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Guest Post: Our Evolving Understanding of Genital Pain Disorders

By Steph Auteri | From the October 2015 Issue of AASECT newsletter first posted here

 

I lived with pain during intercourse for awhile before I told anyone. I winced my way through it, clenching my teeth, tensing my muscles, squeezing my thighs together. It was a sharp, jagged pain that ripped me apart upon penetration, that lived inside me. It was something no amount of personal lubricant could touch.

I finally told my gynecologist about it, hoping she could give me a definitive answer. I hoped she would say to me: this is what’s wrong with you. This is how you can fix it. But she told me she couldn’t see or feel anything wrong. And though she gave me a prescription for a transabdominal ultrasound, she also suggested it was more likely a psychological issue. When the ultrasound tech also failed to find anything amiss, I finally had to accept that my brain was the problem.

And this was much the way of things back in the day, though “the day” for me was likely not much more than five years ago. According to Talli Rosenbaum, M.Sc.—a certified sex therapist, couples therapist, and well-known expert in the treatment of what are now known as sexual, or genital, pain disorders—the ideology around such maladies, until fairly recently, is that they were either physical or psychological.

Traditionally, women experiencing pain during sex or unable to even engage in intercourse first went to their doctor to rule out any physical sources for the pain. If something physical was discovered, it was understood that the pain was a physical problem. If nothing was found to be wrong physically, the diagnosis was that the pain was psychological in origin. “Our understanding of these pain disorders has evolved,” says Rosenbaum, “so that we are now able to conceptualize sexual pain as being a biopsychosocial phenomenon.”

And that’s not the only thing that has changed. Where before disorders such as vaginismus and dyspareunia were separate entities, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), no longer distinguishes between them, referring to them collectively as Genito-Pelvic Pain/Penetration Disorders (GPPPD), and placing them under the umbrella term “sexual pain disorders.”

“Basically, I could say that everything I was taught about dyspareunia and vaginismus back in the middle ages, when I was a graduate student, is no longer correct,” says Irving Binik, Ph.D., who was actually on the committee behind the updates in the fifth edition of the DSM, and who previously had written a paper, published in the Archives of Sexual Behavior, on the diagnostic criteria for vaginismus.

In the past, the division of vaginismus (defined as the “painful spasmodic contraction of the vagina in response to physical contact or pressure”) and dyspareunia (defined as “difficult or painful sexual intercourse”) implied dyspareunia was an actual, organic pain disorder, while vaginismus was purely psychological. “The new DSM no longer creates that dichotomy,” says Rosenbaum. “What this has done is it has recognized they are not necessarily two distinct diagnoses. Rather, they can exist together on a spectrum.”

Rosenbaum goes on to explain that all genital pain disorders can have their origins in a confluence of physical pain, anxiety, and a woman’s reactive behavior around penetration. “We all react differently to pain,” says Rosenbaum. “Our levels of reactivity are going to vary. Our levels of physiological and neurological arousal will vary. Those who are more trusting and relaxed may not experience as much pain or the same sort of pain as those who are hypervigilant.” Part of this is because if you are more anxious, your muscles respond by contracting, naturally leading to even greater levels of pain.

“The other component that gets missed,” says Rosenbaum, “is the social piece of the biopsychosocial paradigm. Women often are extremely motivated to allow intercourse to occur and to engage in intercourse despite pain, due to societal messages that sexual activity is expected to culminate in intercourse. Feelings of obligation, guilt, and a pressure to please their partner turn sex into a chore that must be fulfilled. A lot of anxiety is created around that need to succeed.”

Deborah Coady, M.D., FACOG who, as a gynecologist, evaluates patients in a manner that allows her to account for the physical causes of pain, agrees that a biopsychosocial approach is important. “With vaginismus,” she says, “the psychosocial part determines some of the behavioral response to vestibular and pelvic floor pain. And the spectrum of responses to having vestibulodynia is wide: many patients have excruciating pain with the q-tip test but are really fine with undergoing the exam and the touching, even able to observe and feel and comment on any reflexive pelvic floor contractions; others cannot even allow touch at all. They draw away, and cannot bear to open their legs. But I have had success having these patients do their own exam,” Coady continues, “with me never touching. Just watching. So this must be evidence of the psychosocial aspect of their pain.”

Coady mentions, however, that other biological influences can also affect behavior, such as differences in peripheral and central pain processing, pain thresholds, sympathetic nervous system overdrive, hormones, genetics, and prior trauma from how the medical system treated them.

But when those providing treatment for genital pain don’t look at every piece of the picture, they can end up missing the piece that can actually help their patients move past pain. Rosenbaum stresses that there is no “one size fits all” treatment, and that each therapeutic intervention should fit the client’s needs, rather than following a particular protocol. She tells the story of a young woman who went to a local clinic for vaginismus treatment. Dilators and physiotherapy were prescribed, but she remained anxious and disengaged from what was happening to her. “Maybe she can physically or mechanically allow intercourse,” posited Rosenbaum, “but is she present? Is she aware of her bodily sensations? Does she perceive pleasure and  does she engage in sexual activity in an autonomous way?”

Rosenbaum goes on to relate that this particular young woman didn’t really progress in her treatment. While many women with genital pain disorders do very well with behavioral therapy, in this young woman’s case, genitally focused treatment was not enough. It took an additional year of psychodynamic therapy with Rosenbaum to achieve her goals. The therapy included developing her autonomy and sense of self and learning to set boundaries, which had not been respected by her invasive mother in her enmeshed family. “Unless your voice can say no,” says Rosenbaum, “your muscles are going to continue to say no for you. You need to know you have a voice.”

When asked if trauma can play a part in genital pain disorders, and perhaps even exacerbate them, Rosenbaum concedes that past traumatic experience can lead to the levels of hypervigilance that cause more pain. “Those who have experienced past trauma can have a very difficult time relaxing,” she says. “Their fight or flight mechanism is highly attuned to be prepared for the worst so, even if their trauma was not sexual in nature, a woman who is highly controlled and unable to let go can still be vulnerable, can still have difficulty trusting. And in cases like these, with this type of hypervigilance, there can be over-activity of the pelvic floor, leading to pain upon touch or penetration.”

Binik cautions, however, against assuming trauma—especially sexual trauma—is at the root of genital pain. “Once upon a time,” he says, “people were trained to ask about abuse when faced with instances of genital pain. And in fact, many years ago, I spoke with a woman who had pain during intercourse and, at the end of the session, she pointed out that I had asked her everything about her sex life, but not one question about her pain.”

Since then Binik has come to the conclusion that these types of pain disorders are still being misclassified. “It’s really not a sexual disorder in my view,” he says. “It’s a pain disorder. And the treatment should be appropriate to that.” Because of this, he prefers to refer to them as genital pain disorders versus sexual pain disorders. “It’s not specific to intercourse,” he insists. “That’s just one of the situations in which it might happen.”

Binik likens chronic genital pain to headaches. “We have migraines,” he says. “We have cluster headaches. We have tension headaches. Each of these headaches has a different treatment and, presumably, different syndromes. The same is true of genital pain.”

Coady also feels troubled by the terminology surrounding the genital pain disorders, though her primary concern is with the prominence of the word “penetration” within the diagnosis of GPPPD. “The terminology should be inclusive for people who don’t have penetrative sex,” says Coady. “There is a wide range of sexual activity. Sex is much more than [penetration]. There’s this historical problem of how we’ve looked at sex over the centuries as primarily being intercourse. We’re still not beyond that. We think we are. We think we’re advanced. We think we’re liberal. We think we’re open and inclusive. But so much of our terminology still refers to penetration.”

Despite continuing terminology-based confusion, it’s clear that the research being done on these pain disorders has improved our understanding of them exponentially and, by extension, the treatments available for them. As recently as two months ago, a study published in the Journal of Sexual Medicine confirmed the benefits of therapist-aided treatments for those with chronic genital pain. Also this year, Clinical Obstetrics and Gynecology published a paper by Rosenbaum, Ellen Barnard, M.S.S.W., and Myrtle Wilhite, M.D., M.S. on the psychosexual aspects of genital pain, and the treatments that might prove effective. These included a combination of cognitive behavioral therapy (CBT), sensate focus exercises, and sexuality education, in addition to mindfulness techniques. Lori Brotto, Ph.D. has also been studying the usefulness of mindfulness techniques with pain disorders, finding them effective. Though she also touts the importance of taking a multidisciplinary approach to a condition that can be multifaceted in its origins.

Sharon Parish, M.D., an internist working in the areas of women’s internal medicine, sexual medicine, and menopause, mentions several other areas in which our knowledge in regard to genital pain has advanced. “In post-menopausal women,” she says, “we’ve been looking at pain and its relationship to hormonal factors. That has improved. This includes research around and responses to topical hormone treatments for post-menopausal women. This includes information on the impact of oral contraceptive use on genital pain. Women on low-dose hormonal birth control can become estrogen-depleted. There is emerging information about that.”

The National Vulvodynia Association also remains a crucial resource for those experiencing genital pain disorders, and for those treating them. They even maintain a reference list of all medical research published on chronic vulvar pain disorders since 1965. And Coady recently wrote a must-read comprehensive article for Contemporary OB/GYN on evaluating chronic sexual pain.

Coady also mentions that we’ve come to a very good understanding now that the most common cause of genital pain is vestibulodynia, and that the pelvic floor is almost always involved, even in cases where psychosocial aspects affect a person’s behavioral response. “There are enough studies now,” says Coady, “that the association is very tight. I’ve examined a lot of patients who were diagnosed with vaginismus. I cannot say that there is one of them that did not have vestibulodynia.” She shares recent papers on chronic pelvic floor dysfunction, the mechanisms involved in generating localized vulvodynia pain, mast cells, and pelvic floor tenderness and its relationship to dyspareunia. And these are only some of the most recent pieces of research that have been published. They represent only a small number of studies that have been conducted in this area.

In addition, the International Society for the Study of Women’s Sexual Health (ISSWSH), The International Society for the Study of Vulvovaginal Disorders (ISSVD) and the International Pelvic Pain Society (IPPS) recently developed “an evidence-based consensus among experts, experienced in the diagnosis, evaluation, treatment and/or research of vulvovaginal pain, for appropriate nomenclature and definitions of vulvovaginal pain in women.”  The resulting document, “2015 Consensus Terminology and Classification of Persistent Vulvar Pain,” can be found here.

But what else can AASECT members be mindful of as they come up against instances of various pain disorders in the work they do?

“We need to integrate our paradigm a little bit more,” says Rosenbaum. “We sex therapists talk to our patients in a safe setting, but doctors and physical therapists witness anxious reactions in real time. We need to acknowledge that physical therapists need to be better skilled at being the ones to contain and address anxiety in real time, particularly if flashbacks or disclosures of abuse occur because of the intimacy of the situation. There needs to be more of a cooperation and a lot of back and forth and also a lot more training for physiotherapists in being able to address psychosexual components in the clinic, because they’re the ones who are often going to confront them.”

Rosenbaum points out the need for a multidisciplinary approach for the sake of therapists as well. “This pain can be very conceptual for many therapists,” she says. “They don’t consider themselves experts in vaginas or pelvic muscles. It seems mysterious to them what goes on down there.”

“Physical therapists, on the other hand,” she continues, “are very much respected in the field for their mechanical skills and their knowledge about muscles, and they also need to understand the extent to which pelvic floor over-activity is also based upon the emotional reactivity response. It’s a window to the patient’s emotional state.”

Coady agrees with the need for a multidisciplinary approach, especially considering the ways in which training in genital pain can be lacking for those in the helping professions, such as OB/GYNs. “OB/GYNs are a self-selected group of people who went into the field wanting to deliver babies and do surgery and treat infertility,” says Coady. “Doctors in general receive only a little time in medical school learning how to treat chronic pain. And during OB/GYN residencies, everything is geared toward surgical procedures. And most types of genital pain are best treated non-surgically.”

The resources for OB/GYNs are also lacking in this area. The American Congress of Obstetricians and Gynecologists’ (ACOG) most recent edition of Guidelines for Women’s Health Care: A Resource Manual makes no mention of a pelvic floor exam, much less how to do one. And the tenth edition of Educational Objectives from the Council on Resident Education in Obstetrics and Gynecology (CREOG) only states that that the residents needs to be able to “perform a targeted physical examination” to evaluate sexual dysfunction.

It’s obvious that training in this area is lacking, as is an understanding of the full range of genital pain disorders, and what their causes might be. “But until the powers that be consider it important,” says Coady, “it’s going to be very hard to expand treatment in this area.”

“And of course, OB/GYN residencies are really intense,” adds Coady. “There’s a lot to learn. It’s such a broad field. To start adding more things is very difficult.” For this reason, Coady believes OB/GYNs have to work at building a network of experts, such a physical therapists and talk therapists who are familiar with genital pain, to which they can refer their patients.

“They also need to start screening patients for pelvic pain when they come in,” says Coady, “because most patients will come in and not even bring it up.” She recommends that OB/GYNs and other professionals refer to the website for the International Pelvic Pain Society, which has a template for in-patient screening.

All of this really speaks to the bind sexologists are faced with. Often, they know that many health care providers aren’t well versed in genital pain, but they also know they should recommend medical evaluation. How can sexologists avoid instilling a sense of mistrust in the health care provider / patient relationship if they haven’t already built up a strong network of providers who have taken the time to develop their expertise in that area?

Luckily, the number of health care providers who enroll in continuing education programs has grown, which may be a reflection of the growing awareness of the complexities of these issues, and of an interest in a multidisciplinary approach.

Beyond that: “Educators should also educate young women to not ignore pain in their genitals or difficulties they have with penetration or with inserting tampons,” adds Binik. “Don’t ignore that. It may or may not be relevant, but it can be a warning sign for many women. If your initial sexual experience is painful or you have difficulty at your gynecologist, find someone who can help you with this. Don’t make believe it’s going to go away.”

It’s incredible how much our understanding of chronic genital pain disorders has evolved in only a few short years. Once upon a time, I myself owned a copy of Coady’s Healing Painful Sex: A Woman’s Guide To Confronting, Diagnosing, and Treating Sexual Pain, which was published in 2011, and her knowledge of the topic has only grown since then.

As for my own pain, it’s no longer a part of my life. Through a mix of intuition, psychotherapy, and heavy reading, I moved past it. Tellingly, this breakthrough occurred at a time when yoga and meditation became a prominent part of my life, and mindfulness in mind and body was naturally cultivated.

The lesson in all of this, however, is that—as is the case with much of the work sexologists do—a multidisciplinary approach can be especially beneficial. As can the recognition and acknowledgment that there is always more to learn.

(image by Vanessa Bazzano, via Flickr)

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