APPENDIX
Testosterone use was explored through the questions “What date (approximately) did you start testosterone therapy?” and “What type of testosterone are you currently using?” with fixed-response options that included all commonly available forms of testosterone (injections, gels/creams, implants). Participants were also asked “How have you been using testosterone?”, with the multi-choice options of consistent, intermittent or ‘other’ use, and “What dose of testosterone are you on?” with fixed-response options of full, half, quarter or ‘other’ dose. Testosterone blood levels were ascertained with the question “What were your testosterone levels on your most recent blood test? [nmol/L]”.
Experiences of pelvic pain before using testosterone were assessed with fixed-response options (always or almost always, sometimes, never) to “Did you ever experience pelvic pain prior to starting testosterone therapy?”. Those participants who indicated they experienced menstruation before starting testosterone, were also asked fixed response options (always, almost always, sometimes and never) to “Did you experience pain around the time of bleeding/periods? (i.e. in the couple days before or during bleeding/periods)”, “Did you experience pelvic pain between bleeding/periods?” and “Did you experience pelvic pain at or around the time of ovulation?”. Participants were also asked to rate their pain with on a scale of 0 to 10 with 10 = most severe pain.
Experiences of pelvic pain since the commencement of testosterone GAHT were assessed with fixed response options (always or almost always, sometimes, never) to “Have you experienced pelvic pain since commencing testosterone therapy?”. Those participants who experienced pelvic pain since commencement of testosterone, were then asked to rate the severity of this pain on a scale of 0 to 10, with 10 = most severe pain. Those who reported pelvic pain both prior to and since commencement of testosterone, were asked “How does the pelvic pain you experience using testosterone compare to the pelvic pain you experienced prior to starting testosterone?” on a scale of 0 = much less severe to 10 = much more severe. Participants were also asked to describe their pain from fixed-response options, and to ascertain the location of the pelvic pain, participants were asked to locate the pain on a diagram of the abdominal and pelvic regions (Figure 1).
The effectiveness of treatment strategies were assessed with fixed-response options to “What treatment or strategies (if any) have eased your pelvic pain?” and “What treatments or strategies have you tried that have not worked?”.
The effect of testosterone use on menstruation was assessed by asking those participants who reported experiencing bleeding/periods prior to starting testosterone to provide a Yes or No response to “Have your periods/bleeding stopped since starting testosterone?”. Those participants who had experienced cessation in menstruation were asked to provide a fixed-response to “How long did it take your periods/bleeding to stop after starting testosterone?”. Participants were also asked if they experienced genital dryness.
Associations between pelvic pain and sexual activity were also explored. Those participants who indicated that they were sexually active (including masturbation) were asked whether they experienced pelvic pain or other pain during a range of sexual activities. This included fixed-response options (always or almost always, sometimes, never) to “Does touching of your external genitalia cause pain?”, “Do penetrative sexual activities, provoke pain?” and “Does orgasm cause pain?”. The impact of pelvic pain on sexual activity was assessed with fixed-response options (always or almost always, sometimes, never) to “Does the pelvic pain stop you or make you consider alternative ways/methods of being sexually active?”.
Diagnosed pelvic conditions were explored to identify potential treatments or factors related to pelvic pain. This included Yes or No responses to “Have you ever had an intrauterine device (IUD)?” , and whether they had ever been diagnosed with endometriosis, vulvodynia (pain in the area around the vulva, not necessarily with touch), or vaginismus (involuntary tightening of the muscles around the vagina, not necessarily with penetration). The number of pregnancies (including miscarriages and terminations) and number of live births was also determined.
Participants were asked if they had previously undergone a hysterectomy or oophorectomy. Those who indicated they had a hysterectomy, were asked “What was the reason for the hysterectomy?” with fixed-response options and “How has the hysterectomy affected your pelvic pain?” on a scale of 0 = pain is far worse to 10 = pain is far better. Similarly, those participants who indicated they had an oophorectomy, were asked “How has the oophorectomy affected your pelvic pain?” on a scale of 0 = pain is far worse to 10 = pain is far better.
To assess any associations between pelvic pain and mental health, participants were also asked whether they had a previous or current diagnosis of post-traumatic stress disorder (PTSD), depression, or anxiety. Self-reported height and weight provided an approximation of body mass index (BMI).