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Vaginismus: Managing a Misunderstood and Underdiagnosed Condition

Tune into this valuable discussion with host Scott Kober and experts Rachel Pope, MD, MPH, and Sheryl Kingsberg, PhD, as they highlight the overall impact of vaginismus and discuss strategies to combat its effects on women who are diagnosed the condition.

Welcome to the contemporary OB-GYN podcast, Vaginismus - Managing a Misunderstood and Underdiagnosed Condition, brought to you by Materna Medical. Now here is your host for this podcast, Scott Kober. Today, Scott Kober, your podcast host will be talking about the understanding, management, and overall impact of vaginismus on our patient population. Scott Kober will be joined by Dr. Rachel Pope, an obstetrician gynecologist with fellowship training in global women's health and Chief of Female Sexual Health in the Urology Institute at the University Hospital's Cleveland Medical Center, and Dr. Sheryl A. Kingsberg, a licensed clinical psychologist and chief of the Division of Behavioral Medicine at University Hospital's Cleveland Medical Center, and a professor in the departments of Reproductive Biology, Psychiatry, and Urology, Case Western Reserve at the University School of Medicine. And now, here is your host, Scott Kober.

Thank you and welcome to this podcast. My name is Scott Kober with contemporary OB-GYN. Today we'll be talking about the overall prevalence and impact of vaginismus on our patient populations. I'm happy to be joined today by Dr. Sheryl Kingsberg, division chief of OB-GYN Behavioral Medicine and co-director of the Sexual Medicine and Vulvovaginal Health Program at University Hospital, Cleveland Medical Center in Cleveland, Ohio. I'm also joined by Dr. Rachel Pope. An OBGYN in the Department of Urology at University Hospital Cleveland Medical Center. Welcome to the both of you, and thanks so much for joining me today.

Pleasure to be here, Scott. Thanks for having us.

Thanks so much.

Dr. Kingsberg. In 2013, the American Psychiatric Association got rid of the term vaginismus in its latest edition of the Diagnostic and Statistical Manual of Mental Disorders. Choosing instead to lump it into a category that they call Genital Pelvic Pain Penetration Disorder or GPPPD. Despite this, many providers continue to use the term vaginismus to describe the specific phenomenon of a spasm that typically causes pain upon attempted vaginal penetration. Why is the nomenclature used to describe this condition important to women?

Well, thanks for asking Scott. First of all, the nomenclature with GPPPD is actually kind of difficult. It's hard. It doesn't roll off the tongue easily. Spelling it out to genital pain and pelvic penetration disorder is also complicated. The American Psychiatric Association, which controls the nomenclature for the Diagnostic and Statistical manual thought, there is such overlap between what is technically vaginismus and what are pain with sex disorders, not sexual pain disorders. That they thought it would make it easier that way you didn't have to differentiate. Unfortunately, all it did was kind of make things more confusing. If we can think of vaginismus as the anxiety response to whatever is underlying the difficulties with penetration, I think that makes things easier. Although in the DSM it no longer is a qualified diagnostic category, it is still a useful term. It is still considered important in the ICD codes, and it still is important clinically. Vaginismus still exists as an entity. It is best understood as the anxiety response, the anticipatory anxiety that causes vaginal tightening and anxiety with wanted penetration that may be reflective of underlying pain and or maybe simply an anxiety response.

Dr. Pope, why does vaginismus remain an unrecognized and underdiagnosed condition? What can be done to encourage OB-GYNs to ask more questions of their patients about their sexual activity that might properly uncover the condition more frequently?

That's a great question. I think in general, there is a stigma still around women's sexuality, even in the healthcare office and in even in the offices of OB-GYNs, where one might think that would be a very natural place to talk about issues with sex. But oftentimes women just end up talking about any bleeding, any discharge, and don't really talk about what they might consider as more intimate, more personal. If there is other issues coming up, it actually might take up the time of an entire office visit. The provider might not even think to ask about it. There is assumptions that if no one brings it up that it's not a problem, and that's just not true at all. I think normalizing conversation and inquiries around sexual function is really important. As we do that and make that part of a typical office visit with the gynecologist, then the question of are you having any issues with sex? Are you having pain with sex? Then what might lead to a diagnosis of vaginismus would start to come up more frequently.

While they can talk about it smelly discharge and bowel function, still have trouble actually addressing sexual concerns. Anything that has the word sex in it. That starts way back in lack of education in medical school or whatever professional school there is. It leads to residency and then in practice. There is still a stigma, as Dr. Pope said very clearly around sexuality and even addressing sexual concerns in clinical practice.

Then Dr. Kingsberg, what should prompt suspicion from the OB-GYN that the patient in front of them might be suffering from vaginismus? What specific questions should they be asking, and what should they be looking for on a physical exam to help make the diagnosis?

Well, I'll let Dr. Pope take what they want to look for on a physical exam. But I will tell you some of the things that a clinician can look for is pretty obvious. When you see a woman sitting in front of you who is maybe halfway up the exam table because she's so anxious or looking nervous, or not making eye contact, or having trouble articulating what's going on, you can guess that she's probably very anxious. So many women, even without vaginismus are going to be anxious about a pelvic exam. That may sort of give rise to anxiety about discomfort. But women with vaginismus where there is absolutely no ability to have that pelvic exam, maybe particularly anxious and looking very nervous if they actually even get to your office. That's part of the problem is that they often don't even go in the first place because they know that they'll probably be asked to have a pelvic exam.

That's exactly what I was going to start with. Is it's actually what you are not seeing that would lead you to the diagnosis. That you see a woman who hasn't come to a gynecologist for 10 years, hasn't had a pap smear for 20 years, or has never had a pap smear. That is I would say the first indication that there might be something going on. It's not because she's had a lapse of insurance or she is left town or something like that. That she's just actually avoiding coming to the office.

Then, Dr. Pope, as we are seeing more and more telehealth visits, how do you assess if the patient has vaginismus when a physical exam can't be performed?

Well, I think telehealth has opened our world in a lot of wonderfully positive ways in that that woman who might have been avoiding coming into the office or might be nervous about her physical exam, could actually meet her physician or provider by telehealth first, and know at that moment that this is just going to be a conversation. That her clothes would stay on. She would not have any physical exam necessarily. That gives a lot of reassurance for a person to build trust, build a relationship with their provider before actually coming in for an exam. There are a lot of telltale signs of vaginismus just from a person's history. A history is what we are trying to gather in our initial interview with a new patient. We are asking about intercourse, maybe she is avoiding intercourse because it's been too painful. Maybe even just she's experiencing pelvic pain in general. There are several different things that would clue someone into vaginismus might be going on just from the initial conversation.

Including whether or not they've ever used tampons. We start way back to at what age did you reach menarche, and what have you used for your periods? Many women with primary vaginismus, that is, they've never been able to have wanted penetration, would say they either had difficulty or couldn't do it at all and use a tampon. I just use pads. I just use pads. They kind of slough it off. But oftentimes that's a telltale sign that they can't insert anything.

Dr. Kingsberg, let's kind of step back a little bit and look at some of the nuts and bolts of vaginismus. What are the primary underlying causes of the condition?

Well, it's important to think of vaginismus from a biopsychosocial model. Remember, vaginismus is the anxiety response to wanted penetration. There are a number of variables that can cause that vaginismus response. You can have medical vulvar conditions like in sclerosis, for example, or you could have genital urinary syndrome of menopause, GSM, which might have led to secondary or acquired vaginismus. You could have sexual trauma. You could have a generalized anxiety disorder that even without any kind of trauma, there's just a belief that penetration may hurt, so that sort of belief builds up. There could be psychological causes. There could be urogenital causes that are either primary causes of pain or secondary causes of pain. There could be underlying other medical conditions. You don't want to lump it into, this is the cause of vaginismus. You want to look at vaginismus as the consequence of a variety of possible causes.

Then, Dr. Pope, how do you treat vaginismus differently depending on the underlying cause of the condition?

I do typically try to discover what the underlying cause is. I do try to do a physical exam when it's possible if it is possible. Most of the time my patients with vaginismus really just cannot have a pelvic exam. As soon as they are in the stir ups in an office and they even are aware that a hand is approaching or speculum is approaching, they actually involuntarily spasm and sometimes even just close their legs. It's just not possible. But if they are able to tolerate an exam, then I do especially feel their pelvic floor muscles. They can spasm during the exam as well. That's one of the main things I do. Sometimes if I'm concerned that this might not be vaginismus, maybe there is a congenital anomaly here. Maybe the story is not so clear. Then they actually might warrant an exam under anesthesia or some imaging. That's usually kind of how I start things off. But then trying to understand, is there something that's underlined that can be treated here? If it's pelvic floor spasms where we could give pelvic floor injections or Botox. There are a lot of different off-label and on-label treatments that we could try. If there is a dermatological condition, as Dr. Kingsberg mentioned, there is definitely treatment for those after diagnosis is made. I really do try to rule other things out and figure out where this is coming from, where this is all stemming from. If it is involuntary spasming, if it is pain with penetration or pain with anticipation of penetration, then I have my answer.

Let's talk about the role of some specific therapies that can be used to treat vaginismus. Let's start with dilator therapy. What are some of the pros and cons of its use?

Well, I'm a big proponent of dilator use because in back to vaginismus as the consequence of whatever the underlying condition, whether it's an anxiety condition or a physiologic condition. The anxiety is that the involuntary tightening. Dilator use is part of a cognitive behavioral approach to systematic desensitization to give women control over their bodies, and to essentially teach them that penetration need not be painful. First and foremost, you need to treat whatever the underlying cause of the pain was if it was a medical condition. Because otherwise, you are not helping her. You need to treat that. But assuming that whatever underlying pain disorder has been managed, you then can work with the systematic desensitization. Taking either a set of static dilators or an expandable dilator which allows you to insert and then expand from the inside. It allows women to gradually learn progressively that they can insert reducing anxiety at the same time with no pain. My rule is no pain. They gradually become more empowered to be able to insert and gradually stretch the vaginal tissues to allow for more wanted penetration without anxiety. We almost anthropomorphize the vagina as being a reflexive protector of the of her owner, if you will. Saying things are trying to come in that might hurt us. We are just going to tighten up and protect you. Sort of like you are hand heading to a hot flame. The reflexive response happens before a conscious decision. The vagina is now reflexively tightening, we're now teaching it.

Then what about the role of physical therapy, Dr. Pope?

Physical therapy is wonderful because they can actually help. A trained pelvic floor of physical therapist can help women understand where that pain is coming from, learn their pelvic floor muscles, learn their anatomy. They can learn to engage those pelvic floor muscles, how to relax them, how to engage them when necessary. Help them overcome a lot of pain, overcome some of those underlying causes of vaginismus and really become comfortable with that region of their body. I have a lot of patients who I recommend dilation for. They don't know exactly where to start or they want some assistance. Pelvic floor therapy is useful for that as well.

We are now teaching it, it no longer has to. It allows for gradual mastery over wanted penetration.

Dr. Kingsberg, what about CBT? How can that be used in a patient with vaginismus?

Well, CBT stands for cognitive behavior therapy. Again, regardless of what the underlying condition is that caused the anxiety response of vaginismus, cognitive behavior therapy is both cognitive and behavioral. The cognitive approach to reducing anxiety is to help women address catastrophic fears. There is an anxiety avoidance model that we understand particularly with vaginismus, where women have either had a painful experience or they have a fear of penetration being a painful experience. Therefore that builds up anxiety and creates an avoidance. That is they don't try any kind of penetration, which we see a lot in women who come after years of, for example, being married and they've never had penetration and now they are ready to build their family. They are sort of forced to address the avoidance. But that it's almost like a cycle, a circular cycle where there is anticipation of pain, then avoidance. Then if they try something, everything tightens up and it hurts. The cognition is to break into what their cognitive fears are. This will hurt. This will tear me wide open. I will scream from the rooftops in horrible pain. That kind of catastrophic thinking. We need to challenge and help women learn to mitigate that sort of catastrophic fearful thinking. The behavior therapy in cognitive behavior therapy is back to the systematic desensitization, often using dilators. Dr. Pope gave such an incredible description of how they are used in so many ways. But in this particular case, it is really for empowerment and gradually reducing the anxiety and finding out that penetration need not hurt for whatever the purpose is, whether it's use a tampon, whether it's to have vaginal penile intercourse, or whether it's to use some sort of sex toy or something else. Women should be empowered to have penetration when they want it.

So then Dr. Pope, regardless of what treatment or combination of treatments that you are prescribing for a woman, how do you define treatment success in a patient with vaginismus?

Success is really different for everyone. But I do think that it's the woman herself who needs to define that, and I'm happy to help frame it. Help see how we best get there, whether there is more that I could suggest we get beyond, or really set expectations. But success is slightly different for everyone. I have many women who have come to see me, as Dr. Kingsberg said, who said they'd had issues with intercourse, but now they wanted to start a family. That's a very common reason because they want to have intercourse to reproduce, or to undergo infertility treatment. They can't imagine going through so many transvaginal ultrasounds and the other procedures that are needed with that sort of treatment. For other individuals that success is just having sex without pain. For some it's just not feeling pain at all or not having that fear and anxiety surrounding it. I really do let the woman define what that success means to her. Then if I feel like she's setting the bar low, I try to encourage her that things could be better.

And Scott, talking about success in my clinical practice, treating vaginismus is one of the most satisfying things, I think for clinicians. Because to give women back their power, to own their own bodies and to have pain free penetration. Truly clinically is one of the most satisfying things. I'm never sort of avoidant of women who come see me. It's interesting, back to term vaginismus, there is so many women who don't know where to turn that they go looking on the internet. For years, women have found me because they put in the symptoms and the term vaginismus will pop up. They'll say, is that what I have? Then they kind of search for clinicians who will treat it. Most of them have come to me and said, they've been to three or four gynecologists and it's been almost traumatic for them because they didn't understand what it was. They tried to do a pelvic exam, and then it was just frustrating and felt like a failure experience. Sometimes a lot of what I do is to help them understand what the condition is, and to help them find clinicians who are familiar with vaginismus so they can treat it. And or if I can't do that, thanks to telehealth and I can reach women in 28 states. I will tell them what they should be looking for and what to say to their clinician to start that conversation so that three or four more gynecologists don't end up having that same problem.

Then Dr. Pope, in a woman who reaches sort of the goals of treatment that either you or she set, what sort of maintenance regimens, if any, do you typically recommend?

People go through life, relationships change. If for example, the goal was to have sex without pain and they needed to use dilation to get there. Then I would let them know if they are not in a relationship or they are not sexually active as frequently for any given period of time, then they need to go back to the dilation or the physical therapy or potentially some other interventions. That might be necessary just to maintain their ability to have penetrative intercourse if that's what they're looking for. Usually if their goals have changed, then we might have to readjust or reframe what their new goals are. But there typically is a little bit of maintenance so that we make sure that that pain doesn't return and people don't relapse into what they were experiencing before.

Can I also add to what Dr. Pope said in maintenance and the importance of continuing to use, for example either the expandable dilator or a static dilator of a certain size. Because the whole phrase use it or lose it, with repeated penetration a woman will again feel mastery and feel less anxious. For example, if she's not having regular penetrative sex and she goes for a while without it. Then thinks, I'm going to have penetrative sex. I wonder if it will hurt this time. If she's been using a dilator all along just for two, three minutes, a few times a week, as a reminder to her body, penetration need not hurt. Then she doesn't have to deal with that anxiety when it comes time to have more intermittent penetrate. My takeaways for practicing gynecologist, number one, please don't be fearful of vaginismus. It is not difficult to approach a vaginismus this patient. Number two, think about vaginismus as either primary, which is lifelong or secondary, that is acquired after something that caused have a woman to have some kind of vulvovaginal pain. You approach them quite differently. A woman who has primary or lifelong vaginismus probably has an underlying anxiety component to that. Sending them once they've done a physical exam to make sure there is no underlying medical condition. If it is an anxiety response, sending them for cognitive behavior therapy is probably going to be very helpful to them. If it is acquired, you want to again, make sure you've treated the underlying condition. For example, giving a woman with genital urinary syndrome of menopause local hormone therapy to address the tissue changes. Then helping them with, again, systematic desensitization and using a dilator to help them regain the stretching and the confidence that penetration need not be painful.

I would say normalize the conversations about sex practice. That's the only way to overcome that fear that we talked about in the beginning of our conversation. Just practice asking about it. If you don't feel like you have the resources to address any issues that come up, either get the resources yourself because there are so many training opportunities and educational opportunities out there for us. Or find someone who is specializing in this area so that you could refer the patient to them. You have someone that you are directly handing that woman to for help. Then secondly, consider having some virtual options for your office visits. Because having a virtual new patient visit where women can talk to you from the safety of their home or where they can speak privately, and decide if they feel comfortable enough to come in and see you or start off with some interventions before they see you. That might help to address this for many more women out there.

Scott, my take homes for the gynecologist out there is number one per Dr. Pope's statement, please don't be afraid to talk about anything related to sexuality. Vaginismus is not necessarily related to sex. It is about wanted penetration. But overarching is the fact that so many clinicians are uncomfortable addressing anything that might even feel like it's sexualized. That's across the board regardless of the condition. All clinicians treating women's health need to be more comfortable addressing sexual health. You can use the plicit model. The P stands for permission. If all you do is ask a woman about sexual concerns, in this case about penetration or even about tampon use, and then you refer them out. You have already done them a service by giving them permission to talk about it and permission to be a sexual being. You can give them some limited information that might be referring them on to using dilators, or looking at websites, or even diagrams about what their anatomy should look like. Dr. Pope was very clear about saying this, too many women don't even know about their vulva. They don't even know the term vulva. They don't know where their vaginal opening is versus where their urethra is. Number three, recognize that vaginismus is the anxiety component to anxiety about penetration. You need to treat the underlying condition. If it's an anxiety condition, please send them for cognitive behavior therapy. If it's a medical condition, treat the underlying medical condition and or send them to pelvic floor physical therapy. Please be reassured that vaginismus can provide you a lot of satisfaction in your clinical practice because women are so appreciative if you address it and treat it.

Well, great. I think this has really been a terrific discussion about both the overall impact of vaginismus as well as strategies to combat its effects on women. Thank you so much to the both of you for joining me today.

Thank you.

Thanks for having us.

This has been a terrific discussion about the overall understanding, management, and impact of vaginismus on the patient populations. Thank you for joining us today. You been listening to the contemporary OB-GYN podcast, Vaginismus - Managing a Misunderstood and Underdiagnosed Condition. This podcast is brought to you by Materna Medical.