Experiences related to sexual function among women with endometriosis: perspectives of women and healthcare providers in Iran

This qualitative research conducted between September 2023 and May 2024, employing a content analysis approach. Participants included 12 women diagnosed with endometriosis and 12 healthcare providers, comprising midwives, gynecologists, reproductive health specialists, psychiatrists, and psychologists in Isfahan, Iran (Table  1 ). Women with endometriosis were selected using purposive sampling with a maximum variation strategy regarding age, occupation, education level, socioeconomic status, length of marriage, number of pregnancies and deliveries, type of treatment received, and time since diagnosis of the disease. Healthcare providers were also selected with a maximum variation in terms of their work experience. Inclusion criteria for women with endometriosis include: i) Iranian nationality, ii) able to communicate and share experiences, iii) willingness to participate in study, iv) elementary and higher education, v) at the reproductive age (19–45 years), vi) married and sexually active in a monogamous relationship, vii) endometriosis diagnosis by a gynecologist, viii) no pregnancy or breastfeeding, ix) not undergoing assisted reproductive technologies (ART) treatments, x) no history of diagnosed psychiatric disorders requiring medication, xi) no history of drug and alcohol use in the woman and her husband, xii) absence of premature ejaculation or erectile dysfunction in husbands before endometriosis diagnosis in women, xiii) absence of surgical history in the participating women and their spouses such as prostatectomy, mastectomy, and other breast surgeries, xiv) no history of stressful events in the last 6 months, xv) no diseases that affect the sexual function of participating women and their spouses including liver, renal, and lung failure; cardiovascular diseases; cancers; ulcerative colitis; vasculitis; thyroid and adrenal cortex diseases; diabetes; high blood pressure; central nervous system (CNS) disorders; and sexually transmitted infections (STIs), xvi) no use of drugs that affect the sexual function of the participating women and their spouses including psychoactive, cardiac, antihypertensive, thiazide diuretics, antidepressants, anticonvulsant, hypnotic, narcotic, hormonal agents, antihistamines, and anticancer drugs [ 12 – 14 ]. Also, the inclusion criteria for healthcare providers were having work experience in the field of endometriosis and willingness to participate in the study. In the present study, participants were recruited through comprehensive health service centers, gynecologic clinics of educational hospitals affiliated with Isfahan University of Medical Sciences, sexual health clinics, private offices of gynecologists and psychiatrists, psychology and counseling centers, and midwives’ offices. Such individuals were invited by phone calls or face-to-face meetings. No one refused to participate or dropped out of this study once they were recruited to participate. The first author (M.H.S) had no previous relationship with the centers and participants. Table 1 Demographic characteristics of participants Demographic characteristics of participants Data collection was conducted using in-depth, semistructured individual interviews and field notes. The first author (M.H.S) conducted the interviews and filed notes. She had 16 years of working experience in midwifery and was a Ph.D. candidate in reproductive health in Isfahan University of Medical Sciences. Three other authors had previous experience in qualitative paper/report writing and interviewing. Prior to data collection, M.H.S wrote down initial preconceptions about the study topic based on her previous working experience. Questions and guides were provided and this was piloted in one pilot interview. A total of 24 individual interviews each lasting 60–90 min were conducted. Interviews began with broad, open-ended questions and continued with probing questions to explore responses in greater depth. Exploratory follow-up questions were used to elicit richer data. Examples of guiding questions for women with endometriosis included “What issues have you experienced in living with endometriosis since you found out you had it? How has endometriosis affected your marital life? How has your sexual relationship with your partner changed since you found out about the disease? please explain this? and then the participants' open answers guided the process. All interviews were digitally recorded using an MP4 device. No one else was present at the interview besides the researcher and participants. Interviews were conducted in participants' preferred places and continued until data saturation, defined as the point at which no new data was obtained during the analysis [ 15 ]. Data saturation was reached by interviewing 20 persons, with no new code being formed and all codes previously obtained and duplicated. However, to avoid false data saturation, the researchers conducted another four interviews after repletion of codes in interview NO.20, to be more confident of achieving accurate data saturation, with no new data in the next four interviews. In this point, the researchers concluded that they would stop the data collection and analysis because data saturation has been obtained. During field note-taking, M.H.S systematically documented nonverbal cues, including body posture, facial expressions, tone of voice, emotional reactions, and participant interactions during interviews. Data were analyzed using conventional content analysis, following the approach of Graneheim and Lundman [ 16 ] (Table  2 ). Data analysis was performed manually and no software was used. The first author (M.H.S) promptly and regularly transcribed the interview data. Then, the interviews were reviewed repeatedly to get a comprehensive understanding and code the sentences and phrases using the inductive method. Coding was done by the first author (M.H.S), with a subset of 10% of the transcripts coded independently by the second author (M.N) using the developed coding frame. A code book was developed by the first author (M.H.S) based on the research objectives and interview guide and then, was shared with the research team. Coding discrepancies were resolved through discussion and consensus. In the next step, similar codes were merged and grouped into sub-categories based on conceptual similarity. Finally, by comparing these sub-categories with one another, conceptually related groups were combined to form main categories. Table 2 Example of the coding process Example of the coding process In the present study, to ensure data credibility, multiple methods were employed, including conducting in-depth interviews, prolonged engagement of the researcher with the study topic, and purposive sampling with maximum variation. To enhance dependability, coded interviews were reviewed in follow-up sessions with four participants, and their final feedback was incorporated. This process ensured that interviews have properly interpreted participants’ meanings (member checking). To increase transferability, the findings were presented to four women with endometriosis, who had similar characteristics to the participants but were not part of the original study, to assess the similarity between the results and their own experiences. For confirmability, the opinions of four experts were sought to verify the consistency and accuracy of the findings with participants’ statements. In this regard, by carefully describing the details of the research context, analysis steps and results extraction, it was possible to audit and evaluate the study by external reviewers. Ethical approval was obtained from the Ethics Committee of Isfahan University of Medical Sciences (Code: IR.MUI.NUREMA.REC.1402.095). In this study, the reasons for the study were explained prior to each individual interview. Also, informed consent, the right to withdraw at any time, and confidentiality of information were strictly observed.

Data analysis revealed a profound and pervasive impact of endometriosis on the sexual and marital lives of participating women with endometriosis and their husbands, extending beyond physical pain to encompass psychological distress, relational strain, and systemic neglect from the healthcare system. Data analysis led to the extraction of 55 inferential codes, 21 sub-categories, and six main categories. The main categories included “neglect in addressing sexual dysfunction,” “effects of the disease and its treatment on marital life,” “sexual foresight,” “unmet needs and expectations,” “husband's experiences of sexual dysfunction” and “the spectrum of women's sexual dysfunction” (Table  3 ). Table 3 Main categories, sub-categories, and codes derived from data analysis Main categories, sub-categories, and codes derived from data analysis According to the participants, women with endometriosis experience multiple challenges, such as chronic pelvic pain, irregular bleeding, dysmenorrhea, and infertility. Prioritizing the management of these physical symptoms often leads to neglect of sexual relationship issues and inadequate follow-up on sexual dysfunction. This main category includes two sub-categories: “dealing with the signs and symptoms of the disease” and “underestimating problems related to sexual function”. Participants described experiencing a spectrum of debilitating symptoms including dysmenorrhea, chronic pelvic pain, dyschezia, irregular uterine bleeding, chronic fatigue, and infertility. These symptoms exerted a profound impact on women, significantly disrupting the normal course of their lives. “During my period, I could not walk at all; the pain was excruciating.” (Woman with endometriosis) “During my period, I could not walk at all; the pain was excruciating.” (Woman with endometriosis) “Most of women present with dyspareunia, dyschezia, dysuria, dysmenorrhea, and chronic pelvic pain. These are the five main symptoms we routinely inquire about.” (Gynecologist) “Most of women present with dyspareunia, dyschezia, dysuria, dysmenorrhea, and chronic pelvic pain. These are the five main symptoms we routinely inquire about.” (Gynecologist) According to participants, women with endometriosis often overlook sexual difficulties, focusing their primary concerns and allocating financial resources to the management of infertility and chronic pelvic pain. Many regarded alleviation of persistent pelvic pain as a critical prerequisite for a satisfying sexual relationship. “… It no longer matters whether I reach orgasm or not; what matters is that my husband does, so that pregnancy can happen.” (Woman with endometriosis) “… It no longer matters whether I reach orgasm or not; what matters is that my husband does, so that pregnancy can happen.” (Woman with endometriosis) “In reality, the patient’s main concern is not sex—it is severe pain. Both patients and even physicians often assume that if the pain is resolved, sexual problems will automatically improve, so the issue is left unaddressed.” (Gynecologist) “In reality, the patient’s main concern is not sex—it is severe pain. Both patients and even physicians often assume that if the pain is resolved, sexual problems will automatically improve, so the issue is left unaddressed.” (Gynecologist) According to the participants, the disease, its associated limitations, and the treatment process were perceived as significant determinants of marital life. This main category derived from six sub-categories: “mood and psychological changes in women,” “mood and psychological changes in husbands,” “consequences related to medical and surgical treatments,” “psychosocial aspects of infertility caused by endometriosis,” “facing economic problems resulting from the disease”, and “disruption of personal and social life.” Participants narrated that experiencing mood disturbances, including anxiety and depression, due to the disease and its associated limitations. Chronic pelvic pain and infertility contributed to feelings of hopelessness, regret, and dissatisfaction with their sexual functioning. These experiences further increased anxiety, elicited guilt toward their partners (due to perceived inability to meet their partners’ sexual needs), reduced self-confidence, and strained marital relationships. “… Because of the pain, I became irritable, and over the past few years, our relationship has grown very cold because I was irritable during sexual activity.” (Woman with endometriosis). “… Because of the pain, I became irritable, and over the past few years, our relationship has grown very cold because I was irritable during sexual activity.” (Woman with endometriosis). “These patients experience high levels of stress due to infertility, which naturally affects their sex life and adversely influences their sexual functioning.” (Gynecologist) “These patients experience high levels of stress due to infertility, which naturally affects their sex life and adversely influences their sexual functioning.” (Gynecologist) Participants narrated that endometriosis imposed significant emotional strain on their husbands, who experienced distress, fatigue, irritability, and high levels of stress. Contributing factors included repeated medical visits, concern about unsatisfactory treatment outcomes, and dissatisfaction with sexual relations due to the woman’s dyspareunia. “… My husband was exhausted from all the appointments, and each time we returned home, we would argue because we were both tense and worn out.” (Woman with endometriosis) “… My husband was exhausted from all the appointments, and each time we returned home, we would argue because we were both tense and worn out.” (Woman with endometriosis) Healthcare providers also highlighted feelings of guilt, inadequacy, anxiety, and depression in husbands when confronted with their partner’s symptoms and treatment process. “When a man sees his wife in pain and anxiety, he gradually develops feelings of guilt and inadequacy, questioning whether he might somehow be causing her harm.” (Psychologist) “When a man sees his wife in pain and anxiety, he gradually develops feelings of guilt and inadequacy, questioning whether he might somehow be causing her harm.” (Psychologist) Participants narrated that dyspareunia and chronic pelvic pain not only made sexual intercourse painful but also caused fear of recurrence, which in turn led to sexual avoidance. Some husbands refrained from initiating sex out of concern for causing pain, particularly in situations involving irregular menstrual bleeding and infertility-related stress. “… These women usually don’t have sexual satisfaction because of the pain they experience during intercourse—neither they nor their husbands.” (Gynecologist) “… These women usually don’t have sexual satisfaction because of the pain they experience during intercourse—neither they nor their husbands.” (Gynecologist) “My husband tries not to ask for sex because of the pain I go through.” (Woman with endometriosis) “My husband tries not to ask for sex because of the pain I go through.” (Woman with endometriosis) “I have patients who tell me they’ve been living at their parents’ house for two years and never go home, reporting that they avoid sex altogether due to dyspareunia.” (Gynecologist). “I have patients who tell me they’ve been living at their parents’ house for two years and never go home, reporting that they avoid sex altogether due to dyspareunia.” (Gynecologist). Participants also emphasized the impact of hormonal therapy (such as induced mood swings, vaginal dryness, and irregular bleeding), prolonged recovery periods and persistence of dyspareunia even after surgical lesion removal on their sexual relationships. “When I take hormonal drugs, I feel like I just want to scream, go somewhere, and cry.” (Woman with endometriosis) “When I take hormonal drugs, I feel like I just want to scream, go somewhere, and cry.” (Woman with endometriosis) “Even after lesions are removed, some women still experience pain; attempting intercourse often revives negative memories, even after surgery.” (Psychologist) “Even after lesions are removed, some women still experience pain; attempting intercourse often revives negative memories, even after surgery.” (Psychologist) Participants narrated that the cultural importance of fertility and childbearing in Iranian society, viewing it as one of the main purposes of marriage and sexual relations. Infertility due to endometriosis was associated with feelings of hopelessness, inadequacy, anxiety, stress, and depression, which adversely affected marital and sexual life. Frequent arguments with spouses and blame from partners or relatives further harmed psychological health and marital relationships. “… People have two goals for sex: sexual pleasure and pregnancy. When you can’t conceive, your mind gets stuck on it, like something is missing.” (Woman with endometriosis). “… People have two goals for sex: sexual pleasure and pregnancy. When you can’t conceive, your mind gets stuck on it, like something is missing.” (Woman with endometriosis). “Infertile patients are often extremely anxious; sex becomes focused solely on achieving pregnancy. If conception does not occur, they feel worthless and inadequate.” (Psychiatrist) “Infertile patients are often extremely anxious; sex becomes focused solely on achieving pregnancy. If conception does not occur, they feel worthless and inadequate.” (Psychiatrist) Participants narrated that the diagnosis and treatment of endometriosis and its associated infertility were lengthy and costly, placing a considerable financial burden on couples. In some cases, disease-related complications led to job loss, further exacerbating economic difficulties. Excessive treatment costs, limited insurance coverage, and restricted access to certain surgical procedures in public hospitals were identified as major sources of stress, depression, and marital conflict. “The costs used to be much lower than they are now; the financial strain and the resulting stress have affected our relationship.” (Woman with endometriosis) “The costs used to be much lower than they are now; the financial strain and the resulting stress have affected our relationship.” (Woman with endometriosis) Healthcare providers narrated that the substantial costs of medical and infertility treatments often discouraged couples from seeking treatment for sexual dysfunction. “… Endometriosis is an expensive condition—its treatments, infertility management—so when it comes to sexual health, couples often deprioritize spending on it.” (Midwife) “… Endometriosis is an expensive condition—its treatments, infertility management—so when it comes to sexual health, couples often deprioritize spending on it.” (Midwife) Participants narrated that weakness and fatigue caused by chronic pelvic pain and irregular bleeding significantly impaired their ability to work and perform daily activities. Many also described a lack of enjoyment in life and a sense that their entire life had been disrupted due to the disease, which had profound effects on the quality of their sexual relationships. “… Women without this disease might feel tired during the day but can still have sex at night; for me, if I’m tired during the day because of my condition, I can’t have a good sexual relationship.” (Woman with endometriosis) “… Women without this disease might feel tired during the day but can still have sex at night; for me, if I’m tired during the day because of my condition, I can’t have a good sexual relationship.” (Woman with endometriosis) “Sometimes women come in with their mothers or sisters crying, saying this disease has ruined our lives—on one side the childbearing issue, on the other side the surgeries and costs—and sexual issues just become trivial to them.” (Gynecologist) “Sometimes women come in with their mothers or sisters crying, saying this disease has ruined our lives—on one side the childbearing issue, on the other side the surgeries and costs—and sexual issues just become trivial to them.” (Gynecologist) According to the participants, endometriosis adversely affected their sexual experiences. Many women narrated that engaging in sexual activity primarily for conception rather than pleasure. In addition, several participants narrated that they had sex to prevent their husband’s potential infidelity or merely to satisfy his sexual needs. This main category was divided into two sub-categories: “sexual activity solely for conception” and “sexual activity to preserve marital life”. According to the participants, sexual activity had, in many cases, shifted from being a source of pleasure and emotional intimacy to a planned act aimed primarily at achieving pregnancy, resulting in diminished sexual satisfaction for both partners. “… All my sexual relations have become about having a baby—it’s no longer for pleasure or comfort. Whenever we get close, I’m only thinking about the baby.” (Woman with endometriosis) “… All my sexual relations have become about having a baby—it’s no longer for pleasure or comfort. Whenever we get close, I’m only thinking about the baby.” (Woman with endometriosis) “… For most of these patients, the main concern is reduced ovarian reserve and fertility, not sexual matters.” (Gynecologist) “… For most of these patients, the main concern is reduced ovarian reserve and fertility, not sexual matters.” (Gynecologist) Participants narrated that they often concealed their pain and discomfort, and even endured considerable pain during intercourse to satisfy their husbands, prevent infidelity, and preserve their marital life. “… I thought if we had less sex, my husband would lose interest in me. Even when I was in pain, I kept quiet so he’d come to me and not grow cold, so our family wouldn’t fall apart.” (Woman with endometriosis) “… I thought if we had less sex, my husband would lose interest in me. Even when I was in pain, I kept quiet so he’d come to me and not grow cold, so our family wouldn’t fall apart.” (Woman with endometriosis) “… Often, these women hide their pain and reach a point where they accept both discomfort and lack of sexual satisfaction to ensure their husband’s happiness.” (Gynecologist) “… Often, these women hide their pain and reach a point where they accept both discomfort and lack of sexual satisfaction to ensure their husband’s happiness.” (Gynecologist) The findings of the study indicated that communication problems with their husbands, reduced intimacy, and unmet sexual desires and expectations are among the key challenges faced by women with endometriosis, contributing to their dissatisfaction with marital life. This main category includes three sub-categories: “emotional gap and reduced couple intimacy”, “unmet sexual desires and expectations”, and “ marital communication problems and conflicts ”. Participants narrated that the importance of their husbands’ understanding, empathy, and emotional support as protective factors. However, many reported receiving inadequate emotional and verbal support, which contributed to emotional detachment and reduced intimacy. “When there’s no sexual connection, it leads to coldness, and we become more distant from each other.” (Woman with endometriosis) “When there’s no sexual connection, it leads to coldness, and we become more distant from each other.” (Woman with endometriosis) “… When a man observes his wife’s reluctance to engage in sexual activity, he first withdraws emotionally and then physically.” (Psychologist) “… When a man observes his wife’s reluctance to engage in sexual activity, he first withdraws emotionally and then physically.” (Psychologist) According to participants, insufficient foreplay and lack of sexual intimacy were among the key challenges in their sexual relationships. Feeling pressured into sexual activity despite unwillingness, along with criticism from their husbands for reduced sexual frequency, contributed to feelings of being victimized, diminished self-esteem, and heightened stress. “… I was in pain, and my husband didn’t prepare me or engage in foreplay beforehand.” (Woman with endometriosis) “… I was in pain, and my husband didn’t prepare me or engage in foreplay beforehand.” (Woman with endometriosis) Healthcare providers also narrated that due to cultural taboos and feelings of shame, women often refrain from discussing issues such as dyspareunia or decreased sexual desire with their partners or physicians, leaving these problems unresolved. “Some patients conceal their condition and, because of stigma, don’t even consider consulting a therapist; they feel they must simply cope with the pain and problem as it is.” (Reproductive health specialist) “Some patients conceal their condition and, because of stigma, don’t even consider consulting a therapist; they feel they must simply cope with the pain and problem as it is.” (Reproductive health specialist) Participants narrated that sexual dysfunction and infertility due to endometriosis led to frequent marital disputes and persistent tension. Many participants felt trapped in uncertainty because of recurring arguments and endured these difficulties due to the stigma surrounding divorce and the fear of social judgment. “I never reached orgasm; I was just in pain, and it affected my mood. I became irritable and argumentative, and our life was nothing but constant tension.” (Woman with endometriosis) “I never reached orgasm; I was just in pain, and it affected my mood. I became irritable and argumentative, and our life was nothing but constant tension.” (Woman with endometriosis) Healthcare providers narrated that in families with lower cultural awareness, social and familial pressures related to infertility could exacerbate marital tensions to the point where divorce was perceived as the only solution. “… In families with lower cultural backgrounds, the stress and pressure regarding childbearing can lead to divorce.” (Gynecologist) “… In families with lower cultural backgrounds, the stress and pressure regarding childbearing can lead to divorce.” (Gynecologist) The findings indicated that many husbands of women with endometriosis experienced sexual dysfunction. This main category consisted of two sub-categories: “reduced or absent sexual desire ” and “ erectile and ejaculatory disorders .” According to participants, reduced or absent sexual desire in husbands of women with endometriosis was a major challenge. Observing their partner’s dyspareunia and chronic pelvic pain, mood and psychological changes, disappointment stemming from infertility, feelings of guilt over her inability to reach orgasm, and fears of worsening the disease often led husbands to delay or avoid sexual activity. “… Because of the pain I endure, my husband tries to request sex less often.” (Woman with endometriosis) “… Because of the pain I endure, my husband tries to request sex less often.” (Woman with endometriosis) “When couples’ sexual experiences fail to bring satisfaction, it can even reduce the partner’s sexual desire". (Gynecologist) “When couples’ sexual experiences fail to bring satisfaction, it can even reduce the partner’s sexual desire". (Gynecologist) Situational erectile dysfunction and premature ejaculation in husbands were reported as significant concerns by participants. “As soon as penetration occurs, my husband ejaculates—sometimes even without penetration, just from foreplay. He says he can’t enjoy it the way he wants because I’m in pain.” (Woman with endometriosis) “As soon as penetration occurs, my husband ejaculates—sometimes even without penetration, just from foreplay. He says he can’t enjoy it the way he wants because I’m in pain.” (Woman with endometriosis) Healthcare providers narrated that recurrent dyspareunia in women can lead to anxiety, stress, guilt, and feelings of inadequacy in their husbands, which may subsequently contribute to erectile dysfunction and premature ejaculation. “… When a man repeatedly observes his wife in pain during intercourse, the negative feelings he constantly experiences can eventually result in erectile dysfunction.” (Reproductive health specialist) “… When a man repeatedly observes his wife in pain during intercourse, the negative feelings he constantly experiences can eventually result in erectile dysfunction.” (Reproductive health specialist) The findings indicated that women with endometriosis experience a range of sexual dysfunctions, making sexual encounters unpleasant and adversely affecting their marital relationships.This main category comprised three sub-categories: “reduced or absent sexual desire and orgasm,” “reduced or absent sexual arousal and vaginal dryness,” and “vaginismus and dyspareunia”. Participants described painful intercourse as a major sexual dysfunction they experienced. The pain sometimes began at the onset of penetration and persisted throughout, intensifying in deeper positions such as the missionary position. “I felt pain from the very beginning, but it kept increasing—the deeper the penetration, the more pain I felt.” (Woman with endometriosis) “I felt pain from the very beginning, but it kept increasing—the deeper the penetration, the more pain I felt.” (Woman with endometriosis) Healthcare providers also narrated that dyspareunia is a primary issue for these women, caused by endometriotic lesions and fibrotic tissue following surgery. Deep penetration or prolonged sexual inactivity can exacerbate the pain. They noted that, in many cases, stress and anxiety triggered by the onset of pain lead to involuntary contraction of the pelvic floor and vaginal muscles (vaginismus) and avoidance of sexual activity. Moreover, in most cases, painful intercourse persists due to fear of recurrence, even after surgery and lesion removal. “They have no desire to have sex at all, and even if they feel desire, because of the pain, especially during deep penetration, they are unwilling to continue sexual activity". (Gynecologist) “They have no desire to have sex at all, and even if they feel desire, because of the pain, especially during deep penetration, they are unwilling to continue sexual activity". (Gynecologist) Participants narrated that painful intercourse, chronic pelvic pain, fear of recurring dyspareunia, lack of emotional support from their spouse, and the use of hormonal medications contributed to a reduction in sexual desire. Some believed that infertility and associated social and psychological pressures had caused them to lose interest in sexual activity. They also described experiencing delayed or absent orgasm. “I didn’t have pain before, but ever since the doctor told me I needed IVF, my sexual desire vanished, and every intimate encounter felt solely aimed at conception.” (Woman with endometriosis) “I didn’t have pain before, but ever since the doctor told me I needed IVF, my sexual desire vanished, and every intimate encounter felt solely aimed at conception.” (Woman with endometriosis) “… The pain has reduced my sexual pleasure, and reaching orgasm has become less frequent; sometimes I fail to reach orgasm entirely.” (Woman with endometriosis) “… The pain has reduced my sexual pleasure, and reaching orgasm has become less frequent; sometimes I fail to reach orgasm entirely.” (Woman with endometriosis) “… These patients say that because of the pain and anxiety, their sexual desire has decreased, and since they focus on the pain, orgasm becomes unattainable.” (Reproductive health specialist) “… These patients say that because of the pain and anxiety, their sexual desire has decreased, and since they focus on the pain, orgasm becomes unattainable.” (Reproductive health specialist) Participants narrated that reduced sexual arousal was linked to stress and anxiety, followed by repeated dyspareunia, psychological distress related to infertility, the pressure of scheduled intercourse for conception, and concerns about declining partner interest. Hormonal treatments and prolonged intervals between sexual activity were also identified as contributing factors to vaginal dryness, which in turn exacerbated dyspareunia. “… Lubrication occurs less frequently, and I notice my mind is preoccupied with thoughts about having a child, which diminishes my sexual arousal.” (Woman with endometriosis) “… Lubrication occurs less frequently, and I notice my mind is preoccupied with thoughts about having a child, which diminishes my sexual arousal.” (Woman with endometriosis) “… In patients undergoing medical treatment, the treatment itself can reduce lubrication.” (Midwife) “… In patients undergoing medical treatment, the treatment itself can reduce lubrication.” (Midwife)

Endometriosis is a chronic inflammatory condition with an estimated prevalence of 10–15%. It affects more than 190 million women and adolescent girls worldwide [ 1 , 2 ]. While certain genetic, hormonal, and immunological factors are implicated, the etiology of the disease remains unknown [ 3 ]. Currently, there is no definitive cure for this condition. Therefore, long-term successful management requires personalized therapeutic strategies tailored to women’s needs and preferences [ 4 ]. Endometriosis affects a wide range of activities and life domains, including physical performance, daily living, social interactions, education and work, sexual relationships, intimacy, psychological health, and emotional well-being [ 2 ]. Sexual function, an integral component of health, is defined as the ability to engage in sexual activity to achieve sexual pleasure, which contributes to overall well-being and enhances quality of life [ 5 ]. Studies indicate that endometriosis is associated with a ninefold increased risk of deep dyspareunia, and pelvic pain. Also, infertility is reported in 30–50% of affected women [ 6 , 7 ]. It is estimated that two-thirds of women with endometriosis experience sexual dysfunction due to deep dyspareunia and other physical and psychological factors [ 4 ]. Discomfort during sexual intercourse and problems related to getting pregnant often reduce intimacy and creating a negative cycle that diminishes desire, sexual arousal, orgasmic capacity, and satisfaction in these patients [ 8 ]. Consequently, women with endometriosis have a higher risk of depression and anxiety as well as their quality of life may be adversely affected by pain, the emotional burden of subfertility, the likelihood of disease recurrence, uncertainty about the future and prolonged medical treatments [ 9 ]. The negative effects of this chronic illness on women’s sexual function reduce the ability to achieve a satisfying sexual life, potentially impacting self-esteem, self-worth, and partner relationships [ 5 ]. In this regard, feelings of helplessness, hopelessness, anxiety, and anger have also been identified among male partners of women with endometriosis [ 9 ]. In Iran, one of the key challenges in women’s sexual health is the low level of awareness and inadequate sexual education [ 10 ]. The quality of patient–provider communication regarding sexual issues is often poor, with both patients and physicians frequently reluctant to discuss sexual concerns [ 8 ]. Even women who express their sexual concerns may not receive appropriate guidance or interventions from healthcare providers [ 4 ]. Given the complex nature of endometriosis and its multifaceted impact on women’s health, further investigation into its effects on sexual function is warranted, employing a comprehensive assessment that encompasses biological, psychological, and social determinants [ 5 , 6 ]. Understanding the perceptions and lived experiences of women with endometriosis regarding their sexual function is crucial for designing effective health promotion interventions aimed at improving their sexual health. On the other hand, one of the important concerns of the health system is to improve the quality of patient-provider communication and reduce the gap between the quality of service delivery and the level of perceived needs and expectations of clients. Although this issue is of particular importance in relation to the sexual health of women with endometriosis, no research has been conducted in this field [ 6 ]. Qualitative research is a methodology for scientific inquiry that emphasizes the depth and richness of context and voice in understanding social phenomena. This methodology is constructive or interpretive. Constructivism is an epistemological approach that suggests that individuals actively construct their understanding and knowledge of the world through their experiences, interactions, and interpretations. It proposes that knowledge is not passively received from the outside world, but rather actively built by the mind based on the individual’s experiences and mental processes [ 11 ]. Therefore, the present study aimed to explore experiences related to sexual function among women with endometriosis.

This study aimed to explore experiences related to sexual function among women with endometriosis. The findings revealed that various challenges encountered by participants resulting from the disease frequently caused participants to overlook sexual function issues. Likewise, healthcare providers predominantly focused their efforts on managing the physical symptoms, chronic pain and infertility while giving insufficient priority to sexual health concerns in these women. In this regard, a review by Della Corte et al. demonstrated that endometriosis affects all aspects of patients’ lives and significantly diminishes their quality of life. These patients suffer from dyspareunia, dysmenorrhea, chronic pelvic pain, infertility, economic burdens, depression, and anxiety [ 17 ]. Davenport et al. showed that concerns about sexual health are often overlooked in primary care and not considered a priority for treatment. Fear of misunderstanding or being judged, along with the perception of wasting the physician’s time, were common barriers preventing patients from initiating discussions. Patients also reported that physicians often normalized and minimized the pain, prioritized prescribing analgesics, recommended complete sexual abstinence, and focused on physical symptoms rather than psychosocial needs. Physicians themselves acknowledged that they often avoid addressing sexual health issues in these patients due to reasons such as insufficient knowledge and suboptimal communication skills [ 18 ]. Similarly, findings from Rossi et al. indicated that only 24.1% of women with endometriosis consulted sexual health specialists for sexual function issues. The authors identified barriers such as misunderstandings about the importance of sexual relationships, acceptance of sexual pain as normal, and beliefs that sexual issues cannot be resolved [ 19 ]. These cases highlight the need to understand the management of sexual well-being in primary healthcare settings. Therefore, enhancing sexual quality of life should be incorporated into the therapeutic goals for women with endometriosis. Healthcare providers should proactively address sexual health concerns and equip women with adequate information on this subject. In this regard, it is essential to increase awareness among women with endometriosis and healthcare providers regarding the importance of managing and following up on sexual function, along with integrating sexual health counseling and education into treatment programs. The findings of the present study revealed that, beyond its physical manifestations, endometriosis exerts profound psychological, social, economic, and cultural impacts on the lives of affected women and their spouses. Mood and psychological changes in both partners, the effects of medical and surgical treatments, the psychosocial strain of infertility, financial burdens, and disruption of personal and social life arising from chronic pelvic pain were identified as major factors influencing the sexual quality of life of women and their partners. In this regard, a systematic review by Szypłowska et al. reported depressive symptom prevalence ranging from 9.8% to 98.5% and anxiety symptoms from 11.5% to 87.5% among women with endometriosis. These patients experienced significantly impaired health-related quality of life, with a direct and clinically meaningful correlation between pain severity and the occurrence of psychological disorders such as depression and anxiety, as well as reduced quality of life. Infertility and inability to experience motherhood imposed a substantial emotional burden, undermining psychological well-being. Additionally, decreased work productivity and impairment in daily activities were frequently reported [ 20 ]. A narrative review by Missmer et al. similarly demonstrated the multidimensional consequences of endometriosis. According to their findings, the disease creates barriers to educational attainment, reduces occupational productivity, alters career choice and success, disrupts social life, influences family planning decisions, strains personal relationships, negatively affects psychological and emotional well-being, and overall diminishes quality of life, significantly altering the life trajectory of affected women [ 21 ]. Rossi et al. further documented elevated rates of obsessive–compulsive disorder, depression, anxiety, phobic disorders, and psychosis in these patients [ 19 ]. Della Corte et al. identified dysmenorrhea, chronic pelvic pain, dyspareunia, psychological problems (such as depression), work absenteeism, the economic burden of healthcare, and reduced work efficiency as major determinants of compromised occupational, recreational, and social activities, as well as sexual function, intimate relationships, and marital life [ 17 ]. These results are similar to other studies indicating that sexual health professionals should address psychological, emotional, and cognitive factors since they seem involved in patients' sexual experiences. Endometriosis negatively affects partners' psychological health and quality of life, with individual variation. Partners may feel isolated and less involved in treatment decisions. The financial burden of the disease can further impair their occupational performance and daily life [ 4 ]. In a systematic review, NoriNho et al. found that partners of women with endometriosis may experience emotions such as helplessness, hopelessness, worry, and anger [ 9 ]. Furthermore, the findings of Helfenstein et al. indicated an association between couples’ fertility-related concerns and reduced sexual satisfaction, along with an increased prevalence of sexual dysfunction among these couples [ 22 ]. These results are similar to other studies indicating to improve sexual counseling, more information is needed on how both partners experience sexuality in the context of endometriosis. According to the findings of the present study, endometriosis exerts a substantial negative impact on sexual experiences, such that in affected women, sexual intercourse often occurs primarily to conceive rather than for pleasure. This is particularly evident within the Iranian cultural context, where childbearing is accorded exceptional significance. Furthermore, women, driven by fear of spousal infidelity, rejection, or the collapse of their marriage, often endure pain to preserve the marital relationship, thereby bearing a considerable emotional and psychological burden within their intimate lives. In the study by Fritzer et al., the primary motivation for sexual intercourse among 38 out of 125 women with endometriosis was to achieve pregnancy, while in nearly half of the participants (46%), it was to satisfy their partner. Despite experiencing dyspareunia, women continued to engage in sexual activity to be perceived as the “ideal wife”. Additionally, feelings of guilt, self-sacrifice, and resignation were identified as potential motivators sustaining this behavior [ 23 ]. Similarly, De Graaff et al. found that more than half of the participants expressed concern about losing their partner due to sexual difficulties arising from the disease, highlighting the significant psychological burden associated with endometriosis [ 24 ]. These results are similar to other studies indicating that addressing sexual communication could be a starting point in counseling couples dealing with endometriosis. Given that engaging in sexual intercourse without the goal of sexual pleasure can exert profoundly negative effects on couples’ relationships, resulting in a substantial decline in both emotional and sexual intimacy, targeted counseling and educational interventions are needed to raise awareness among couples and correct misconceptions. The findings of the present study indicated that women with endometriosis often experience unmet needs and expectations. This leads to negative effects on their physical, sexual, and psychological health, as well as their couple relationships. Hadad et al. reported higher levels of marital conflict and thoughts of separation or divorce among these patients, predominantly associated with sexual dissatisfaction. Chronic pelvic pain, dyspareunia, sexual dissatisfaction, fatigue, and infertility were all significantly correlated with increased marital conflict [ 25 ]. Similarly, De Graaff et al. found women with endometriosis experienced more severe pain, higher anxiety and depression, lower sexual functioning, and reduced quality of life. Dyspareunia and a decrease in sexual intercourse frequency caused interpersonal tension and reduced sexual satisfaction and intimacy between partners [ 24 – 26 ]. The systematic review by Namazi et al. further demonstrated that endometriosis-related dyspareunia severely impairs sexual function, psychological health, and couple relationships. Some patients avoid sexual activity entirely due to dyspareunia, becoming completely sexually inactive, which in turn increases tension and verbal conflict with their partners [ 27 ]. Considering that sexual satisfaction is a key determinant of individual quality of life and marital relationships, neglecting sexual intimacy can foster feelings of deprivation, frustration, insecurity, unhappiness, and ultimately the breakdown of family foundations [ 28 ]. These results are similar to other studies indicating given the connection between symptoms of endometriosis and a decrease in partnership quality, it is essential to incorporate strategies that alleviate the negative impacts on relationships for both partners into medical support. Therefore, specialized sexual counseling and education for women with endometriosis and couple therapy alongside medical interventions can be an effective strategy to enhance marital relationships and strengthen family bonds. Based on the findings of the present study, endometriosis disrupts the sexual functioning of partners of women with endometriosis. Participants reported that their partners often showed reduced sexual desire or postponed sexual activity, which they attributed to the women’s mood changes, chronic pelvic pain, fear of disease exacerbation and increased pain. According to participants, many men experienced situational erectile dysfunction or premature ejaculation. Healthcare providers noted that witnessing frequent dyspareunia in women, coupled with fear of causing harm, often led to increased stress and feelings of guilt in male partners, which over time could contribute to erectile dysfunction. Similarly, Helfenstein et al. reported that sexual partners of women with endometriosis had lower sexual satisfaction, indicating that sexual activity with a partner who appears fatigued or in pain may reduce sexual pleasure for men [ 22 ]. Santulli et al. also found that partners often avoided sexual activity due to fear of causing pain to the women or reduced sexual desire on both sides. Most partners (92%) reported negative emotions regarding endometriosis, including anger, anxiety, frustration, and helplessness [ 29 ]. In this regard, the study by De Graaf et al. reported no significant change in the sexual function of partners as measured by the international index of erectile function (IIEF) [ 24 ]. In this regard, our qualitative findings diverge from the quantitative IIEF scores. It seems that IIEF measures general sexual function, while qualitative interviews capture specific situational dysfunction linked to the partner's pain. Also, cultural disclosure barriers, or the Iranian cultural perception of masculinity/sexual role could play a role. However, Ameratunga et al. indicated that partners of women with endometriosis often reported negative emotional responses to the disease diagnosis (92%) and noted a substantial impact on their sexual life (74%) [ 30 ]. Hämmerli et al. observed that, despite unchanged sexual desire, partners reported a significant reduction in the frequency of sexual activity and other sexual behaviors, with 75% reporting a negative effect of the disease on their sexual experience [ 31 ]. Similar to other studies, these results showed that challenges such as a reduced frequency of sexual activities should be addressed by healthcare providers to ameliorate any current difficulties and to prevent the development or aggravation of sexual dysfunction. Therefore, sexual counseling involving both partners should be considered in the therapeutic interventions for women with endometriosis. Furthermore, due to the significant role of psychological factors in sexual dysfunction, providing psychological counseling aimed at improving couples’ sexual quality of life will have a substantial impact. The present study demonstrated that endometriosis has significant negative effects on women’s sexual function. Participants reported decreased or absent sexual desire and orgasm, reduced sexual arousal, vaginal dryness, vaginismus, and dyspareunia. According to previous studies, the cycle of persistent sexual dysfunction in women with endometriosis typically begins with recurrent dyspareunia. Fear and anticipation of pain are considered major contributing factors to reduced sexual desire and vaginal lubrication in these patients. The apprehension of experiencing pain often persists even after surgical excision of endometriotic lesions [ 9 ]. A meta-analysis by Shi et al. reported a significant reduction in the overall female sexual function index (FSFI) score and across all domains, including desire, arousal, orgasm, satisfaction, and pain, in patients with endometriosis [ 32 ]. In the study by Hämmerli et al. a reduction in orgasm due to dyspareunia during intercourse was observed among women with endometriosis ( P  = 0.020). These patients showed that the ability to achieve orgasm through non-coital sexual activities was associated with higher levels of sexual satisfaction ( P  = 0.006) [ 33 ]. Therefore, modifying sexual techniques and exploring alternative sexual positions may serve as practical strategies to improve sexual quality in these women. The systematic review by Gozdziewicz et al. reported that dyspareunia is the most common symptom associated with sexual function in women with endometriosis, which often leads to avoidance of sexual contact and exerts a negative impact on their partners as well [ 34 ]. Similar to other studies, these results showed that women with endometriosis report significantly more sexual dysfunction compared to healthy women. This issue deserves special attention in the case of endometriosis, in the decision-making process for treatment. Therefore, supporting women with endometriosis necessitates a multidisciplinary approach that integrates medical, psychological, and couple-based interventions. In addition, specialized sexual counseling and education tailored to these patients are essential to improve emotional intimacy and marital relationships.

Based on the findings of the present study, endometriosis has a profound impact on multiple dimensions of sexual function in affected women and their partners. Therefore, the management of this condition should not be limited solely to medical treatments but rather should adopt a comprehensive and multi-dimentional approach that incorporates psychological support, sexual counseling and education. Such strategies may contribute to enhancing the quality of marital relationships and improving both individual and interpersonal sexual satisfaction.

Considering that this study sought to explore experiences related to sexual dysfunction in women with endometriosis, the selection of participants was limited to women with pure endometriosis. Therefore, one of the important limitations of this study is the limited range of participants in terms of demographic characteristics and generalizability of the study results. Given the cultural taboos surrounding sexual issues in the country, feelings of shame and embarrassment in discussing sexual function among women with endometriosis represented the another limitation of the present study. To address this, efforts were made to ensure confidentiality, create a safe and calm environment, and establish effective communication to build participants’ trust. However, the depth of participants' responses may still have been compromised by these cultural factors. It is expected that the findings of this study will serve as a foundation for future research in this field and contribute to identifying new research areas. In this regard, it is recommended that future studies employing qualitative methodologies explore the sexual experiences of the partners of women with endometriosis to gain a deeper understanding of the challenges faced by these partners and to provide more effective support for such couples. Furthermore, research is needed to evaluate the effectiveness of educational and counseling interventions, such as sexual counseling and couple therapy, which may help improve marital relationships among these patients.