Treating Women with Genito-Pelvic Pain/ Penetration Disorder: Influences of Patient Agendas on Help-seeking

Special Article - Community Healthcare

J Fam Med. 2015;2(4): 1033.

Treating Women with Genito-Pelvic Pain/ Penetration Disorder: Influences of Patient Agendas on Help-seeking

Bond KS¹, Mpofu E1,2* and Millington M¹

¹Health Sciences and Global Populations, University of Sydney, Australia

²Community Oriented Prevention Science Research Group, University of Sydney, Australia

*Corresponding author: Mpofu E., Health Sciences and Global Populations, University of Sydney, Australia

Received: May 09, 2015; Accepted: June 17, 2015; Published: June 19, 2015


This study sought to investigate the help-seeking experiences and motivations of women seeking treatment for Genito-Pelvic Pain/Penetration Disorder (GPPPD) that are important for coping with this chronic health condition in community health care settings. Genito-Pelvic Pain/Penetration Disorder (GPPPD) is a common chronic genital pain condition, affecting anywhere from 3-18% of women in the general population, that can cause significant personal and relational burden. Twenty-six Australian women with GPPPD (50% with provoked and localized vulvodynia; age range 19-43 years) participated in either two interviews or an on-line survey designed to gather information about treatment seeking for GPPPD. Data was thematically analysed using grounded theory and phenomenological methods. The women reported treatment support from a variety of community health care professionals (HCPs), and which support they perceived as not always helpful. Three consultation expectancies were identified. First, that the HCP would validate the reality of their symptoms to comprise a treatable condition, second that an HCP who was knowledgeable about GPPPD likely would be patient centered, and third that a strong treatment alliance with the HCP was important for the successful management of GPPPD. GPPPD can cause significant personal and relational burden, and those afflicted require responsive community health services for health related quality of life.

Keywords: Genital pain; Penetration disorder; Community health care; Treatment experiences; Help seeking expectations; Patient agendas


GPPPD: Genito-Pelvic Pain/Penetration Disorder; HCP: Health Care Provider


Women with Genito-Pelvic Pain/Penetration Disorder (GPPPD) typically seek treatment support from community health care providers [1]. While women often consult community or family doctors, research indicates that they may consult with other allied health professions. For instance, women with GPPPD may consult general practitioners, gynecologists, sex therapists, psychologists and physiotherapists [2], who may be working in primary or community health care settings. Women with GPPPD are a hidden population of patients in that many may not seek consultation from not recognizing their health condition as treatable, not being believed in their claims to be with a health need, or from fear of being socially stigmatized [1]. As a hidden population, women with GPPPD are at risk for poor or suboptimal health care by community health care services.

There is increasing interest by community health service providers to collect and use data on patient experiences for quality care improvement [3-6], and include data important for the quality care of hidden community women with GPPPD. If untreated, GPPPD can negatively impact personal well-being or health related quality of life [7]. Patient self-reported experiences of health care data are also useful for determining whether there are service quality gaps in patient-oriented care and what service qualities would bridge identified gaps as part of quality care improvement. This study sought to address this research gap by exploring the factors that influence treatment uptake and adherence for women who are seeking treatment for GPPPD.

Genito-Pelvic Pain/Penetration Disorder

A GPPPD diagnosis requires a six month history of at least one of four symptoms (see DSM-5): 1. difficulty with vaginal penetration, 2. marked genital or pelvic pain during attempted or actual intercourse, 3. significant fear of pain as a result of vaginal penetration, and 4. tensing or tightening of the pelvic floor muscles during attempted vaginal penetration [8]. GPPPD is a new diagnosis that subsumes a number of diagnoses, including vulvodynia and vaginismus [9, 10]. Vulvodynia is defined as “vulvar discomfort, most often described as burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable, neurologic disorder” [11]. It can be further classified as [11]:

Vaginismus was defined as “recurrent or persistent involuntary spasm of the vagina’s musculature making intercourse painful or even impossible, despite the woman’s expressed wish for penetration” and could also have been classified as primary or secondary [9]. The ‘spasm’ of vaginismus could not be reliably measured leading to the removal of the diagnosis of vaginismus from the DSM-5 [12]. The omission of the diagnosis of vaginismus occurred after the data collection phase of this study, therefore the diagnosis of vaginismus will be maintained.

Given the fact that GPPPD is a newly documented diagnosis, its prevalence is still to be ascertained [13]. However, prevalence studies for vulvodynia and vaginismus can give some guidance. Prevalence of vulvodynia varies from 3-18 % of the general population, and up to 46% in a clinical population [14-18]. Researchers estimate that 1-6% of women worldwide have vaginismus [9, 19-21], with prevalence in clinical settings being between 5-17% [19, 22].

Between 6% and 54% of women with genital pain symptoms seek treatment [14, 18, 23-25]. Women who seek treatment report that receiving a diagnosis and finding effective treatment can be elusive and lead to significant personal distress [26, 27]. Unmet patient agendas may be a contributing factor in this distress, although no studies have examined the treatment-seeking agendas of women with GPPPD.

Women with GPPPD are at risk for suboptimal health care in that the condition is often contested by health care professionals (HCPs) and people in the woman’s social network [26, 28,29]. For instance, women with GPPPD perceive to be disbelieved by HCPs as to the nature and severity of their symptoms [26]. The intimate nature of GPPPD and the fear of such judgement and stigma [30] could delay or interrupt treatment-seeking. Treatment-seeking can impose a subjective burden on women beyond the physical, as the person’s sexuality, relationships and self-perceptions as a sexual partner [7, 30, 31] are exposed to external threat. Women may also experience relationship burden when attempting to protect their intimate relationship with little to no social support from significant social others. These burdens may lead to delay or interruption of treatment seeking for GPPPD. For those who do seek treatment, the quality of their interactions with HCPs, as well as their history of consultation, may impact their access to the care services they need and deserve [32].

Consultation Agendas for Treatment Seeking

Patient agendas, or the implicit and explicit perceptions people bring to the medical consultation, include the patient’s expectations, feelings and fears about their health status [33]. These consultation expectancies are in part influenced by their treatment seeking history and important to understanding patient responses to treatment uptake and adherence [34]. Yet, eliciting patient expectancies or agendas is often neglected by HCPs [35]. Unmet patient agendas are associated with poorer health outcomes [36] and lower patient satisfaction [37-40]. For the community HCP, the cost of unmet patient agendas includes more demanding consultations [41] and avoidable patient drop out [34, 42-44].

Patients often overlay multiple consultation expectancies, with some of these agendas unvoiced [40]. HCPs may believe that patients come to them for a specific action (e.g., prescription, test or referral) [40], however the literature suggests there may be other agendas at work. Surfacing patient agendas requires that HCPs provide information and clinical expertise [39, 45, 46], explore psychosocial needs [47, 48], take physical symptoms seriously [48], and listen to and empathise with patient concerns [27, 45, 49].

One way of meeting the health care needs of women with GPPPD is to understand and address their consultation expectancies or agendas [34]. Community HCPs who are able to discern and address their patients’ agendas are more likely to effectively address patient concerns [33]. Although previous qualitative research has explored the treatment seeking experience of women with GPPPD e.g. [26], specific consultation agendas have not been elucidated. Therefore, the aim of this research was to characterise patient agendas important for the successful treatment of GPPPD. The study was guided by the following questions: (1) What are the consultation agendas of women patients with GPPPD? and (2) How do these agendas vary according to GPPPD symptoms and treatment seeking history? The findings may be of clinical significance in guiding and supporting patient oriented care by health care providers with woman with GPPPD.


Research design

Qualitative inquiry was used to explore the lived experiences of women seeking treatment for GPPPD; specifically, a grounded theory approach [50, 51] within the context of a phenomenological exploration of the woman’s experience of treatment seeking for GPPPD. A lived experience approach is able to best characterise treatment seeking agendas in community health care settings from the perspective of the woman by capturing the common meanings and features for these women [52].

Participants and setting

Participants were 26 community women with GPPPD - 13 women (50%) with provoked and localised vulvodynia, 9 (35%) with unprovoked and generalised vulvodynia and 4 (15%) with vaginismus. The average age of the participants was 27, with a range of 19-43 years. Nineteen of the women (73%) were in long-term relationships (see Table 1 for a summary of the demographic information).

Citation:Bond KS, Mpofu E and Millington M. Treating Women with Genito-Pelvic Pain/ Penetration Disorder: Influences of Patient Agendas on Help-seeking. J Fam Med. 2015;2(4): 1033. ISSN : 2380-0658