Type 1 diabetes is a chronic medical condition that results from autoimmune destruction of pancreatic β-cells, resulting in hyperglycemia and the need for exogenous insulin replacement for survival (1). Its global incidence has steadily increased over the past couple of decades to the current estimated worldwide prevalence of 9.5 per 10,000 individuals (2).
A diagnosis of type 1 diabetes poses many time-consuming and stressful challenges to everyday life; achieving and maintaining safe blood glucose levels involves the delicate balancing of carbohydrate intake, physical activity, and insulin administration, which is further complicated by biological, psychosocial, behavioral, and environmental stressors (3). Type 1 diabetes is also associated with a wide range of complications, including retinopathies, vasculopathies, nephropathies, and neuropathies, in addition to other autoimmune disorders. Sexual dysfunction is another known complication, but the majority of research on diabetes-related sexual dysfunction and related clinical guidelines focus heavily on men (4). Thus, more research on and attention to sexual dysfunction in women with type 1 diabetes are needed.
Robust literature has linked type 1 diabetes to higher prevalences of female sexual dysfunction compared with both women without diabetes and those with type 2 diabetes (5–7), and nearly all domains of sexual response, such as decreased desire, arousal, vaginal lubrication, ability to orgasm, satisfaction, and dyspareunia, have been shown to be negatively affected (8). The disproportionate burden experienced by women with type 1 diabetes likely stems from a unique intersection of physiological and psychosocial factors that specifically affect sexual health.
Although type 1 and type 2 diabetes share many physiological features and social experiences (particularly type 1 diabetes and insulin-requiring type 2 diabetes), distinct differences exist between these two conditions. For example, because type 1 diabetes is typically diagnosed in childhood, adolescence, or young adulthood (9), which is comparatively decades earlier than typical type 2 diabetes diagnoses (10), many individuals with type 1 diabetes live with and manage their disease both for a longer period of time and during a highly critical time period for sexual maturation and development. Women with type 2 diabetes are also more likely to have additional comorbidities and to be treated with medications that affect sexual function, which contribute to sexual dysfunction and affect therapeutic approaches. In light of these variances, sexual dysfunction in each of these populations warrants separate attention. This article solely explores sexual dysfunction in women with type 1 diabetes.
Individuals with type 1 diabetes commonly receive their diabetes care from primary care clinicians rather than endocrinologists (11,12), and sexual health training is unfortunately often lacking in primary care fields (13). With sexual health being essential for most people’s quality of life across the life span (14–19), improved awareness regarding the sexual concerns of women with type 1 diabetes will aid clinicians in the timely recognition, screening, and management of sexual dysfunction these women may experience. To best support primary care clinicians caring for women with type 1 diabetes, we present the prevalence and pathogenesis of sexual dysfunction in this established, yet often overlooked, population. We then discuss current and optimal screening and management strategies of sexual dysfunction in women with type 1 diabetes.
A Note on Sex and Gender Terminology
Sex and gender are distinct entities of one’s identity, with sex generally referring to one’s genetics or physical anatomy, whereas gender refers to the roles, expressions, and behaviors socially constructed by a society (20). Although both “women” and “female” are used throughout this article, this work applies to individuals who identify with any sex or gender aspect of femaleness or womanhood. Furthermore, sexual health and functioning discussed here is intended to encompass a diversity of sexual experiences and orientations beyond that of the heteronormative worldview.
It must be noted that no research to date has specifically studied sexual dysfunction in transgender women or nonbinary individuals with type 1 diabetes; consequently, the work presented here may disproportionally apply to cisgender women in light of this gap in the literature.
What Is Female Sexual Dysfunction?
Female sexual dysfunction is a broad term that describes a wide array of problematic and personally distressing sexual symptoms such as decreased desire and arousal, decreased vaginal lubrication, pain during sexual activity, or difficulty achieving orgasm (21,22). Specific disorders, as classified by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, 5th ed., text revision (DSM-5-TR) (23), are detailed in Table 1. These disorders include female sexual interest/arousal disorder, female orgasmic disorder, genito-pelvic pain/penetration disorder, substance/medication-induced sexual dysfunction, other specified sexual dysfunction, and unspecified sexual dysfunction. Each disorder must fulfill detailed criteria regarding symptoms, and, in general, the dysfunction must be present for a minimum of 6 months and cause the individual significant distress. In contrast, individuals who identify as asexual are not distressed by their minimal or complete lack of sexual attraction, desire, interest, and engagement and therefore do not meet criteria for sexual dysfunction (24).
Table 1.
Overview of DSM-5-TR Diagnoses for Female Sexual Dysfunction
| Diagnosis | Description |
|---|---|
| Female sexual interest/arousal disorder (F52.22) | An absence of or reduction in sexual arousal and/or interest in sexual activities |
| Female orgasmic disorder (F52.31) | A delay or inability of achieving orgasm |
| Genito-pelvic pain/penetration disorder (F52.6) | Significant pelvic pain, vaginal spasms, or tightening of the pelvic floor muscles during vaginal intercourse |
| Substance/medication-induced sexual dysfunction | Sexual dysfunction secondary to a side effect of a prescribed medication or recreational substance |
| Other specified sexual dysfunction (F52.8) | The presence of sexually distressing symptoms that do not fulfill or align with the criteria of the aforementioned diagnoses |
| Unspecified sexual dysfunction (F52.9) | The presence of sexually distressing symptoms that do not meet the criteria of the aforementioned diagnoses and the inability to specify a diagnosis due to a lack of information |
DSM-5-TR diagnosis codes are listed in parentheses except for substance/medication-induced sexual dysfunction disorder, as multiple diagnosis codes exist for this depending on the substance type and severity of dysfunction.
Prevalence of Sexual Dysfunction Among Women With Type 1 Diabetes
Several studies have investigated the prevalence of sexual dysfunction in women with type 1 diabetes starting as early as 1986 (25). In a recent meta-analysis of 19 studies, the pooled prevalence of sexual dysfunction— broadly defined as anything related to a sexual problem or dysfunction or issue with sexual satisfaction or orgasm—in women with type 1 diabetes was 38.5% but ranged widely from 18.35 to 77.8% (26).
Because the prevalence of sexual dysfunction increases with age and has been found to be highest among postmenopausal women (27), a separate meta-analysis of premenopausal women with type 1 diabetes showed a similar pooled prevalence of 36%, which was higher than the pooled prevalence of 13% in premenopausal women without diabetes (28). Ultimately, women with type 1 diabetes were 3.8 times more likely to experience sexual dysfunction than premenopausal women without diabetes (28).
Pathogenesis of Sexual Dysfunction in Women With Type 1 Diabetes
The root cause of sexual dysfunction in women with type 1 diabetes is unknown but likely stems from a unique combination of physiological and psychosocial factors that interact throughout their sexually active years (Figure 1).
Figure 1.
Pathogenesis of sexual dysfunction in women with type 1 diabetes. Although the etiology of sexual dysfunction in women with type 1 diabetes is not fully understood, both physiological and psychosocial factors throughout the longevity of their sexually active years likely contribute to its development.
Physiological Factors
Multiple physiological factors are involved in the pathogenesis of sexual dysfunction in women with diabetes, including hyperglycemia, vasculopathy, neuropathy, hormonal imbalances, and genitourinary infections. Hyperglycemia itself can lead to osmotic diuresis (29) and dehydration of mucous membranes, including vaginal dryness (30). Decreased lubrication can cause dyspareunia.
Vasculopathic complications of diabetes impair blood flow to the clitoris and vaginal tissue (31,32), ultimately affecting sexual arousal. Given this, physical activity is predictably associated with better sexual functioning in women with type 1 diabetes, as exercise increases the blood circulating to the genital organs, leading to more lubrication, sensitivity, and arousal (33).
Because both the sympathetic and parasympathetic nervous systems are involved in sexual arousal (34), diabetic neuropathies may also negatively affect sexual function and response. One study found that women with type 1 diabetes and neuropathic complications had a higher threshold for clitoral stimulation (35), possibly making it more difficult for these women to achieve an orgasm. A mouse study by Giraldi et al. (36) demonstrated impaired smooth muscle relaxation in genital tissue, a process mediated by neurotransmitters such as vasoactive polypeptide and nitric oxide, which can negatively affect vaginal dilation (37) and may lead to dyspareunia.
Female sexual response also depends on the balance of steroid hormones, namely androgens and estrogens (34). Insulin has been shown to affect the synthesis and levels of steroid hormones (38,39), particularly by promoting gonadotropin-releasing hormone secretion via the hypothalamic-pituitary-gonadal axis (40). In the insulin-deficient state of type 1 diabetes, these hormones may become imbalanced and consequently lead to sexual dysfunction. Salonia et al. (41) found that the endocrine profiles of women with type 1 diabetes differed from those of women without diabetes, with lower levels of 17-β-estradiol and progesterone, higher levels of testosterone, and greater severity of sexual dysfunction during the luteal phase of the menstrual cycle in women with type 1 diabetes.
Individuals with type 1 diabetes and female genital anatomy are at an increased risk of vulvovaginal candidiasis (42), as elevated glucose levels impair the ability of neutrophils to defend against Candida infections while also serving as a nutritional source of yeast (43). A vulvovaginal infection can lead to dyspareunia (44). This population is also at increased risk of developing urinary tract infections (45,46), another contributor to dyspareunia.
Psychosocial Factors
Diverse psychosocial factors play a role in female sexual dysfunction as well. The mainstay treatment of type 1 diabetes is insulin replacement, either via multiple daily injection (MDI) therapy or continuous subcutaneous infusion (i.e., insulin pump therapy). With MDI therapy, injection site reactions, bruising, visible skin damage, and lipohypertrophy can be noticeable on women’s bodies, leading to feelings of insecurity and adversely affecting sexual functioning (47). Those with wearable devices such as continuous glucose monitoring systems or insulin pumps have also voiced concerns regarding how these may interrupt sexual activity, particularly if they become unattached or disconnected (48,49). Additional distress over how these devices may be seen as unattractive or feelings of bodily insecurity have also been raised by young people with diabetes (48,49). During sexual activity, fear of hypoglycemia, a common concern with insulin therapy, can cause distress and both avoidant and compensatory behaviors that hinder sexual function and glycemic control (49–51).
The most researched psychological factor thought to have an impact on sexual functioning in women with type 1 diabetes is depression (8,52–56), when it is present. Longer diabetes duration is also a strong predictor of sexual dysfunction (26); however, the factors postulated to underlie this, such as age, BMI, A1C, and the presence of diabetes complications, have not shown consistent effects (26). Rather, the effect may be related to how women with a longer duration of diabetes are more likely to have depression that impairs sexual functioning (57). Finally, among women with type 1 diabetes, those with a lower acceptance of their condition have higher rates of sexual dysfunction than those with better acceptance (58).
Screening Women With Type 1 Diabetes for Sexual Dysfunction
The American Diabetes Association’s (ADA) annual Standards of Care in Diabetes provide guidance for diagnosing, treating, and managing diabetes across the life span. Although the ADA lists female sexual dysfunction as a possible neuropathic complication of diabetes (59), there is no recommendation to screen women with diabetes for sexual dysfunction. In contrast, the ADA suggests screening men with diabetes for low testosterone if they exhibit “symptoms or signs of hypogonadism, such as decreased sexual desire (libido) or activity, or erectile dysfunction” (4). This discrepancy in screening recommendations for sexual dysfunction between men and women can negatively affect the health care women receive if they are underdiagnosed and undertreated for sexual dysfunction. Therefore, we advocate for inclusion of a recommendation in the ADA’s Standards of Care to screen women with diabetes routinely for sexual dysfunction as part of their comprehensive diabetes care to best optimize their quality of life.
Furthermore, despite the highly documented prevalence of sexual dysfunction among women with type 1 diabetes, there is no specific screening tool recommended by diabetes practice guidelines to detect sexual dysfunction in women with type 1 diabetes in clinical practice. The first and only questionnaire to specifically assess the sexual and reproductive health of women with type 1 diabetes is the validated Sexual-Reproductive Health Profile of Women with Type-1 Diabetes Mellitus (SRHP of WT1DM), published in 2022 (60). It consists of 53 questions and broadly covers topics such as puberty, menstruation, pregnancy and childbirth, menopause, and verbal and physical abuse in addition to the effect of diabetes on various sexual and reproductive topics. Nine questions are dedicated to sexual dysfunction; the responses are scored on a Likert scale from 1 to 5 and summed to give a total composition number for this section. Lower scores are associated with sexual dysfunction, although the authors did not establish a cutoff score that would be considered diagnostic of sexual dysfunction. Another important limitation of this questionnaire is that it was validated in heterosexual, married women with frequent usages of the word “husband” throughout, which is not generalizable to the diversity of sexuality and sexual experiences among women.
Although not specific to women with type 1 diabetes, the Female Sexual Function Index (FSFI) is a more commonly used tool to screen women 18–70 years of age for sexual dysfunction (61). Published in 2000, this self-report tool consists of 19 questions that assesses six dimensions of sexual health, including sexual desire, arousal, vaginal lubrication, orgasm, satisfaction, and pain with sexual activity. The maximum score is 36, with lower scores associated with sexual dysfunction. A score ≤26.55 indicates sexual dysfunction (62). A shortened version of the FSFI, with only six questions, also exists (63).
Other less common questionnaires to screen women for sexual dysfunction include the Sexual Quality of Life—Female (64), the Female Sexual Distress Scale (65), and the Golombok-Rust Inventory of Sexual Satisfaction (66). However, these tools are not used routinely in practice (67), which hinders not only screening and diagnosis of sexual dysfunction in women with type 1 diabetes, but also the ability to assess responses to treatment and other interventions to improve sexual health.
Discussions of Sexual Health and Function Between Clinicians and Women With Type 1 Diabetes
Communication between individuals with type 1 diabetes and health care professionals regarding sexual health has been shown to be inadequate and mostly lacking in current medical practice (68). Yet, sexual dysfunction is a major concern for people with diabetes, with 16.5% reporting a desire to discuss how diabetes affects their sex life with their health care provider (69). Stechova et al. (70) reported that only one-fifth of women with type 1 diabetes had the opportunity to discuss sexual health with their physician. A small qualitative study of women with type 1 diabetes revealed that almost all participants wished that sexual health was addressed at their yearly appointments (49). Another qualitative study engaging women with type 1 diabetes noted that inquiring about sexual dysfunction would be appropriate during their routine care (47).
Many potential factors could underlie the gaps in discussing sexual health in clinical encounters. Clinicians may not prioritize concerns about sexual dysfunction during outpatient appointments, as these issues are not a life-threatening complication of diabetes nor are there quality measures related to sexual health in diabetes that incentivize discussion. Clinicians may further hesitate to initiate these discussions because medical training on sexual health is generally lacking (71,72). Simultaneously, people with diabetes may hesitate to bring up their sexual health concerns to their health care providers because of embarrassment or cultural norms. Women may be especially uncomfortable discussing sexual concerns with male clinicians (73–75). Younger women are also more likely than older women to cite embarrassment and fears of discrimination as barriers to discussing sexual health with their clinicians (74).
It is therefore crucial that all women with type 1 diabetes be asked about their sexual health as part of their routine and comprehensive primary and diabetes care. Table 2 shows concrete suggestions for discussing sexual health with this population. Specific sexual health challenges faced by women with type 1 diabetes that could be addressed during clinic visits are listed in Table 3. Of note, none of these topics are addressed in the first-of-its-kind questionnaire mentioned earlier to assess the sexual and reproductive health of women with type 1 diabetes (the SRHP of WT1DM).
Table 2.
Practical Recommendations for Discussing Sexual Health at Diabetes Clinical Care Visits
| Topic | Suggested Actions or Language |
|---|---|
| Recognize your own discomfort and bias regarding topics of sexuality (81). | Take the (free) sexuality and/or transgender implicit association test(s) available from https://implicit.harvard.edu/implicit/takeatest.html. |
| Create an inclusive clinic environment for all variations in sexuality and gender identities (81). | Respect individuals’ pronouns. Use correct sex and gender terminology. Avoid assumptions or judgments about an individual’s sexual identity, partner choices, and/or sexual practices. |
| State that sexual health is a routine part of a health evaluation for every patient in an effort to normalize the topic (82). | “I ask all of my patients about their sexual health as part of their routine health checkup.” |
| Assess willingness to engage in conversation before inquiring about sexual functioning. | “Tell me about your openness to discussing topics related to sexual health at today’s visit.” |
| Initiate sexual health conversations with open-ended questions (81). | “Many people are concerned about how type 1 diabetes might affect their sex life. What is your experience?” |
| Engage in active listening (83). | Repeat patient concerns back to them with paraphrasing or using their own words (e.g., “I hear you’re concerned about . . . .” |
Table 3.
Type 1 Diabetes–Specific Sexual Health Challenges to Address With Women at Clinical Visits
|
Management of Sexual Dysfunction in Women With Type 1 Diabetes
No guidelines currently exist for the treatment of sexual dysfunction specifically for women with type 1 diabetes. Two studies have investigated the role of the phosphodiesterase-5 inhibitors tadalafil and sildenafil in treating sexual arousal disorder in premenopausal women with type 1 diabetes (76,77). Both medications improved sexual arousal, increased the frequency of orgasms, and decreased dyspareunia. However, these agents are not approved for use in any women with sexual dysfunction, with or without type 1 diabetes. The two U.S. Food and Drug Administration–approved medications for the treatment of hypoactive sexual desire disorder (now known as female sexual interest/arousal disorder), flibanserin and bremelanotide, have not been examined in women with type 1 diabetes. Moreover, flibanserin is minimally effective (78), and bremelanotide demonstrated fetal and developmental harm in animal studies (79), requiring the concomitant use of effective contraception.
Thus, the first step in treating sexual dysfunction in women with type 1 diabetes is to assess for likely causes (Figure 1). Painful vulvovaginal conditions and infections must be treated first (44). Concurrently, it is essential to optimize glycemic management and to identify barriers related to fear of hypoglycemia and body self-image. Engagement of diabetes care and education specialists, as well as mental health professionals with expertise in caring for women with type 1 diabetes, can help to support these goals.
Otherwise, the management of sexual dysfunction in women with type 1 diabetes should mirror that recommended in the general population. A comprehensive interview that covers medical, psychiatric, surgical, social, and sexual and reproductive histories should be obtained in addition to a review of the patient’s medications (80). Next, a physical examination, including a pelvic exam, should be performed. Clinicians may opt to check thyroid, prolactin, and testosterone levels as part of their evaluation for sexual dysfunction to rule out medical etiologies (80). First-line approaches to treating female sexual dysfunction include lifestyle changes (e.g., smoking cessation, engaging in physical activity, improving sleep, reducing stress, and eating healthy foods); sex and/or cognitive behavioral therapy; the use of vaginal lubricants and moisturizers; encouragement of novelty in sexual encounters (such as new positions or devices that increase pleasure); and, as appropriate, referrals to a urologist, gynecologist, mental health professional, pelvic floor physical therapist, or sexual medicine clinician. For sexual dysfunction that is refractory to nonpharmaceutical modifications, hormonal therapies may be considered in postmenopausal women. Finally, consistent follow-up with individuals experiencing sexual dysfunction is recommended to assess the progress of their sexual functioning.
Conclusion
Sexual dysfunction among women with type 1 diabetes is common worldwide (26,28). This population has distinct lived experiences that may affect their sexual health and functioning compared with women with type 2 diabetes and those without diabetes. The few studies of women with type 1 diabetes revealed that screening for and management of sexual dysfunction during clinical encounters is inadequate, likely exacerbated by the lack of an inclusive screening tool, effective therapeutic options, and clinical guideline recommendations on this topic. More research is needed to understand the root causes of sexual dysfunction in women with type 1 diabetes, as well as transgender and nonbinary individuals. In the meantime, clinicians should take a proactive approach in addressing sexual health, an important but frequently neglected component of well-being, with their female patients with type 1 diabetes at each clinic visit.
Acknowledgments
Duality of Interest
R.G.M. has received support from the National Institute of Diabetes and Digestive and Kidney Diseases and the National Institute of Aging of the National Institutes of Health, the Patient-Centered Outcomes Research Institute, the National Center for Advancing Translational Sciences, and the ADA. She serves as a consultant to EmmiEducate (Wolters Kluwer) and to the Yale–New Haven Health System’s Center for Outcomes Research and Evaluation and has received speaking honoraria and travel support from the ADA. No other potential conflicts of interest relevant to this article were reported.
Author Contributions
S.M.S. researched data and wrote the manuscript. A.R.-L., S.C.W., and R.G.M. reviewed and edited the manuscript. S.M.S. is the guarantor of this work and, as such, had full access to all the data reported and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Funding Statement
A.R.-L. and R.G.M. are investigators at the University of Maryland Institute for Health Computing, which is supported by funding from Montgomery County, MD, and the University of Maryland Strategic Partnership: MPowering the State, a formal collaboration between the University of Maryland, College Park, and the University of Maryland, Baltimore.
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