00:00 – Dr. Maria Uloko: All doctors need to know how to examine this tissue because it matters for your bladder health, your pelvic floor
00:07 – health, your vaginal health, your sexual health. It just matters.
00:24 – Melissa: Doctor Maria Uloko is a board certified urologist specializing in sexual health, reconstruction and prosthetics, recognized globally
00:31 – for her expertise in treating sexual dysfunction across all genders. As the CEO of MUMD Sexual Medicine Consulting and founder of VUVLAi,
00:38 – an AI driven patient advocacy tool, Doctor Uloko is committed to improving the quality of life for her patients through compassionate
00:46 – and inclusive care, with extensive experience in conditions like vulvar sexual function, erectile dysfunction, and hormone replacement
00:52 – therapy. She also focuses on addressing healthcare disparities and advancing medical education. A respected researcher and former
00:58 – UCSD professor. Her work has been featured in leading publications such as The New York Times and Forbes. Thank you so much for joining
01:05 – me today to answer the questions from our community. Dr. Maria Uloko: Thank you so much for having me. I’m so excited to be here.
01:10 – Melissa: Well, it would be amazing if, first of all, you could share more about your professional background and your current research.
01:16 – Dr. Maria Uloko: Yeah, so I am a board certified urologist that specializes in comprehensive sexual health, which means that I
01:22 – take care of the medical and surgical management of sexual dysfunction of all genders. There are about seven of us that are fellowship
01:28 – trained to do this in the world and it is so fun. So everything
01:33 – from menopause to chronic pelvic pain to erectile dysfunction,
01:39 – I get to be able to support people throughout their lifespan and throughout their sexual health journey. So it ranges from disease
01:47 – to pleasure, and that’s I get to be with people through that. And then in terms of my research, my research has been focusing
01:54 – on really filling in the gaps in knowledge which sounds like that’s
02:01 – what research is. But if we really think about, you know, that’s like you’re like, well, duh. But in women’s health, actually,
02:09 – there’s a lot of foundational research that still hasn’t been done yet. So our research group is mapping out the vulva. So we
02:17 – won two international awards for discovering how many nerves are in the human clitoris. We’re currently mapping out the hormonal
02:24 – pattern of the vulvar vestibule now. I do a lot of research as well related to vulvar health and disease states. And as well
02:35 – as disparities, care, education reform, you know, a lot of doctors aren’t being trained on this. And, you know, making – bringing
02:43 – that awareness to physicians and to the healthcare world and also to patients, because that’s really who I do all of this work for,
02:50 – is that I think of research as a means for advocacy. It’s a means to create access and to answer really tough questions with the
03:00 – idea that all of those – that answering a question is ultimately going to lead to solutions that are going to better people’s lives
03:07 – and it’ll help them live healthier. Melissa: That’s really well aligned with the work that we do in research and advocacy as well, and as a community of people living
03:15 – with recurrent and chronic urinary tract infection, we get a lot of questions about chronic vulvar pain, and so it would be great
03:22 – to start there. The first set of questions is about terminology. So if you could explain how the terms vaginismus, vestibulodynia,
03:29 – vulvodynia and the overarching genital pelvic pain penetration disorder are defined, that would be a helpful place to start.
03:36 – Dr. Maria Uloko: Yeah. You know, this is actually such an interesting question because it goes to show just even within the field of
03:47 – medicine, how we call kind of the same things, different words. And so words really matter when you’re coming in with conditions
03:56 – that are considered hard to treat. And I think this speaks, speaks
04:01 – more to the larger narrative of kind of that lack of accuracy in when it comes to vulvar health. So let’s get real clear about
04:09 – this. So vaginismus is a term that actually just means vaginismus
04:14 – is a psychological fear associated with penetration and so that
04:21 – psychological fear oftentimes leads to muscle tensing. So many people will use a lot of these terms interchangeably, but they
04:29 – actually mean different things. Vestibulodynia, so vulvodynia is essentially vulva means all of the vulva, and then dynia means
04:39 – pain. So pain in the vulva. And it’s a very general term of like, I don’t know, something down there is painful, which again, you
04:46 – can kind of see kind of the lack of care in that terminology. Vestibulodynia is a subset of vulvodynia. So the vulvar vestibule
04:55 – is a structure that most people actually think it’s the vagina, but the vagina is the canal on the inside. You don’t see the vagina.
05:03 – But most people, when they think of their vagina, they’re actually thinking about their vulvar vestibule. The vulvar vestibule is
05:09 – such an interesting – it’s like my research, baby. I’m obsessed with this tissue structure. So it’s actually bladder tissue on
05:15 – the outside of the body and also it’s very testosterone dependent.
05:20 – And the vulvar vestibule – vestibule literally means entrance to the temple. So it is the entrance before you get into the vagina.
05:29 – And the vestibule is actually the site of 90% of vulvodynia. So
05:35 – vestibulo, vestibulodynia – pain in the vestibule. So this is why, like words matter. Because like if you just say vulvodynia
05:43 – and you’re like, okay, what? That could be clitorodynia, that could be labiadynia, it could be pain anywhere versus when you
05:51 – start getting really granular and you say, I have vestibulodynia, you have pain in your vestibule, and then it helps to start breaking
05:57 – those things down. And then GPPPD is the terminology coined by
06:04 – the DSM five which is describes six months of pain with penetration,
06:12 – anxiety and fear with penetration. And so it’s more almost like
06:18 – a psychological terminology as seeing that it’s in the DSM five
06:23 – than like vestibulodynia or vulvodynia. So GPPPD is kind of like the big umbrella terminology of when you have penetration or any
06:34 – sort of sexual contact, you’re going to have pain. And vulvodynia is the most common type. Vestibulodynia is the most common type
06:40 – of vulvodynia. And then vaginismus is the mental anguish that is result from all of the pain. So right. They’re all interconnected.
06:52 – But it’s really important that you use the correct terminology. But for the most part, most people don’t know that. They just
06:59 – say it hurts and so they use it interchangeably. Melissa: Yeah, and that’s what’s going to be my next question is
07:04 – that people often do feel pain from many different sources when they have chronic bladder infection, and then they have these
07:10 – other pains in the vulvar region. So they might not know how to differentiate that pain. How does a clinician diagnose between
07:16 – these different types of pain? Dr. Maria Uloko: Oh, very poorly. I’m not going to lie to you. So and the reason for that is because most clinicians aren’t taught
07:24 – about the vulva. So I started medical school at 17 and so I have
07:31 – now been in medical in medicine for 15 years. It was like truly wasn’t until my fellowship in 2020 – 4 years ago where I learned
07:40 – about the vulva, which is fascinating because part of the vulva is the bladder. Like we said, the vulvar vestibule is bladder
07:46 – tissue on the outside of the body. So for a lot of people suffering with vulvodynia in vulvar pain, they actually have – I think it’s
07:56 – about the stat is like almost 65% of people with vulvodynia will also have urinary symptoms too.
08:04 – So urinary symptoms, classic urinary symptoms or classic symptoms of a UTI of urgency, frequency, pain with urination, burning with
08:15 – urination. You can even have some blood and even some lower abdominal cramping. So there’s a lot of overlap between UTIs and then also
08:25 – vulvar health because and I’m going to come out, I’m going to think – I’m going to change the paradigm. Or I’m going to change
08:33 – the paradigm of how we think about what we’re calling UTIs. I want to start calling these symptoms lower urinary tract symptoms
08:41 – because pain with urination, burning with urination, you know,
08:47 – frequency, urgency, incomplete emptying. Those aren’t only synonymous
08:53 – with a UTI. It can be so many other things. And so even the way that, you know, when people start having these symptoms, they
09:00 – immediately go to their doctor and they say, I have a UTI. What you actually have is lower urinary tract symptoms. And what should
09:06 – then happen is that the doctor should then do a formal evaluation of not only your urinary system, but also of your vulva to actually
09:15 – see what is attributing to your symptoms. So that is the paradigm that I’m actually trying. And a lot of my research has discovered
09:23 – this, and I’m trying to now get into the broader narrative of of health care and training.
09:29 – Melissa: Is there an understanding of how a diagnosed UTI could lead to chronic vulvar pain?
09:35 – Dr. Maria Uloko: Yeah. So, you know, I,
09:42 – again believe that we need to push like take a step back. So when
09:49 – a person is coming in with the symptoms of – the classic symptoms of what we deemed UTIs, we have to start thinking about this is
09:59 – an inflammatory state. It could be inflammation from an infection. It could be inflammation from hormonal changes to the vulva. It
10:06 – could be an inflammation from vaginal infections. You, there’s some – it can be inflammation from really tight pelvic floor muscles.
10:13 – You know we can have there’s so many things that can mimic a UTI. And I actually am starting to want to challenge physicians to
10:22 – start thinking broader when a patient is coming to them with these classic symptoms that we’ve always attributed to infections. So
10:31 – one of the – ultimately all of these symptoms can cause inflammation. Whenever you have inflammation, either if it’s in the urinary
10:38 – tract or of the vagina, they’re right on top of each other. They’re the same. They’re the same tissue structure. And so that inflammation
10:47 – can then translate into vulvar pain as well. And so that’s how
10:55 – the – that can go into vulvar pain. The other thing is that you can also that secondary pelvic floor dysfunction. So the first
11:03 – thing that happens when your body is in pain, it’s not – it’s not uncommon for it to tense up. And so when – and I use the analogy
11:13 – of like let’s say that someone’s going to throw a punch at you. The first thing your body is immediately going to do is tense
11:18 – up to protect itself. That is what your pelvic floor does when it’s having inflammation happening. For some people, they’re able
11:26 – to think about it and relax their pelvic floor. But for a lot of people, we store a lot of tension and pain and discomfort in
11:36 – our pelvis. That tightening of the muscle without us really thinking then exacerbates the pain that we already feel and exacerbate
11:44 – the inflammation. So it’s kind of a never ending loop. You cannot think about the bladder without thinking about the vulva. And
11:51 – that’s really what my research is showing. And it’s really, really,
11:56 – really exciting to rethink the paradigm of diagnosis around chronic
12:03 – UTIs, because I’m a big believer that most people actually don’t have chronic UTIs. I think they just are misdiagnosed because
12:10 – most doctors don’t know about the vulva. Melissa: Yeah, I think there’s a lot of misdiagnosis and under diagnosis
12:15 – in this space in general. And we often hear from people who just haven’t been able to get diagnosed with anything. So it’s not
12:21 – a case of misdiagnosis, it’s just a lack of diagnosis. Previously you mentioned the psychological impact or the link of psychological
12:30 – effects. How influential do you think that is with past trauma or anxiety and chronic vulvar pain?
12:36 – Dr. Maria Uloko: Oh my gosh. It’s so impactful. But the thing is it’s not the
12:45 – oftentimes the driving cause of their pain. It’s just an exacerbating factor of the pain. And a very common cycle is that, you know,
12:53 – a person with vulvar pain will come in. They say, hey, I’ve been
12:58 – having these issues. Then the doctor will dismiss them or guess and put them in this never ending cycle of misdiagnosis, trial
13:06 – and error. So for, on average, it takes about seven years to get
13:11 – your first correct diagnosis. Like that’s seven years of advocating
13:16 – that, seven years of pushing that seven years of suffering and that worsening of the, you know, I go to the doctor, I’m looking
13:26 – for answers. I want to get better. The doctor is telling me there’s no way to ever treat you. You’re never going to get better. Psychologically,
13:33 – that is so damaging. If you believe that your disease is never going to get better, it totally changes your outcome around and
13:41 – the attitude around what you are experiencing versus it’s not uncommon for people to come
13:49 – to me. They’ve been struggling for decades, and I’m like, I can diagnose you in 30 minutes. I know exactly what you have based
13:95 – off of my training and my research and my expertise, and you can literally watch their hope come back. It is one of the coolest
14:03 – things to give people back their hope, and then to actually then solve their problem. Like I’ve had so many patients. How I came
14:12 – into the UTI space is that a lot of people after sex will have UTIs. I’ve had so many patients that and I’m also a urologist,
14:18 – so I started in the UTI space, but then I broadened my UTI research.
14:23 – So many people that wouldn’t have sex, couldn’t have kids, could never do the thing because they’re so fright – afraid of the potential
14:31 – of a UTI, the potential of pain, all of the things. And I’ve been – I’ve gotten so many ultrasounds of babies of like, hey, I’m
14:39 – pregnant. Like, that is the best feeling, or I haven’t been to the E.R. in six months. Like that, to me, is just the absolute
14:48 – best feeling in the entire world to be able to give people their life back and you just get to see that psychological change of
14:56 – you’re not broken. This isn’t chronic. A lot of this is just misdiagnosed.
15:02 – And we can we can get down to the bottom of things. So yeah, the psychology around how we even talk about these disease states
15:09 – really, really matter. Melissa: Yeah, I agree. And can you talk a bit about how you get down to the bottom of things for someone who has had this kind
15:16 – of pain for such a long time? Dr. Maria Uloko: Yeah. Okay. So really it’s just knowing the vulva.
15:22 – It’s that’s the – that is the tea. That is really my secret sauce is understanding that vulvar anatomy and physiology is very linked
15:32 – to bladder anatomy and physiology. And so when someone comes in with symptoms, I just have a larger toolbox and toolkit for figuring
15:42 – things out. And how I came out about this was when I built the
15:48 – first vulvar sexual health clinic run by urologists in the United States that openly accepted insurance. And I had a significant
15:56 – volume like it was – it’s interesting, when I proposed this idea, everyone was like, I don’t think women will want this. I don’t
16:03 – think people will want this. And then I had 2000 patients in two years and a year and a half waiting lists. I was like, I think
16:09 – people definitely want this. But you know, as a trade off, I then
16:15 – inherited the UTI clinic, the prior physician was well renowned,
16:20 – world renowned in her work in UTIs. And so it felt like I was stepping into really big shoes. And so I was taking over her patient
16:27 – and building a vulvar clinic. And, you know, a lot of my vulvar clinic was a lot of pain. And then I go to my UTI clinic, and
16:34 – I was hearing the exact same symptoms, urgency, frequency, pain with urination, burning. Also, sometimes it hurts to have sex
16:42 – like, oh, I’m getting UTIs after sex. Like, I was like, wait a sec – all of you guys are exactly the same. Fascinating. So then
16:50 – what I did was I did a protocol where the American Urologic Association
16:56 – has guidelines about how to manage a chronic UTI patient, the or like how to work them up of, like, okay, you know, when someone
17:04 – comes to urologists for recurrent UTIs, our job is to figure out, is there something in your anatomy that’s causing this? And I
17:13 – think about being a urologist just means I’m a glorified plumber, right? I
17:19 – just gotta make sure that the pipes are flowing. Well, if the pipes aren’t flowing well, that’s how I think about the urinary
17:24 – system. I just got to make sure all the things are – it’s good with the plumbing. And one thing that the guidelines absolutely
17:31 – forget is that the vulva is part of the plumbing. It’s actually the end part of the plumbing, the urethra, which is the hole that
17:38 – you pee out of, sits right in the vulva. And like we said, that vestibular tissue is bladder tissue on the outside of the body.
17:44 – So I did this protocol where I did the AUA guidelines, but then
17:50 – I added in my vulvar training and how I work up my vulvar patients. And so in a two year cohort of roughly about 350 patients that
18:00 – were referred to my clinic for recurrent UTIs, I found that 88% of them actually had an inflammatory hormonal issue and not an
18:10 – actual UTI, not an actual infectious inflammatory issue. So 88%
18:17 – of the people that had been told their entire lives, or however long this issue had been of you have recurrent infections and
18:25 – disease, actually had an hormonal issue that was causing and mimicking
18:31 – the same symptoms and predisposing them to UTIs. And we treated the vulvar inflammation and we absolutely stopped their UTIs –
18:40 – 88%. So that was over two years. When the final result of that
18:46 – came out, I was like, this is wild. This is – this is groundbreaking
18:51 – work. Also 88% of misdiagnosis. That’s actually like statistic – like that’s clinical error at that point. Like we’re doing something
18:59 – wrong. So then we did a database study to confirm this because I was just like there’s just no way. Like there’s no way that
19:06 – we’ve just been doing this wrong this entire time. And it turns out we have been. So we actually then looked at,
19:14 – so this inflammatory condition, this vulvar inflammatory condition is directly related to your hormone status. And so things and
19:20 – there are many medications that change your hormone status, particularly actually testosterone. Testosterone is a very important hormone
19:29 – that is produced by the ovaries. And it’s very important for your vulvar vestibule to stay and remain healthy. It needs estrogen.
19:35 – And also it needs testosterone. The vulva is actually a really testosterone driven organ. So then we looked at the rate of –
19:45 – we did a database study, a national database study, and looked at people that had been prescribed anti androgen medications.
19:52 – And so that could be oral contraception, that could be acne medications, hair loss medications. We looked at, you know, if you’ve been
20:02 – prescribed anti androgen medications, which causes the vulva inflammatory state versus the general population, did you have a higher rate
20:10 – of UTIs? And yes, they did. And so that – both of those research projects have both been presented at several at the AUA, at Sexual
20:20 – Medicine Society, like all throughout the world. And we’re finalizing –
20:25 – we’re finalizing the papers now. But yeah, I mean, this is huge. This is a game changer for patients that have been suffering and
20:33 – been told that they’re chronic diseases, when in actuality it’s just high rates of misdiagnosis because unfortunately, most doctors
20:42 – don’t know about the vulva. We actually just recently did a research study that showed 75% of doctors don’t – that are currently undergoing
20:51 – medical training today, that’s across all specialties, including gynecologists. Gynecologists are actually the worst reporters
20:59 – of knowledge around this – don’t even know about how to examine
21:04 – the vulva, vulvar diseases and then how to treat vulvar diseases. And these diseases are very common. They actually affect 100%
21:12 – of people because they’re related to hormones. And everyone, if they live long enough, is going to go through menopause. So there’s
21:18 – a real reason as to why menopausal people get UTIs. It’s all –
21:25 – do you see how it’s all connected. And yet we’ve been missing
21:30 – this because we don’t understand hormones and we’re not taught as a medical community about hormones and women, about testosterone
21:38 – and women and the vulva and about vulvar anatomy and physiology. And that’s actually why I built the company that I’m building.
21:45 – Melissa: Did you find in that the 88% of people that that was the same across all age groups, or is that mostly perimenopause and
21:52 – post menopause? Dr. Maria Uloko: It was the same across age groups. So in the premenopausal
21:58 – patients I always get labs. I always check their testosterone. I get a full comprehensive panel, hormone panel, as a researcher
22:06 – and as a hormone specialist in vulvar specialists, I understand intimately that the vulva is dependent on your hormones. If your
22:13 – hormones aren’t healthy, your vulva isn’t unhealthy. And so,
22:18 – all of them actually had significantly low testosterone levels in the premenopausal people and then in menopausal or menopausal
22:27 – patients or postmenopausal patients, I don’t check hormones unless they’re coming for specifically for hormone replacement therapy
22:34 – and menopause management. But if they’re coming for UTIs, I typically don’t check their hormones because I already know that their hormone
22:41 – status is low because that’s the whole part of menopause is that your ovarian reserve of hormone production is practically zero
22:51 – for extra for – it is at zero for estrogen and progesterone and then for testosterone significantly lower. You still make a little
22:59 – bit of testosterone in your adrenal glands, which are like little, little nuggets to sit right above the kidneys, but very markedly
23:06 – low states. And so that’s why we see – it’s a huge contributing factor as to why so many people will develop, quote unquote, UTIs.
23:15 – Yeah. Melissa: Aside from hormones, are there other things that you’ve
23:21 – seen commonly in people that are causing the vulvar pain? Dr. Maria Uloko: So the most common is hormones. That’s the one
23:28 – I see the most is because it is so- like it’s so ubiquitous. Right? So many people are on oral contraception. So many people are experiencing
23:36 – menopause and unsupported through their menopause journey. The second most common cause of these symptoms is pelvic floor dysfunction.
23:46 – So we’ll see a lot of pelvic floor dysfunction mimicking your lower urinary tract symptoms. So and oftentimes pelvic floor dysfunction
23:55 – is a – is in – it’s plus something else. Right. It’s oftentimes
24:00 – – it’s like we talked about – it’s the body’s natural response to pain and stimuli is to tense up. And so pelvic floor dysfunction
24:09 – then worsens the symptoms. Other things that it could be is nerve issues. So you can have local nerve like too many nerves in the
24:17 – vulvar vestibule. There’s actually something called neuroproliferative vestibulodynia where inflammatory something inflammatory happened.
24:26 – You get an inflammatory response and then that leads to new nerve growth in a, in a tissue that didn’t really necessarily have all
24:34 – these nerves. And so all of a sudden you can just feel your vestibule all the time. Then there’s also something called pudendal neuralgia,
24:41 – which is inflammation of the pudendal nerve, which is the nerve that innervates your, the external genitalia. So, and then you
24:49 – can also have almost what we call genital pelvic dysesthesia, which is sciatica of the pelvis. So sciatica is you have leg pain
24:59 – but it’s not actually coming from your leg. It’s coming from your spine. Very much like you can have sciatica in your legs. You
25:05 – can also have sciatica in your pelvis because it’s all the same nerves. So if you have a back pain and back issues and they can’t
25:14 – figure something out, I always tell people to check the spine because it can very much like you can have pain in your legs.
25:20 – You can also have pain in your genitals that are related to the nerves in your spine. Melissa: How would you differentiate between nerve involvement or
25:29 – a pelvic floor issue? Dr. Maria Uloko: Yeah. So it’s knowing how to do an exam. It’s knowing
25:34 – how to do a comprehensive vulvar exam, which most physicians are leaving, training, not knowing. And I, like I said, I’m one of
25:43 – seven in the world that was trained on how to do this. And there’s – we’ve trained about 300 or so doctors, and we keep training
25:51 – and we keep advocating for more and more. But this is going to need widespread reform. All doctors need to know how to examine
26:00 – this tissue because it matters for your bladder health, your pelvic floor health, your vaginal health, your sexual health. It just
26:09 – matters. And so it’s a – it’s a really a disservice that we’re doing to patients that we are training doctors not to – and their
26:17 – doctors are leaving training without learning this. Yeah. That’s so – that’s – I’m on a mission to train every single doctor around
26:25 – the world. I’m on a mission to train every single person with the vulva how to do their own exams and how to advocate for themselves
26:33 – in the doctor’s office. Melissa: Speaking of clinicians, what type of clinician would be the right one to see for these types of conditions?
26:41 – Dr. Maria Uloko: If you want the level of care that you deserve, you can come see
26:48 – me. So in theory, traditionally it’s a urologist or your gynecologist.
26:55 – But again, like I said, in our current guidelines that exist, we don’t have much structure around how to do a vulva exam. And
27:05 – so that’s the – that’s unfortunately such a big disservice to patients.
27:13 – And that is what VULVAi is wanting to do. We’re trying to mass train physicians on vulvar anatomy and physiology in real time
27:22 – training on site because every doctor should know how to do this, but every doctor is leading training without knowing how to do
27:30 – this. So how do you then fill in the gaps where doctors are failing. And how do you then train an entire generation of physicians in
27:37 – real time? That’s where technology is going to come into play, and that’s what we’re building and working with some really cool
27:43 – institutions to implement this program and and start the process of mass education.
27:50 – Melissa: And what about on the patient side? Is there – are the resources that you have for patients to kind of tackle this on
27:56 – their own until they have a clinician who can help? Dr. Maria Uloko: Yeah. That’s why I’m also working on it. I’m trying
28:01 – to figure that out. We do also have and you know, when I think about the, the urinary system, there are so many things along
28:10 – the pathway that it could be, you know, so if you’re someone that – you should absolutely still go see a urologist. They know, they
28:18 – know the top of the like, they know the top all the way to the bottom. They oftentimes just don’t know the vulvar piece, which
28:25 – is such an important piece. But there’s still so many things that could be outside of the vulva that could cause some urinary tract.
28:32 – So I don’t want them – I don’t want that to deter people from going to see the urologist. I just also want them to understand
28:38 – that their urologist typically doesn’t have the vulvar training but we’re actually, as a group, collectively, we’re way more progressive
28:47 – than a lot of other fields. So I actually see us changing our guidelines, hopefully in the next several years to start doing
28:54 – this. And a lot of the people that have such buy in already are
29:00 – urologists. They’re like, oh, I need to care about this. Oh my gosh. Now there’s new research. Oh now we’re – we adopt technology
29:06 – and we adopt new research much quicker than other specialties. So I have hope. I have a lot of hope. So that. And then two, we
29:17 – vulvar – at VULVAi what we’re trying to do is we’re trying to do two things. We’re trying to teach doctors in real time. And
29:23 – then I want to be able to arm patients with the right information on and how to advocate for yourself. So if you’re – if you go
29:31 – to an institution that doesn’t have VULVAi and hasn’t have their physicians trained on it and utilizing the technology, you don’t
29:40 – have to still suffer. You can still get all the information. I can teach you how to advocate for yourself. Like what we’re trying
29:47 – to do is teach you how to advocate for yourself, how to ask the doctor for, you know, I want this lab work. I want this, you know,
29:56 – imaging study. I looked at my vulva. I actually touched it. And it hurts. You know, I did my own exam, and this is the treatment.
30:04 – And please write for it, you know, and there is actually – there is a conversation. There’s a dance here. And patients don’t understand
30:11 – how powerful that they are. And yeah, you’ll meet some, like,
30:16 – jerk of a doctor, you know, that doesn’t believe you. And that’s unfortunate. I will not. I will not – it sucks, it sucks, it sucks,
30:27 – it sucks. It breaks my heart when that happens. And I hear that. And I know our media is just like, just go find another doctor.
30:33 – But like, it’s hard. It’s really hard. Melissa: It really is. Dr. Maria Uloko: It’s really tough. It’s so demoralizing.
30:40 – And so I want that’s – those experiences, you know, I’ve sat with thousands of patients and I’ve heard their stories of neglect,
30:48 – of misdiagnosis, of essentially malpractice. And I was like, I have to figure out a way to protect these people. Like it just
30:55 – sucks. And I when I think about my experience with healthcare and like growing up without it being a black woman in this, in
31:01 – this, in the healthcare system and knowing the barriers that I face, even with all the privilege and education and resources
31:07 – that I have, I wanted to build something that makes sure that when you are going into the doctor’s office, you’re informed about
31:15 – your body, about the research, about the science that’s out there, because most doctors aren’t staying up to date on that. They’re
31:20 – not doing those things. And it shouldn’t be the patient’s fault that the doctors don’t know. You should still be able to figure
31:28 – these things out because the treatments are, for the most part, if it’s related to just vulvar inflammation, are so straightforward
31:35 – and so easy, but just no one knows to look or check or what to check for or what these conditions are called. So, yeah, we’re
31:43 – going to – we’re going to make sure everyone’s going to get diagnosed fast easier like we gotta – we gotta do better.
31:50 – Melissa: It sounds kind of ideal. And patients do end up feeling quite helpless in these situations because they don’t feel like
31:55 – they should be responsible for navigating their own health in that way. But it really does come down to that. They need to advocate
32:01 – for themselves and to learn as much as they can. Dr. Maria Uloko: Yeah, yeah. And, you know, it’s such an unfortunate
32:08 – system and I – I sit with so many people and I, and I hold space
32:13 – and we cry together. We grieve together. I get to watch their pain and have the privilege to kind of hold them in that space
32:21 – and it – I can’t change the entire system, but I can change how people are
32:30 – interacting with the system. This is like the little piece that I know. This is the hill I’m going to die on that people should
32:37 – not be suffering. People should like a lot of what we’re calling chronic diseases aren’t chronic, they’re just misdiagnosed. And
32:44 – that is why I’m so – I was like hit by – I was hit by a car three days ago, somehow survived at 30mph, and then immediately got
32:52 – back to work because this is the work that I love to do. This is like the ability to teach and train and give people hope back,
32:59 – just with education and knowledge is like it – I feel so aligned
33:04 – in everything that I do, my research, my work, my passion. Like I love this work. It’s tough. It’s challenging. Oh my God. It’s
33:13 – not for the faint of heart, but to be able to give people hope
33:19 – again and like, cure them of diseases that they have been told are incurable, it’s one of the best feelings ever.
33:27 – Melissa: Yeah. And I want to talk a little bit about the impact on quality of life with some of these conditions. Can you share some insights about how they do impact sexual function and just
33:36 – quality of life in general? Dr. Maria Uloko: When people are in the UTI cycle, it is just so
33:46 – debilitating. It fully shuts down every part of their life and
33:52 – to the point that a lot of people just aren’t even functional anymore. You know, it consumes their every waking moment. Like,
34:02 – not only are you suffering of like having that discomfort
34:08 – consistently over and over again, you then don’t have the answers to why it’s happening. You then don’t have the answers to when
34:15 – it’s going to happen again, like they are living in such fear and paralysis and they go to the doctor who they’re supposed to
34:23 – trust, who’s supposed to have all the answers, and they just can’t get answers. And in actuality, their doctor only has a very small
34:32 – toolkit, and the doctor needs a much larger toolkit to actually assess these patients. And that’s why I’m so vocal about this,
34:40 – because so many people start internalizing the medical systems ignorance as I’m broken. Something’s deeply wrong with me. I’ll
34:49 – never get better. And then those are the patients that are then dropped off at my doorstep. And I’m like, oh my God, we have so
34:56 – much to unpack. Like I recently, I just had a patient where it took 2.5 hours just to get all of the history, and that I was
35:05 – like – I haven’t even, I can’t even do an exam like I don’t have, like that’s what I built my practice to be able to give patients
35:13 – time. But 2.5 hours to explain your medical history is just so
35:21 – devastating. Like, you know, so many feelings and so many emotions and it’s so hard to see that when all she really needed was a
35:31 – vulvar exam. Like if she had gone to a doctor that knew, gotten
35:36 – a vulvar exam, started on treatment, she would have been great
35:41 – back there with her life. But because of five years of trial and error and going to doctors that don’t know and all the things,
35:47 – I now have to spend five unpacking all of that, undoing all the trauma related to that and then getting to treatment. And it’s
35:56 – so tough. It’s really, really tough. Yeah. So if I can prevent anyone from going down that spiral that happens that I’ve, I’ve
36:06 – made a big difference. Melissa: Yeah. And patients articulate these compounded issues really well too and someone wrote in a question about having a low libido
36:16 – or an absence of sexual desire, but also bladder symptoms, insecurity, anxiety about UTIs, hormonal changes affecting physical comfort
36:23 – and pain during sex, and asked whether with all these issues put together, it is possible to move forward and whether you’ve had
36:30 – patients who’ve been in a situation like that and got to a point where they actually enjoyed sex again.
36:36 – Dr. Maria Uloko: Yeah, so many times. So many times. That’s actually like my bread and butter is post-sex UTIs. It’s not a thing. It
36:48 – is – it’s absolutely not a thing. And who does research matters,
36:55 – you know, a lot of the old researchers and a lot of the who teaches us are old men without vulvas. And so, of course, and then also
37:05 – culture in society and in Western society, female sexuality is
37:10 – considered unclean and like gross. And so it then translates to, well, you’re getting UTIs after sex. Of course, that’s gross.
37:18 – That’s disgusting. And like, yeah, I want to tell people unless someone is pooping into your vagina, the vagina is meant for wear
37:25 – and tear. It has a whole ecosystem that is like it is one of the most resilient structures ever. And the fact that we have gaslit
37:32 – an entire generation of people with vulvas to believe that having
37:37 – sex is going to lead to infection every time is –
37:44 – it’s a symptom of the patriarchy. Like that’s what it is. So instead of actually going into the science, they just said, ah, you know,
37:49 – you’re just a lady. You shouldn’t be having sex and enjoying yourself, right? Like I have like essentially post-coital, post-sex UTIs
37:59 – are not a real thing. They should not – we should not be accepting that as
38:06 – a diagnosis. It’s not. It’s oftentimes the hormonal inflammation. It’s oftentimes pelvic floor dysfunction. There’s oftentimes so
38:13 – many other things. And yeah, once in a while you can get a UTI after sex all the – like totally fine. But if you’re having sex
38:20 – and every time you’re having sex, you’re getting a UTI or it’s happening more than twice a year, please reach out like it’s not
38:30 – normal, but. Melissa: Can you talk about some of the ways you would approach that? Because there are a lot of people in this community who
38:35 – do have that experience. That’s why they’re afraid to have sex because they have this problem. And then you mentioned earlier
38:41 – about people not being able to get pregnant because they can’t have sex. That also happens a lot in our community. So any kind
38:47 – of approaches that you can talk about would be helpful. Dr. Maria Uloko: Yeah. So,
38:53 – I’m going to tell an anecdote that is so powerful for me. I – there was an ob-gyn resident that booked
39:02 – an emergent appointment with me on a weekend. And, you know, she
39:07 – told me she’s an ob-gyn. She is a gynecologist. You’d think they
39:13 – would know this stuff? But this is why this is really important. So she newly married, never had sex prior to marriage. And then
39:24 – for the first year and a half, could never have sex. Every attempt would lead to a UTI. And so unable to, you know, have that shared
39:36 – intimacy with her partner, unable to fulfill the dream that she had of wanting to be a mother. Also missing work. She’s a resident
39:43 – living there. I mean, if you’ve ever met an ob-gyn resident, they’re delivering nine babies at a time somehow. And you’re like, how
39:49 – is this possible? They’re constantly working and she’s now suffering. She’s trying to take care of other people and can’t even take
39:56 – care of herself. And so, you know, just in this and it was a virtual
40:01 – consultation and in that conversation, I just was like, have you taken OCPs? Like I almost to the point, like I can already, like,
40:09 – ask this question, have you taken OCPs? She goes through her whole history and obviously I’m listening, and I’m sitting and I’m holding
40:17 – space, but I just always am, like, have you taken OCPs? And she said, ah, yeah, I took it for three months. And then I was like,
40:24 – okay, I know exactly what you have. So a lot of post-sex UTIs
40:29 – are actually because of vulvar vestibular inflammation. So again the vestibule is the,
40:37 – is bladder tissue on the outside of the body. The vestibule is also the entrance into the vagina. So for a lot of people oral
40:44 – contraception, menopause, anything that’s going to change your hormones and going to disrupt your testosterone is then going
40:51 – to cause chronic inflammation. So think about it like you are actively sitting on sunburned skin. For some people, that sunburn
41:00 – is so severe that even just sitting on it is painful. For some people, that sunburn is mild and they don’t necessarily notice
41:09 – it. And also the the hilarious thing about treating the different
41:15 – sexes is that pain tolerance is crazy between the two sexes, like
41:20 – people with vulvas are like they’re rating their pain at like a ten and they’re like, yeah, no, I’m totally fine. I was like, no, you shouldn’t be suffering. That’s like, and you know, I’ll
41:29 – have you know, my penile patients are like, I’m at a two and I’m dying. I’m like very different pain tolerances are it’s very fascinating.
41:40 – That’s why I love being able to treat all of the spectrum, because I get to actually see how culture and society and all these things
41:46 – impact. How people present in my office. And so, you know, so
41:53 – many people will just, like, accept that. Yeah. You know, it’s like a little itchy in all the things all the time, but it’s not
41:58 – that big of a deal. And then when you have sex, penetrative sex, or any sort of friction to the tissue, you’re now actively touching
42:05 – a sunburn. So depending on the degree of the sunburn, like if you had a very severe sunburn, a.k.a. severe inflammation, it’s
42:14 – going to feel like you can’t even get to have sex. Like it’s like, I know, absolutely not. That’s what that patient particularly
42:20 – was feeling. For some people like I had sex and then immediately started burning, like, and now I have a UTI. Again, this is the
42:29 – disconnect. And like how society and science actually go are polar opposites when it comes to women’s health. We know that for an
42:36 – infection to take place, it takes at least 48 hours for an incubation, like 48 to 72 hours. So many people, when they have post-sex UTIs,
42:46 – immediately get symptoms. That’s not an infection. But do you see like we know that. We know on a health care system that you
42:55 – get a bacteria like a, you know, some like baby sneezes in your nose. You’re not immediately going to like get a cold right then
43:04 – and there. Yeah, it’s going to take a couple of days. And yet because people chose to not like apply science to women’s sexual
43:13 – health, we just are like, of course you got a UTI immediately after sex ten minutes, you know, like so that’s the other thing
43:21 – is that, you know, if you’re getting symptoms immediately after, it’s not a UTI. It’s just not. It’s just like, so what could it
43:30 – be? Oftentimes it’s that hormonal vestibular – hormonally mediated vestibulodynia. It’s also a combination of pelvic floor dysfunction.
43:38 – Because now I have an active sunburn. Now that sunburn is triggered,
43:43 – it can either feel like pain with sex or it can feel like lower urinary tract symptoms that mimic UTIs. And then my pelvic floor
43:50 – is going to tense up because I’m in pain, and then it’s going to worsen your symptoms. And so a lot of people also report lower
43:58 – abdominal cramping. When you have lower abdominal cramping, that’s actually pelvic floor dysfunction. That’s your pelvic muscles
44:04 – tightening up. And it’s actually pulling on your – the sheath of the muscle. So do you see how there’s so much symptom overlap?
44:11 – And so because there’s so much symptom overlap You have to have a wide toolkit to actually rule things in and rule things out.
44:18 – But most doctors just have infection or no infection and I was
44:23 – able to develop a well, it could be this, it could be that, it could be this, it could be that let’s work, let’s work through
44:29 – it and actually figure out what’s going on. Melissa: Yeah, I think that’s much more important for a lot of people who do have pain and they don’t know where it’s coming from. They’ve
44:37 – had many different diagnoses often. And if it was caused by taking oral contraception, is the solution just to stop that or do you
44:45 – actually need to do further treatment? Dr. Maria Uloko: Yeah. So, great question. So it all depends on
44:54 – the severity. For some people it’s so mild that like that inflammation state is so mild that they stopped the OCPs and then their body
45:04 – does it’s – their body just heals itself. The body is the – human body is miraculous. It can do a lot of things. So I – it’s not
45:11 – uncommon when even just at like a grocery store, if I tell people what I do, they’re like, I had chronic vaginal infections for
45:17 – years, and then I stopped my OCPs and then it’s fine, you know, like, and I’m like, oh. And then we talk about the science and
45:24 – then it’s – then we laugh and then I say thank you, and then I go home. But uh, so if that’s – if it’s pretty low severity in
45:32 – terms of the inflammation and you just stop it. Yeah. Great. Amazing for some people. But for most people the inflammation is moderate
45:41 – to severe enough that even if they stop the OCPs, it won’t reverse the inflammation. Like your body can’t necessarily heal it. And
45:48 – that’s – and that’s the also the beauty of it is that we then just give you a topical medication that replenishes the hormones
45:58 – to the tissue and heals the tissue, I call it, I say I have an analogy and I hate it, and I’m going to get a better one one day,
46:06 – but it makes the most sense. Your vulva is a garden. Your garden needs sunlight, nutrients, and water to stay healthy a.k.a. your
46:14 – vulva needs hormones, estrogen, progesterone and you know all the things to stay healthy when you are being stripped, particularly
46:23 – of the testosterone because you can also get this with estrogen. Essentially, it’s all about balance. You can have this with estrogen. You can have this with testosterone. We just see it way more with
46:30 – testosterone because the medications that we’re giving tend to have more anti testosterone side effects. And so if you just give
46:42 – the garden exactly what it needs, that garden will come right back. We’ll come right back to life and we’ll become like healthy.
46:50 – The vulva is one of the coolest structures ever. It has such regenerative properties that no other tissue I’ve ever seen has. Even in like
46:59 – if I were to start, if you were seven years old and your vulva actually started to shrink and go through these chronic inflammation
47:06 – changes, if I start you on low dose vaginal hormones, your vulva will spring right back to life. Like that doesn’t happen in any
47:15 – other tissue structure. Like, there’s so much research that is so ripe and it’s so exciting in the vulva. And because of medical
47:24 – sexism and society and culture, the entire community has just
47:30 – forgotten that it exists. And it has science behind it, and it has really cool science behind it. And it really matters for your
47:38 – bladder health, too. Melissa: Are there non-hormonal approaches you can use in that kind of situation.
47:44 – Dr. Maria Uloko: Okay. So no. Not that, not that – because
47:54 – I think hormones get a bad rap, right? They get such a bad rap. People are so scared of hormones and yet our bodies are naturally
48:02 – producing hormones at all times. Our bodies are constantly, like,
48:07 – flooded with hormones. That is what keeps us youthful. That is what keeps our cells active. That is what keeps our body moving.
48:14 – And because again, society and culture have villainized hormones
48:21 – like in men, hormones are celebrated and women hormones are villainized. It’s such an interesting like sociological study of – and yet
48:32 – hormones are this – the key to sustaining the garden. Right. And
48:37 – so hormones not only keep the tissue healthy, but it also keeps our ecosystem healthy. So our flora is a actual response of –
48:50 – our vaginal flora is an actual response of our hormonal status. When we lose our hormones and – or change our hormones or alter
48:58 – our hormones, it changes our microbiome, which then predisposes us to infection. So I really, really want people to stop being
49:09 – afraid of hormones. Like low dose vaginal hormones. We actually even give it to people with active cancers, breast cancers, all
49:16 – the things to help them with their vaginal symptoms. So, yeah,
49:23 – I really do think that hormones are truly the key to a lot of
49:29 – the reversal. Is there, like, moisturizers? Like topical agents?
49:35 – Yes. Over the counter? Yes. But that’s more fixing a symptom of
49:40 – an issue than actually getting down to the root cause of the issue. And especially, why not get down to the root cause of the issue
49:47 – when there are cheap, safe? So many studies have shown that it is safe ways to actually solve the problem. So yeah, I want to
49:56 – de-villainize hormones for people and also with low dose vaginal
50:01 – hormones it actually doesn’t – it doesn’t actually change your bloodstream levels. So it’s just – it’s such a low concentration
50:09 – that all it does is it works in the garden. So that’s why I go back to the garden analogy. If you water your garden you’re not
50:14 – worried about flooding your house. So it’s again just acting very locally to the tissue.
50:20 – Melissa: I think some people are not afraid of trying hormones, but have had experiences where they’ve been sensitive to it. So
50:26 – it’s caused like vaginal estrogen has caused irritation or pain is do you think that’s the estrogen itself or something else in
50:32 – the topical application? Dr. Maria Uloko: It’s the – it’s the base that it’s in. That’s usually
50:38 – – that’s actually always the case. And I actually, I do – I very
50:45 – much compound my own vaginal hormones. I don’t do compounded systemic hormones, but I do compound my vaginal hormones just because,
50:53 – like, I have super sensitive skin, I could not use any of the commercially available products. So, like, why would I subject
51:01 – my patients to that? You know, you already have chronic inflammation. I’m going to make sure that the medication I’m going to give you
51:07 – is it’s hypoallergenic as possible. So I always ask patients like, what has worked for you. What base like, can you do coconut oil?
51:15 – You can you do, like, olive oil, even oil. There’s so many things that you can compound things in. So oftentimes if you’re having
51:21 – reactions to a commercially available vaginal estrogen, and I
51:27 – rarely ever prescribe vaginal estrogen. I prescribe a compounded estrogen and testosterone cream. I always, always do estrogen
51:36 – or testosterone, as well because it’s a huge part of the equation. So, but even
51:45 – just with vaginal estrogen, I will make a plug. It’s – it also saves lives. So vaginal estrogen is the – the current guideline.
51:54 – It’s in there. It’s out there. Vaginal DHEA is also in the guidelines too. And that’s – that’s I think it’s a better product. It’s –
52:03 – vaginal DHEA is converted to estrogen and testosterone in the vaginal canal. I think that’s the optimal product. But if you’re
52:13 – weary or your doctor’s weary or not comfortable with vaginal DHEA, any sort of hormone is better than no hormone. So if in a perfect
52:22 – world, you’d get a combination of estrogen and testosterone. But if you’re in the world and your doctor’s like, I’m not ready,
52:30 – I don’t feel comfortable or I, you know, any hormone is better than no hormones. And if you’re not getting better on vaginal
52:36 – estrogen, then switch over to vaginal DHEA or a compounded estradiol and testosterone cream.
52:43 – Melissa: Okay, great. Well, this has all been incredibly insightful. And two quick questions for the end. If there are clinicians watching
52:48 – this who’d like to learn from you. Is that possible? And if there are patients who’d like to schedule an appointment, how can they
52:54 – go about that? Dr. Maria Uloko: Yeah. So if there are clinicians that want to learn, I built a whole health tech company called VULVAi on how to train
53:02 – yourself and how to teach yourself how to, you know, how to increase your toolbox in your toolkit on being a better diagnostician.
53:12 – And being able to support people experiencing vulvar vaginal conditions, whether it’s chronic pelvic pain, recurring UTIs, chronic vaginal
53:19 – infections and also – we also run the gamut of female sexual dysfunction and menopause. So essentially we’re filling in the gaps where
53:28 – women’s health and vulvar health have failed the curriculum. So yeah, please reach out on vulvai.co.
53:37 – So, www.vulvai.co. We’re currently piloting at different institutions. If you want
53:44 – to bring us in, we’d love to work with you. And then from a patient standpoint, also
53:52 – sign up for the waiting list for VULVAi. We’re going to be making patient facing things. If you – it’s going to be in the next year.
53:59 – We’re working on getting funding. So, also, if anyone wants to fund the revolution in women’s health, reach out to me directly.
54:07 – We are also always looking for funding in order to get this research
54:12 – disseminated, get this care disseminated, it’s really, really, really important. And then if you want to actually work with me,
54:18 – I have – I do if you’re in the state of California, you can actually see me in my clinic in LA directly. And you can
54:29 – find that on my website at mariaulokomd.com. But if you are outside of the state of California, I also have
54:36 – virtual educational consultations where I teach you about – I
54:42 – hear your story. I come up with a little plan. I talk to you about, you know, okay, like, diagnostically, this is what are the things
54:49 – that I would recommend asking for. And we kind of coach you on how to advocate for yourself in the doctor’s office, how to get
54:55 – that diagnosis because it’s – I’m a big believer that a lot of
55:02 – what we’re calling chronic diseases aren’t chronic. They’re just misdiagnosed. And so to be able to give you that framework of
55:09 – how much faster than waiting for our app to fully get out in the
55:15 – world, please reach out and sign up for and you can find all of that on my website.
55:21 – Melissa: That’s great. We’ll also add the link to the video description so people can find it more easily. Thank you so much again for
55:27 – joining me and answering all our questions. Dr. Maria Uloko: Of course. Melissa: Thanks so much for watching. I hope you found this expert
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