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Female Genital Pain:

Female Genital Pain:. Distress and Treatment Seeking. Faculty of Health Sciences The University of Sydney. Ms. Kathy Bond, PhD Candidate Dr. Elias Mpofu Dr. Patricia Weerakoon Dr. Russell Shuttelworth. Female Genital Pain: Distress and Treatment Seeking. Introduction: Genital Pain.

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Female Genital Pain:

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  1. Female Genital Pain: Distress and Treatment Seeking Faculty of Health Sciences The University of Sydney Ms. Kathy Bond, PhD Candidate Dr. Elias Mpofu Dr. Patricia Weerakoon Dr. Russell Shuttelworth

  2. Female Genital Pain: Distress and Treatment Seeking Introduction: Genital Pain Genital Pain: • Vulvodynia • Vaginismus

  3. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Distress: • Distinguishes between a sexual problem and normal variation Mitchell, K., & Graham, C. A. (2008). • Has implications for treatment seeking, motivation for therapy and prognosis Basson, R. et.al. (2003); Basson, R. et. al. (2004).

  4. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Distress in the DSM: • DSM IV - ‘‘the disturbance causes marked distress or interpersonal difficulty” • DSM V - ‘‘clinically significant distress or impairment’’

  5. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Three types of distress evident in the literature: • Psychological distress • Sexually related personal distress • Relationship distress Bond, K. S., Weerakoon, P., & Shuttleworth, R. (2012).

  6. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Psychological distress: • present in some but not all women Bond, K. S., Weerakoon, P., & Shuttleworth, R. (2012). • Conflicting literature Bond, K. S., Weerakoon, P., & Shuttleworth, R. (2012). • Range of manifestations of distress Brotto, L. A., Basson, R., & Gehring, D. (2003); Granot, M., & Lavee, Y. (2005).

  7. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Sexually related personal distress: • Negative and distressing feelings that a woman may experience about her level of sexual function Hayes, R. (2008). • Measured using the Female Sexual Distress Scale (FSDS)

  8. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Relationship distress: • Dissatisfaction with the relationshipOberg, K., & Fugl-Meyer, K. S. (2005). • Negative feelings during sexual interaction Bancroft, J., Loftus, J., & Long, J. S. (2003). • Relationship distress is evident in the qualitative research Ayling & Ussher, (2008); Elmerstig et al., (2008)

  9. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Relationship distress (cont): • Partner reaction (solicitous or hostile) Stephenson, K. R., & Meston, C. M. (2010). • positive relationship factors have a protective affect against distress Hayes, et al., (2008); Stephenson & Meston, (2010).

  10. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Percentage of women who are distressed by their sexual dysfunction: • 32% of women with low desire • 31% with low arousal (lubrication) • 33% with orgasm difficulty • 57% with genital pain Hayes, R. D., Dennerstein, L., Bennett, C. M., & Fairley, C. K. (2008).

  11. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress Why? • Limits sexual intercourse • Increased burden of sexual dysfunction • Affected sexual self-schemaGates, E. A., & Galask, R. P. (2001); Meana, M., Binik, Y. M., Khalife, S., & Cohen, D. R. (1997). • Pain is distressing Bond, K. S., Weerakoon, P., & Shuttleworth, R. (2012).

  12. Female Genital Pain: Distress and Treatment Seeking Introduction: Treatment Seeking Delay in seeking treatment: • Pain is normal or might go away • Doubt that it is a medical problem • Did not want others to know they were having sex • Fear of stigma of a sexual problem Donaldson, R. L., & Meana, M. (2011).

  13. Female Genital Pain: Distress and Treatment Seeking Introduction: Treatment Seeking Reasons for seeking treatment: • Desire for vaginal penetration (for self or partner) • Conception • Concern for impact on relationship Reissing, E. D. (2011).

  14. Female Genital Pain: Distress and Treatment Seeking Introduction: Treatment Seeking Rates of treatment seeking: • Between 5.6% and 54% of women with genital pain seek treatment Ogden, J., & Ward, E. (1995); Harlow, B. L., & Stewart, E. (2003). • Methodological differences likely to be the reason for the discrepancy

  15. Female Genital Pain: Distress and Treatment Seeking Introduction: Treatment Seeking Treatment seeking journey: • Multiple practitioners – up to 15Harlow, B. L., & Stewart, E. (2003); Buchan, A., et.al (2007). • Multiple treatments – up to 21 different types of treatment Reissing, E. D. (2011). • Exacerbation of symptoms and increased personal and relationship distress Buchan, A., et.al. (2007); Connor, J. J., Robinson, B., & Wieling, E. (2008); Marriott, C., & Thompson, A. R. (2008). • 24 months to diagnosis Buchan, A., et.al. (2007).

  16. Female Genital Pain: Distress and Treatment Seeking Introduction: Distress and Treatment Seeking • Literature is silent • Pain coupled with distress increases the likelihood of seeking treatmentEvangelia, N.,et.al. (2010).

  17. Female Genital Pain: Distress and Treatment Seeking Methodology: Justification Empathy: • Understanding the woman’s experience • Crucial to a good therapeutic relationship • Influence health outcomes Mercer & Reynolds, (2002); Reynolds & Scott, (1996).

  18. Female Genital Pain: Distress and Treatment Seeking Methodology: Research Questions From the woman's point of view: • What is the intensity and quality of distress experienced by the woman who is seeking treatment for her genital pain? • What is the interplay between distress and treatment seeking?

  19. Female Genital Pain: Distress and Treatment Seeking Methodology: Research Questions Research questions (cont): • How does distress impact treatment seeking? • How does treatment seeking impact distress levels?

  20. Female Genital Pain: Distress and Treatment Seeking Methodology: Research Design Grounded Theory: • Predicts and explains human behaviour • Gives the practitioner understanding and some control in their work • Guides future research Glaser & Strauss, (1967); Hall & May, (2001); MacDonald & Schreiber, (2001).

  21. Female Genital Pain: Distress and Treatment Seeking Methodology: Research Design • Female Sexual Distress Scale • Two In-depth, phone or in-person interviews, spaced between 4 and 8 weeks apart

  22. Female Genital Pain: Distress and Treatment Seeking Methodology: Recruitment • Melbourne Sexual Health Clinic (n=1) • The Action Centre, Melbourne (n=1) • Biofeedback practitioner (n=3) • Advertisement in the University of Sydney e-Newsletter (n=4) • Word of mouth (n=2)

  23. Female Genital Pain: Distress and Treatment Seeking Results: Participants • n=11 • Average Age = 24.5 (range 19-33) • All educated (completed or completing tertiary study) • Middle-class backgrounds

  24. Female Genital Pain: Distress and Treatment Seeking Results: Participants • Anglo-Australian (n=6), Canadian-Australian (n=1), Chinese-Australian (n=1), Iranian-Australian (n=1), Canadian (n=1), German (n=1) • All but one in a long-term, hetero-sexual relationship

  25. Female Genital Pain: Distress and Treatment Seeking Results: Participants • Generalised Vulvodynia (n=5) • Provoked Vulvodynia (n=5) • Vaginismus (n=1)

  26. Female Genital Pain: Distress and Treatment Seeking Results: Overview Themes: • Validation • Hope

  27. Female Genital Pain: Distress and Treatment Seeking Results: Validation Validation: • Associated with a contested illness, such as vulvodynia and vaginismus • Occurs both within the woman as well as within the context of the relationship with the health professional and others Ware, (1992).

  28. Female Genital Pain: Distress and Treatment Seeking Results: Validation The act of listening was central to validation: • Listening to the pain involved normalising and minimising the pain • Listening to the woman involved believing and supporting the woman

  29. Female Genital Pain: Distress and Treatment Seeking Results: Validation Normalising the pain: • I am exagerating the pain “[I felt like] maybe [it’s] a somewhat normal feeling, like that the pain wasn’t really that much to complain about.” (P6)

  30. Female Genital Pain: Distress and Treatment Seeking Results: Validation Normalising (cont): • Painful first sex “Yeah um I probably, I think because [my husband] was my first and I had read a lot, you know, it hurts the first couple of times [I put off seeking treatment.]” (P2)

  31. Female Genital Pain: Distress and Treatment Seeking Results: Validation Normalising (cont): • Pain with sex is normal for me “I never really enjoyed sex before...I just thought you know, we’ll have sex, I’ll be hurting for like an hour or so after, and then it will go away.” (P3)

  32. Female Genital Pain: Distress and Treatment Seeking Results: Validation Minimising (cont): “[The doctor] made some comment like, 'it will be interesting to see what happens after you have a baby because your pain threshold changes.’ And I thought...I can’t even have sex......It sort of made me feel like I was hypersensitive to the pain or that I couldn’t cope.” (P9)

  33. Female Genital Pain: Distress and Treatment Seeking Results: Validation Believing the woman: “I was like, ‘Fine, I'll take the thrush medication’...I’d had thrush before...knew what [thrush] was and also like they had done the thrush test and I [didn't have it].” (P1)

  34. Female Genital Pain: Distress and Treatment Seeking Results: Validation Supporting the woman: “[The doctor] was really empathic and she was very knowledgeable...she cared, she listened to every aspect of it. I can’t remember what treatment she gave me, I can’t really remember what we ended up doing but it was the emotional side of it that was the best part.” (P9)

  35. Female Genital Pain: Distress and Treatment Seeking Results: Hope Hope is: • A way of thinking, feeling and behaving • Experiential, transcendental, rational and relational Farran, Herth, & Popovich, (1995)

  36. Female Genital Pain: Distress and Treatment Seeking Results: Hope Attributes of hope: “I hadn’t done physio. I think it was the cost that put me off...[but there was a] point at which I decided to completely throw myself head first into the situation...to not worry about the cost...and to not see the exercises as wasted time and...failed attempts and just to like forge on...I guess try everything out.” (P5)

  37. Female Genital Pain: Distress and Treatment Seeking Results: Hope Factors affecting hope: • Expereience of treatment • Interaction with health professional

  38. Female Genital Pain: Distress and Treatment Seeking Results: Hope Experience of treatment: “I didn’t really feel like [the physio] was going anywhere, like it was so slow. [I'm not noticing] any improvements. It's just disheartening...it all takes such a long period of time.” (P1)

  39. Female Genital Pain: Distress and Treatment Seeking Results: Hope Experience of treatment (cont): “It is not like if you have an actual muscular problem in your back or legs, you can tell day to day if it is making a difference...The problem with the physio [is that] it is quite difficult [to see progress] and so it is hard to keep motivated with it.” (P9)

  40. Female Genital Pain: Distress and Treatment Seeking Results: Hope Experience of treatment (cont): “I remember the last time I went to the [physio]. She said I was responding really well and um, and I felt really good about that. Then maybe two weeks later we tried to have sex and it hurt, and I was like, ‘This is not over.’ And I felt really, really down.” (P2)

  41. Female Genital Pain: Distress and Treatment Seeking Results: Hope Experience of treatment (cont): “For years I’ve been doing this stuff (treatment) for the end result of having pain free sex and I had gotten there! I’m not completely cured...but, it was proof that there is light at the end of the tunnel. And then I started to think that maybe this experience is going to be beneficial for my sex life you know...I’ll view sex from a different perspective...I won’t take it for granted.” (P2)

  42. Female Genital Pain: Distress and Treatment Seeking Results: Hope Interaction with the health professional: “The first [gynaecologist] seemed kind of helpless... like ‘what are we going to do with you’...I reached that point that I said 'no, it is useless, I don’t want to go to her anymore.' I haven’t had that feeling that my new gynaecologist because she just manages to give me a feeling of confidence, of like, we are getting there, just be patient.” (P10)

  43. Female Genital Pain: Distress and Treatment Seeking Results: Hope Interaction with the health professional (cont): “I saw one of [my gynaecologist’s] colleagues and she took one look at me and said that I would never have normal sex again...I found that really distressing.” (P9)

  44. Female Genital Pain: Distress and Treatment Seeking Results: Hope Interaction with the health professional (cont): “[The doctor] said that she wasn’t going anywhere, that she would support me through this. That together we would move forward.” (P9)

  45. Female Genital Pain: Distress and Treatment Seeking Limitations • Small sample size • Homogeneous • Age range

  46. Female Genital Pain: Distress and Treatment Seeking Discussion and Conclusion ? ? ? Distress Treatment Seeking

  47. Female Genital Pain: Distress and Treatment Seeking Discussion and Conclusion • Validation and hope can decrease distress and shorten the time to diagnosis and effective treatment • Similar processes of validation occur in people with chronic fatigue syndrome, hypothyroidism and endometriosis Burlow, (2008); Hyden & Sachs, (1998); Ware, (1992; Milliken & Northcott, (1996) and Manderson, Warren, & Markovic, (2008)

  48. Female Genital Pain: Distress and Treatment Seeking Discussion and Conclusion • Hope can impact mood modulation and life satisfaction (Chang, 2003), or influence recovery of an illness, such as stroke (Bright, Kayes, McCann, & McPherson, 2011) or chronic back pain (Corbett, Foster, & Ong, 2007). • Treatment success and the health professional could have similar influence on the hope of stroke victims. Bright et al (2011)

  49. Female Genital Pain: Distress and Treatment Seeking References Thankyou! If you would like a copy of the reference list please email me at: kbon3355@uni.sydney.edu.au

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