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Women’s expectations and experiences of hormone treatment for sexual dysfunction E. Fooladi, R. J. Bell, A. M. Whittaker* and S. R. Davis Women’s Health Research Program, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria; *School of Social Sciences, Clayton Campus, Monash University, Victoria, Australia Key words: FEMALE SEXUAL DYSFUNCTION, HORMONE TREATMENT, WOMEN’S EXPECTATION, WOMEN’S EXPERIENCES

ABSTRACT Objectives There is a paucity of information regarding women’s expectations of medical treatment for female sexual dysfunction (FSD) and their self-appraisal of treatment outcomes. The aims of this study were to explore women’s perception and expectations of treatment and their experiences of treatment for FSD using a qualitative approach. Methods First-time attendees to an endocrinologist with the complaint of sexual difficulties were identified and were invited to take part in an in-depth interview on the same day as, but prior to, their medical consultation. Follow-up phone interview took place 3–4 months later. Results Seventeen women, aged 26–70 years, participated in the face-to-face interview. Ten of these participated in the follow-up interview. Four major themes emerged from the women’s narrative stories: (1) personal psychological distress associated with FSD, (2) concern about the adverse effect of FSD on the relationship with their sexual partner, (3) a belief in a relationship between FSD and ‘hormone deficiency’, and (4) an expectation of treatment, which included positive physical and sexual changes. Conclusions Health professionals should be aware of the high degree of psychological distress that can result from FSD and consider available treatment options, which may include hormone therapy.

INTRODUCTION The most commonly reported female sexual problems relate to sexual interest, pleasure, and overall satisfaction1–3. In this manuscript, female sexual dysfunction (FSD) is used to cover a spectrum of disorders which may include sexual desire disorder, sexual arousal disorder, delayed orgasm, anorgasmia as well as dyspareunia. FSD has been associated with negative effects on health-related quality of life4, self-esteem, mood, relationships with sexual partners5,6, and general well-being6. In the United States, 24% of postmenopausal women and 8% of premenopausal women who sought professional help for FSD reported using estrogen and/or testosterone therapy as a treatment for low sexual desire7. Oral, transdermal, or vaginal estrogen are the most effective treatment options for vulvovaginal atrophy8. The efficacy of ospemifene, a selective estrogen receptor modulator, in the alleviation of vaginal dryness and dyspareunia has

been demonstrated in several clinical trials9,10. It is currently available in the USA as an FDA approved medication for the treatment of vaginal dryness11. Testosterone, as an unapproved treatment for FSD, is in widespread clinical use12. Randomized, placebo-controlled trials have shown systemic testosterone improves sexual desire, arousal, orgasm frequency, pleasure and overall satisfaction, and decreases FSD-associated distress13–20. Tibolone alleviates vulvovaginal atrophy and may improve sexual interest21. Other interventions that may be effective include sex therapy and counselling7,22. There is a paucity of information regarding women’s expectations of medical treatment for FSD and their selfappraisal of treatment outcomes. The aims of this study were to explore women’s perception and expectations of treatment and their experiences of treatment of FSD using a qualitative approach. We also explored women’s experiences of sexual dysfunction and how they felt it impacted the relationship with their partner.

Correspondence: Professor S. R. Davis, Women’s Health Research Program, School of Public Health and Preventive Medicine, Monash University, 99 Commercial Road, Melbourne, Victoria, Australia 3004; Email: [email protected] ORIGINAL ARTICLE © 2014 International Menopause Society DOI: 10.3109/13697137.2014.926322

Received 27-03-2014 Revised 13-05-2014 Accepted 17-05-2014

Expectations of treatment for female sexual dysfunction

Fooladi et al.

METHODS Study participants Women, aged 18–70 years, who had been referred, for the first time, by their primary-care or specialist physician, to an endocrinologist with expertise in hormone therapy for FSD (S.R.D.) were invited to participate. Women were asked by the reception staff, at the time their appointment was made, if one of the reasons for the consultation related to their sexual well-being. If they answered ‘yes’ to this, they were invited to participate in an interview on the same day as, but prior to, their medical consultation. Participants were informed that this was not a medical interview but a research project separate from their treatment. Women were excluded if they were non-English-speaking or self-identified as having a mental illness.

confirmed by patient records. The names used in this report are not the true participants’ names. The study was approved by the Cabrini Institute Research and Education Ethics Committee, and the Monash University Human Research Ethics Committee, Melbourne, Australia, and all participants provided written informed consent. Recruitment occurred in 2012–2013. There was no payment for participation.

Data analysis A content analysis approach23 using continuous comparison was used to explore the transcripts. Throughout the coding process, a framework was developed and modified as themes emerged. Coding categories were further refined and merged into themes. The investigators then selected specific quotes that exemplified each major theme. The qualitative research computer software NVIVO 10 (QSR International) was used for the analysis.

Study procedures Two interviews were undertaken. Face-to-face interviews were conducted in a confidential setting at Cabrini Medical Centre, Melbourne, Australia. The follow-up phone interview took place 3–4 months later. After receiving oral and written information about the study and providing informed consent, a brief sociodemographic questionnaire was completed by the participants. Both interviews employed guided, semistructured questions and were undertaken by a single investigator (E.F.). Questions addressed women’s experiences of sexual dysfunction, the effects of FSD on their relationship, their expectations of any treatment and their experiences of subsequent treatment (Table 1). The face-to-face and phone interviews lasted 10–20 and 5–10 minutes, respectively. Recruitment continued until ‘saturation’ was reached and no further new information was being obtained. This applied only to the initial face-to-face interview. All interviews were recorded and transcribed ‘verbatim’. Treatment prescribed on the day of the consultation was

RESULTS Participants Seventeen women, aged 26–70 years, participated in the study (Table 2). The average length of face-to-face interview was 15 min (range 7–40 min). Most were in a long-term relationship (median 17 years, range 1.5–45 years). Thirteen out of the 17 women (76%) reported education beyond high school. Two women had underlying medical conditions, Cushing’s syndrome and rheumatoid arthritis, and two other women reported past treatment of breast cancer. Three women had a history of menopause hormone therapy (MHT) plus systemic testosterone. Women reported a range of sexual difficulties (including low libido (most frequent), vaginal dryness and dyspareunia, arousal difficulties, anorgasmia or a combination of these). Three postmenopausal women reported menopausal symptoms (including mood swings,

Table 1 Key questions asked during qualitative interviews Categories

Sample questions

General questions (face-to-face interview) Women’s experiences of sexual dysfunction (face-to-face interview) Women’s expectations of a medical treatment (face-to-face-interview)

Please tell us how you did come to be seeking care in this clinic Describe your sexual problem and what effects it has had on you, your partner and on your relationship What treatment do you expect to be offered today? What do you expect of the potential offering treatment? Is there anything else which you want to add or share?

Women’s experiences after a medical consultation (follow-up phone interview)

What treatment have you been offered? Could you please tell me your experiences of the given treatment? What were the effects of treatment? (on you, your partner, on your relationship, on other aspects of your life) Would you like to continue treatment? Is there anything else which you want to add or share?

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675

676

67

63

62

59

56

54

53

53

51

47

47

46

44

43 34

27

Victoria*,‡

Amy

Clara‡

Simone*

Sophia

Alice

Jade

Adele*

Emma

Stella*

Lina*

Megan*

Charlotte‡

Olivia Evelyn*

Amelia

family violence coordinator home duties registered nurse bar owner

medical practice manager human resources registered nurse no data available teacher

manager

hairdresser

business owner home duties

registered nurse home duties

home duties

home duties

Occupation

pre

pre pre

post

peri

peri

post

post

post

peri

post

post

post

post

post

post

post

single with a partner

married de facto

married

married

married

married

married

de facto

de facto

de facto

married

single with no partner de facto

married

married

married

1.5

14 4

5

25

25

30

20

14

12

23

10

12

0

35

45

45

5

2 1

8

25

26

1

8

10

2

2

10

2

8

5

3

2

Length of Duration Menopause Relationship relationship of SD status status (years) (years)

specialist

GP

specialist

GP

none

none

none

none

Underlying medical condition

estradiol 25 mg⫹ progesterone Provera, systemic testosterone cream estradiol 50 mg⫹ testosterone implant 50 mg estradiol (patch) and micronized progesterone estradiol 50 mg and testosterone implant request for hormone profile

Treatment received†

specialist none (husband) overwhelmed, not coping with GP Cushing’s estradiol patch, micronized stress, low libido syndrome progesterone and systemic testosterone cream painful sexual intercourse GP breast gabapentin plus vaginal estradiol cancer difficulty with menopause (first GP none estradiol patches and micronized on the list) and then with progesterone, vaginal cream, having sex hydrocortisone tiredness, menopause GP none estradiol ⫹ duphaston and systemic symptoms, low hormone testosterone cream levels, low libido low libido, anorgasmia, GP none tibolone ⫹ vaginal estradiol cream dyspareunia low libido after breast cancer specialist breast testosterone vaginal cream ⫹ cancer gabapentin fatigue, low blood testosterone GP none systemic testosterone cream levels, low libido low testosterone levels, GP none systemic testosterone cream tiredness, low libido referred to receive testosterone specialist none estrogen and systemic testosterone and estrogen implant, low cream libido low libido GP none hormone profiles test fatigue, mood swings, low specialist rheumatoid systemic testosterone cream testosterone levels, low libido arthritis spasm after intercourse, vaginal GP none cessation of OCP for 2 months and dryness, low libido switch to a new OCP for a month

referred to receive testosterone implant low libido

low libido

low libido, low estrogen level, itchiness all over body, stress, anxiety referred to receive HRT

Reason for referral

Who referred

*, Phone interview did not take place; †, treatment prescribed on the day of the consultation was confirmed by patient records; ‡, they had previous history of menopause hormone therapy SD, sexual dysfunction; HRT, hormone replacement therapy; GP, general practitioner; OCP, oral contraceptive pill

70

Justine

Age (years)

Characteristics of the study participants

Participant

Table 2

Expectations of treatment for female sexual dysfunction Fooladi et al.

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Expectations of treatment for female sexual dysfunction night sweats and hot flushes) alongside their low libido and dyspareunia.

Emergent themes Four major themes emerged after immersion in the face-toface transcripts: (1) personal psychological distress associated with FSD, (2) concern about the adverse effect of FSD on the relationship with their sexual partner, (3) a belief in a relationship between FSD and ‘hormone deficiency’, and (4) an expectation of treatment, which included positive physical and sexual changes.

Theme one: Personal psychological distress associated with FSD Women consistently reported psychological distress, having low self-esteem, having feelings of guilt, sadness, worthlessness, inadequacy, frustration, disappointment and embarrassment, by the changes they had experienced sexually. ‘I think a feeling of guilt from my point of view and from my husband probably a feeling of not being attractive to me. A feeling of not being adequate maybe’ (Olivia, aged 43). Stella, aged 47, diagnosed with breast cancer 18 months prior, said: ‘I think it’s important for me [to be sexually active] because I still feel very young, I am only 46, and I think it was always because sex was a big part of our life. I think that for me it’s a sad realization that something I expected to happen when I was 70 has happened in my 40s.’ Jade, aged 53, shared: ‘… because it hurts too much I try to avoid sex and it makes you feel inadequate and you start to doubt yourself as whether you are as attractive to your partner or not.’ Associated psychological distress was also reported by older participants. Justine, aged 70, stated: ‘I just do not feel inclined to have sex. I want to approach my husband, to be physical. There is nothing there. I just don’t feel anything at all. You know it has been for a few years now and I just don’t think that’s normal because I am not that old. This is disappointing that I do not like to be touched.’

Theme 2: Concern about the adverse effect of FSD on the relationship with their sexual partner Although most women appreciated their partner’s support, they were concerned about the negative effects of their FSD on intimacy and cited this as a driving factor for seeking medical help. Stella, aged 47 described: ‘… Physically I don’t really feel like I need to be sexually active. I do get concerned about the future and whether it is going to affect the relationship with my husband.’ Also Emma, aged 51 stated: ‘It’s not like our marriage is in trouble because of it, but it is definitely something that we both would like to enjoy and my husband would like more of. It is important for any marriage and relationship. You

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Fooladi et al. still need to have that regardless of how long we’re together whether it’s 10, 20, 30 years. I guess it’s always the thought of hearing other people having regular sex and you say “what’s wrong with me?”.’ Being sexually active was described as an expectation within relationships and some women reported being sexually active for their partner’s fulfilment or desire, not their own. Simone, aged 59, stated: ‘It’s difficult because I think if I didn’t have to do it [sex] I would not ever have to worry about it again, but because I am in a relationship I feel that I have to make a big effort. Probably if I lived on my own I wouldn’t care, but I am in a relationship and I obviously I need to make an effort.’ Likewise, Olivia, aged 43, revealed: ‘Generally I don’t feel the need or any desire for sexual activity. When I am sexually active I feel I am doing it more because it is an expectation rather than it being a need. I don’t feel there is a real need to fulfil myself in that way anymore like I used to, I suppose.’ Sophia, aged 56, graphically described: ‘… I forced myself to try and think but it didn’t work, and so I just felt for my husband. I would do it for him. I get absolutely nothing out of it. I don’t desire any, I don’t feel anything, I don’t get any response, I don’t get any feelings of love, or oneness, or relaxation or whatever the chemicals that are released in the brain. I don’t get any of that. In fact, most of the time, I am in a different space. … when a woman is forced to have sex and she doesn’t want to it causes pain. So what does that mean, I am raping myself, because I am forcing myself to do it and I don’t want to do it.’

Theme 3: A belief in a relationship between FSD and ‘hormone deficiency’ Many women spoke of a ‘lack of hormones in their bodies’ and wanted to have their hormone levels checked (mainly premenopausal women) or to receive MHT and testosterone (mainly postmenopausal women). Some accounts were reduced to a focus upon their individual endocrinology and hormonal treatment. Postmenopausal women, with and without a history of hormone therapy, spoke of their ‘levels’ during the interviews and presented a view of their bodies as chemical batteries and that their hormone levels need to be titrated in order to maintain energy. There was a view that ‘the body is lacking hormones and we women need to use hormones to remain healthy and active’ (Clara, aged 62). She also said ‘… But you are not dead yet, you are still functioning, your body still functions, but when we are menopausal our levels go down and of course you don’t feel like sex. My sister is younger than me and she hasn’t had sex for about 12 years. I would be dying now without that for that long. I would have shrivelled up in a corner somewhere if I hadn’t had sex for that long. But she is still married to her husband but has no inclination. She is well and truly menopausal and she needs testosterone to boost her levels.’ Sophia, 56 years old, said: ‘… when your ovaries start to decline you really have nothing to keep you going. Normal women have adrenal glands to keep you going,

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Expectations of treatment for female sexual dysfunction but if your adrenal glands are exhausted you feel like a car running on empty.’

Theme 4: An expectation of treatment outcomes, which included positive physical and sexual changes Many women viewed hormonal treatment as a ‘magic bullet’. Postmenopausal women were eager to receive MHT and testosterone. Women hoped these would benefit them physically and sexually, and that they would have more energy, look younger and fitter and be healthier. They anticipated increased spontaneous sex drive, arousal, orgasm and an enjoyable sex life. Adele, aged 53, shared: ‘… I want some energy. I feel I am a young, fit, healthy, happy woman. I am blessed, but I just would like to not feel like I’m 80 years old sometimes. I don’t recover from exercise anymore. I am quite exhausted and I fall asleep all the time. I like to feel more energetic, to not be asleep at 9 o’clock at night every night. That would be nice and probably to feel more spontaneous and have a bit more personal arousal I suppose.’ Megan, perimenopausal and aged 46, was hoping to receive testosterone as her blood testosterone levels had been consistently ‘low’. She hoped testosterone would alleviate tiredness, and increase her energy and sex drive. Jade, aged 53 and perimenopausal, said her girlfriend’s dramatic and ‘unbelievable’ sexual changes after taking hormones encouraged her to seek medical help. Stella, aged 47 with a diagnosis of breast cancer 18 months ago, shared: ‘… Basically having that desire that you get where you actually feel like you want to have sex. Simply, just that desire and also if my painful intercourse can be improved that would be good. I assume after checking my hormone levels I would receive hormones. As long as it [hormone therapy] doesn’t affect my breast cancer, I would be happy to use it and do anything that is needed.’ Alice, another breast cancer survivor, aged 54 had bothersome dyspareunia and expected treatment would alleviate that.

Findings from the follow-up phone interview at 3–4 months Ten out of 17 women (seven postmenopausal, one perimenopausal and two premenopausal) participated in the study follow-up, nine by telephone and one by email. All but one of the seven non-respondents attended their follow-up medical consultation. Of the 17 participants, five women were treated with MHT and/or other medications, six women with MHT plus testosterone, and three with testosterone alone (Table 2). The average length of the phone interviews was 7 min (range 3–20 min).

Evaluation of treatment outcomes Four out of ten women who were treated with MHT plus testosterone reported a benefit of treatment. They described

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Fooladi et al. improved quality of life, especially improvement in mood, restoration of sex drive, more enjoyable, spontaneous and regular sex, less pain during intercourse, alleviation of bothersome menopausal symptoms and an improved relationship with their sexual partner. Clara, aged 62, said: ‘I am not lethargic as I was before, feeling better in myself psychologically. Without those implants I almost tended to crawl around to do things that I used to do. It is quite amazing. I have more energy, more clear, a lot of confidence, you are physically stronger. Hormones keep me topped up.’ Justine, 70 years, said: ‘Before I did not like to be touched and that is improved after treatment. I feel ok. I am feeling better in myself. I have not got as much of the hot flushes and sweating anymore. That is not happening anymore. My sexual desire has improved a lot and because of that my relationship has improved. Not as much stress as before anymore. The treatment satisfies my needs and my libido improved.’ Sophia, 56 years, shared: ‘I am much happier now. I definitely needed it, particularly for my state of mind for the neurochemistry of the brain to function normally and I still have a lot of things that I am trying to work out like I am trying to improve my energy level and my diet and all that sort of thing… When I look back on it when I started back in January my quality of life was 0. Say my quality of life now is about 45%, a good 45%, fantastic so that hormones have just been fantastic … and the rest of my improvement in my quality of life would be starting to do more exercise and change my diet…’ And about her relationship with her partner she said: ‘I am much more in the state of mind … because I am not angry or grumpy I am much [more] amenable to hug or cuddle.’ The following findings relate to four women who received MHT or other treatments without testosterone. Amy reported slightly improved libido and resuming sexual activity. She also added: ‘I have not got hot flushes anymore, thank God, in about 7 days of treatment and I do not want to come back to that again. Certainly, it was debilitating, I found.’ Emma, aged 51 who received tibolone and vaginal estrogen shared: ‘… So definitely treatment is working. When I first went to a doctor, what I really needed was something to assist with lubrication and yes … so certainly sounds that it has done that because now there is not a problem. It increased the sexual interest and the ease of doing that that is very good.’ She added: ‘I think that it helped our relationship because we can have sex freely with no preparation and more spontaneous and more enjoyable. Yes and of course, it’s physically more comfortable whereas it used to be very painful. My relationship is a lot more comfortable with my husband. We are now happier because there is not strain on the relationship when it comes to sex and we have it now more regular. So, all the things were positive. Pill is easy to take. Body does not feel any difference except for me having sex. My body did not see any changes in terms of mood swings or attitude.’ Jade, aged 53 expressed: ‘The treatment has rid me of the hot flushes and increased my libido, also has made having sex

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Expectations of treatment for female sexual dysfunction less painful. The treatment has restored some of my sexual drive thus also good for my relationship of 13 years. I would definitely like to continue treatment.’ Despite positive effects of hormonal therapy in some women, some women reported borderline benefit or no benefit as a result of treatment. For example, Stella did not report improvement in her libido with vaginal testosterone cream. Alice, a breast cancer survivor with dyspareunia, reported only partial symptom relief with vaginal estrogen therapy. She shared: ‘… there is (still) some pain, but intercourse is not impossible’, and went on to say, ‘I have a fear in the back of my mind that I would have to stop intercourse because of pain.’ However, she was willing to continue the vaginal estrogen as prescribed.

DISCUSSION Our study reveals that women who attended a specialist physician for the management of FSD were distressed about their sexual problems, were concerned about the impact of their problem on their relationship, expected to be prescribed hormone therapy anticipating that hormone therapy would benefit them physically and sexually and, of those interviewed, most were satisfied with the outcome of treatment 3–4 months later. The theme of distress related to FSD was evident in all of the accounts. This has been consistently reported in previous studies of women experiencing sexual difficulties24,25. Loss of sexual desire may cause profound distress, whether a woman withdraws from sexual interactions or continues to engage sexually to maintain intimacy and domestic harmony26. A driving factor for seeking treatment was the high value women placed on intimacy in their relationship. Other studies have reported that treatment motivators for women include wanting to feel normal in terms of sexual desire, being bothered by decreased sexual desire, a diminished sense of femininity and the perception of the sexual problem as bothersome7,27. The participants in our study were concerned about their relationship with their sexual partner. This highlights the responsibility women in committed relationships feel when their desire to engage in sexual activity comes to an end. Rosen and colleagues reported that more than 50% of women in their study sought medical help for the sake of their partner or their relationship7. Although the lack of partner has been identified as a leading reason for sexual inactivity in midlife women28, one participant in our study, who was not in a relationship, was sufficiently concerned about her sexual dysfunction that she sought treatment for this problem. This highlights the need for clinicians to be aware that lack of a partner does not automatically imply absence of sexual concerns. As the recruitment for the study occurred at an endocrinology practice, it was expected that the participants would consider their problem to be hormonal. The premenopausal women thought their low libido might be a symptom of early menopause and wanted their hormone levels checked. The

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Fooladi et al. postmenopausal women, with or without a history of MHT or testosterone use, expected to receive hormone therapy, with the belief that this would benefit them physically and sexually. The women with bothersome menopause symptoms hoped these would be alleviated by MHT. Our follow-up interviews provided us with an opportunity to explore the women’s assessment of their treatment outcomes. Participants for whom MHT, with or without testosterone, was prescribed reported benefits in their quality of life and sexual relationship. Some reported a renewed self-confidence. Alleviation of menopausal symptoms was reported to enhance sexual function in some women. Our findings are in line with evidence that, although most women do not require pharmacotherapy for menopausal symptoms, some are severely affected by estrogen deficiency at and beyond menopause and, for such women, MHT is important if they are to retain an acceptable quality of life29. This study was designed to extend our knowledge of FSD, in particular women’s expectations of the medical consultation and treatment outcomes. Our open-ended questions allowed women to share their lived experience before and after medical counselling with an endocrinologist and provided us with a richness not typically afforded by traditional quantitative methodologies. Our study has some limitations. The participants in our study knew that they would be specifically asked about their sexual concerns. This may have resulted in a selection bias as volunteers for sexual studies have been found to be more willing to disclose their sexual information compared with those who refrain from volunteering, independent of overall self disclosure tendencies30. Not all the women participated in a second interview despite three phone attempts and one text message sent to arrange follow-up. This may reflect employment commitments and time poverty. However, we cannot assume that the satisfaction of non-respondents was the same as that of respondents. Due to the small sample size in the follow-up phone interview, we did not reach the ‘saturation’ point. Hence, we reported no theme for the experiences of the given treatment. A larger sample size to achieve this goal is needed in future research. It is noteworthy here that qualitative research does not aim to achieve generalizability, but identify theories and patterns that may be relevant to broader populations31. In judging the relevance of our findings to a general population, the composition of the sample needs to be considered32. Our study participants were mainly Caucasians and educated and were aware of the changes in sex hormones at menopause. Despite the limited nature of our sample, our findings sit well with the published literature6,33-36.

CONCLUSIONS This qualitative work supports the need for treatment of FSD as shown by the level of distress and concern experienced by afflicted women. Treated women expressed beneficial effects of hormone therapy, including improved quality of life and

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Expectations of treatment for female sexual dysfunction relationships. Further studies including more socioeconomically and culturally diverse samples of women are needed.

ACKNOWLEDGEMENTS We thank our study participants for their participation in a study on a sensitive issue. We would like to thank the reception staff at Suite 55, Cabrini Medical Centre, Melbourne for their assistance in recruiting study participants and our colleague Ms Maria La China for transcribing the interviews.

Fooladi et al. Confl ict of interest S. R. Davis is presently an investigator for Trimel Pharmaceuticals Ca and has received unrestricted research grant support from Lawley Pharmaceuticals and Besins Healthcare. The other authors have no confl icts of interest or fi nancial disclosures to declare. Source of funding Ms. Fooladi is a PhD researcher sponsored by the Iran Ministry of Health and Medical Education. Dr Davis is an NHMRC Principal Research Fellow (Grant no 1041853).

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Women's expectations and experiences of hormone treatment for sexual dysfunction.

There is a paucity of information regarding women's expectations of medical treatment for female sexual dysfunction (FSD) and their self-appraisal of ...
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