In Good Health: Chronic Pelvic Pain In Women

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0:31Imagine you go to the gynecologist for your annual pap smear, and you feel excruciating pain when the doctor inserts the speculum. Or imagine that other parts of your life many people take for granted, like penetrative sex with a partner, become impossible because of the extreme pain that comes with it. Now imagine seeing several doctors trying to figure out what's wrong. They all tell you everything looks fine. Years go by without answers, but the pain doesn't go away. Some of you don't have to imagine it because you've lived it. I started experiencing severe tailbone pain following a back surgery.

1:11I was in physical therapy, and this tailbone pain kept getting worse and worse. Fortunately, my physical therapist was familiar with pelvic floor disorders and referred me to someone. I had an assessment done, and I have a hypertonic floor or an overactive pelvic floor. They liken it to people who have tinned shoulders or clenched their jaws. I've been dealing with this for about a year. It does cause intercourse, pain, using the restroom. As well as just generally, it's uncomfortable to sit for long periods of time. It's uncomfortable to stand for long periods of time. I work in health care, and when I thought of pelvic floor dysfunction, I thought of women who'd had multiple children or older women who struggled with incontinence.

1:53Claire, thanks for that message. One in three women will experience a pelvic floor disorder at some point in their life, And one in four people with vulvas will develop a vulvovaginal disorder. Yet despite how common pain down there is, 60 % of people with these conditions consult three or more doctors before ever receiving a proper diagnosis. And it's a process that can take up to 12 years. That's according to the National Vulvodynia Foundation. I'm Jen White. You're listening to the 1A Podcast. For today's installment of our series, In Good Health, we're discussing vulvar and pelvic pain and why we don't talk about that pain enough.

2:31That's just after this short break. Stay with us.

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4:01Why is that? Listen on the NPR app or wherever you get your podcasts. Welcome back to the 1A podcast. For the latest installment of our series, In Good Health, we're talking vulvar and pelvic pain. Joining us in studio is Dr. Sarah Cigna. She's an assistant professor of obstetrics and gynecology at George Washington Medical Faculty Associates. She's also the director of their Sexual Health and Gender Affirmation Center. Dr. Cigna, it's great to have you. Thank you so much for having me on. Also with us in studio is Camille Espinoza. She's a licensed psychotherapist and certified sex therapist.

4:35She's also the founder of the Center for Intimacy and Relationships. Camille, welcome. Thank you so much for having me. And Dr. Maria Uloko. She's a urologist who specializes in the treatment of female sexual dysfunction and female sexual pain. She's also the founder of MUMD Sexual Medicine Beverly Hills, a private medical practice. Dr. Uloco, welcome to the program. Thank you so much for having me. And just a reminder that while we are hearing from medical professionals today, you should always consult your doctor for individual medical advice. So Dr. Signal, let's just start with a definition, vulvovaginal disorder.

5:10What are they? What conditions fall under that umbrella? So since we're focusing on pain, and I'll start there. Vulva vaginal pain disorders can kind of fall under a couple different umbrellas, one being hormonal issues, others being muscular issues, nerve issues, or even inflammatory conditions. The problem is many of these conditions are lumped together under a term vulvodynia, which just means pain of the vulva. And when we don't think about the etiology, we miss the diagnosis and therefore an effective treatment. We'll talk a little bit more about why these conditions take so long to diagnose, but how are vulvovaginal disorders commonly diagnosed?

5:49So the most effective way to diagnose them is to do something called a Q-tip test. It is a very specific sensation mapping test that is very easy to do. All you need is a moistened cotton swab and a mirror for the patient to see exactly what's going on during the exam. And we basically figure out what actually is hurting. And then that coupled with the history that the patient gives you about what things they've experienced in the past, when their symptoms are worse or better. You map those things together and figure out exactly what's going on. So that makes me wonder if part of people's experience is sometimes referred pain, that you may not experience the pain exactly where it's originating.

6:29Correct. Many times patients will experience pain as being on the skin. That's one of the most common ways that folks present to me. But oftentimes it's actually deeper underneath in the muscles or in the nerves. And that can be from a past injury. It could be from a birth in the past. It could be just from holding tension in your pelvis. So there's many different things that can lead to this. Dr. Oloko, what about pelvic floor disorders? What conditions fall under that umbrella? Yeah, so in terms of pelvic floor disorders, I kind of break them down into two categories. of hypertonic pelvic floor disorders, meaning that my pelvic muscles are too tight, or hypotonic pelvic floor disorders, meaning that my muscles are not as strong as they used to be.

7:13And we think about our pelvic floor, it is essentially a thick sheet of different various muscles, almost like a hammock supporting all of our internal and pelvic organs. And just like all other muscles of our bodies, we can have muscle tension where our muscles are really sore and tight, and that can present as either pain with sex or pain with movement, pain with walking, or either urinary or bowel complaints, meaning urinary frequency, urgency, I got to go, I got to go, difficulty with urination or difficulty with constipation and having bowel movements versus hypotonic where the muscles are not as strong as they used to be can also present, and that can also feel like pressure in the pelvis.

7:57And when our muscles are too loose, our organs can actually start to what we call prolapse out of the vagina, out of the body. And so we can have urinary issues, we can have bowel issues as well, and then also sexual discomfort as well. Where vaginal or vulvar pain during intercourse is incredibly common, Camille, up to 75 % of women will experience pain during penetrative sex at some point in their lives. That's according to the American College of obstetricians and gynecologists. Sometimes pain during intercourse isn't alarming, but when should we be concerned? That's a good question. In general, whenever pain during sex is unwanted and unintended, that's generally when it should be alarming and when you should probably seek help.

8:40Sex is meant to be pleasurable. So if there's any type of pain, especially if that pain is not resolved, I would say after one or two times, it's usually a good time to go see your doctor. I think that we are told sometimes, particularly as women, that sometimes we should tolerate pain or discomfort, when in fact that's really not true. Beyond pain with penetration, Dr. Cigna, what other symptoms might someone living with a vulval vaginal disorder experience? Many patients will also experience sensations of itching, irritation, throbbing, soreness, difficulty with sitting for long periods of time, and like Dr.

9:19Oloko said, trouble with urination, bowel movements being painful, and sometimes they'll even notice skin changes. So there may be a skin disorder that's causing some of these symptoms as well. Well, some of those symptoms, Dr. Oloko, mimic urinary tract infections, and sometimes recurring UTIs can cause or worsen vulvar pain. So what's the connection between bladder and urinary infections and vulval vaginal disorders? That's an excellent question. And I think one that most doctors don't know because it's actually newer science. So there are vulvas, a portion of our vulva called the vestibule is actually the same structure as the bladder.

9:59It has the same type of skin cells and cells as the bladder. So we actually have bladder tissue on the outside of the body. So for many people, we actually have never seen our vulvas. We've never looked. We've never checked. And what many people conceptualize or think is their vagina is actually their vestibule. Vestibule literally means entrance into the temple or entrance into the vagina. And so this tissue structure is actually vastly different from the vagina, and it's different from the rest of the surrounding skin because it mimics, it's very similar in biology to bladder tissue. And so for many people, 90 % of people that have vulvodynia, the place that they will localize it most to is actually the vestibule, vestibulodynia.

10:44And so one of the causes of vestibulodynia can be either a hormonal issue or a nerve issue. There are too many nerves or there are not enough hormones, particularly estrogen and testosterone. Testosterone is a very, very important hormone to the vestibule and maintaining the vestibular health. Now, Now, when we don't have the normal or appropriate amount of hormones, our vestibule then becomes chronically inflamed. We get to go through a chronic inflammation process that mimics the UTI symptoms because the UTI is inflammation of bladder tissue caused by bacteria. And then vestibulodynia, the hormonally caused one, is inflammation of bladder tissue or the vestibule tissue caused by the loss of hormones and particularly testosterone because we oftentimes forget that testosterone is a very important hormone for our vestibular health.

11:37And so the other thing too is that if we don't have the appropriate hormones on board, it can also change our microbiome. Our vagina and our vulvas are colonized with good healthy bacteria and those are maintained by healthy hormones to the tissue. When we stop producing hyalurones, whether that's naturally via menopause or with medications, many medications can stop how our body's able to naturally use the hormones that we produce. What that does is that changes the microbiome. So not only do we have chronic inflammation from the loss of hormones, we now are more susceptible to bacterial infections because our microbiome, our natural defenses are gone.

12:18And really briefly, Dr. Signa, so we have a clear understanding, can you give us a quick anatomy lesson? Where is the vestibule located? Sure. So looking at the external vulva, you'll see the labia majora, the labia minora, but when you spread those smaller lips, the labia minora, you'll see some shiny pink tissue. No matter what your skin tone is on the outside, that tissue in the vestibule will be shiny and pink if it's healthy. If it's not healthy, it might look red or even very pale, and that tissue is what Dr. Loco is referring to. Don't forget, right above that, the clitoris, a very important organ and another common place for pain to occur.

12:55We have to take a quick break, but when we come back, more from you and our guests. Stay with us.

13:04Support for NPR and the following message come from HomeServe. It never happens at a good time. The pipe bursts at midnight. The heater quits on the coldest night. Good thing HomeServe's hotline is available 24-7. Call to schedule a repair and a local pro will be on their way. Trusted by millions. For plans starting at$4.99 a month, go to homeserve.com. Not available everywhere. Most plans range between$4.99 to$11.99 a month your first year. Terms apply on covered repairs. Nearly half of the people who work for Border Patrol across the country are Latinos, a fact that confounds a lot of critics of immigration agencies like ICE.

13:47Why is it so hard to accept that Latinos who joined the Border Patrol truly believe in its mission? Listen to NPR's Code Switch podcast in the NPR app or wherever you get your podcasts. Let's get back into our conversation. We're discussing vulvar and pelvic pain for today's installment of our series, In Good Health. Here's a message we got from one of you. I am 71 years old and I have had a cistaceal and a rectocele. I had a cistaceal first, had surgery for it, and then that developed into a rectocele, had surgery for that, and now I have another rectocele. So it's been kind of a frustrating pattern.

14:24I just do not have the pelvic pain you were talking about, but I had a lot of urgency and frequency and a little bit of incontinence, and that was really bad. And my doctor just diagnosed it and took it from there. Thanks for that message. Camille, we heard frustration there in both the, oh gosh, the symptoms this listener is going through. When you talk to patients, what do they tell you, not just about the pain or the symptoms, but the effect on their emotional and mental health? That's a good question. I sometimes feel like the mental health aspect gets overlooked, so I'm really glad that we're able to focus on that a little bit today.

15:01So we at the Center for Intimacy and Relationships see this type of thing very often. We see people come in sometimes with their partners talking about the pain, talking about the diagnosis. We see a lot of things kind of in common. So the things that I see most often are fear, anguish, anxiety. There's often a lot of self-blame as well. Some people feel like I should have done something differently or I should be able to manage this on my own. One thing I've noticed, though, about the people who are going through this is they tend to handle it differently based on their history and based on the resources available to them.

15:36So, for example, folks who've had a lot of negative messages about sex and sexuality throughout their life may struggle a little bit more. Those who have a lot of resources, like a good medical team or a supportive partner, may do a little bit better. I've also noticed some other trends based on demographics. So I've noticed that clients who come in who are people of color tend to have extra barriers in the medical system, and that can cause additional frustrations and additional anxiety. I've also noticed for folks that are trans or non-binary, we do know that vulvovaginal disorders affect everyone who can have a vulva or a vagina, regardless of gender identity.

16:13So folks who come in who are trans or non-binary with this type of pain experience an additional level of psychological, I would say, anxiety. Because often there's a different type of relationship to the body and also a different type of relationship to the medical system. Well, that echoes this message we got from Gray who writes, I'm a trans man of color and one of the things I've struggled with since I've been on hormones for nearly six years is atrophy. When I first started, I wasn't warned about the possibility of atrophy or even the symptoms. I had convinced myself I had some incurable disease when I finally went into the ER with severe pain, and they told me there was nothing wrong with me.

16:47I had gone into my primary care provider seven times before my visit to the ER. I was ignored each time I expressed pain and concern. I eventually refused to accept that I was fine, and thankfully, a doctor finally listened to my symptoms. I was finally given the official diagnosis of atrophy. It pains me to know how little trans men, those on hormone replacement therapy, are unaware of atrophy and how simple of a treatment it requires. So Gray writes about his experience as a trans man, but also notes hormone replacement therapy. Dr. Signet, if you're on some sort of HRT, could there be symptoms that arise as a result?

17:27So particularly in the case of having any kind of transgender care where you're taking hormones that are altering your physiology, you can cause sometimes some unintended changes in other parts of the body. So, for example, for transmasculine patients who are on testosterone, it can cause less of the hormones that are supposed to be acting in the vestibule to be as active as they should be. And so we treat it with other hormones that they may not be getting enough of in that area, which is commonly very helpful, but definitely not treated common enough. Well, people living with a vulvoginal disorder can see upwards of 15 doctors before receiving a diagnosis.

18:0915. and the process can take as long as 12 years. Why does it take so long, Dr. Cicna? Well, a big part of this is the lack of education in these topics. You know, when I was going through medical school, I learned about sex, but I didn't learn about these conditions. I went through residency, found a mentor, apprenticed with him, and then eventually realized I needed to create a path for other people to follow, Particularly for OBGYNs, there is not as much focus in clitoral pain or pain with sex as you might think there should be. And so those of us at our team, Dr. Michelin-Enny is one of my partners, we are actually working to change the educational system and make this better for people.

18:55Marvin emails, if we're being honest with ourselves as a society, the main reason women's issues go unaddressed is because of the longstanding and deep-seated objectification. We need to approach it from a culture-wide angle, and nothing will change until there is a majority of the people in charge who actually care about all people equally. Dr. Oloko, what are your thoughts about what Marvin says there? Yeah, you know, I have a really unique aspect of this or perspective in this in terms of treating all genders as a urologist that then further specialized in comprehensive sexual health. And just objectively, that is correct.

19:32There is a huge discrepancy in the access to care based off of your genitalia. And I can say this because I have a men's health clinic and a women's health clinic. And when I was in academia, it was just night and day in terms of access to resources, to funding, to research, to clinical acumen. And these aren't just felt experiences. The data also shows this. You know, women weren't even allowed into research until the early 90s. And they've since done analyses. And the amount of women that are enrolled in research is not even remotely the same. And in terms of compensation structure, I, as a urologist, you know, would get better compensation when I do surgeries on penises versus when I do surgeries on vulvas, even though they are technically more complex.

20:27A vulva is more complex than a penis. And yet because the healthcare system literally says it is not as valuable as men's health, we are really seeing the economic impact. And then unfortunately, the only people that really, really notice it is the patients. Because the patients are the ones that are ultimately going to be the ones suffering at the very end of this. So there is deep systemic inequalities in healthcare. And your genitalia directly impacts the level and the type of healthcare that you get. Well, Dr. Signe, at the same time, when we're talking about obstetrics and gynecology, it seems bizarre to me that more people specializing in obstetrics and gynecology aren't trained to diagnose vulvovaginal disorders.

21:16It seems like that would be part of the work. So why isn't it? I think I have to say the quiet part out loud here. And Dr. Uloko alluded to this with what she was saying about the money. The money is not in the vulva vaginal medicine. That is not what makes money for institutions. What makes money is having babies, doing big surgeries, and these complex, nuanced care systems that we need for vulva vaginal pain disorders that require a lot of conversation, trust between patient and clinician, time to figure things out in a stepwise fashion, are not financially gains for the system. And so it is not as valued in every other part of the system.

22:01Camille, many of your patients come to you after they've seen several doctors and still got no answers about why they're in pain. What do you tell them once they get diagnosed? Because I would imagine in one way there is this moment of relief, right? I know what it is, but then it's like, wait, now I know what it is. Is this permanent? Is there any way to fix it? How do you help them navigate the diagnosis itself? That's a good question. So in my office, I've noticed that people go through three distinct progressive stages of the psychological impact of a diagnosis. The first stage is the initial emotions, right?

22:41It's fear, it's anger, it's sadness, it's anxiety, it's depression. It can, in fact, be PTSD symptoms. That's the first stage. The second stage is what I call the sexual shutdown. So very often people will think, well, if I can't use this one part of my body, then all of my sexuality is to be shut down. So you get a lot of withdrawal. You get a lot of sadness. You get maybe internal numbness. You get also a lot of loneliness, right? And then from there you progress to stage three. if the person has a partner, a long-term partner, it then turns into a relationship communication breakdown, right?

23:20Because the partner will think, I don't know what to do. I don't know how to talk about it. And then the couple will come into my office really without even the words, what to say. And what's interesting is during these situations, there's often still opportunity for some type of sexual pleasure and sexual touch and desire, but that part has just been shut down. They don't know what to do. They don't know how to talk about it. So in our office, that's what we do. We teach people, we teach couples one at a time how to talk about it, what to do. We also do this in tandem with medical care so that if the pain is able to be resolved, we can relearn how to enjoy bodies and sexual touch.

23:56You've lived with pelvic pain yourself. It took you decades to finally get a diagnosis of adenomyosis. Yes. It's a condition where the tissue that lines the uterus grows into the muscle wall of the uterus. And it's interesting because we launched In Good Health with my story of a long-delayed diagnosis of adenomyosis as well. That's how this series started. But how has your personal story informed the way you approach your work with your patients? Yes. Well, in my case, I was diagnosed with adenomyosis eight years ago, which, as you know, causes a lot of pelvic pain. I, too, suffered from years and years and years of misdiagnosis, being minimized in the system, being told just to take a Tylenol, being told just to live with it, you know, over and over again.

24:45I, too, experienced the relief of a final diagnosis, finally having it, followed immediately by the anger. Why did it take so long to get a diagnosis for something that is relatively common, right? And so I bring that empathy, that knowledge, that energy to the therapy room. I really try to encourage my clients to advocate for themselves, and I also try my best to empathize and listen to the story. Although everyone who comes in has something in common, they also have something unique, and I think that story does need to be heard, and that's what we focus on in sex therapy. We're speaking to Camille Espinoza.

25:23She's a certified sex therapist. Also with us, urologist Dr. Maria Uloco and OBGYN Dr. Sarah Sigma. We're Also hearing from lots of you, Maria writes, thank you for your show on vulvar pain. I want to point out the people assigned female at birth who have endometriosis, a whole body inflammatory condition that can be the reason behind a whole range of pelvic pain issues. It takes 10 plus years to diagnose and is so often missed as an explanation for long lasting pain, which to me is simply unacceptable from the medical establishment, especially for such a wildly common disease. I wrote a musical about this disease, which is heading to the Edinburgh Fringe Festival this summer.