CHAPTER 67 Lesbian and bisexual women’s health issues
Introduction
Lesbian and bisexual women come from all walks of life: they may be old or young, disabled, Black and minority ethnic, living in poverty or living in rural areas. Despite this, some health professionals continue to believe that they have no lesbian or bisexual patients. Recent government figures estimate that there are 1.6 million lesbian and bisexual women living in the UK, comprising 5% of the female population (Department of Trade and Industry 2004). Studies suggest that up to one-third of lesbian and bisexual women have children, they may be more likely to have had a university education, but there is conflicting evidence about their income relative to heterosexual women (Fish 2006).
It is increasingly recognized that obstetricians and gynaecologists know little of their distinctive health concerns. Although notions persist that homosexuality itself is a disease, many healthcare professionals otherwise believe that there are no differences in lesbian and bisexual women’s health from that of women in general; there is often a perception that sexual orientation is a private matter which is irrelevant to the health consultation (McNair 2003). Over the past 20 years, research has suggested that the health of sexual minority women differs in key ways: in their health behaviour, health risks and experiences of health care. Lesbian and bisexual women are less prevention oriented and avoid routine screening tests, such as cervical cytology and mammograms. For these reasons, sexual orientation has been recognized by the Department of Health as a ground for health inequalities (Fish 2007). Sexual orientation is unique among the six equality strands (i.e. ‘race’, gender, age, disability and religion) in not being included in the UK census; this omission has contributed to a lack of research in sexual orientation and health, and a dearth of statistics about their demographic characteristics. Healthcare professionals may also lack specific knowledge of lesbian and bisexual women’s needs and be unable to provide relevant health information (Hughes and Evans 2003, McNair 2003).
Evidence suggests that discriminatory treatment is now less common in health care (Solarz 1999). Lack of understanding and the personal discomfort of health professionals, however, often mean that lesbian and bisexual women have a differential experience of health care. Doctors are sometimes uncomfortable in providing care to sexual minority patients or embarrassed to ask questions relating to sexual behaviour (Hinchliff et al 2005). Good medical practice (General Medical Council 2006) and the desire to provide optimal health care requires health professionals to be informed about the continued barriers to health care and of differences in health risks, to be sensitive to historical stigmatization, and to be aware of issues of cultural competence with sexual minority women (Mayer et al 2008).
Social Change
The introduction of the 2007 Equality Act (Sexual Orientation) Regulations offers the protection of equal treatment in public services, including the National Health Service (NHS). Current policy offers possibilities for improvement in the health of lesbian and bisexual women as legislation prohibits discrimination in health services and means that they can neither be refused care nor receive a lower standard of care. The most common response has been to overlook lesbian and bisexual women as a patient group; they have often been invisible patients within health services, and their needs have been poorly understood. However, increasingly, their health issues are receiving attention from clinicians, other health professionals and policy makers. The Department of Health in England and Wales is working to promote inclusive services and reduce health inequalities for lesbian, gay, bisexual and transgender people; sexual orientation is included in current efforts to mainstream equality and diversity in health care (e.g. the Pacesetters Programme), and the General Medical Council has published guidance for the protection of lesbian, gay and bisexual people as patients (General Medical Council and Stonewall 2007). However, these initiatives have not been consistently implemented or acknowledged across the NHS.
The Medical Model
In biomedical accounts, lesbian health has been located within a sickness paradigm (Burns 1992). The assumption that lesbianism itself was caused by a biological, hormonal or psychological deficiency meant that the principal concern of medical professionals was to find a cause or cure. The illness model in mental health derives from assumptions that heterosexuals are normal and mentally healthy, while lesbians are impaired or abnormal in their psychological functioning (Peplau and Garnets 2000).
The aetiology of lesbianism has been variously attributed to hormonal (Veniegas and Conley 2000), biological (Terry 1990) or mental health differences (Peplau and Garnets 2000). Studies have looked for a biological origin to sexual orientation (Bogaert and Friesen 2002). Other researchers have suggested deficiencies evident in a masculinized finger-length ratio (Williams et al 2000); cerebral functioning (Rahman et al 2006); inner ears, leading to hearing loss in comparison with heterosexual women (McFadden and Pasanen 1998); and impairments in psychological functioning (Garnets and Peplau 2000). Lesbianism was widely considered a pathological condition in need of treatment, and included as a mental disorder in the Diagnostic and Statistical Manual. Until the early 1970s, lesbians underwent electric shock aversion therapy, oestrogen treatment and psychoanalysis aimed at curing their homosexuality in NHS hospitals in the UK (Smith et al 2004). Following intensive lobbying by lesbian, gay and bisexual rights groups, being lesbian (or gay) was declassified as a mental disorder by the American Psychiatric Association in 1973, removed from the World Health Organization’s International Classification of Diseases in 1992, and the recommendation to convert lesbians to heterosexuality was no longer included in the guidelines of the American Medical Association from 1996 (Council on Scientific Affairs, American Medical Association 1996).
Attitudes in Health Care
As any woman who comes to a gynaecologist may be a lesbian or bisexual, the quality of the history taking, the development of rapport and the appropriateness of the advice given will be affected if her experiences, needs and specific fears are not understood. The good health practitioner is aware of the reasons why a lesbian or bisexual woman might be reluctant to seek health care, has an understanding of the effect of homophobia and heterosexism on health, and is knowledgeable about her specific health concerns. Lesbian and bisexual women often seek ‘gay-friendly’ health professionals, i.e. those who are non-judgemental in their attitudes, have an understanding of health needs and are able to facilitate the disclosure of sexuality (McNair 2003).
Implications for Gynaecological Health
Reproductive health
A substantial amount of research exists about the parenting skills of lesbian couples. Research initially focused upon women who had started a family in a heterosexual relationship but who subsequently raised their children in a lesbian household. More recently, research has concentrated upon lesbian couples who seek to have a child through donor insemination at a licensed fertility clinic. Single women seeking fertility treatment with donor sperm have children who compare well emotionally and psychologically with children born by donor insemination to two heterosexual parents (Murray and Golombok 2005a, b). Social research on the children of lesbian parents has produced similar findings to those children born to single women. Their emotional and psychological development is comparable to that of children born of donor insemination to two heterosexual parents. In fact, the second female parent often has greater parent–child interaction than the father in heterosexual couples (Brewaeys et al 1997).
Until the amendments to the Human Fertility and Embryology Bill in 2008, fertility clinics had an obligation not to provide treatment unless account had been taken ‘of the welfare of any child who may be born as a result of treatment (including the need for a father)’. This was used by many to refuse treatment for lesbian couples; the wording has been replaced in the new legislation by the ‘need for supportive parenting’. There has been a four-fold increase in the number of lesbian couples receiving IVF treatment (Human Fertilisation and Embrylogy Authority 2009). The implications for gynaecologists include: involving all parties desired by patients, including partners, known sperm donors and coparents; enabling women to make informed choices about interventions that are consistent with their known or presumed fertility; offering fertility support that is specific to lesbian and bisexual women; and helping lesbian and bisexual women to access other relevant services (Ross et al 2006). They also need to be aware of the known quality of lesbian parenting and be prepared to judge individual cases on the facts and evidence.
Lesbian mothers’ access to maternity services
In the past, lesbian couples have been considered less ideal parents than their heterosexual counterparts. Their children were said to have difficulty forming a normal heterosexual identity. It was also assumed that children without a father lack appropriate gender role models; in particular, that a boy brought up by lesbians would be effeminate. Notwithstanding the obvious argument that most homosexuals were born to heterosexual parents (and thus the likely disconnection between the parent’s sexuality and child’s sexual orientation), and that most boys in single mother families remain heterosexual, empirical evidence is now available. Comparisons of children’s development in lesbian mother and heterosexual households show no difference in the likelihood of growing up gay; boys growing up in families without a father showed no less masculine gender role behaviour than boys brought up by a woman and a man (MacCallum and Golombok 2004).
Attitudes can influence how lesbian mothers are treated in maternity services (i.e. with hostility, curiosity or respect). Responses from healthcare professionals have sometimes been inappropriate, such as prying into a lesbian’s decision to become a mother. In other circumstances, lesbians have felt that their partner was invisible or merely tolerated (Wilton and Kaufmann 2001). The changing social climate may mean that lesbian and bisexual women may be more likely to ‘come out’ to health professionals in the expectation that their relationship will be acknowledged, their partner will be treated as a coparent and their support needs, including referral to appropriate parenting support groups, will be met.
Cervical screening and cancer
Studies suggest that up to four-fifths of lesbians have had sex with men in their lifetime (Marrazzo et al 2001). Human papillomavirus (HPV) has a long latency period (Carroll et al 1997), and any previous heterosexual sex may contribute to lesbians’ risk of cervical cancer.
Smoking is also a risk factor for cervical cancer; there is some evidence that lesbians are more likely to smoke than heterosexual women (Gruskin et al 2001).
Transmission of human papilloma virus between women
Potential routes of transmission between women include oral sex, vaginal penetration with the fingers, sharing sex toys or skin-to-skin contact (Marrazzo et al 2001).
Prevalence of human papilloma virus and cervical cancer in lesbian and bisexual women
Researchers have sought to identify prevalence rates because no surveillance data are available on the incidence of cervical abnormalities in lesbian and bisexual women. A case–control study of 1408 lesbian and bisexual women and 1423 heterosexual women found that cervical abnormalities [cervical intraepithelial neoplasia (CIN) 1, CIN 2–3] were equally prevalent in both groups (Fethers et al 2000). A US clinic study reported a prevalence of HPV in lesbian and bisexual women of 13%; among those with HPV detected, 74% had oncogenic types (Marrazzo et al 2001).
Furthermore, cervical abnormalities have been found in women who report that they have never had sex with men (Bailey et al 2000, Fethers et al 2000, Marrazzo et al 2001). Lesbians whose female sexual partners have had previous heterosexual sex may therefore remain at some risk. Cervical abnormalities (borderline, mild, moderate or severe dyskaryosis) were more common in women who had been sexually active with men than in ‘exclusively’ lesbian subjects (10.9% vs 4.9%) (Bailey et al 2000).
Uptake of cervical screening among lesbian and bisexual women
Studies have found that lesbians, but not bisexual women, were less likely than heterosexual women to have been screened routinely (Diamant et al 2000, Matthews et al 2004, Kerker et al 2006).
Women’s screening behaviour differed significantly according to whether they reported having had sex with men (Marrazzo et al 2001). Lesbians who had never had sex with men were more likely to report no prior screening than those who had been sexually active with men (42% vs 12%, P < 0.001, Bailey et al 2000).
Advice from healthcare professionals
There is evidence that lesbians are deemed to be ineligible for screening because of their sexuality; notwithstanding their risk from prior heterosexual sex, they are often judged on their current activities. Marrazzo et al (2001) found that 10% had been told by a healthcare provider that they did not need to be screened because they were not sexually active with men. These providers were identified as doctors in all but one case. There is also some evidence to suggest that lesbian and bisexual women have been refused cervical screening when they requested a test (Hunt and Fish 2008).
Sexually transmitted infections
Sex between women is often considered a negligible risk for sexually transmitted infections (STIs) (Mercer et al 2007). However, studies suggest that women who report that they have only had sex with women are susceptible; in woman-to-woman transmission, a greater number of sexual exposures are needed, while in heterosexual transmission, a greater number of partners increased the risk of transmission (Bauer and Welles 2001). STIs are more common among women who have had previous heterosexual contact or whose female partners have had male sexual partners (Carroll et al 1997, Mercer et al 2007). Bacterial vaginosis is more common among lesbians than among heterosexual women; it is significantly associated with a larger number of female sexual partners and smoking (Skinner et al 1996, McCaffrey et al 1999). Genital warts, genital herpes and trichomoniasis have been diagnosed in lesbian and bisexual women; other STIs such as chlamydia, pelvic inflammatory disease and gonorrhoea are comparatively rare (Bailey et al 2004). Gynaecologists and other healthcare professionals may need to consider the potential risks for STI transmission in medical decision-making. STI testing should be offered to lesbian and bisexual women based on the number and gender of their sexual partners (Bauer and Welles 2001).
Breast cancer
Lesbian and bisexual women are believed to be at higher 5-year and lifetime risk for breast cancer in comparison to heterosexual women; they are more likely to report a diagnosis of breast cancer than heterosexual women (Valanis et al 2000). Studies have suggested that reproductive factors may play a role, as they may have fewer pregnancies and children (Dibble et al 2004, Brandenburg et al 2007). Other potential risks include increased alcohol consumption, a significantly greater number of breast biopsies and being overweight (Cochran et al 2001). Although the risks confuse behaviour (having children) with identity (being lesbian), some lesbians do have children while some heterosexual women do not; research suggests that the rates of nulliparity are higher among lesbians than heterosexual women (76% vs 22%) (Case et al 2004).
Breast awareness and screening behaviours
Key differences in breast health care between lesbians and heterosexual women may relate to breast awareness and screening behaviours. Despite controversy about the efficacy of breast self-examination, biomedical sources continue to advise women to be aware of changes in their breasts because as many as 90% of breast lumps are found by women themselves (Fish and Wilkinson 2003). Lesbians appear to be less likely to be ‘breast-aware’; current health promotion emphasizes ‘Touch, Look and Check’. Lesbians commonly said that they did not know what they were looking for or how to check their breasts (Fish and Wilkinson 2003). Although some studies find that lesbian and bisexual women attend for mammography at the same rates as heterosexual women (e.g. Fish and Anthony 2005), others suggest that relationships with health professionals and the anticipation of heterosexism may affect their experiences of mammography and their future reattendance (e.g. Lauver et al 1999).
Lesbian and Bisexual Women’s Experiences of Health Care
The field of lesbian and bisexual women’s experiences of health care is dominated by studies from North America and the quantitative research paradigm (Wilkinson 2002). Consequently, few studies have investigated sexual minority women’s perceptions and experiences of health care. Recent government policy initiatives, the White Papers ‘Choosing Health 2004’ and ‘Our Health, Our Care, Our Say 2006’, seek to give patients greater choice about healthcare services and to consult with them about service delivery. There are a number of challenges, however, in eliciting the views of a hidden population. Although the following findings are derived from a non-random sampling survey, they represent the best-available data about lesbian and bisexual women’s healthcare experiences in the UK (Hunt and Fish 2008). The questionnaire asked lesbian and bisexual women about how healthcare services can be improved. Analysis of the data identified three main themes: (i) assumption of heterosexuality, (ii) facilitating access and (iii) improving attitudes.
Assumption of heterosexuality
Although increasingly liberal social attitudes have meant that greater numbers of lesbian and bisexual women have ‘come out’ to their family, friends and work colleagues, health care is the environment where they are least likely to disclose their sexual orientation. Almost half of the lesbian and bisexual women in the study had not come out, or only to a few healthcare professionals (Hunt and Fish 2008). As one participant in the study said, receiving health care can make a patient feel vulnerable, and additional barriers, such as coming out, may add to an already stressful situation:
Facilitating access
Since the introduction of the Civil Partnership Act 2004, women in same-sex relationships have the same rights and responsibilities as married heterosexual couples, including the right in health care to have their partner recognized as their next of kin. The legislation has implications for all documentation where ‘marital status’ is required. Research undertaken by the Royal College of Nursing (2003) suggests that some healthcare professionals refuse to acknowledge a same-sex partner, and deny the partner visiting rights and access to information. Participants in the study shared similar experiences:
Improving attitudes and behaviours
The doctor–patient relationship is often said to be as important to a patient’s experience as the treatment of disease (Wilton 2000). Skilled interviewing and positive attitudes are associated with good health care; doctors’ values and attitudes are linked to patient satisfaction, the willingness of a patient to return to their health provider and improved heath outcomes (Gruskin 1999). Attitudes are also informed by knowledge about lesbian and bisexual women’s communities and the ways in which their lives are organized:
Conversely, poor attitudes have a potentially detrimental impact on health care:
Education and Research
Undergraduate medical education
Studies point to the absence of lesbian and bisexual women’s health concerns on undergraduate and postqualifying medical curricula, and highlight the need for cultural competence, including sensitive communication and informed values (Hutchinson et al 2006).
Research in lesbian and bisexual women’s health
Unlike for heterosexual women, research in lesbian and bisexual women’s health has been largely overlooked. A review of English language articles found that only 0.1% (n = 3777) of all articles cited in Medline addressed lesbian, gay, bisexual or transgender issues (Boehmer 2002). Almost two-thirds (61%) of these were disease specific, pointing to the continuing dominance of the biomedical paradigm, and most (80%) focused on gay men. These findings suggest that lesbian and bisexual women’s concerns have been historically neglected in health research. In recent years, the research base has grown in the USA and this can be attributed to a number of factors, including increased access to research funding, the establishment of a lesbian health fund by the Gay and Lesbian Medical Association, the development of new methodologies in lesbian and bisexual women’s health, and the inclusion of questions relevant to sexual minority women on population-based studies (Solarz 1999). However, there are continuing obstacles: research grants are relatively small, there are few available funding streams, and significant barriers to publication remain (Plumb 2001).
Conclusions
Recommendations
Develop a welcoming environment
Competent gynaecologists will:
KEY POINTS
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