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The impact of chronic inflammatory disease on sexual function may seem obvious but it is poorly understood. Pain, morning stiffness, joint swelling and fatigue can lead to a decreased sexual interest and can inhibit actual intercourse. In this article, Dr. Kim Gorgens reviews the current literature on sexual function for patients with chronic conditions, such as arthritis, and makes recommendations for incorporating sexual function complications as part of the discussion in a clinic exam.
WHAT IS SEXUAL HEALTH?
Sexual health is the broadest category of sex, sexuality, intimacy and sexual activity. The World Health Organization defines sexual health as “a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.” (WHO, 2010). Sexual function is the single facet of the human condition that is equal parts physical, psychological, relational, and cultural. It is somatic, emotional, intellectual, social and sometimes even spiritual. On the other end side of that experience is sexual dysfunction, a disruption of any component of sexual activity. That disruption can include sexual frustration, painful sex, or reduced sexual pleasure, all of which are overrepresented among patients with chronic disease, especially chronic inflammatory diseases.
People with rheumatic diseases often have pain, restricted joint movement, fatigue and may also experience mood disturbances and a deterioration in self-esteem. Any one of those problems can cause sexual dysfunction. The percentage of arthritic patients who experience sexual dysfunction is reported to range from 31% to 76% (Van Berlo, 2007). A recent study published in Rheumatology International found that 57% of patients with rheumatoid arthritis report difficulty with sexual intercourse (Dorner et al., 2018). Those same high rates of sexual dysfunction are also reported among patients in Mexico (Gonzalez-Lopez et al., 2006) and Brazil (Costa, Silva, Muniz & Da Mota, 2015).
And the shockingly high prevalence rates aren’t limited to western countries with more progressive sexual norms. A recent study in Taiwan reported the prevalence of sexual dysfunction among female arthritis patients to be 67% (Lin et al., 2017). In Persia, 53% of women with arthritic conditions report sexual dysfunction (Mohsen, Gholamzadeh Baeis, & Borzooei, 2016) and in conservative Malay culture, sexual dysfunction including problems with libido, arousal, orgasm and satisfaction are more common among women with rheumatoid arthritis than in healthy controls (Shahar, Hussein, Sidi, Shah & Mohamed Said, 2012). The same is true in Morocco (Khnaba et al., 2016) and Egypt (Gaber, Moghazy, Niazy, & Salem, 2017). In that latter study with Egyptian patients, problems with orgasm, arousal, and satisfaction were the most common reports (Miedany, El Gaafary & El Aroussy, 2012).
The actual frequency of sexual dysfunction is likely even higher. In research, sexual problems are defined differently from study to study. Some settings query “sexual difficulties” and others assess the frequency of specific types of sexual dysfunction. And, in actual clinical practice, sexual dysfunction is often underdiagnosed because patients decline to report the problem because they are ashamed or frustrated and they also fail to report the problem when they aren’t asked about it. In fact, one study reported that 66% of patients were never asked about the impact of arthritis on their sex lives (Hill, Bird & Thorpe, 2003).
WHY IS SEXUAL DYSFUNCTION SO COMMON HERE?
The impact of chronic inflammatory disease on sexual function may seem obvious but it is poorly understood. Pain, morning stiffness, joint swelling and fatigue can lead to a decreased sexual interest and can inhibit actual intercourse (Tristano, 2014). Drugs used in the treatment of arthritis conditions can also cause sexual dysfunction (e.g., DMARDs, methotrexate, hydroxychloroquine, and sulfasalazine). And common medications that treat mood disorders or whose side effects contribute to depression are also implicated in a loss of libido and loss of sexual satisfaction (e.g., corticosteroids, tricyclic antidepressants, serotonin reuptake inhibitors; Yilmaz, 2012). These psychological contributors to sexual dysfunction are paramount. Depression, altered body image, poor performance in daily physical activities and worries about partner interest are all directly related to sexual dysfunction. Patients who have been exposed to physical or sexual trauma are especially vulnerable to sexual dysfunction.
As to the different types of sexual dysfunction, there are three principal categories. Primary sexual dysfunction refers to impaired libido, poor lubrication, and inability to orgasm. Secondary sexual dysfunction refers to physical limitations, such as joint pain or limited mobility, that affect the ability to engage in or enjoy sexual activity. Tertiary sexual dysfunction refers directly the impact of the patient’s psychology (e.g., shame and guilt).
YOU HAVE TO GO THERE
In traditional healthcare settings, all manner of measurements are recorded: clinical parameters, functional classifications/activities of daily living, disease activity, articular index, hand grip, laboratory values, x-rays and objective measures of mental status and depression.
Sexual functioning (dysfunction or otherwise) isn’t part of traditional intake questionnaires or screening tools used to assess physical function or quality of life but it is imperative that health professionals invite conversations about sexual function.
Still, most healthcare professionals avoid it altogether. A 2013 study of healthcare professional’s reluctance to address sex identified nineteen themes relating to lack of experience, fear about “opening up a can of worms,” lack of time/resources/training, worry about causing offense, personal discomfort, and a lack of awareness about the frequency of sexual problems (Dyer & Das Nair, 2013). Some areas with particular hesitation included addressing the sexuality of an oppositeâgender patient, of black and ethnic minority groups, of older and non-heterosexual patients, and of patients with cognitive impairments (Dyer, & Das Nair, 2013). And, in an increasingly interdisciplinary practice landscape, it is also easy to assume another provider will address sex. Surprisingly, even ob/gyns often fail to ask about sexual function. In one large study, 60% of ob/gyns failed to routinely ask about sexual problems. Even fewer asked about sexual satisfaction, pleasure with sexual activity, or sexual orientation/identity (Sobecki, Curlin, Rasinski, & Lindau, 2012). On the latter point, a 2008 study reported that only one provider in a sample of 81 physicians routinely asked their lesbian, gay, bisexual, and transgender patients about their sexual function (Dahan, Feldman, & Hermoni, 2008).
HOW TO GO THERE
One of the best clinical conceptualizations of sexual function is a sex-positive approach which encourages professionals to attend to both dysfunction and the capacity for pleasure (Mona et al., 2011; Syme, Mona, Cameron, & Nicholas, 2013). There are some hallmark publications to frame this discussion. Panush, Mihailescu, Gornisiewicz and Sutaria (2000) adapted the PLISSIT model (permission, limited information, specific strategies and intensive therapy) for use with arthritis patients. In the general PLISSIT model, the first level is permission, which involves giving your patient permission to broach the topic, to change their lifestyle or to get help. Permission includes questioning the patient about his/her sexual dysfunction and inviting a dialogue with the patient's partner if that applies. The second level is limited information, where patients are provided with limited and specific information. The third level is specific suggestions, where the healthcare professional makes suggestions to address the patient’s specific sexual concern (e.g., recommending specific activities, medications, or making outside referrals). The Panush, Mihailescu, Gornisiewicz and Sutaria (2000) adaptation includes the following:
As to the management of sexual dysfunction, there are a few cotemporary models to guide physicians and medical teams. A 2014 review by Tristano provides specific treatment recommendations for the causes primary sexual dysfunction and an English-language translation of a review by De Almeida, Ferreira, Kurizky, Muniz, and Da Mota (2015) features a multidisciplinary perspective for assessment and treatment and a useful series of visual guides/handouts for sexual positioning.
With these guides, handouts, and mnemonics, professionals should feel equipped to ‘go there’ and invite conversations with their patients about sexual function and that alone will contribute to a vast improvement in patient experience and well-being. That conversation though, is a single step towards changing a healthcare culture that fails to encourage professionals to have this conversation and may even suppress the initiative.
Your responsibility for culture change includes a few imperatives. The first is a self-reflective assessment of your own beliefs, taking careful stock of your hesitations, assumptions and bias. Review and challenge those constructs with colleagues and mentors and seek out professional (and/or personal) consultation from experts in sexual health and dysfunction. Your second responsibility is to create the kind of practice and healthcare culture where sex is spoken. Some settings hang a “SEX IS SPOKEN HERE” sign but it is otherwise more subtle but no less powerful.
Add sexual health questions to your patient self-report forms (alongside symptom inventories or HIPAA forms), add that query to your intake assessment and to your routine re-evaluations. The aim isn’t to have an in-depth conversation with *every single* patient but to send a message that you are willing to field these questions or concerns.
Planned Parenthood, arguably the experts in sex education, calls this making yourself "askable." And perhaps your most important responsibility is to be OK with not knowing the answers but to make the investigation and your commitment to it, plain to the patient. Show your patients how and where you find those answers and that you are willing to do so. The value is more often in seeing you puzzle it out (an alternate version of the adage about “teach a man to fish” comes to mind). All told, the cost of desexualizing patients is counted in patient satisfaction but also in health outcomes.
ABOUT THE AUTHOR: Dr. Gorgens is Clinical Professor and Director of Continuing Education, Graduate School of Professional Psychology, University of Denver. For more articles from Dr. Gorgens, visit her blog "Brains Matter."
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