. But, like, you know, as a, as a generalization, if an academic center is still geared toward making money, and the only way you can make money in insurance based model is really to see 30 to 40 patients a day. Right. And to see the high yield stuff.

So I feel like the system is so rigged against the patients and the clinicians to get successful in treating them. And so that's why, unfortunately, throughout the years, women suffer the most, right. Over and over again.

And at the same time, I think, like you said, it's rigged in both ways. But as kind of clinicians, we take the brunt of the, my insurance doesn't cover this kind of approach, you know, and you're like, oh, my gosh, I know. And that is, I mean, I mean, I think we both lobbied in Washington, DC. I know I have for ic, and I think you have as well. I mean, like, there's only so much we can do to evolve this. But I always tell patients the biggest buildings in every city, like in New York, are the MetLife buildings, the insurance buildings, right?

So, like Blue Shield City, right. In downtown Chicago.

Let's not forget where the intentions lie, you know? But it's hard for also those kind of young doctors who are looking to get into the field because the field has become so popular in recent years with everyone wanting to do sexual health because they realize there's such a need for it. It's kind of like mesh where everyone starts doing it and then you start to get the complications because not everyone is trained. And I think that's where you and I kind of differ in the sense that we really have dedicated our careers to this, which is great. And I want more people to do that, and I know that many are, but it's almost like you have to be careful when you're seeking care because you just don't know, you know?

Exactly. Cause, like, especially with the social media the way it is, like, you know, a lot of people fake it till they make it. You know.

The thing with social media is awesome that everyone has a voice, but it's a little bit complicated because not everyone should have a voice when they're not a specialist. Do you understand what I'm saying?

Absolutely. Absolutely. That's. And I think that's where, you know, we see the pitfalls, right? Because we'll see patients who are seen by really big names on the platforms and they unfortunately didn't get the correct, you know, navigation of care, which is not always the case, but, you know, sometimes it.

And it's hard because our population, for any clinician that sees pain or menopause or sexual health is a vulnerable population, right? So it's a population of patients that, in general, are doing whatever they can to get their needs met. And so it's hard to delineate that when you're there, you know?

And I think you and I are, you know, we're both south asian, Punjabi by descent, and so I feel like we oftentimes see south asian by descent and Punjabi and everything. And we see a lot of, you know, brown girls who come to us for various things. But sexual pain, I think, is such a big thing in our community, particularly when it comes to pelvic floor dysfunction and vaginismus. I think we talk about this all the time. Is that, you know, and I think I've told you the story that, like, you know, it's so common that, like, you know, people used to call it Brown girl's disease, where I was like, you know, we've heard this. Right? And it's interesting because what I'm talking about is vaginism, which is involuntary contraction of the pelvic floor that can lead to worsening, sort of hypertonic pelvic floor and dysfunction. But we do think there is a component of cultural, you know, and. And social stigmas around sex involved with this.

But I think I've told you the story how, like, when I was a resident and some. And I've told the story on my platform many times, that my first year at internship, there was, like, a brown muslim girl there going into labor, and the attending was getting frustrated because he couldn't examine. She. Couldn't examine her. And she was, like, turned around to me after we left and said, what's the deal with your people? They act like they've never had anything in their vagina. Have I told you that story?

I don't think so, but I'm appalled.

Like, I was an intern. She was, you know, a caucasian woman. She turned around to me like, she was like a, you know, elderly intern. I mean, you know, she's been around a long time at the. At the. At the university I was at. And she's like, what's the deal with your people? They act like they've never had anything in the vagina. And I was just like, what? Like what?

That's horrible. But that also just furthers this. This stigmatization that, like, it's so interesting because you and I have talked about this before. Like, obviously, there are cultural things that can be related to vaginis, but ultimately, there's genetic components. Right? And so, like, it's not like, it's shocking that we have a lot of south asian patients, right. But it's also not that you can attribute it simply to our culture, you know? Exactly.

And I think it's, you know, the whole basis of, like, sexual shaming and all the things that happen in multiple cultures. Right. I see catholic patients who have it. I see orthodontics, foolish patients. Right? Like, you know, all the spectrum, and some people don't even have a religious basis for it, but they have, like, you know, sexual shaming in their household. So obviously, that is a factor. But then you have other things, right? Like patients who are anxious, who are always clenching or, you know, someone who has an empiric hymen. And the whole time.

I mean, this has happened to me before, like, the whole time. You can't examine them because they have such bad vaginismus. And this has happened at least three times in the last, I would say, five years that I've taken them to the or for doc subjections because they couldn't even do it in the office. And I found an emperor like, wow.

Yeah.

So, I mean, you know, it's not always. Yeah. You know, so I think that goes to our point that we all have our own, like, biases, you know, and then we shouldn't.

Definitely, we should check before we. But it also, I think, relates to the point that, like, yes, we definitely see a larger population of South Asians suffering from things like vaginismus, whether that's genetic or, as you and I would say, biopsychosocial. So there's a genetic component. There's always a social component. Also, there's psychological ramifications to these things. But ultimately, I think the hardest part in our population is that they often don't seek care. Do you know what I mean? Like, I have so many south asian patients that are like. I'm like, I always tell them about the genetic component.

I'm like, if you look at the data, you're almost seven times more likely to have it if you have a first degree relative who. Who has had it, you know? And they'll be like, oh, I didn't even know that. My mom and I haven't talked about that. And then sometimes they come back and they're like, you know, I asked my mom and she was like, oh, no, she had the same thing. And it's like, yeah, I mean, like, definitely. And it's. How sad at that age that they were just told to, like, breathe or like, you know, whatever.

Like, the sex is gonna hurt, so just deal with it, kind of thing. So they normalized, right? Like, yeah, yeah.

So. But, like, I wish more would seek treatment because often, or sometimes they come, like, south asian women will come see me and they'll say, but I don't have a partner, so I don't think I really need to do this. And I'm like, are you able to place a tampon? Are able to sit for long periods of time? You know? And some of those answers are no. And it's like, well, this is a quality of life issue that goes beyond simply penetrative intercourse, you know?

And then. And then many times, I'm sure you see it, too, where you have these patients for years who have unconsummated marriages, right. That they're trying to have a baby now, and they're like, what do I do? Like, you know, I kind of got over the fact that, like, I'm not going to have penetrative sex, but what do I do now? Like, I need to have a baby. And. And so that's what yesterday, you know.

And you're like, okay, well, this takes time, right?

Yeah. The longer you wait, it's like, you know, seven, eight years. I think that was the longest I've seen someone that seven or eight years without, like, penetrative intercourse with their husband. And it was like, well, we have a lot of work to do right now. So it's like. But, yeah, I think it's. And why do you think that? I mean, we see a lot of them. I think because we're south asian, right.

Maybe we understand the culture better. Like, why do you think they seek a out care from. From you and I?

I mean, I think, number one, there's not a ton of specialists, so I think you and I just happen to be to. And it's just fun. It's actually really just interesting that we're both of south asian descent and, like, we happen to go into this field. I'm sure there's some sort of psychology there, but who knows? But I think. I think the other thing is, like, it is definitely so normalized and stigmatized that it's hard to disconnect. And I think that seeing someone that you feel like you can relate to or that understands, like, kind of, like, your patterns or how long you want to take is really, really important because, you know, the patient doctor relationship goes beyond just, like, physiologic. Like, here, let me put in a speculum. Or do this.

Like, it truly is like, a collaborative partnership. And I think you have to be, especially for a topic like this that's so nuanced and so delicate, it's important to be with someone that you feel like you can actually communicate with. I will often bring partners in. I mean, I'm sure you do the same thing, because I'm like, this is not a one sided conversation, especially if you want to be with this other person and you want them to be a part of this journey for you. And I know you always say this, and I always say this, the absence of pain is not pleasure. So, like, even when we are treating your pain, if you're not having pleasurable intercourse, then we have work to do. You know, like I always tell you, I can easily treat your pain, that's going to be no problem. But, like, we have to work on all the other things surrounding it, too.

Yeah. And I think oftentimes, I mean, like, even when you solve their pain, I think they're so mentally accustomed to pain for so long. That's where we get the hiccups. Right? That's where they need the sex therapy and the other types of therapy because. And not even just understanding their own anatomy. Like, we can do that part, educate them. But I feel like I've done so much with some patients who for so long have lived with pain that, like, I'm like, no, on exam, your vestibule is fine. Your pelvic floor is beautiful.

This is a good to go situation. And they still can't get over the fact that they've had the pain for so long. Right.

It's so true. And you know what else I think is interesting? You and I have, I mean, we could talk for hours because we're so, like, similar and interested in this stuff, but you and I have talked about how in both our religions and cultures, we're both two different religions to really, like, I'm saying the european job, we're still, like, you know, we come from two different cultures, but ultimately, sex was not shamed as it is now. When you look at our culture from where it came from or our religions where it came from. Right.

Yes.

And so it's. And now you're seeing this hyper sexualization in India and this rape culture, and, like, you know, it really stems beyond, like, almost what we're talking about because it's been so ingrained in kind of, like, what we do and just sex in general.

Yeah, no, this is. And we should address this. This is such a horrible case that happened, what, just a couple days ago and called the doctor. Yeah, intern. So, yeah, she was a medical intern who, you know, was raped to the point of her death, you know, and so there's a lot of outrage about it. And I think it was in 2013 or 2012, there was that gang rape that happened in India, too, and they thought this was the sexual tipping point over there. Nuts sexual. But, I mean, obviously it was a violent tipping point.

But I think that, you know, where she was gang raped in public. Was this in 2013? It was like ten years ago, yes. And so, you know, we would have thought that, you know, things would have changed and, you know, sex was more, like, discussed in the households over there. But. But this is happening with this medical clinician, this intern in India who was raped. And to the point of her death. And it's just appalling. Like, the.

The violence.

It's so. It's so common. That's the hard part, is that we're seeing it. Yes, there's these big cases, but we don't even know the intricacies of what's happening on a day to day basis there because of how stigmatized and shameful sex has become. Now it's hyper sexualized, you know, and, like, if we sat down and we taught our kids about sex and didn't say, oh, this is bad, or, you know, like, yeah, we would be doing more empowering, you know what I mean?

And we all know that rape is really not even about sex. It's about power dynamics. Right. But still, it's this underlying, I think, culture of shame and stigma that is so prevalent, which did not exist, to your point, before colonization. Right. Like, we think all studies show before colonization of the indian subcontinent, there were, you know, the Muslims were speaking openly about, you know, sexual intercourse in the context of marriage, for the most part, of course, and the same in the Hindu. In the hindu culture and the. I haven't done much of the sikh work, but I'm assuming it's similar.

But I think that it was this puritanical view of what was, you know, brought into the community that really shifted the sexual.

And, you know, even with that remark about raping about power, which is 100% true, it's the same regard when we're treating patients with vaginismus in the sense that we're empowering them to take their care back into their hands. It's not just about sex. You know what I mean? It's not just about the penetrative intercourse. It's about empowering yourself to be able to do whatever it is that you want to do. You know what I mean? And so, like, it's just so interesting how it's all interconnected and, like. And then. So ultimately, I think that that's why a lot of South Asians can seek you and I out, too, because there is this other dynamic to it that you kind of have to understand to really be able to treat someone right.

Right. And it's just. It's really just. I know people talk about cultural competence, but it's really cultural humility at the end of the day. Right? Like, understanding the underlying tones of the culture so that you can be humble toward the fact that, like, different people see things differently. And you're not going to say, my way is better, but you're going to understand, you know, where they're coming from so they can speak to you and be upfront with you and talk to you in a way that, you know, will make their care better. Yeah, but to your point about vaginismus and really being, you know, like, re empowering them, I think also, you know, I'm sure you've had patients who have for years said, like, oh, but I mentioned it to my gyne a couple years ago when she was doing a pap smear that was very painful. And she said, you know, or he said, you know, have a glass of wine before sex, or maybe your partner needs to do better.

Someone told me that recently, like, the last time she spoke out to her doctor about pain with sex, her doctor had told her that her partner needed to work harder.

Oh, my God. Oh, my God. Oh, my God.

Great. Stage four vaginal. Yeah.

Gas.

Yeah, but I think, you know, that's true. The trauma they endure over the few years that they try to seek care is one that prevents them from wanting to even go further with it. And do you have patients that just kind of disappear sometimes when you, like, they start vaginismous care and then they get. And then, like, all of a sudden, you're like, but where did they go? Like, you reach out to them and then they're just like, I couldn't do it. I just, you know, like.

It'S, it's, it's heartbreaking, you know, or patients that are just like, I've gotten this, this far, but I'm good with this, you know, and that's fine. You know, everyone has their own, like, and I'm absolutely with that. But I think that's also where some of this comes into play, because, look, any doctor can prescribe you hormones. Any doctor can give you medication. Any doctor can recommend a procedure. Not every doctor can do it, but any doctor can kind of sit there and spew out. I mean, this is all data driven. Anyone who gets this far in life is usually pretty smart and competent.

But, like, at the end of the day, it's like me having a tennis racket and Rafael Nadal having a tennis racket. We have the same tools. It's just how you use them. If you're not using these tools as it works for your individual patient, then it's not going to work. You know what I mean? And I think a lot of times people practice, like, a protocol, and that doesn't work for what we do because it just. That's not how patients. That's not how this field works, you know?

Exactly it's biopsychosocial, but it's all very individualized to the patient. Yeah, totally agree. Let's talk a little bit about bladder issues. As someone who treats provoked vestibular DNA, I think I did a podcast on. You can have pain at the opening of the vestibule, that little inner area of tissue between the labia manor and the opening of the vagina, the hymeneal remnants of up to the urethra, down to the perineum. And we talk about hormonally mediated vestibulodynia and how it can actually mimic some of the same conditions of interstitial cystitis. Right. So we always look at the vestibule, I think, first, right.

To see that if you're having persistent urinary urgency, frequency, painful urination and all the things, and you can see that someone has hormonally mediated vestibulodynia, and you treat that, right, you give them the topical hormones, you might treat their pelvic floor. Floor and all the things. But then some of those patients, it doesn't work for. Because it's not hormonally mediated vestibulodynia. Right. It's painful bladder syndrome or interstitial cystitis. So can you talk to me about how you approach that once you realize, okay, their vestibule is fine now. Their pelvic floor is fine now.

Let's go from there.

I mean, I think that's the most important part about having holistic care, is being able to kind of, like, take a look at all of these different factors. Because 80% of patients who walk into my office with the diagnosis of Ic actually have concomitant pelvic floor dysfunction or some sort of vestibulodynia, whether that's hormonally mediated or neuro proliferative or whatever. Okay, so what is iC? So, in the United States, when we look at, like, the NIDDK data, we call interstitial cystitis bladder pain syndrome. Okay. And in Europe, they call it painful bladder syndrome. It's just nomenclature. It doesn't really matter, but it does a little bit in the sense that, like, the whole point is that phenotypically, this is a bladder centric diagnosis, meaning that it's coming from the bladder and it's not coming from the nerves, it's not coming from the muscles. So what causes ic? We don't really know.

We believe that there is some sort of chronic inflammation. Oftentimes there can be autoimmune things going on at the same time that lead to a degradation in the gag layer of the bladder. And the glag glare of the bladder is called the glycogen aminoglycan layer. It's the protective layer of the bladder. And if I ever want to make an analogy, I say it's akin to leaky gut. Right? So they. What happens is the chronic inflammation creates holes in this gag layer. It's like a protective coat.

So it's like wearing a raincoat outside. And now your raincoat has all these holes in it. You're gonna feel the rain a lot more.

Right?

So people with painful bladder syndrome feel everything a lot more, whether that's when their bladder is full, whether that's pain from their bladder, or pain with bladder filling, or pain after urinating. So the biggest symptom when you're looking at a patient or evaluating for interstitial cystitis, is, number one, that it's a clinical diagnosis. So people always ask me, do I need a cystoscopy to be diagnosed with iC? And the truth is, if you look at AUA guidelines, you do not. Most people will do a cystoscopy because you. When you are evaluating for interstitial cystitis, you're dividing these patients into two groups. You're dividing these patients into hunter's lesions and non hunter's lesions patients. And so 80% of patients with interstitial cystitis have non hunter's lesions. So you look in their bladder, and it looks completely normal.

That doesn't mean there's not something going on, but that is the definition. When you're looking at why you would even do a syndrome, 15% of patients will have something that's called a hunter's lesion. This is an area of inflammation inside of the bladder that we can see visually. Okay. It looks like a star red pattern. In general, if you look at the data, this is most commonly found in patients over the age of 55. So what we believe is that this chronic inflammation harbors in the bladder and often doesn't have provide visual evidence until they've had it for a very, very, very long time. The reason that you care about this is because you're going to treat patients with Hunter's lesions and non hunter's lesions very differently.

So patients with Hunter's lesions, you can inject with, like, a topical steroid cystoscopically. And that oftentimes really helps their symptoms of pain in their bladder, persistent urgency, and frequency. Although the vast majority of these patients do have concomitant pelvic floor dysfunction. So you're kind of working with both patients without Hunter's lesions, you're going to treat differently. So oftentimes, those patients are the patients that will benefit from things like hydroxyzine, like low dose anti inflammatories, amitriptyline, norotrypsyline, bladder installations, rapid flow. So we have a ton of different options with these patients. They just don't fit into the box, phenotypically, like Hunter's lesions patients.

Right. Okay. Gotcha.

And so it's important because IC is something that both women and men have. The vast majority of people will try to treat IC with diet alone, which, if you look at the data, has a ton of selection bias. So it's one of those. And I can say that because I helped to write that data. So, like, you know, like, you write it and then you review it and you say, okay, like, this was faulted this way, but because essentially, it's a retrospective study that we used questionnaires for. Do you know what I mean? And so ultimately, you selected for the patients that were diet sensitive when you did those questionnaires.

That's true, yeah.

And the only reason I bring that up is because most patients who come to my office with IC are like, I've done the diet. It didn't work. So does that mean I don't have IC? And it's just because that's the most common thing that they're given to try to help them when the data is just very faulted. And a lot of people with IC are not diet sensitive.

Right. Right. So tell me how you walk through this. So you have a patient that maybe has had a diagnosis of iC, but jumped around from gyne to urologist to gynae to urologist, or you're a gynecologist, whatever, you examine them, right? You're tracking, you're making sure their vestibule is what, you know, is it coming from the vestibule? Is it coming from the pelvic floor? Is it both? And you treat that, and maybe it doesn't help. Do you go straight to cysto at that point, or how do you work out those patients?

So I think it depends on their symptoms. So, number one, if the first visit, like you said, I'm doing the Q tip test, I'm testing their pelvic floor. I'm asking questions like, what are your symptoms? And if they're saying things like frequency, persistent urgency, pain with bladder filling, the feeling of incomplete emptying, in general, you have to peel the onion. So first things first. If their pelvic floor is hypertonic, and they're presenting with bladder based symptoms. I'm going to treat the pelvic floor, you know, because that's my money shot.

They're always hypertonic, right? Cause they're usually.

Yes. I mean.

I mean, Twitter or your ex comment that they were like, if you're not clutching your pelvic floor, I mean, like.

If you don't have pelvic floor dysfunction in this day and age. Yeah, I don't know what pelvic person you are. I don't know. So I'm definitely. I'm targeting their pelvic floor now. After I target their pelvic floor and they come back, it's really going to be contingent on their symptoms. So if they say to me, you know, I really felt like my frequency's gotten better, perhaps even my persistent urgency. But this pain with bladder filling, it's not going anywhere.

It's still there. And it really hurts when my bladder fills. I feel a lot better after I empty, but it's. This pain is searing. It's just. It's. It's driving me insane. Then I have two options.

So, number one, I'm not just going to jump to a cysto, although at some point, I'm going to have to do a cysto. But we can try other remedies, like oral medications, things like urabel, peridium. If I numb the bladder, are you getting any relief? Do you know what I mean? So if I numb the bladder, do they get relief? Do you see what I'm saying? If that's there, then I know that something is coming from the bladder. Oftentimes, I will say, look inside. Let's make sure I'm not missing something. Number one, a hunter's lesion. But number two, even some type of bladder tumor, although less common, it is always, we are looking for these zebras, right? And so we have to make sure we're not doing something that could be harmful.

As an academic medicine, we see a lot of zebras, so we're used to seeing all the zebras. Right?

Right. And so we do assistoscopy. Everything looks okay. At that same time, I'm gonna put in an installation. And normally, my installations are composed of things like lidocaine, marcaine, always a coding agent, like heparin, elmiron, hyaluronic acid, whatever you want. Like, you know, in Europe and the US, we use different entities. Oftentimes an anti inflammatory, like a little bit of steroid kind of log, something like that. And if the patient gets symptomatic relief, even for an hour, you know what I mean? Or for a day.

That points in a direction for me, because if your pain is coming from your bladder and I numb your bladder and you get relief, then automatically this is called an anesthetic challenge, and you're diagnosed with interstitial cystitis. I think the biggest misconception that we have is that IC is a one entity thing that I see is a one entity thing I see is a spectrum. Right. And so, you know, you don't have to be, like, 100% here or 100% there. Like, oftentimes there's this middle ground, and that's when patients get placed on things like overactive bladder medications, mere betrayal, that kind of stuff. So, you know, that's kind of how I'm going to approach this situation.

That's wonderful. Yeah. I mean, I think it speaks to, you know, just the. How we always say that, you know, we're just not enough. I always say, like, if I had a dollar for every time I say, we just don't have that much research in this topic. So this is what we think is happening. And that's why there's so many syndromes and disorders. I always say that's the problem with women's health and research, you know, is that we don't have enough research in women's health.

That's why we have so many syndromes and disorders. Right. Like things like, you know, hypertension and diabetes or diseases, because we know exactly what's up with them, right. But when there's syndromes or disorders, like, we have to just put pieces together and assume that we know, like, something. And, you know, diagnosis of exclusion or clinical diagnosis, you know, it's, like, frustrating, right? It's like, with endo, like, yeah, I mean, you know, surgically, that's how we would diagnose it. But does everyone need to go have a surgical diagnosis? You know, like, not. Not always, right? They sometimes, most of the time, we go clinically. We try to treat your symptoms clinically, like, what's happening, you know, with your dysmenorrhea, with your pelvic floor, with your sexual pain.

But it's frustrating because these are disease entities that are really, like, system based. Like, some of them are affecting more than just the bladder or just the. The bowels. Like, for instance, with endometriosis, right? And it's just like, I know both of us, we're not endo trained surgeons, but we treat endometriosis from, like, pelvic floor perspective. And, you know, with. With hormonally based remedies and all the things. But it's very frustrating.

And that's the truth. I mean, but. And that's the other issue, kind of. I find that when you're treating women's health is that often it's not a one source thing, you know? And so everyone wants it to be, like this single entity cause. And for the vast majority of patients, the reason it's so complex, it's because it's a little bit of this and a little bit of that. And if we're not treating everything concomitantly, then you're not gonna get the relief that you so desire, you know? And so. And I think that's what becomes frustrating, too, is that everyone wants a single pill or a single procedure. Damn, I'm done.

That's not the nature of the game.

You know, that's the frustration in general, I think, when it comes to people that just want protocols or cookie cutter medicine, like, that's why it's important for, like, you know, when you go to a specialist, that they do have the time and the energy and the resources to get to you, get you to the people, you need to see that they have a team of people working with them, because none of this is cookie cutter medicine. Right. It's not just a one size fits all.

It's very new, it's very nuanced, and it's very, like we are looking at every cause.

Yeah, exactly. We want to give you as close to 100% relief as we can get, and that's our goal. We want to get you pain free, but also seeking pleasure, too, which I think is always the challenge for patients who have suffered for so many years.

Absolutely, absolutely. And I think it's great that you have this platform and you use it to educate people, especially, you know, oftentimes south asian patients, all patients in general. Like. But, like, there is such a lack of information for specific patients coming from different places. So I think even just being able to access the information, knowing they're not alone is huge.

You know, as we wrap up, Sonia, tell us, like, what advice would you give, like, a patient who, you know, has been, you know, to multiple providers? Like, what are the things that you tell them to look for when you're looking for someone that they can. That can help them or to, you know, at least guide them in that direction? Like, what. What kind of closing advice would you give to our listeners and viewers?

Number one, I think that, know, be an advocate for yourself, because I think with this field, often, we, like you said, and I hate it. I hate that people are gaslight lit, and they're just automatically told that nothing can be done or that it's in their heads or that, you know, I think, like, patient advocacy is really important. It's something that you and I do, but I think patients themselves need to be their own advocate. They need to have.

No one's gonna save you. You gotta save yourself.

Yeah. And come in with your, you know, like, have your. Your documents together. Like, I always tell patients before they see me, I ask them to send me all their previous history. Because we're not reinventing the wheel here. We're looking at the nuances to see what didn't work and why they didn't work and what we can do to actually get them to effective care. And for me, I don't even do general gyn, so, like, my goal is to. To get them better and then get them moved on.

You know what I mean? So, like. And so, like, number one, being an advocate for yourself, number two, I do think that we know our bodies more than we give people credit for. So, like, point being that, like, if someone's just telling you that, like, this is not it or. And you're convinced that there's something else happening, like, even with recurrent BV or, like, recurrent symptoms, like, there are people like you and I, and there are different, like, sites and stuff where they can connect you to doctors local to, you seek out those sites, like, you know, ish, wish, NVA, ic network. There are all these different, like, conglomerates that can help direct you to specialists like you and I. Who can help?

Yeah, absolutely. I mean, I think those are very important. And I think that, you know, my tagline is, like, I'm here to educate so you could advocate. Like, we want to educate you so you can go and advocate for yourself. Right? So that. And I actually, you know, like, don't you hear it, like, on certain groups, like, where docs get frustrated because they googled so and so and, like, whatever. But I actually love it when patients come, like, really well educated and, like, they know their body. Like, I had a patient recently that came to me, and she was like, you know, I read, you know, the book by, you know, the Goldsteins and Jill Kraut, the one on when sex hurts.

I read this. I did this. I think I have neuro proliferative astronauts. And I said, okay, well, let's check it out. I'm glad that you know what that is. You know, at least you have the vocabulary for it. And actually, she, and she did. She was totally right.

Like, she had been through seven, eight years of, like, lack of treatment, and she was like, you know, I figured out, like, I know that it's the vestibule, not the, you know, vagina, you know, like, she had figured it out. So I actually love that. And I know you do, too.

Yeah, absolutely. I love it. And I think that many patients are able to self diagnose, you know, especially when they've been through the gauntlet like this and we have to, like, give that, like, and I always tell patients, Google, oftentimes Reddit rabbit holes can be scary. So just ask me, you know what I mean? Like, if you have a question, that's what I'm here for, you know, because oftentimes just going down these rabbit holes, that's what gets. Can, can have it become so, like, stressful, anxiety provoking, right?

ANd sometImes, and we say this, I think, to our patients, like, I speak especially with, like, you know, with the PGAD patients who are really struggling for a long time, or these other pain patients, sometimes they go to these groups where, like, there's a lot of people telling their stories and sometimes it's really helpful and sometimes it's actually like, I need to step away from that because there's a lot out there that is actually scaring me now, you know?

Yep.

It's like your body. So, like, social media, like, sometimes you love it and sometimes you hate it.

Sometimes you're like, yeah, exactly. There's a time and place, right, but.

Just, you know, and I think to your point, what you said is like, you know, women know their bodies better than they think. So I love that you said that, that like, you know, listen to your body and understand what, what you're going through. Well, thank you so much.

This is fun.

Well, thank you again, Doctor Belani, for coming to these podcast Gynegirl presents, sex, drugs and hormones. Remember, I'm here to educate so you could advocate for yourself. Please tune in next week for another great episode and please, like and download my podcast so I can get, you know, more people to listen to it. Thank you so much. If you have a second, please subscribe to this podcast. I'd love for you to be a.

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