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When Intimacy Hurts: Navigating Solutions for Chronic Vulvar Pain | Dr Jill Krapf


When Intimacy Hurts: Navigating Solutions for Chronic Vulvar Pain with Dr. Jill Krapf

Episode Summary

In this enlightening episode of the Fempower Health Podcast, host Georgie Kovacs sits down with Dr. Jill Krapf to discuss the complexities of vulvodynia, a condition affecting millions of women worldwide. Dr. Krapf explains the various aspects of vulvar pain, offering deep insights into its causes, symptoms, and possible treatments. Learn as she sheds light on a topic that’s often covered in mystery and misdiagnosis and empowers women with knowledge on how to address this condition.



Did you know you can also watch it on YouTube?


Key Takeaways

  • What is vulvodynia, how common is it, and how to raise awareness among patients and healthcare providers

  • Challenges in diagnosing vulvodynia and stories of women who visit multiple healthcare providers without receiving proper care

  • Vulvodynia treatment and management options such as hormonal, physical, and nerve-related therapies

  • The importance of improving women’s outcomes through education about sexual health symptoms, intimacy concerns, and vulva pain 

  • Ways to encourage dialogue between patients and healthcare professionals

  • How to access vulvodynia specialists and other experts for individualized treatment 

  • Ways to make the most of available healthcare resources and develop a vulvodynia self-care plan


“When a woman comes to me and she says, 'I have burning, irritation, rawness, discomfort in this area, mainly with insertion, with intimacy, with sex,' but also, she may have discomfort at other times too—maybe inserting a tampon is uncomfortable, or maybe it's completely unprovoked, meaning you don't even have to touch the area, but just wearing tight clothing or simply sitting can be painful. These symptoms indicate a complexity that requires a thorough examination and personalized approach to treatment.” - Dr. Jill Krapf

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Guest Bio

Dr. Jill Krapf is a board-certified Obstetrician Gynecologist specializing in female sexual pain disorders at The Center for Vulvovaginal Disorders in Washington, D.C and Florida.   She is a Clinical Assistant Professor in the Department of Obstetrics and Gynecology at The George Washington University. Dr. Krapf is active in research and has published chapters and peer-reviewed articles on vulvodynia and vulvar lichen sclerosus.  She is Associate Editor for the medical journal Sexual Medicine, as well as for the textbook Female Sexual Pain Disorders, 2nd Edition.  She is a Fellow of the International Society for the Study of Women’s Sexual Health (ISSWSH), serving on the Education Committee and the Social Media Committee.  She shares educational content on her Instagram page @jillkrapfmd.


Disclaimer 

The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor.  Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.


Transcript


What is vulvodynia?

Vulvodynia basically translates into vulvar pain and it's fairly common. If we look at the statistics that are out there, we know that up to 20% of women between the ages of 18 to 40 have had chronic vulvar pain at one point in their lives. And by chronic, I mean a three month stint of vulvar pain or longer, and that translates to 14 million women in the United States alone. So this is not an uncommon thing. The sad thing about it is that about half of those women will seek care for the pain that they have, which is incredibly low.


We only start to see patients start to seek care if it starts to affect their relationship. A lot of women will just avoid intimacy altogether is what we see.


Additionally, for women who do seek care, 60% of them saw three or more doctors for their condition and out of those women, about half of them did not even receive a diagnosis. This just highlights the issue at hand, when we're talking about vulvar pain on the part of providers and then an access to care and education for patients.


Can you define vulvar pain because there's different types of pain that I hear women talking about - period pain, cramps, UTIs?

It comes in different types, but generally we're talking about burning irritation, discomfort, rawness, dryness, all of these different descriptors of uncomfortable feelings in the vulvovaginal area. Most women will say vaginal pain, but what they're really referring to is the vaginal entrance, which is actually a part of the vulva. So in order to understand these pain conditions, I think we should probably first start with some basic anatomy.


It's essential to be able to know the parts because it empowers you, and it also allows you to be on the same page with your healthcare provider when you're communicating about where your pain or discomfort or symptoms are located.


  • Vagina: The muscular tunnel or tube that's located inside the body that connects the vaginal opening or outside to the uterus (or womb) and the entranceway to the uterus is called the cervix. When a women's health provider is doing a speculum exam for say, a pap test, cervical cancer screening, or to collect swabs to test for infection. That person is basically inserting a speculum or a device that goes into the vagina that kind of opens up the vagina. The vagina is a tensile space. So usually the walls of the vagina are touching each other there or they're closed. And they're looking basically at the top at the vaginal walls, which are located all around when you're doing an exam such as this.

  • Cervix: Located at the top of the vagina, which looks like a little pink donut located at the top of the vagina. When the OB GYN is examining you during a pap smear, they're looking at the cervix.

  • Vulva: The part that we can see with our eyes. It's the external area, including the labia.

  • Labia majora: The hair-bearing labia

  • Labia minora: The smaller labia that are located a little bit internally to that.

  • Clitoris: Located at the top of the vulva.

  • Clitoral hood: The hoodie on top of the head of the clitoris.

  • Perineum: The area between the vaginal opening and the anus down below where stool comes out.

  • Vestibule: The area within the labia minora that forms the entrance to the vagina. It goes from inside the labia minora to the hymenal ring, or the hymen, as we commonly call it. The bottom part of the vestibule area are the insertion points for the pelvic floor muscles.

  • Hymenal Ring (or Hymen): This area is about the size of a postage stamp. It's very small. You can think of it as a ring or a U-shaped area at the vaginal opening, but it's really important because it contains really important structure as it contains the glands that produce our natural lubrication. So when we get aroused in preparation for intercourse, it's the gland openings that produce the wetness there.

  • Urethra: Where the urine exits the body, which is important when we're talking about things like urinary tract infections.


What we're concentrating on when we're talking about vulvar pain conditions and sexual pain and pain with intercourse is often the entrance of the vagina as well as the external area.


Tell us about what pain with sex, specifically, feels like.

Oftentimes when we're talking about vulvar pain, we're talking about pain with intercourse or pain with sex, which can be either deep pain or it can be superficial pain.


The medical term for it is dyspareunia. When we're talking about deep dyspareunia or deep sexual pain, we're talking about more internal conditions, like things like endometriosis or scar tissue inside of the pelvis, or a tilted uterus or different anatomic, more physical kind of internal conditions. However, when we're talking about superficial dyspareunia or superficial pain with intercourse, we're talking about the vestibule.


The vestibule is the area where most women actually have sexual pain, and they'll describe it as pain with insertion. And I would say upwards of 80% of women when they say they have sexual pain, it's located with insertion or at the vestibule at the vaginal opening is what they're describing.


What causes vulvodynia?

That's the million dollar question. So when we're talking about vulvodynia, we're generally talking about pain of the vulva, meaning the external genitalia or entrance area. The more specific term for pain at the entrance area is called vestibulodynia.


"Dynia" is an abnormal pain response. And what we put in front of it tells us where the pain response is. So vulvodynia is an abnormal pain response of the vulva in general.


Vestibulodynia is a pain response of that little vaginal opening, which is way more common. And so let's concentrate on that part. So when we're talking about vestibulodynia, generally we can lump causes into four general categories.

  • Hormone

  • Muscle

  • Nerve

  • Inflammation

When you break it down in this way, it makes it so much more understandable because the problem with vulvodynia in general is that practitioners really don't know exactly where it is, what it is, what causes it or how to treat it.


And patients don't know the same things.


We treat it as this black box of vulvar pain where there's not an identifiable cause according to the definition. And so if there's not an identifiable cause how are you going to find a treatment option for it?


In reality, vulvodynia is not a diagnosis. It's a descriptor of where the pain is located, but it likely encompasses a number of causes or pain conditions in one. Therefore, when we lump everything together, it makes it really difficult to provide a true cause, proper diagnosis, and effective treatment.


So if someone comes to you and say, "I have sexual pain,” how do you diagnose them?

This is where women are Googling this and not finding the answers that they need. They're seeing doctor after doctor, after doctor, and they're not getting the treatment that they need.


When a woman comes to me and she says, I have burning irritation, rawness, discomfort in this area, mainly with insertion, with intimacy, with sex, but all also, she may have discomfort at other times too. Maybe inserting a tampon is uncomfortable, or maybe it's completely unprovoked, meaning you don't even have to touch the area, but just wearing tight or just in general, this is an uncomfortable area for her.


The first thing I'm going to do obviously, is:

  • Obtain a full history, including medications and past medical history and all, and all of those things, GYN, history, and so forth.

  • Do a physical exam, where what I'm looking for is I'm trying to determine what the exact cause of her pain is going back to those four categories.

Let's break down those categories that will give you further insights.


Hormonal decrease in estrogen and androgens, which is mainly testosterone can cause that tissue to become irritated, and dry the glands aren't working as well.


The lubrication isn't working as well, when that tissue is thin and dry and irritated, it's more susceptible to infection. And so that can cause symptoms in this area.


What can cause decreased hormones?

Menopause, perimenopause, and then in younger women, there are certain medications that can decrease androgen and testosterone levels such as spironolactone, which is a common medication used for acne, as well as some women, a small percentage do have a side effect with birth control pills, where they have vulvar pain or vestibulodynia that is hormonally associated or related to the birth control pills that they're taking.


Tell me about how you can determine if it is a muscle-related cause.

I can identify that based on the way that their gland openings look in that vestibular area.

If they're red and irritated and angry, and then I take a wet Q-tip and I touch those gland openings, if they jump off the table because it's so uncomfortable, then that helps me identify that as a potential cause another cause is muscle related.


I can actually feel their pelvic floor muscles. I can tell if their pelvic floor muscles are tight and tender, and then there's other signs that I'm looking for, too. If they have pain with that Q-tip test down at the bottom where those pelvic floor muscles insert, then that tells me that there's a muscular component to that pain and these things can occur together. And they often do.


Can the cause be both muscle- and hormone-related?

Oftentimes someone will start to have pain for a hormonal reason and when intercourse is painful and they start to have pain during the course of the day, and then they develop anxiety over why this pain has started or why it's occurring. And they're seeing multiple doctors and no one can figure it out, their pelvic floor muscles often guard and become tight in response to that pain. And so then you have two things going on, right? You have the hormonal issue with the tissue, but you also have the muscular response and you really have to figure out both in order to get them completely better.


Tell me about the nerve-related cause.

That can be the big nerves that come into the pelvis called the pudendal nerves that break into three branches and feed the entire vulvar area, including the clitoris, the labia, as well as the perineal area.


By doing a neurosensory exam, essentially just by touching with a Q-tip, I can determine if that may be a cause, and I can also press against those nerves internally to figure out if that's what's going on.


Tell me about the inflammation-related cause.

We throw that term around a lot, so let me explain. The way that I like to think about it is inflammation can be external or it can be internal.


  • External inflammation: Infections like recurrent yeast infections, other bacterial vaginosis infections, other bacterial infections that are less commonly recognized by doctors like aerobic vaginitis, discriminative inflammatory vaginitis, plasma cell vulvitis. But all of these things that most doctors see very rarely, but I actually see quite often.

  • Internal inflammation: Auto-immune skin conditions like lichen sclerosus, which is believed to be autoimmune, as well as lichen planus and what we call dermatoses or skin conditions of the vulvar area.


So when you break it down in that way, you can see why this becomes so complicated when we lump everything together.


Let’s talk about solutions for each cause.

When you're able to identify the cause, the treatment becomes really obvious and that's where most people get hung up with vulvodynia because the cause is not identified. People are thrown antidepressants or they're thrown combinations, topical creams to put on that area that have multiple different mechanisms from the different categories that I was describing. They don't get better and no one knows really why. Alternatively, things get partially better, but you can't really figure out how to get a hundred percent better and so forth.


Hormone-Related Cause

It really depends on the cause. If I have a woman who is perimenopausal or menopausal, then I want to replenish the hormones in that area with local estrogen, and sometimes we'll use a local testosterone in that area.


If I have a younger woman that, or a woman of any age, actually, and I think a medication is contributing in a hormonal way, then we want to look at alternatives to that medication.


If a young woman is on birth control pills, and I believe that's contributing, then I would recommend a progesterone only option for her contraception / birth control, like an implant or an IUD. I would also give her a topical estrogen estradiol, which is estrogen - testosterone, gel or cream to apply to that area, to replenish hormones, to those gland openings that so need them and contribute to the pain.


Muscular-Related Cause

Then we're talking more pelvic floor physical therapy, and then there's some adjuncts or some muscle relaxing helpers that I can offer that go along with pelvic floor physical therapy to release those muscles.


Inflammation-Related Cause

As far as inflammation goes, it really comes down to identifying the source. If it looks like an autoimmune condition and oftentimes, I may need to do a biopsy to show that by pathology with, and then generally we decrease the inflammation with a topical steroid. Steroids decrease inflammation, and so we give it locally to decrease the inflammation within the skin and often things improve in that way.


Sometimes it's when it's external sources, it's trying to find out what the allergens or irritants, what the skin is being exposed to, which can be difficult. Sometimes I start really pretty restrictive. And then we start adding things back in to try to figure out why the skin is allergic or irritant to a certain substance.


Nerve-Related Cause

This is an area where there is currently a lot of research investment, and there's such exciting information coming out of it. We're actually finding that there's issues within the spine.


Herniated disc with nerve impingement, something called Tarlov cysts and annular tear. There's different spine pathology that we're linking to irritation of the pudendal nerve and then to pain conditions of the vulva, including vestibulodynia, which is what we're mainly talking about - pain at that entrance area, as well as cliterodynia.


Some women have pain of the clitoris where the clitoris is touched with gentle touch or a light Q-tip. And they have an incredible pain response to that, which you can imagine can be extraordinarily disruptive to someone's life.


Then some women actually have unwanted arousal symptoms. So they'll have this feeling of arousal that they can never really get rid of, and it is extremely disruptive.


Finding that some of those clitoral pain conditions may be related to actual issues in the spine is something that we haven't really discovered until the last five years, which is relatively recently. This area is really exploding with our understanding and it's giving women hope and relief and opening up this whole area of medicine where we're able to figure things out before we're complete mysteries to us.


We have a questionnaire that we give all new patients and one of our questions is, “Have you ever had an injury to your tailbone?” because we know that when there's deviation of the tailbone or injury to that area, you can actually have a lot of pelvic floor muscle consequences.


It's chicken and egg a little bit, but you can also have some nerve related issues, especially involving the pudendal nerve. And so this is something that I see fairly commonly actually because the tailbone can be disrupted by injury childbirth.


We'll have to do imaging to kind of get to the bottom of things, but oftentimes I will start with pelvic floor physical therapy.


So the nerve part is very interesting for a number of different reasons - from an anatomy and structural and pathology sense. It's also interesting because there's something to be said for upregulation of the nervous system, and that part is not quite as tactile or as understood. However, these things all have to do with each other.


What causes chronic pain?

Dr Jill Krapf: When pain turns into chronic pain, it almost has a different feel to it, and then you're involving more body system systems - a mental component with pain-related anxiety that has to do with that as well as a nerve component in up-regulation of the nervous system.


Why is diagnosis so hard to come by?

No one really owns sexual medicine because you have to have a whole body approach. And we can't forget about our acupuncturists and our dietitians. There's so many components that really go into this, and I think the more that we expand our minds and think of it in that way, the closer we're going to get to the heart of the matter.


Let’s quickly go back to something you talked about with the pelvic floor. One thing I learned during my podcast interviews with Dr. Allyson Shrikhande, a pelvic floor rehabilitation specialist, and Corey Hazama, a pelvic floor physical therapist, say that one may do the incorrect kegels and harm themselves. Tell me more about that.

Yes. So the important thing here is that incontinence has gotten a lot of press there. People know about it. They know about kegel exercises that have really come into our awareness. What has not, though, is the other type of pelvic floor dysfunction, which is the kind that I see most often - overactive or hypertonic pelvic floor muscle dysfunction, which essentially talks about tight pelvic floor muscles.


When you're talking about incontinence and weak pelvic floor, and when you're talking about tight pelvic floor, both of these are weak muscle conditions. It's where the muscle is not as functional as it needs to be.


You want to be in the center of that spectrum. You don't want to be too loose and you don't want to be too tight. I tell my patients to think of it as a rubber band. You have a rubber band that's really loose, then you're not able to open and close it. If you have a rubber band, that's really stiff, same thing. It's not functional.


With hypertonic pelvic floor muscle dysfunction or tight pelvic floor muscles, the issue here is that these muscles are so tight and they're clenched all the time that they're not getting the oxygen that they need. When they don't get this oxygen, they produce byproducts that are inflammatory to the vaginal opening and that delicate tissue there. That's what causes those sensations of burning, rawness, aching discomfort that often get interpreted as a yeast infection or other type of infection.


Because that's what our brain goes to. There's only one type of nerve receptor in the vestibular area, or that vaginal opening area. So everything pretty much gets interpreted through the same frame as the same thing. And the thing that we're most comfortable with or the thing that we associate there is infection. Then we go to our doctors and that's the first thing they do is rule out infection.


The patients that I see are the patients who've had swab after swab and everything is negative, but they have this feeling that won't go away. Oftentimes it is burning related to the pelvic floor and it forms almost like a vicious cycle. You have the tightening, which leads to the burning, which leads to... And what do you do when something's uncomfortable? You clench and around and around you go.


And the other part of this is when something's burning and you're not sure why, and you're having symptoms and you don't know what started them. What do we do? We get anxious about that, and we start to attribute that to things and almost catastrophize. And then that anxiety, that pain-related anxiety feeds into that loop because it tightens us even further.


Tell me if this is a fair statement, that an OB GYN is almost like a general practitioner for women, because what I'm learning is just how many sub-specialists there are. Additionally, given there are so many sub-specialties, I think about how this can create further challenges with access to care based on your financials and even geographical location. What can women do?

You're right. I am an OB GYN. I delivered babies for many, many years. I did serve in many different types of surgeries besides the ones that I do now. And it's impossible to be an expert in absolutely everything that involves half of the population. OB GYN handles high risk pregnancies, cancer screening, general wellness and your menstrual cycles.


So there's subfields within OB GYN. For example, let's take infertility as an example. If you're having trouble getting pregnant, you would first go to your OB GYN and they would try some first step approaches. They would give you maybe one or two things to try for a certain amount of time, depending on your age. If that doesn't work, then they're going to send you to a reproductive endocrinologist, or infertility doctor. This is a specialist who's done additional training to bring you to that next level of treatment approaches or options. So that makes sense.


The problem is with vulvar pain, there isn't an established group of specialists. I think there is one fellowship in this that's located in San Diego, but I think in the future, this will be a sub field just like reproductive endocrinology and infertility.


Same thing with urogynecology. If you're having issues with it with urinary incontinence, then you know, first step approaches aren't working with your general OB GYN, then you would see a urogynecologist.


I do feel bad for general OB GYN because these conditions with all of our pain are complex as we just laid out. You can't completely tackle this in a 15 minute well woman visit. I have tried to do that in an insurance model. I did that for a number of years and it was virtually impossible. I killed myself trying to do it because these patients require and deserve a different level of care that you can't do in a 15 minute double books slot.


That doesn't really answer the question of where women go from here. But one thing that we're trying to do kind of just move in that direction is through the International Society for the Study of Women's Sexual Health, which is ISSWSH. We are doing education and courses for providers to give them more tools in their toolbox to help patients that come to them with this type of pain.


Sometimes it is necessary to refer to somebody who does this every single day For women who maybe feel that they haven't had a lot of receptiveness with providers or they're not really getting anywhere, I recommend consulting with the pelvic floor physical therapist First of all, oftentimes there is a muscular component.


The second thing is pelvic floor physical therapists are getting referrals from all over their area. They know who the generalists or specialists are and who trained or educated in these areas. They can actually be a wealth of knowledge.


And then centers really are expanding. I know with my center, we have patients from all over the country and world who come and see us.


We have all full texts of all of our publications. I know doctors actually, who use this as a resource.


What is your greatest hope for women's health?

I really hope that patients and providers can really be on the same page with diagnosis and treatment. I want to empower patients to really understand their bodies and to know the why behind what is going on with their bodies.


I want providers to be open-minded in, in listening to patients and when the patient is the expert on their body, right, the provider is the expert in how bodies work. And so if we can marry the two or put that puzzle piece together, I think that we're really going to get somewhere.


One of my passion projects is education through social media. I provide the why behind how the body works. I truly believe that when patients understand why they're doing a treatment or why a treatment is recommended, they're more likely to be compliant with it. They're more likely to have that trust relationship with their doctor if they understand a disease process and how treatments are targeted towards that disease process.


If we don't have trust, then where can we go from there? Trust comes from not only listening and really, really listening to the patient. I think it also comes from really coming to be on the same page when it comes to education.


If one person feels less alone because we're talking about this and bringing it out in the open, then I've done my job.


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