Let's Talk About Sex … and CKD.

Nicki's Story When first diagnosed with CKD, I was started on high-dose prednisolone. Along with weight gain, fluid retention, a metallic taste in my mouth, headaches, and fatigue from just getting through a day, I began to feel very self-conscious of my body and noticed a reduction in my sex drive as I progressively became sicker. I had been married for many years, and although my husband is a very understanding and patient man, it still posed a difficult challenge to our sex life, intimacy, and my self-esteem, even more than birthing and raising three children. I had little to no sexual desire; in fact, sex was the last thing on my mind. When I reached the stage of kidney failure, I commenced peritoneal dialysis (PD). During this time, I required multiple surgeries, tube insertions, blood tests, biopsies, and intravenous treatments; thus, physical touch, particularly from clinicians during appointments, was associated with pain. I experienced a lot of pain with these procedures, bruised easily, and my body ached, so I tended to avoid all physical touch. I was anxious about having sex with a tube in my abdomen, concerned that my husband would be repulsed by the sight of it and that it may cause catheter complications and jeopardize my PD treatment. My mouth tasted horrible to me, so I shied away from kissing. My stomach was covered in rashes from dressings; I felt very unattractive. I also felt very vulnerable because there was little information available. I was unsure of what was safe and how to have a normal sex life. I later received a living donor kidney transplant. I still struggle with my body image post-transplant, but I have worked hard on accepting my scars and all that my CKD journey entails, and I am fortunate to have a supportive partner. There are many other patients with CKD, who are single or in relationships, who struggle with similar insecurities about sex. Some may feel silenced by cultural norms, stigma, and embarrassment, which are barriers to discussing sexual health. We need to start a conversation about the effect of CKD on our sex lives and sexuality. Commentary There is a scarcity of information about the effects of CKD and treatments on sexuality and libido, and how to deal with the feelings of shame, vulnerability, and insecurity. There is also an apparent lack of evidence on how to address sexual health in people with CKD. We conducted a MEDLINE search on the topics of sex, sexuality, and intimacy in CKD and found over 800 reports. The most common topic was sexual dysfunction (452, 54% reports), specifically erectile dysfunction in male patients. In comparison, there were notably fewer studies on sexual dysfunction in female patients. In a Cochrane systematic review of interventions to treat sexual dysfunction in CKD, 14 of the 15 studies included male patients only.1 Many issues related to sex and sexuality apart from erectile dysfunction may be important for male patients. For example, body image and self-esteem, caregiving and changes in relationship dynamics, and safe sexual practices are topics that have received very little attention. For female patients, there has been growing recognition and attention given to women's health issues in kidney disease. The International Society of Nephrology and International Federation of Kidney Foundations Call to Action for Kidney Disease in Women Initiative was launched on World Kidney Day in 2018. This campaign highlighted issues relating to maternal and child health, disparities in access to health care, and CKD prevention. Other concerns that are faced by women with CKD remain underaddressed, including menstruation, menopause, contraception, and sexually transmitted diseases. Critically, the recent changes to the political landscape of some developed countries have resulted in elimination of women's rights to safe reproductive health care. This has devastating consequences for women's health, particularly for those most vulnerable, including people with chronic diseases. The nephrology community can and should play an important role in advocating for the protection of women's rights to ensure equitable health and justice for their patients. Many studies in sexual health have commonly focused on reporting biochemical markers and hormone levels that may not be directly meaningful to people with CKD and their families. Initiatives such as the Standardised Outcomes in Nephrology have increased recognition of the importance of patient-centered outcomes, including those relating to sexual health. Sexual function was found to be important to people receiving dialysis.2 For kidney transplantation, fertility was identified as a high priority among patients, caregivers, and health professionals.3 Appearance was also consistently considered important in PD,2 polycystic kidney disease,4 transplantation,3 and among children and adolescents with CKD.5 Despite this, many of these outcomes are sparsely reported in trials and other research. Very limited education on managing sex-related issues in CKD is available for nephrologists and other health professionals. For example, the American Society of Nephrology broadly recognizes the importance of patient-centered care in its training curriculum but does not specifically mention sex or sexual health–related topics.6 The Australian training curriculum for nephrology does not include sex-related topics apart from the pregnancy-related objectives such as (1) recognizing the effect of diagnostic methods for pregnant women; (2) managing hypertension and kidney disease in pregnancy; and (3) managing urinary tract infections in pregnant patients.7 The UK specialty training curriculum includes sections on both male and female sexual health issues. However, the curriculum is primarily focused on developing knowledge, skills, and behaviors to address erectile dysfunction in male patients and on the implications of pregnancy in female patients.8 Sex is often viewed as a taboo topic in clinical practice and may cause embarrassment for people with CKD and their clinicians.9 Culture, language, religion, and ethnicity of the patients and/or clinicians may make clinicians feel reluctant or uncertain when discussing this topic because of personal reservations or fear of intruding on the patient's personal lives. People with CKD may feel shame or be embarrassed or unsure about how to raise or discuss these issues with their health care team, leading them to avoid seeking help. Clinicians may assume that sex and sexuality may not be a CKD-related issue and tend to focus on medical aspects of CKD, including BP, blood glucose, and anemia management. They may also perceive an inability to intervene and are uncertain about whose responsibility it is to address sexual health issues. Implementing change in clinical practice will require greater education, training, and guidance for health professionals to address sexual health with their patients. Some notable steps have been taken in this direction, including the integration of a sexual activity and sexual dysfunction topic in the recently published International Society for Peritoneal Dialysis/Global Renal Exercise Network practice recommendations because of consumer input.10 Older guidelines on the care of kidney transplant recipients from the Kidney Disease Improving Global Outcomes consortium include recommendations to (1) evaluate sexual dysfunction in transplant recipients and (2) discuss sexual activity and counseling for contraception and safe sex practice.11 These recommendations were not graded, however, indicating the poor quality of available evidence and need for further research. Ultimately, this lack of evidence calls for an urgent need for more awareness and better management of sexual health in people with CKD. This needs to be based on their experiences, values, and goals for their sexual health while living with CKD and must be inclusive across all ages, sexes and sexual orientations (lesbian, gay, bisexual, transgender, queer, and more), and ethnicities. In Figure 1, we provide suggestions for research, education, and clinical practice as a first step in mobilizing knowledge and efforts to address these issues. Given the personal nature of these topics, and the effects they have on patients' lives, it is critical that people with CKD have a continued voice in this research. It will require a joint effort by patients, care partners, and clinicians to shatter the stigma and taboo of sex and sexuality in CKD.Figure 1.: Recommendations for research, education, and practice for sexual health in people with CKD.LGBTQ+, lesbian, gay, bisexual, transgender, queer, and more.Disclosures S.A. Carter reports ownership interest in Commonwealth Serum Laboratories Limited. N. Scholes-Robertson reports an advisory or leadership role for Rural Kidney Association, Inc. (NSW, Australia), role as Patient Editor for Cochrane Kidney and Transplant, and other interests or relationships with BEAT-CKD Consumer Advisory board (Australia) and Rural Kidney Association, Inc. (NSW, Australia). M. Wyld reports an advisory or leadership role for CMV Advisory Board, Takeda Pharmaceuticals—declined payment offer. All remaining authors have nothing to disclose. Funding None.