Sexual dysfunction, distress, and care-seeking among females during the preconception period.

Our findings suggest that sexual dysfunction, distress, and painful intercourse are prevalent in the preconception period in a population of female-identified pregnancy planners with a range of pregnancy attempt times. Dysfunction and distress increased with longer pregnancy attempt time. However, most participants did not discuss their sex lives with their healthcare provider when discussing plans to conceive. Their provider not asking about it was one of the most reported reasons for not discussing their sex lives. The prevalence of FSD in our study is lower than other population-based studies, which frequently report a prevalence upwards of 40%. 8 , 16 This difference may result from the use of different scales to measure FSD, the fact that our cohort is premenopausal (i.e., menopause is associated with vulvovaginal atrophy and sexual dysfunction), 22 or the fact that our sample has relatively higher socioeconomic status, which is associated with a lower risk of FSD. 23 Nonetheless, over 30% of our cohort reported at least some pain with intercourse in the past 4 weeks and 8% met the threshold for both FSD and distress, which would be the most conservative estimate of the prevalence of clinically significant FSD. We also found that the prevalence of FSD and sexual distress increased with pregnancy attempt time. This finding is aligned with prior research that has demonstrated that women with infertility have a higher prevalence of FSD, 11 , 24 yet our findings suggest that sexual dysfunction can occur before the clinical threshold for infertility (i.e. 12 months). Like previous research, 25 - 27 we also found that FSD was more common among participants with other comorbidities, including depression, anxiety, chronic pain/fatigue, and pelvic comorbidities. Taken together, these findings suggest that sexual function should be considered when individuals with these conditions attempt pregnancy, and, further, that continued discussions of sexual function should occur for those who experience prolonged pregnancy attempts or infertility. Our findings align with other studies reporting that women do not discuss their sexual health concerns, even longstanding ones, with their healthcare providers. 17 , 28 - 32 Barriers to discussing sexual health with providers include a lack of confidence in a medical solution, fear of stigma, a feeling that sexual issues were not a medical problem, and embarrassment. 17 , 30 In a study of pregnant women, almost half reported concerns about sexual activity in pregnancy, but 71% did not discuss these concerns with a doctor, despite feeling that they should be discussed. 18 We additionally found that the majority of participants who reported painful intercourse did not report concurrent distress. This could suggest a normalization of sexual pain which may contribute to participants not discussing their sexual health with providers. Our results replicate other findings that feelings of embarrassment or shame are important barriers to healthcare seeking for sexual health issues, 17 , 18 , 30 but suggest a potential role of providers not asking about sexual health. Indeed, among PRESTO participants who reported discussing their sex life, the majority brought the topic up themselves. Our findings also suggest that prior negative experiences with unsupportive providers can influence a patient’s desire to discuss health issues; providers should be cognizant of their role in providing an encouraging and supportive space for patients. We conducted this analysis within a large geographically diverse cohort and used clinically validated measures for FSD and sexual distress. Nonetheless, our study has important limitations. Despite the validation of the FSFI-6 against diagnosed FSD, 20 it does not include a marker of distress, which is required for a clinical diagnosis. 1 Indeed, when we combined the FSD and the FSDS, the prevalence of FSD and distress was lower than FSD alone. Thus, the combined measure is likely more clinically relevant, though it has not been validated. Further, we lacked information on the duration of sexual function issues and details about the nature of reported pain with intercourse. Cohort members identified primarily as non-Hispanic White, had relatively high levels of education and income, and were pregnancy planners. Moreover, participants who identified as Hispanic were less likely to complete the SHQ than participants who identified as other racial and ethnic groups. 33 Thus, generalizability to other populations, particularly Hispanic populations, may be limited. We also did not obtain details about preconception discussions with providers, so there is likely heterogeneity in the types of visits during which participants discussed their conception plans, which may have influenced participants’ interest or ability to discuss their sex lives. Despite the relatively high response rate, it is possible that participants who completed the SHQ were more likely to have sexual function issues. We have previously demonstrated that SHQ completion does not appear to be related to many clinical factors associated with sexual function, 33 but we cannot comment on the sexual function of non-respondents to the SHQ.

We used data from Pregnancy Study Online (PRESTO), an ongoing web-based prospective cohort study (detailed methodology described elsewhere 19 ). PRESTO enrolls self-identified female participants planning pregnancy who are aged 21-45 years, residents of the United States (US) and Canada, not using fertility treatments or contraception, and in a relationship with a male partner aged ≥21 years. There is no restriction on pregnancy attempt time at enrollment. Recruitment occurs via online advertising, posted flyers, and word of mouth. Participants complete online questionnaires at enrollment and every 8 weeks until the report of a pregnancy or 12 months, whichever comes first. Participants who report a pregnancy are followed up with additional surveys. An optional supplemental survey about sexual health was added to the study protocol in March 2021. This survey, referred to hereafter as the sexual health questionnaire (SHQ), asks about participants’ sexual health, feelings about their sex life, and related medical conditions. At launch, we invited all PRESTO participants with an active email address on file (N=14,788) to complete the SHQ. Participants who enrolled in PRESTO after SHQ launch (N=2,143) received an email inviting them to complete the SHQ 30 days after enrollment, though they could complete it at any time. As of October 2022, 3,624 participants had completed the SHQ with a completion rate of 59.2% for those invited prospectively. The SHQ was completed at a single time point. To reduce the risk of sexual function being influenced by unobserved pregnancy or fertility treatment initiation occurring after 12 months of follow up, we excluded participants who completed the SHQ >1 year after the completion of their baseline questionnaire. We additionally excluded participants who reported pregnancy or the initiation of fertility treatment prior to completion of the SHQ (see Figure 1 for details). The final sample size was 1,120 participants who enrolled in PRESTO between August 2020 and October 2022. The median time between enrollment and completion of the SHQ was 30 days, (range: 0-353). The study protocol was approved by the Boston University Medical Campus Institutional Review Board and participants provided informed consent online. Participants answered the 6-item Female Sexual Function Index (FSFI-6) scale, a clinically validated abridged version of the full 19-question Female Sexual Function Index, an instrument designed to identify FSD by asking about sexual experiences in the past 4 weeks. 20 Responses were collected via Likert scale ranging from 1 (lowest function) to 5 (highest function) and summed. The cutoff for sexual dysfunction was a score ≤19, which in a validation study estimated a sensitivity of 0.93 and specificity of 0.94 against clinically-validated FSD. 20 To increase the sensitivity of the measure for clinically significant FSD not due to a transient issue, we asked participants if they had experienced an infection that caused vaginal pain in the previous 4 weeks. We reclassified those who reported an infection and had sexual dysfunction as not having sexual dysfunction (N=14, 1.3%). We assessed sexual distress using the Female Sexual Distress Scale (FSDS), 21 which included 12 questions assessing participants’ feelings about their sex lives in the past 4 weeks. Participants responded using a Likert scale that ranged from “never” (assigned a value of 0) to “always” (value of 4). We summed responses and used a score ≥20 as the cutoff for clinically relevant sexual distress, which in a pilot validation study yielded a sensitivity of 0.84 and specificity of 1.00 against clinically-validated sexual dysfunction. 21 We additionally created a variable that combined sexual dysfunction and sexual distress, in which we categorized participants as having both dysfunction and distress, only dysfunction, only distress, or neither. To study the prevalence of pain with intercourse, we used a single question from the FSFI-6: “Over the past 4 weeks, how often did you experience discomfort or pain during vaginal penetration (intercourse)?” Response options included “Did not attempt vaginal penetration,” “Almost never or never,” “A few times,” “Sometimes,” “Most times,” or “Almost always or always.” We excluded participants who did not attempt vaginal penetration from pain analyses (N=26). We categorized those who reported that they experienced pain “A few times” or more frequently as having pain with intercourse. As described above, we reclassified participants who reported the presence of a vaginal infection that caused pain as not having pain with intercourse (N=30, 2.8%). We additionally calculated the percentage of participants reporting any pain who also reported distress. The SHQ asked participants if they currently had chronic health conditions potentially related to sexual functioning, including: “vulvodynia (chronic pain of the vulva/vagina lasting 3 months or longer with no known cause),” “vaginismus (involuntary tightness of the vagina that occurs during penetration and can interfere with intercourse),” “chronic pain condition, such as fibromyalgia (chronic muscle pain) or chronic back pain,” “chronic fatigue syndrome (prolonged fatigue that interferes with your ability to carry out ordinary daily activities),” or “interstitial cystitis (also called irritable bladder syndrome).” Participants could respond “Yes, diagnosed by a healthcare provider” (diagnosed), “I think so, but not diagnosed by a healthcare provider” (suspected), and “No.” We considered any affirmative answer (i.e., diagnosed or suspected) a positive response. As a sensitivity analysis, we considered only a diagnosis as a positive response. Participants also reported on the baseline questionnaire if they had ever been diagnosed with endometriosis, polycystic ovarian syndrome (PCOS), or uterine fibroids. We combined these conditions into two composite variables: chronic pelvic conditions (vulvodynia, vaginismus, interstitial cystitis, fibroids, endometriosis, and PCOS), and chronic fatigue/pain conditions (chronic fatigue syndrome and chronic pain). The two participants who reported “lichen sclerosis” in an open-ended text box at the end of the SHQ were included in the chronic pelvic condition group. Participants responded to the question “Did you ever discuss your plans to conceive with a healthcare provider, either as a part of a specific preconception counseling visit or during a visit for another reason?” Those who responded “Yes, at one visit” or “Yes, at multiple visits” were classified as having had a preconception discussion. Those who reported a preconception discussion were asked what type of provider they saw for the visit (they could select multiple provider types) and whether they discussed their sex life “including any issues with pain, arousal, desire, etc.” Those who said “yes” to discussing their sex life were asked whether they or their provider initiated the conversation, while those who said “no” were asked why not (they could select multiple reasons and/or provide an open-ended text response). We calculated baseline characteristics, including the prevalence of chronic pelvic conditions and chronic pain/fatigue conditions as defined above, for the whole cohort and stratified by sexual dysfunction, sexual distress, and pain with intercourse. We assessed the prevalence of sexual dysfunction, sexual distress, the combined variable, and pain with intercourse for the whole sample and stratified by months of pregnancy attempts at the time of SHQ completion (≤3, 4-6, 7-9, 10-12, and >12 months). We descriptively evaluated the prevalence of preconception discussions with a healthcare provider, how often participants reported discussing their sex lives during these discussions, and whether participants or their providers raised the topic for the whole sample and stratified by provider type. For those who did not discuss their sex lives, we reported the frequency of categorized reasons and reviewed open-ended text responses for commonalities, though limited data (i.e., short responses lacking context) precluded formal qualitative analysis.

Baseline characteristics for the sample (N=1,120) are displayed in Table 1 . Most of the sample was aged 25-34 years, married, and nulliparous. Over 80% of participants had at least a college degree and over half of the participants reported an annual household income of at least US$100,000. Over 80% of the sample identified as non-Hispanic White. At study entry, participants reported a mean of 5.2 and median of 2.0 months of pregnancy attempts (range: 0-82.0), with the majority (73%) reporting <6 months ( Figure S1 ). Twenty-five percent (n=280) of the sample met criteria for FSD while 12.2% (n=135) met criteria for sexual distress. When we examined sexual dysfunction and distress together, 8.5% (n=93) reported experiencing both sexual dysfunction and distress, 16.7% (n=184) reported experiencing dysfunction only, 3.7% (n=41) reported experiencing distress only, and 71.1% (n=783) reported neither dysfunction nor distress. Thirty percent of the sample (n=334) reported that they had experienced discomfort or pain during vaginal penetration at least a few times in the past 4 weeks, but of these only 20.0% (n=67) reported distress. In stratified analyses of baseline characteristics by sexual function variables, those with FSD and sexual distress were more likely to have lower income and education levels. Those with a history of infertility, depression, anxiety, and post-traumatic stress disorder were more likely to report sexual health issues than those with no such history. Twenty-two percent of the sample (n=242) reported a chronic pelvic condition while 11.8% (n=130) reported chronic fatigue and/or pain. Sexual health issues were more common among those who reported chronic pelvic conditions and chronic fatigue and/or pain. Among only diagnosed participants, the prevalence of both conditions was lower, but the risk of sexual health issues was similarly higher among those who reported the conditions compared to those who did not ( Supplementary Table 1 ). When we stratified by pregnancy attempt time, we observed that the prevalence of sexual dysfunction, sexual distress, and the combined measure of sexual dysfunction and distress all increased with increasing months of pregnancy attempt ( Table 2 ). The prevalence of any pain with intercourse remained relatively constant. Most participants (917, 83.2%) reported discussing their plans to conceive with a healthcare provider (47.1% at a single visit and 36.1% over multiple visits). Of these, 637 (69.5%) reported not discussing their sex life with their provider. Among the 280 (30.5%) who did, 146 (52.1%) reported raising the topic themselves while 109 (38.9%) reported that their healthcare provider raised the topic (8.9% did not remember). Discussion of participant sex lives varied by provider type ( Figure 2 ). Sixty percent of participants who discussed their plans to conceive with a midwife, regardless of other providers seen, reported that their provider raised the topic of their sex lives, compared with 43% of participants who had discussed with an OB/GYN and 38% of participants who had discussed with a PCP. The number of participants reporting each reason for not discussing their sex life is displayed in Figure 3 . Independent of any other reasons, over half of those who did not discuss their sex lives with their provider said that their provider did not ask (n=336). Almost 60% of participants (N=370) reported that they did not discuss their sex lives with their provider because they had no sexual health issue. The next most frequent reasons were that the participant did not feel it was relevant to becoming pregnant and the participant felt uncomfortable. Nineteen participants provided responses in the open-ended text boxes for reasons they did not discuss their sex lives with their provider. As noted previously, due to limited data, we did not conduct a formal qualitative analysis. However, we observed a few commonalities across these responses: 1) painful sex is normal, 2) issues were discussed at a different visit, and 3) prior negative experience with provider. One participant that considered pain during sex to be normal said, “I thought it was normal to have pain during sex and was just due to the position or angle, turns out I actually have uterine fibroids! (didn't know that at the time of the first visit).” Such comments suggest a need for providers to inquire about painful intercourse as it may indicate underlying health issues. Other participants mentioned discussing these issues at a different visit. One participant stated, “My regular PCP was out on maternity leave so I saw a different provider who I don't know, she didn't ask and I didn't like her so I didn't want to talk about it with her but I have discussed it with my regular PCP.” This comment demonstrates an opportunity for providers to inquire about sexual health as patients may not be inclined to initiate the conversation and highlights the importance of patient-provider relationships. Some participants mentioned having had negative experiences with providers in the past as a reason for not discussing their sexual health with their provider. One participant wrote, “[My] previous Ob/Gyn made me feel uncomfortable/laughed at me in the past,” again, highlighting the importance of patient-provider communication and relationships.

Our findings suggest that sexual dysfunction, distress, and pain prevalent in the preconception period, but patients often do not raise their concerns with their healthcare providers when discussing conception plans. Sexual dysfunction, distress, and pain are associated with reduced quality of life and mental health and may make attempting conception an unpleasant experience. Healthcare providers should consider integrating a discussion of sexual health into routine preconception counseling.

Female sexual dysfunction (FSD) describes a heterogeneous group of conditions characterized by clinically significant impairment in the ability to partake in or enjoy sexual activity, accompanied by personal distress. 1 FSD has many manifestations, including low sexual arousal/desire, trouble orgasming, or pain. 1 Sexual satisfaction and well-being are associated with higher quality of life 2 - 4 and, conversely, sexual dysfunction is bidirectionally related to mental health, 5 relationship satisfaction, 6 and overall life satisfaction. 7 Research suggests that FSD is common. A national probability sample of United States women aged 18-59 reported a prevalence of 43% 8 while a meta-analysis of 95 observational studies reported a prevalence of 40.9% for premenopausal women. 9 Research has investigated the relationship between reproductive milestones and FSD, including pregnancy, 10 infertility, 11 and menopause. 12 - 14 However, the prevalence of FSD in the preconception period remains largely uncharacterized, despite the importance of sexual intercourse for mixed-sex couples attempting conception without fertility treatment. Given the high prevalence of FSD in population-wide studies and that both patients and healthcare providers report barriers to discussing sexual function, 15 - 18 it is plausible that FSD may be a common but largely unaddressed problem among pregnancy planners. We evaluated the prevalence of FSD and sexual distress in a population of female pregnancy planners. We additionally assessed whether participants discussed sexual health concerns with a healthcare provider and, if not, what were barriers to this conversation.