Dr Jill Krapf of The Centers for Vulvovaginal Disorders speaks about the causes of painful sex, why it is so hard to diagnose and treat, and tools women can leverage to properly seek support. Her passion and expertise shine through in this discussion.
Georgie Kovacs: What is vulvodynia?
Dr Jill Krapf: 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.
Georgie Kovacs: Can you define vulvar pain because there's different types of pain that I hear women talking about - period pain, cramps, UTIs?
Dr Jill Krapf: 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.
Georgie Kovacs: Tell us about what pain with sex, specifically, feels like.
Dr Jill Krapf: 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.
Georgie Kovacs: What causes vulvodynia?
Dr Jill Krapf: 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.
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.
Georgie Kovacs: So if someone comes to you and say, "I have sexual pain,” how do you diagnose them?
Dr Jill Krapf: 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.
Georgie Kovacs: What can cause decreased hormones?
Dr Jill Krapf: 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.
Georgie Kovacs: 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.
Georgie Kovacs: Can the cause be both muscle- and hormone-related?
Dr Jill Krapf: 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.
Georgie Kovacs: Tell me about the nerve-related cause.
Dr Jill Krapf: 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.
Georgie Kovacs: 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.
Georgie Kovacs: Let’s talk about solutions for each cause.
Dr Jill Krapf: 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.
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.
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.
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.