It affects women of all backgrounds, races, ethnicities, socioeconomic status and sexual orientation. Treatment and support of those with Endometriosis continues to be lacking and insufficient. Unfortunately, because the medical community at large assumes heterosexuality when treating patients, lesbians with Endometriosis face unique challenges when dealing with this already-difficult illness. The ERC is the only Endometriosis organization as of this writing that has acknowledged the unique needs and perspectives of lesbians living with Endometriosis. We are providing this material not to separate the Endometriosis community, but rather, to unify it - we believe all women have a right to be free from pain and to be informed, educated partners in their healthcare, regardless of sexual preference. Our organization wishes to thank and recognize Joanne Vannicola for her invaluable input and assistance in the creation of this important material, as well as the Long Island Lesbian Newspaper for their support.
Lesbians face all of the same discriminations experienced by heterosexual women when dealing with the medical community, plus additional concerns. The medical establishment at large often dismisses the validity of lesbian-specific health issues, including Endometriosis, and ignores the lesbian patient's specific treatment and education needs. For instance, lesbians may be at a higher risk for conditions like Endometriosis, breast and cervical cancers, because they don't bear children at the same rate as heterosexual women. Since there is heterosexism in the healthcare system, lesbians encounter homophobia by their care providers, in educational materials (i.e. lack of information about alternative insemination methods), lack of inclusive language (i.e. partner instead of "boyfriend" or "husband"), medical forms and hospital visitation policies-reducing access and use of the health care system.(20)
Lesbians may also procrastinate in seeking help for a health concern. Due in part to negative past experiences, the lesbian and gay community in general tends to visit healthcare providers less often. Lesbians may be fearful or embarrassed about discussing their sexual behavior with their gynecologists, fearing that they will be discriminated against. Insurance for office visits, procedures and prescriptions is also more limited; policies usually do not allowed to cover unmarried partners. Research has also shown that lesbians are less likely to receive typical office services, such as pap smears, than heterosexual women are. Many healthcare providers and patients share the false assumption that because lesbians are not sexually active with men, they are not at risk for developing dysphasia (abnormal cells in the cervix). As a result of this misinformation, lesbians may avoid medical services and health care providers may give incorrect advice and underutilized appropriate health screenings for these patients. Of course, like all women, lesbians need regular pap smears.(21)
To ensure that you receive the proper healthcare you need and deserve, be upfront with your doctor from the beginning as to your sexual orientation. You have the right to seek new care if you are, on any level, uncomfortable with your practitioner.
Certainly, a better question might be, what are doctors going to do to make coming out an easier process for lesbians?In order for women to feel comfortable with coming out to their doctors, medical professionals need to become more inclusive and educate themselves around the needs and differences involving lesbian health. This includes creative inclusive documentation and questionnaires around "partners" instead of "married couples." The questions that gynecologists ask women about sexuality also need to be broadened. A medical professional should not assume all women are heterosexual, and should not ask questions based on this assumption; i.e. "do you experience any pain with intercourse?" or "when was the last time you had intercourse?" Such questions automatically exclude a lesbian reality. A lesbian may not want to answer those questions and instead of coming out, she may say she is not sexually active. There is an absolute need for medical centers and practices where lesbians can feel and see their reflection mirrored in the staff. If there was lebsian-positive space, including lesbian and gay doctors who are not afraid to be out, then it would create and atmosphere of inclusiveness and safety. There should also be a zero-tolerance policy in effect at all hospitals and doctor offices, so that lesbians and gays have legal recourse with respect to homophobic incidents and complaints. Doctors and healthcare professionals need to be held accountable for their actions and behaviors.
Inequality in health care based on sexual orientation is prevalent, and in the end, can lead to further health problems for lesbians. Sexuality in itself is very diverse, whether you are a lesbian, bisexual, heterosexual or transgendered individual. As Endometriosis is an individual experience for every woman, so too is sex and sexuality. But: being lesbian is not just about sexuality. It is an existence, a life filled with many obstacles and unique challenges in a heterosexual and often homophobic world. However, it is also a loving, joyful and triumphant experience.
The serious impact these factors have on lesbian health is evidenced by alarming rates of attempted suicide among lesbians; high incidence of stress-related chronic illnesses in lesbian adults; and avoidance of preventive health services by lesbians of all ages.(22)
For years, the lesbian and gay community has lived under the bias, misunderstanding and even hatred of society. Medicine is not insulated against this bias. According to one in-depth report,(23) the major effects of discrimination against lesbian and gay people include higher morbidity and mortality from cancers and heart attacks, possession of more risk factors, insufficient support systems, alienation disease communities and prejudice from medical providers. Further, evidence has shown that there is scant statistically valid information regarding the health habits of members of the gay and lesbian communities beyond the issue of their sexual behavior. Funded research fails to address not only the usual health issues in the lesbian community, but these projects have also failed to investigate the issues of membership in a distinct minority community that is still discriminated against.
Many widely held negative stereotypes about lesbians exist, including, sadly, in the Endometriosis community. In a study of these stereotypes, it was shown that heterosexual women perceive lesbians significantly differently than lesbians actually see themselves.(24) These differences in perception persisted even when the heterosexual women knew a lesbian socially, suggesting these stereotypes are resistant to change. Homophobia is the overtly observed or expressed in various acts, ranging from social avoidance to verbal abuse to civil, military, employment and religious discrimination, and even to physical abuse.
Homophobia can lead to misdiagnosis and mistreatment by physicians and alienation and misunderstanding by patients. Many studies have revealed significant prevalence of homophobic attitudes among every type of health care practitioner, including OB/GYN. A 1987 questionnaire revealed that many faculty members at a Midwest bachelor-degree nursing school believed lesbianism was a disease (17%), immoral (23%), disgusting (34%), and unnatural (52%). Some (17%) thought lesbians molest children, and a few (8%) thought lesbians were unfit to be registered nurses. In a survey of nursing students, respondents rated lesbians who preferred non-feminine garb as less intelligent, less achievement oriented, less socially desirable, and having fewer friends than the lesbians who wore more feminine garb. Many respondents believed that lesbians "seduced straights" and were a high-risk group for AIDS.
Physicians hold similar biases. In a 1986 survey returned by 930 physician members of the San Diego County Medical Society, a higher percentage of OB/GYN physicians than the entire physician sample average scored in the "severely homophobic," range (31.4% versus 23%). Additionally, 31% of OB/GYNS reporting that they would also refuse admission to a highly qualified lesbian or gay applicants to medical school or residency. Overall 40% said they would stop referring to colleagues if they found out their colleague were gay or lesbian. Gay and lesbian medical students have also complained of hearing frequent, overtly hostile comments about lesbians and gays by their attending physicians during clinical teaching rounds.(25)
Worse still, patients perceive the negative attitudes of their healthcare providers. In one study, 72% of lesbians surveyed about their experience as patients reported experiencing ostracism and rough treatment, overhearing derogatory comments, and having their life-partners excluded from discussions by their medical practitioners. Many studies document that these negative reactions from healthcare practitioners began immediately after patients revealed their lesbian orientation. Sensing this hostility toward them, between 67-72% of lesbians in various studies elected not to reveal their sexual orientation or discuss lesbian existence with their health providers, citing fear of repercussions if they did self-disclose.(26)
With respect to pelvic pain and dysmenorrhea, lesbians endure menstrual and chronic pelvic pain more than a heterosexual woman because they are unaware therapy is available or because they hesitate to present or return for care. Endometriosis and dysmenorrhea are more common in nulliparous (having never given birth) lesbians. Severe dysmenorrhea was reported by 38-54% of surveyed lesbians. While only one study queried respondents about a clinical diagnosis of Endometriosis, the high rate of nulliparity and severe dysmenorrhea among lesbian respondents suggests an epidemic of Endometriosis. Studies even report a higher rate of hysterectomy among lesbians than bisexual women, although the indications varied.
In addition to bias and lack of support from medical workers and fellow patients, lesbians are also faced with complications at the time of medical crisis. Unless a lesbian couple has contracts for mutual medical conservatorship, which are sometimes costly, any blood relative becomes legal next of kin. The family-of-origin can override the role and input of the domestic partner, even though the partner may be the primary caretaker and more knowledgeable of her partner's wishes and beliefs. Hospitals may also restrict the visitation privileges of "non-relatives." Although lesbians can circumvent some of these obstacles by designating their medical power of attorney to the person of their choice, only a fraction have taken such legal steps.
With respect to having children, an already difficult issue in couples rendered infertile by Endometriosis, some adoption laws and clinics refuse to allow lesbians to adopt. Impregnation with sperm donated by friends or unsuspecting men leaves custody questions unanswered and may result in a successful paternity suit by the sperm donor; in addition, many lesbian couples face difficulty in obtaining insemination services by homophobic and judgmental healthcare providers. However, in one study of 35 lesbians delivering in the past five years, most conceived through donor insemination and all sought care within the first 16 weeks, with 89% participating in childbirth classes and 80% breast feeding for six months or more. All lesbian mothers obtained obstetrical care from physicians or midwives, with 91% disclosing their relationships to their providers. Most of the women were very satisfied with their obstetrical experiences. There is absolutely no scientific basis for refusal to inseminate lesbians.(28)
You can find out more about lesbian health by contacting the following organizations:
Lesbian Mothers Support Society http://www.lesbian.org/lesbian-moms/
National Lesbian and Gay Health Association 1407 S. St. NW; Washington, D.C.20009 Phone: 202-939-7880
National Center for Lesbian Rights 870 Market Street, Suite 570; San Francisco, CA94102 Phone: 415-392-6257
Lesbian Health Agenda, Human Rights Campaign http://www.hrc.org/issues/lesbianh/lh_research.asp
Lesbian Health Resource Center http://www.lesbianhealth.org/
Lesbian Health Foundation http://www.lesbianhealthfoundation.org/
References: (20) Lesbian Health Agenda, Human Rights Campaign-http://www.hrc.org/ (21) "FAQ on Lesbian Health," by the University of CA at San Francisco & the Office on Women's Health/Dept. of Health & Human Services. www.4woman.gov/faq/Lesbian.htm (22) Lesbian Health Fund Program, 459 Fulton St., Suite 107, San Francisco, CA 94102, ph. 415-255-4547 (23), (24), (26), (27), (28) "Lesbian Health & Homophobia: Perspectives for the Treating Ob/Gyn," by Dr. Kate O'Hanlan, Associate Director of Gynecologic Cancer Surgery, Stanford UMC. http://www.ohanlan.com/lhr.htm