Vulvodynia – Bladder Pain Syndrome/Interstitial Cystitis

General Discussion

Table of Contents

Centrality of Sexuality to Personal Wellbeing – By Marek Jantos

I always find it intriguing that when asked about the importance of sexuality, 94% of adults indicated that sexual pleasure significantly adds to their quality of life (Marwick, 1999). Yet, the prevalence of sexual problems in the general population and the level of personal dissatisfaction with sexual wellbeing is relatively high and rarely discussed (Phillips, 2000).

If sexual pleasure is in deed so fundamental to happiness and quality of life, it is not surprising to find that almost 90% of women, diagnosed with vulvodynia, attended therapy, motivated by the desire to increase the frequency of sexual activity in their relationships (Jantos & Burns, 2008). It is absurd to have people suggest that vulvodynia has a psychological basis and is a reflection of sexual avoidance. Without diagnosis and assistance, vulvodynia patients and their partners experience higher levels of sadness, depression and frustration (Jantos & White, 1997; Jantos & Burns, 2007; Desrosiers et al., 2008). Research consistently highlights the fact that vulvodynia significantly undermines the quality of life women and couples (Arnold et al., 2006, Sargent & O’Callaghan, 2007). By comparison to other vulvar medical problems, the impact of chronic vulvar pain on general wellbeing and sexual function far exceeds that of other problems (Ponte et al., 2009), and is more disabling than other pelvic pain conditions (Meana et al., 1997; Reed et al., 2000). The disorder diminishes a women’s sense of wellness, it impacts on relationships, and gives rise to isolation and loneliness (Sargeant & O’Callaghan, 2007; Desrosiers et al., 2008; Jantos & Burns, 2007).

Yet, sexual health is one of the last frontiers of wellness to be studied and one of the last disciplines of human physiology to be scientifically investigated (Markos, 2005). The centrality of sexual wellbeing needs to be more recognized within the health care system (Parish & Clayton, 2007).

Assessment of Sexual health – Professionals Need to be Proactive – By Marek Jantos

Sexual health can be easily overlooked in health training and medical practice. In part this may be due to patients and doctors being hesitant to communicate about sexual issues, fearing that raising matters of sexuality may cause the other party embarrassment. As as result, this important aspect of wellbeing does not receive adequate attention.

The need to address sexual health matters, especially in relation to women’s sexuality, is highlighted by the prevalence of problems reported in research studies. Estimates of sexual difficulties among women range from 19-50% in “normal” patient populations, and increase to 68-75% when sexual dissatisfaction is included (Phillips, 2000). The high prevalence of sexual problems noted in survey samples is not reflected in patient notes and medical reports. In one study, general practitioners had recorded sexual problems in only 2% of their case notes; while in another study, where physicians were trained to take a sexual history, 53% of patients were noted as having problems. It is evident that when clinicians make inquiries of patients about their sexual health, the prevalence of reported problems increases significantly. In order to detect patient concerns and difficulties, explicit questions need to be asked by the clinician during routine health assessment (Schultz et al., 2005).

The most common female problems identified in surveys relate to: low desire (77%); low sexual arousal (62%); inability or difficulty achieving orgasm (56%); and vaginal dryness (46%) (Berman et al 2003). The specialists most frequently approached with these problems were: gynecologists (42%); general practitioners (24%); psychiatrists (12%); and urologists (3%) (Berman et al., 2003).

Several surveys have sought to assess the extent of carer involvement in assessing sexual wellbeing. Findings indicate that both patients and doctors expressed an unwillingness to raise matters of sexual importance. In a survey of almost four thousand women, 40% expressed a reluctance to seek help from a physician in relation to sexual complaints, even though 54% expressed a desire to do so (Berman et al., 2003). In exploring reasons why patients fail to raise matters of sexual issues with their carer, a study found that 75% believed that their doctor would dismiss their sexual health concerns, or that such issues would embarrass them (Marwick, 1999). These beliefs appear to be validated in part, by reports showing that when patients raised concerns about their sexual health, and the physician was unprepared to hear them, they were met with embarrassed silence, misinformation, surprised or shocked reactions, personal discounting or belittling (Berman et al., 2003).

The practitioners on their part also cite various reasons for avoiding sexual issues during medical screening. The most common of these include: lack of training, insufficient knowledge, lack of information about treatment options, discomfort with sexual language, apprehension that inquiries of a personal nature may offend the patient, and their own personal feelings of embarrassment, as reasons for avoidence (Parish & Clayton, 2007). Yet, 91% of patients were of the view that questions about sexuality were appropriate in the context of health care (Parish & Clayton, 2007).

With such misgivings on the part of the patient and the medical practitioners, sexual health issues are neglected and very few doctors ever take a patient’s sexual health history (Parish & Clayton, 2007). From a health perspective, such unease is not conducive to the early identification of chronic pain disorders such as vulvodynia (Nuns & Mandal, 1996). Physicians and allied health professionals need to be more proactive in creating an environment where the patient’s sexual wellbeing can be discussed (Phillips, 2000).

A Controversial Question: Is the Pain Sexual or is the Sex Painful? – By Marek Jantos

Personally I have never subscribed to the psychogenic origin of chronic urogenital pain. I suspect that most professionals who do, do so on account of their lack of understanding of the nature of chronic pain. Characteristically, clinicians and medical specialties are guided in their approach to chronic pain disorders by their individual assumtions about the nature of chronic pain. This is well illustrated in the case of gynecology and psychiatry when it comes to lower tract urogenital pain. Traditionally, the strategy in gynaecology was to look for organic causes of pain and in their absence to assume psychogenic etiology (Binik, 2003). In psychiatry pain was seen as psychogenic unless there was evidence of medical causes. But the gynaecological and psychiatric views of sexual pain differ in one other important way. In gynaecology the focus is on the anatomical structures affected, whereas in psychiatry it shifts away from the location of the pain and focuses on the activity with which the pain is associated, thus labelling urogenital pain conditions such as vulvodynia as “sexual pain” (Binik, 2003).

The listing of so called “sexual pain” disorders in the DSM classification system, raises the important question of whether a special type of pain exists, that is sexual in nature, and therefore warrants inclusion in psychiatric nosology. The psychiatric classification assumes that such a unique form of pain exists. In questioning this assumption, some have argued that if there is a pain that is indeed sexual in nature, it should be possible to induce the pain not only by sexual activity but also by sexual thoughts and sexually related feelings (Binik et al., 1999). Furthermore, if sexual pain exists, then by implication, other categories of pain may also exist that can be defined by the activity that triggers the pain, including, eating pain, work pain, or sports pain. Yet, sexual pain disorders are the only forms of chronic pain noted in the psychiatric classification system (Binik, 2003). What determines the sexual nature of this pain condition or why it should be considered a sexual dysfunction is not clear, but its inclusion in the DSM classification system creates much ambiguity and confusion (Moser, 2005).

In relation to dyspareunia, the DSM lists pain as the primary diagnostic feature of the disorder but provides no suggestion as to its causes, or underlying mechanisms. The psychiatric classification system makes no reference to the fact that genital pain can exist in the absence of sexual activity, and can be triggered by other activities that are non sexual, such as the use of tampons, wearing of tight clothing, sitting for prolonged periods, undergoing medical examinations, and other general day-to-day activities (Sandownik, 2000). All of these non-sexual activities are known triggers of vulvar pain, and are known to exacerbate the severity of symptoms.

From an historical perspective, it is interesting to note that while medical accounts of chronic vulvar pain from the 18th to early 19th century attributed the pain to such physiological causes as “hyperesthesia” and “abnormal sensitiveness,” none of the reports attributed its etiology to psychological factors (Thomas, 1874; Skene, 1898). This is well illustrated in a case study presented by Sims in 1861 and cited in a recent discussion paper (Binik et al., 1999). The case is that of a patient who though married for a quarter of a century, remained a virgin because of her vulvar pain symptoms. In his account, Sims states; “Amongst other investigations of her, I attempted to make a vaginal investigation but failed completely. The slightest touch at the mouth of the vagina producing most intense suffering. Her nervous system was thrown into great commotion: there was a general muscular agitation; her whole frame was shivering…She shrieked aloud, her eyes glaring wildly, while tears rolled down her cheeks and she presented the most pitiable appearance of terror and agony. Notwithstanding all these outward involuntary evidences of physical suffering, she had the moral fortitude to hold herself on the couch, and implored me not to desist from any efforts if there was the least hope of finding out anything about her inexplicable condition. After pressing with all my strength for some minutes, I succeeded in introducing the index finger into the vagina up to the second point, but no further. The resistance to its passage was great, and the vaginal contraction so firm, as to deaden the sensation of the finger, and thus the examination revealed only an insuperable spasm of the sphincter vaginae.” (In Binik, 1999, p. 212).

In this account, the pain was seen as mediated by physiological mechanisms, namely muscular reactivity of unknown etiology. There is no insinuation that the pain had a psychological origin, nor is there any allusion to it being a “sexual pain” even though the pain was regional and affected the vaginal introitus.

The “sexualizing” of urogenital pain appears to be a post Freudian phenomenon (Binik et al., 1999: Binik, 2005). It reflects a past theoretical perspective which dates back to: “a less enlightened era of medicine in which women’s reports of pain were much more likely than men’s to be met with some form of the ‘it must be in your head’ explanation from their doctors, including gynaecologists…Genital pain was thus vulnerable to being read as a manifestation of disturbances of women’s minds and social relationships, rather than an organic ailment” (Kaler, 2005, p. 35).

The literature from the mid 1900’s manifests a trend by which dyspareunia is included under the general rubric of frigidity, hysteria and manipulative sexual avoidance behaviour (Fenichel, 1945). On the basis of this perspective it was suggested that: “The dyspareunic patient must be helped to see for herself that the hyperesthesia is a fiction and that the pain is of her own making” (Malleson, 1954, p. 390). The statement fully attributes the cause of vulvar pain to psychological factors.

In more recent publications, Dodson and Friedrich, in a 1978 paper entitled Psychosomatic Vulvovaginitis argued that vulvar pain is a psychosomatic disorder (Dodson & Friedrich, 1978). They stated that “Psychosomatic vulvovaginatis is a real clinical entity that should be suspected in any patient whose vaginal complaints do not correlate with the physical findings.” The authors were of the view that chronic pain must be accompanied by visible pathology; otherwise, its absence is evidence of psychogenic aetiology. The evidence cited to support their view is as follows:

  • the pain was characterized by persistent symptoms of longstanding duration,
  • it lacked any demonstrable pathology,
  • was typified by sexual inactivity arising from symptoms,
  • resulted in unsuccessful consultation with multiple physicians,
  • showed reluctance to accept a psychophysiological explanation of its cause,
  • showed allergy to many common vaginal preparations and,
  • many of the patients exhibited psychological difficulties including emotional lability and dependence.

The authors went on to comment that “The patient often pleads for help but is absolutely resistant to any suggestion that her symptoms might be psychologic in origin” (Dodson & Friedrich, 1978, p. 23s). Furthermore, claims that they would enjoy sex and would resume normal relations if they were cured of their disease were seen as inconsistent.

Published accounts consistently document a refusal by women to accept the psychogenic origin of their pain and evidence shows that the primary motivation for seeking a diagnosis and treatment is a desire to resume and increase the level of sexual activity (Jantos & Burns, 2007). However, Dodson and Friedrich concluded that patients: “…manifested signs of neurosis, dependant personality, guilt feelings, emotional lability, while denying psychologic difficulties… these patients receive secondary gain from their symptom complex, i.e., a reason not to engage in sexual activity. As a consequence, they are understandably reluctant to accept any treatment that might destroy the defence mechanism that they have unconsciously constructed…Patients with persistent or incapacitating symptoms however, should be promptly referred to psychiatric care” (Dodson & Friedrich, 1978, pp. 24s-25s). The statement implies that vulvodynia patients engage in “pain games” and “psychosomatization for secondary gain.”

The specific presentation features of vulvar pain reported by by Dodson and Friedrick (1978) are consistent with current accounts of vulvodynia; but their conclusions about the psychological origins of the disorder continue to be unsupported.

In less than ten years, Friedrich’s perspective on vulvar pain changed significantly, as was evident from his landmark paper Vulvar vestibulitis syndrome and his subsequent publications (Friedrich, 1987, 1988). Friedrich’s published criteria for the diagnosis of vulvar vestibulitis syndrome focused solely on physiological changes in the vulva and made no allusion to a psychological etiology. His published criteria have aided the development of a more systematic study of vulvodynia.

However, patients still continue to be told that they are “frigid, sexually dysfunctional, repressed, or otherwise sexually abnormal because they experienced pain,” and based on their encounters with medical practitioners, the pain appears to be generalized into diagnoses that imply that their entire sexual being is somehow sick (Kaler, 2005, p. 35). Recent publications continue to argue that a lack of demonstrable pathology is the basis for assuming a psychogenic etiology (Schrover et al., 1992; Mascherpa et al., 2007; Lynch 2008). A dualistic perspective of chronic pain appears to lead to the common sexualizing and psychologizing of lower urogenital tract pain.

Furthermore, it is not uncommon for views on female dyspareunia to frequently reflect a gender bias. Even though dyspareunia is a disorder that affects both men and women, there appears to be an implicit assumption that it does not exist in men, and if men do experience pain, it is “real” and therefore should not to be diagnosed as dyspareunia (Townsend, 2005). It has been claimed that in women dyspareunia is more likely to involve psychological factors than is male dyspareunia (Abarbanel, 1978). Why the same chronic pain condition should have a greater psychological content in its etiology for women than for men, is not clear. Such gender bias has not helped advance the understanding of vulvodynia.

Literature reveals a continued polarization of views on the potential links between “organic” and “psychogenic” contributors to the etiology of vulvodynia symptoms. There is an ongoing failure to see the experience of pain as consisting of both somatic and psychological aspects and to treat it accordingly (Merksley & Bogduk, 1994). Instead, proponents of physiological causes of vulvar pain argue that the prevalence of psychological variables in the etiology of pain is low or negligible (Bohm-Starke et al., 1998; Lowenstein et al., 2004), whereas proponents for psychological causes minimize the physiological links, asserting a prevalence of psychological variables (Schrover et al., 1992; Lynch, 2008). It appears that the attribution of pain to psychological causes, when pathology is not evident, may arise in part on account of poor understanding of the nature of chronic pain (Steege, 1998; Jantos, 2007); the “physician’s inability to make a specific diagnosis, his inability to relieve the pain, his unwillingness to listen” (Lynch, 1986); and the patients visibly depressed and tearful state (Edwards, 1997). However, none of these reasons justify classifying pain as a psychiatric disorder or sexualizing its etiology (Binik, 2005). Pain needs to be classified according to the guidelines applicable to chronic pain nosology and managed according to the primary presenting symptom – which is pain.