This was the debate topic the Journal of Sexual Medicine posed to two teams of clinicians back in February at the annual ISSWSH conference. (ISSWSH is the International Society for the Study of Women’s Sexual Health.)
Liz was asked to take a spot on the team that argued that “vaginismus” is not an “outdated, useless term.” Because of that, and because we think the debate speaks to a larger issue, i.e. the challenges of diagnosing and treating pelvic pain disorders, we thought we’d boil down both sides of the debate and let you decide.
Before we toss the proverbial coin and get into the two opposing arguments, a little bit of background: Whether it’s time to put the term “vaginismus” out to pasture is a very real argument today among clinicians who treat pelvic pain.
Here’s why: In the DSM-5, (Diagnostic and Statistical Manual of Mental Disorders), which was published in 2013, the diagnosis of “vaginismus” was absorbed into a brand new umbrella term: “Genito-Pelvic Pain/Penetration Disorder”. So the DSM-5 no longer has vaginismus. With the change to the DSM-5, the mental health community is making an effort to get rid of diagnoses that merely describe what the patient’s symptom is without bringing anything more to the table.
And while PTs and the majority of other providers who treat pelvic pain use the ICD-10 (the International Statistical Classification of Diseases) as the standard diagnostic tool for pelvic pain diagnosis and treatment, the DSM-5 change has brought up the question of whether or not “vaginismus” is…well…an “outdated and useless term.”
Now let’s take a look at the arguments for and against that were offered at the JSM debate beginning with the argument “for”:
On that side of the aisle stood PT Karen Brandon, the coordinator of the Pelvic Rehabilitation Department of Obstetrics and Gynecology at Kaiser Permanente in Fontana, California and faculty member of the Loma Linda University School of Allied Health and Andrew Goldstein, M.D., current president of ISSWSH.
For her part, Karen made a convincing argument, which started with the question: “What’s in a name?”
“‘Vaginismus’: time to say bye bye!” she added with aplomb.
Here’s a breakdown of Karen’s argument:
The challenges for healthcare providers are vast. They are charged with communicating to patients and other providers, investigating etiology, evaluating interventions, and addressing the problem.
Let’s take a look at the definition of “diagnose”: “1. to distinguish or identify (a disease, for example 2. To identify (a person) as having a particular disease or condition
3. To analyze the nature or cause of.”
We take this seriously. We want to bring attention and legitimacy to the condition. We want to use the best scientific explanation and label. We want the term we use to direct patients to the correct care and providers.
What’s in a name? Well, a lot actually. It’s a label, a description, a direction, an explanation. And it’s up to clinicians to label the most specific structure involved in a patient’s diagnosis. But the term vaginismus only names the area, it does not explain any action or inaction.
Plus, we should describe in most clear terms what is happening and if possible, describe the reason it is not normal in expected function/healthful state.
Vaginismus only says “something is wrong.” Vaginismus is latin for “tube condition”. Don’t we now know what structure is involved? Can’t we describe what is abnormal about its action?
Also, things change, often for the better. Just look at other historical diagnostic terminology that’s gone through rebranding (some very near and dear to our hearts):
- then: consumption, now: tuberculosis;
- then: frozen shoulder, now: adhesive capsulitis;
- then: interstitial cystitis, now: painful bladder syndrome;
- then: vulvodynia, now: hormonally mediated vestibulodynia/neuroproliferative vestibulodynia
For providers: does the term “vaginismus” help us providers to accurately communicate? Is it clear, is it accurate, does it use all the current knowledge we have, is it inclusive/exclusive? No, no, no, and no.
For example, vaginal spasm has been considered the defining diagnostic characteristic of vaginismus for approximately 150 years. This remarkable consensus, based primarily on expert clinical opinion, is preserved in the DSM-IV-TR. The available empirical research, however, does not support this definition nor does it support the validity of the DSM-IV-TR distinction between vaginismus and dyspareunia.
The small body of research concerning other possible ways or methods of diagnosing vaginismus has been critically reviewed. Based on this review, it was proposed that the diagnoses of vaginismus and dyspareunia be collapsed into a single diagnostic entity called “genito-pelvic pain/penetration disorder.” This diagnostic category is defined according to the following five dimensions: percentage success of vaginal penetration; pain with vaginal penetration; fear of vaginal penetration or of genito-pelvic pain during vaginal penetration; pelvic floor muscle dysfunction; medical co-morbidity.
For the patient:
What does the term vaginismus convey? How does it help the patient or society’s perception AND understanding of the condition? Is it associated with other conditions, does it define prognosis, does it have a stigma, does it help patients find help with the right providers/interventions.
I believe the term sounds threatening, and does carry a stigma, while not necessarily helping them to find help with the right providers/interventions.
My recommendations are that we look at descriptive labeling of this condition as we understand the purpose (of the body) and describe what we know is happening (the action of the body and mind) and can to a reasonable degree assess it, perhaps without etiologic inference until we get to second tier nomenclature (phenotypes classifying different etiologies). For instance, we can describe:
- Reactive Pelvic Muscle Contraction
- Involuntary PMC
- Pelvic Muscle incoordination at vaginal introitus
- Non-relaxing Pelvic Floor during penetration
- Protective Pelvic Muscle Contraction • P3MC [Protective Provoked Pelvic Muscle Contraction]
- Protective Involuntary Introital Muscle Spasm (PIIMS)
- iPIIMS [Protective Involuntary Introital Muscle Spasm]
- Genito-pelvic penetration/pain disorder * GP3D
In conclusion: We don’t have to go backwards or STAY BACKWARDS just because of familiarity or because that is how you started!
Now let’s take a look at the argument that Liz gave that “vaginismus is not outdated and continues to be a useful term. Rose Hartzell, Certified Sex Educator & Therapist at San Diego Sexual Medicine also debated this point.
First, Liz reiterated that she and Rose were there to convince the audience that “vaginismus” is still a useful term.
Liz framed her argument as the “TOP 10 REASONS ‘VAGINISMUS’ IS HERE TO STAY”:
10. The definition of vaginismus was satisfactorily improved by Basson et al (2004), who proposed the following based upon the outcome of discussions from an international sexual medicine consensus conference: “Persistent or recurrent difficulties of the woman to allow vaginal entry of a penis, a finger, and/or any object, despite the woman’s expressed wish to do so. The reason is often (phobic) avoidance, involuntary pelvic muscle contraction, and anticipation/fear/experience of pain. Structural or other physical abnormalities must be ruled out/addressed.”
9. It has a VERY long history!
A 1547 work, entitled “The Diseases of Women” may have been the first to describe it as “a tightening of the vulva so that even a woman who has been seduced may appear a virgin” (Trotula of Salerno, 1940).
8. It’s use in research.
We’re going to continue investigating vaginismus to clarify diagnostics, etiology, prognostics, and treatment differences/effectiveness, and we need a clear diagnosis to conduct good research. “Vaginismus” is the clearest diagnosis we have. “Genito-pelvic penetration/pain disorder” is simply too general.
7. It’s to the patients’ benefit that we continue to use the term.
To date, the term is widely used in the online community. Let’s face it, many patients self-diagnosing via online searches, blogs, and support networks. The reality is that even though progress has been made, many healthcare providers are still behind the curve when it comes to diagnosing and treating pelvic/sexual pain. So many patients find their own providers/navigate their treatment initially with the help of the Internet. If we get rid of “vaginismus,” that’s going to create even more road blocks, and patients are going to be more delayed when it comes to getting the right diagnosis, care, etc.
6. Diagnosis serves as starting point and a cornerstone of treatment process
Clinicians need good diagnostic system to begin specific treatment for specific disease/disorder that’s based upon research. With sexual dysfunction especially we often rely on our clinical judgment because diagnostic criteria is already vague. So if you take away the specificity of the term “vaginismus,” it’s going to create more vagueness in our clinical judgment, which is going to affect patients.
5. There are distinct differences between dyspareunia and vaginismus and they should not be lumped together under one umbrella term as the DSM-5 now does with “genito-pelvic penetration/pain disorder”.
4. Why fix it if it’s not broken?
J.M. Sims coined “Vaginismus” more than 150 years ago. It first appeared in third edition of DSM and has remained essentially unchanged and unchallenged until recently.This longevity suggests utility and validity
3. Communication. Communication. Communication.
A multidisciplinary treatment approach is increasingly being used to treat sexual dysfunction, including vaginismus. MDs, PTs, psychologists, sexologists: all of these disciplines play an important role. As a result, substantial communication between providers is a must. “Vaginismus” is a term that is used by most health professionals today. Change that, and clinical communication will suffer. Not to mention the fact that we’re in a healthcare field where we have less time.
2. Lack of evidence.
The proposed new term, genito-pelvic pain/penetration disorder (GPPPD), calls for lumping dyspareunia and vaginismus together. There is little empirical evidence to differentiate between dyspareunia and vaginismus, however there is no empirical evidence for a combined diagnosis either.
1. Don’t we have enough challenges in our field already???
Few clinicians are aware of and/or have interest in genito-pelvic pain and/or sexual dysfunction. There’s a huge lack of available education and training.
For instance, Klaassen and ter Kuile (2009) examined help-seeking behaviors in women with self-reported vaginismus, and found that 70% consulted at least one MD, but <1/3 received a diagnosis. Getting rid of “vaginismus” may make diagnosis more invisible to medical world than it already is.
Overall, the debate was extremely lively! And in case you’re wondering, Team Liz/Rose won by vote of the audience. But the truth is both sides had many fantastic points. At the end of the day, the real win was that so many clinicians were together in a room in the spirit of collaboration.
Now we want to know what you think! Is vaginismus an outdated, useless term??? Or is it here to stay??? Let us know in the comments below!