Sexual dysfunction in women with endometriosis in a low-middle-income country

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This cross-sectional study at Aga Khan University Hospital in Nairobi evaluated sexual dysfunction and sexual distress among 108 women aged 18–49 with a clinically confirmed diagnosis of endometriosis, using the Female Sexual Function Index (FSFI-Q; cutoff ≤26.55 for dysfunction) and the Female Sexual Distress Scale-Revised (FSDS-R; cutoff ≥11.5). Most participants were young (18–29), highly educated, and many were overweight/obese, and the study found a high prevalence of female sexual dysfunction (76.9%) with the lowest mean domain scores in arousal and orgasm, along with pain being among the more affected domains; female sexual distress was also common (65.7%), with highest distress around feeling distressed, guilty, and frustrated about sex life. A key limitation is that the design is cross-sectional, so it does not establish causal relationships between endometriosis and sexual outcomes. This paper is centrally about endometriosis — it quantifies sexual dysfunction and sexual distress in women with endometriosis in a low-middle-income country context.

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Abstract

BACKGROUND: Endometriosis affects up to 10% of reproductive-age women and significantly impairs quality of life including sexual function, intimate relationships, fertility, and psychological wellbeing. While its impact has been extensively studied in Western populations, there is limited Sub-Saharan African data exploring how the disease affects female sexual health and distress. This study aimed to assess sexual function and sexual distress among women with endometriosis at a tertiary hospital in Kenya. METHODS: A cross-sectional study was conducted involving 108 women aged 18 to 49 with confirmed endometriosis from January to June 2022. The study used validated self-administered questionnaires: Female Sexual Function Index (FSFI) and Female Sexual Distress Scale-Revised (FSDS-R). Descriptive and inferential statistics were applied using SPSS v25. FINDINGS: Female sexual dysfunction (FSFI≤26.55) was observed in 76.9% of participants, with the most affected domains being arousal, orgasm, and pain. Sexual distress (FSDS-R≥11.5) was identified in 65.7%. Sociodemographic factors such as marital status, parity, residence, and prior live birth were significantly associated with dysfunction (P < 0.05). INTERPRETATION: Sexual dysfunction and distress are common among Kenyan women with endometriosis, underscoring the need for holistic care strategies that integrate medical and psychosocial support.
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Credit

Edna Chacha: Writing – original draft, Project administration, Investigation, Data curation, Conceptualization. Charles Muteshi: Writing – review & editing, Supervision, Methodology, Formal analysis, Conceptualization. Felix Oindi: Writing – review & editing, Supervision, Methodology. Elsie Wandera: Writing – review & editing, Validation, Resources.

Results

One hundred and twenty participants completed the study questionnaires. We excluded 12 participants on account of gynecological comorbidity leaving a total of 108 women with a diagnosis of endometriosis and undergoing treatment at the AKUHN for the final analysis. It was established that most of the women were aged between 18 and 29 years (52.8%), had tertiary education (96.3%), were single (47.2%) and had no children (51.9%). A notable proportion of the women were overweight (34.3%) and obese (21.3%). Further, majority of the women lived within the capital city Nairobi (79.6%) and were nonsmokers (88%). On the obstetric history, close to half of the women had had a previous live birth (48.1%) with most of these occurring via spontaneous vaginal delivery (63.5%) at term gestation (94.2%). About half were at the time of the study using a contraceptive method (51.9%) with most being the short acting hormonal contraceptive (53.6%) ( Table 1 ). Table 1 Socio-demographic characteristics of the study participants with endometriosis (n=108) Table 1 dummy alt text Demographic variables N (%) Age (y) 18–29 57 (52.8) 30–39 41 (38.0) 40–49 10 (9.3) Education level Secondary 3 (2.8) Tertiary 104 (96.3) Other 1 (0.9) Marital status Single 51 (47.2) Married 46 (42.6) Separated/Divorced 5 (4.6) Other 6 (5.6) Parity 0 56 (51.9) 1–3 51 (47.2) >3 1 (0.9) BMI 18.5–24.9 45 (41.7) 25–29.9 37 (34.3) ≥30 23 (21.3) <18.5 3 (2.8) Place of residence Within Nairobi 86 (79.6) Outside Nairobi 22 (20.4) Smokes cigarettes Yes 13 (12) No 95 (88) Consumes alcohol Yes 54 (50) No 54 (50) Previous live birth Yes 52 (48.1) No 56 (51.9) If yes, mode of delivery (n=52) Spontaneous vaginal delivery 33 (63.5) Caesarean section (CS) 18 (34.6) Induced vaginal delivery 1 (1.9) If yes, gestation (n=52) Term (37–42 wks) 49 (94.2) Preterm (42 wks) 2 (3.8) Previous miscarriage Yes 19 (17.6) No 89 (82.4) Currently using any FP method Yes 56 (51.9) No 52 (48.1) If yes, form of FP (n=56) Short acting hormonal methods 30 (53.6) Long-acting reversible methods 22 (39.3) Barrier methods 4 (7.1) Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Socio-demographic characteristics of the study participants with endometriosis (n=108) Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Using a cutoff score of 26.55 on the FSFI-Q, the prevalence of female sexual dysfunction (FSD) among the study subjects was 76.9% ( Figure 1 ). The sexual function domains with the lowest mean scores were arousal (mean=2.7, SD±1.9) and orgasm (mean=2.8, SD±2.1) while the satisfaction domain had the highest mean score (3.1, SD±1.8) as seen in Table 2 . Figure 1 Prevalence of female sexual dysfunction among women with endometriosis (N=108). This pie chart illustrates the proportion of participants scoring ≤26.55 on the FSFI, indicating sexual dysfunction Figure 1 dummy alt text Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Table 2 Mean domain-specific scores and overall sexual function index (FSFI) scores in women with endometriosis (n=108) Table 2 dummy alt text FSFI domain Mean±SD Desire 3.0±1.4 Arousal 2.7±1.9 Lubrication 3.0±2.1 Orgasm 2.8±2.1 Satisfaction 3.1±1.8 Pain 3.0±2.3 Total sexual function score 17.6±10.6 Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Prevalence of female sexual dysfunction among women with endometriosis (N=108). This pie chart illustrates the proportion of participants scoring ≤26.55 on the FSFI, indicating sexual dysfunction Mean domain-specific scores and overall sexual function index (FSFI) scores in women with endometriosis (n=108) Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. The women’s sexual function domains that were most affected included orgasm, pain and arousal while the least affected domain was desire followed by satisfaction ( Figure 2 ). Figure 2 Domain-specific impairment in sexual function among women with endometriosis. This figure displays the proportion of women affected across 6 FSFI domains. The most affected domains were arousal (mean =2.7), orgasm (mean=2.8), and pain (mean=3.0), indicating significant challenges in physiological and emotional sexual response Figure 2 dummy alt text Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Domain-specific impairment in sexual function among women with endometriosis. This figure displays the proportion of women affected across 6 FSFI domains. The most affected domains were arousal (mean =2.7), orgasm (mean=2.8), and pain (mean=3.0), indicating significant challenges in physiological and emotional sexual response Using the female sexual distress score cut-off of 11.5, the proportion of the women established to have female sexual distress was 65.7% as shown in Figure 3 . Figure 3 Prevalence of Female Sexual Distress among participants (N=108). This figure shows the proportion of women scoring ≥11 on the FSDS-R, indicating clinically significant sexual distress Figure 3 dummy alt text Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Prevalence of Female Sexual Distress among participants (N=108). This figure shows the proportion of women scoring ≥11 on the FSDS-R, indicating clinically significant sexual distress The FSDS-R items with the highest mean were " distressed about one’s sex life " (mean=1.9±1.6), " guilty about sexual difficulties " (mean =1.9±1.5) and " frustrated by one’s sexual problems " (mean=1.9±1.6) while the FSDS item " regrets about one’s sexuality " had the least score (mean=1.2±1.3) ( Table 3 ). Table 3 Mean FSDS values of respective items of the (FSDS-R) Tool (N=108) Table 3 dummy alt text FSDS-R items Mean SD Distressed about your sex life 1.9 1.6 Unhappy about your sexual relationship 1.8 1.4 Guilty about sexual difficulties 1.9 1.5 Frustrated by your sexual problems 1.9 1.6 Stressed about sex 1.8 1.4 Inferior because of sexual problems 1.6 1.5 Worried about sex 1.8 1.6 Sexually inadequate 1.8 1.5 Regrets about your sexuality 1.2 1.3 Embarrassed about sexual problems 1.6 1.6 Dissatisfied with your sex life 1.8 1.5 Angry about your sex life 1.6 1.5 Bothered by low sexual desire 1.8 1.6 Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Mean FSDS values of respective items of the (FSDS-R) Tool (N=108) Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Multivariate analysis of sociodemographic factors and female sexual dysfunction established that education, marital status, parity, place of residence and having had a previous live birth predicted the risk of sexual dysfunction. ( Table 4 ). Table 4 Multivariate analysis of socio-demographic variables with female sexual dysfunction Table 4 dummy alt text Variable Categories FSD prevalence (%) P -value a Age (y) <30 48.2 .424 ≥30 51.8 Education level Tertiary 96.4 .001 No tertiary 3.6 Marital status Married 43.4 .007 b Not married 56.6 Parity None 55.4 .004 b ≥1 44.6 BMI 18.5–24.9 37.3 .689 <18.5 and ≥25 62.7 Place of residence Within Nairobi 78.3 .003 b Outside Nairobi 21.7 Alcohol use Yes 41.0 .363 No 59.0 Previous live birth Yes 44.6 .004 b No 55.4 Previous miscarriage Yes 15.7 .667 No 84.3 Currently using FP method Yes 47.0 .289 No 53.0 Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. a Mann-Whitney U test b Statistically significant at <.05 significance level Multivariate analysis of socio-demographic variables with female sexual dysfunction Chacha. Sexual dysfunction in women with endometriosis in a low-middle-income country. Am J Obstet Gynecol 2026. Mann-Whitney U test Statistically significant at <.05 significance level

Materials

This was a cross-sectional study conducted at the gynecology outpatient clinic of Aga Khan University Hospital, Nairobi (AKUHN). This is a tertiary referral and training facility offering a range of multispecialty services. Study population and sample : Women of reproductive age (18–49 years) with a diagnosis of endometriosis (based on transvaginal ultrasound, magnetic resonance imaging or laparoscopic surgery). One hundred eight women with endometriosis were consecutively recruited between January and June 2022. Inclusion & exclusion criteria : Those included had a confirmed diagnosis of endometriosis and were aged 18–49 years at the time of consultation. However, patients with other gynecological conditions such as uterine fibroids, polycystic ovary syndrome, gynecological malignancies, diabetes mellitus, chronic hypertension, endocrine disorders and psychiatric illnesses and those who had undergone previous reconstructive pelvic surgery were excluded. Data collection & analysis : We collected data using a general demographic tool, the Female Sexual Function Index questionnaire (FSFI-Q) and the Female Sexual Distress Scale-Revised (FSDS-R). The general demographic tool collected data on the participants’ age, education level, marital status, parity, body mass index (BMI), residence and alcohol & substance use. The FSFI-Q is a multifaceted self-reporting data collection tool that evaluates important facets of women’s sexual functioning over the immediate past 4 weeks. 9 It is a standardized questionnaire that contains 19-items assessing 6 facets of female sexual performance. These FSFI-Q tool items are Likert scale rated with scores ranging from 0 to 5 and each of the 6 facets’ tally is computed by summing the counts of the respective items. The aggregate FSFI score range is 2 to 36 and represents the total of all the tallies in the 6 spheres. 13 Greater scores denote favorable female sexual function with a cut off score of ≤26.55 denoting sexual impairment. 11 The Female Sexual Distress Scale-Revised (FSDS-R) is a 13-item 7-day recall own-reporting instrument used for evaluating distress in relation to female sexual function. Participants are asked to rate each item of the tool on a scale that ranges from 0 (never) to 4 (always). Items are then summed up to yield an aggregate tally ranging from 0 to 52, with greater scores denoting sexual distress. 13 The FSDS-R tool has been found to have a high level of reliability as denoted by Cronbach alpha values >0.86 reported in various studies, 14 , 15 while interclass correlation coefficients (ICC) values of >0.74 show a high test–retest reliability of the tool. 16 A validation study by Aydin and others showed the optimal cutoff score of the FSDS-R in detecting the presence of sexual distress to be ≥11.5 with a sensitivity of 97.9% and specificity of 83.2%. 17 These tools were self-administered with additional support offered by the research assistants as needed. Data were analyzed using SPSS version 25.0. Ethical considerations : The Aga Khan University Hospital Ethics Committee approved the study (Ref: 2022/ISERC_20{v2}). Research permit was granted by NACOSTI. Eligible participants signed the informed consent form before taking part in the study.

Discussion

The high prevalence of sexual dysfunction (76.9%) and distress (65.7%) among participants is consistent with international literature but represents a novel insight in the Sub-Saharan context. These findings are particularly significant given the study’s timing during the COVID-19 pandemic, a period that saw significant disruption of gynecological services, delays in elective procedures such as laparoscopic surgery, and increased psychological stress, all of which may have compounded the sexual health burden. The FSFI results highlight a particularly strong impact on arousal, orgasm, and pain, key domains that are closely linked to the physiological experience of sex. Dyspareunia due to pelvic lesions may be explained by pain-driven dysfunction. Chronic pain fosters anticipatory anxiety and avoidance of intercourse, worsening arousal and orgasm. 6 , 18 Psychological sequelae of depression, infertility-related stress, and relational strain may compound these effects. 19 This aligns with earlier findings by Vercellini et al. 13 and Montanari et al. 10 who reported high rates of dyspareunia and low sexual satisfaction among women with deep infiltrating endometriosis. 10 , 13 The elevated levels of sexual distress reinforce the multidimensional impact of endometriosis. FSDS-R scores suggest that women are not only experiencing difficulties in performance but also grappling with emotional consequences of guilt, frustration, and feelings of inadequacy. These are elements that are not often discussed in clinical settings. Several studies echo these findings. Caruso et al. found that endometriosis-related pelvic pain significantly reduced quality of life and sexual satisfaction. 7 Barbara et al. 9 also reported that sexual dysfunction in endometriosis is often underdiagnosed and undertreated, in part due to stigma or clinician discomfort with discussing sexual health. 9 Interestingly, the significant association between marital status and dysfunction diverges from some studies suggesting that partnered women may have more emotional support. However, in this context, the expectation of sexual intimacy in marriage may increase distress when dysfunction occurs. Likewise, parity appeared protective, echoing research by De Graaff et al. 11 which showed that women with supportive partners and children report lower rates of distress. 11 This may be due to reduced pressure around fertility and more robust relational bonding. The COVID-19 pandemics likely played a role in both exacerbating symptoms and limiting coping resources. Social distancing measures may have reduced access to pain management, counseling, and sexual therapy services. 20 In addition, increased household stress and changes in relationship dynamics during lockdowns could have further influenced sexual functioning. Patients may also have deprioritized their own health due to caregiving burdens or economic instability thus delaying follow-up visits, hesitating to initiate discussions about sexuality, or lacking the privacy needed for self-administered questionnaires during lockdowns. However, being a cross-sectional study, any association with the COVID-19 pandemic may not necessarily be causal and this interpretation should be taken cautiously. These findings suggest that sexual health should be integral to endometriosis care, particularly in resource-limited settings where sexual medicine is not routinely practiced. Clinicians should be trained to use validated tools like FSFI and FSDS-R, initiate sensitive conversations around sexual pain and dysfunction and refer patients for psychosocial support when needed. The conclusions, however, should be taken cautiously as the study was conducted in a tertiary private healthcare institution whose clientele are of higher education level and socio-economic status. The results may therefore not be generalizable to the entire population of women with endometriosis in the country considering that those with other gynecological conditions were excluded. We did not also explore the women’s partners’ perspective on the study subject as this could have a significant influence on women’s sexual function.

Conclusions

Sexual dysfunction and distress are highly prevalent among Kenyan women with endometriosis. It is important that physicians managing patients with endometriosis are aware of this and embrace a paradigm shift towards holistic, multidisciplinary care, combining gynecology, psychology, and sexual health support.

Introduction

Endometriosis is a benign chronic condition that affects up to 10 percent of women of child-bearing age. It’s marked by the presence of endometrial like tissue outside the uterine cavity. 1 Most women present with chronic pelvic pain that may be characterized by cyclical dysmenorrhea, dyschezia, dysuria or dyspareunia. Others may manifest with subfertility or nonspecific symptoms such as fatigue or abdominal bloating. 2 It is estimated that as many as 190 million women of reproductive age have diagnosed endometriosis globally. 3 However, they only represent a section of the global burden, as it is projected that as many as 6 out of every 10 cases of endometriosis remain unidentified 2 leaving may women with endometriosis suffering consequences without the knowledge of the condition. 3 , 4 Women with endometriosis are prone to diagnostic delay as long as 10 years in some countries. 3 Moreover, medical and surgical treatment of endometriosis does not always provide long term relief leading to discontinuation or repeated surgeries respectively. 5 , 6 For women desiring fertility management, hormonal therapy is not recommended treatment, and they could benefit from surgical intervention. However, there is only moderate evidence that laparoscopic surgery for minimal or mild disease and ovarian endometrioma excision improves pregnancy rates. 4 Women with endometriosis report compromised quality of life that may have ramifications on productive function, relationships and social functioning. 7 Sexual function constitutes an integral component in persons’ social, mental and physical wellbeing and in their QoL. 8 It covers a wide range of aspects including sexual orientation, pleasure, arousal, intercourse, sexual closeness, reproduction as well as gender identity and roles. 9 A wide range of factors interact dynamically to create it. 10 Female sexual impairment includes abnormalities of sexual interest, eroticism/arousal, pain and sexual satisfaction which arises from disruptions to sexual reaction causing significant personal distress. 11 Management of sexual dysfunction is multidisciplinary and includes psychological, physical and pharmacological therapies. 12 Whereas endometriosis associated sexual dysfunction is reported elsewhere, there are no studies from the African subpopulation. Our study therefore sought to bridge this gap using validated tools in patients with a clinical diagnosis of endometriosis in an academic medical center.

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