Genitourinary syndrome of menopause among breast cancer survivors: an untold story

Introduction

Genitourinary syndrome of menopause (GSM) is a progressive, chronic condition affecting the vulvovaginal, sexual and lower urinary tracts and is characterised by a wide range of signs and symptoms.1 The condition was formerly referred to as vulvovaginal atrophy, atrophic vaginitis or urogenital atrophy.2 Most GSM symptoms are associated with oestrogen deficiency, a hallmark of menopause, which may occur naturally or as a result of iatrogenic factors such as radiation, surgery or chemotherapy.3 The typical clinical manifestations of vulvovaginal symptoms include vaginal atrophy, burning sensation and itching. Urinary urgency, increased frequency of urination, urinary incontinence, dysuria and nocturia are symptoms of lower urinary tract involvement. Another symptom of GSM that women may experience is sexual dysfunction, which reflects a common pathophysiological pattern linked to reduced production of sex hormones, particularly oestrogen.4

The hypoestrogenic state, often resulting from secondary amenorrhea or premature ovarian failure induced by chemotherapy, radiation or antioestrogen therapy, increases the susceptibility of women with breast cancer to GSM.5 This condition may result in iatrogenic and often early menopause or exacerbate pre-existing hypoestrogenic conditions.6 Approximately half of healthy postmenopausal women are affected by GSM, while breast cancer survivors (BCSs) may experience a higher prevalence of up to 70%.7 As the adverse effects of adjuvant therapy for breast cancer have garnered more attention, studies have shown that GSM symptoms can have both short-term and long-term impacts on the quality of life of BCSs. Despite the contraindications of systemic oestrogen therapy for BCSs, a range of treatment options for GSM exists. These include well-established non-hormonal approaches such as vaginal moisturisers and lubricants; the selective use of local hormonal therapy under oncologic guidance; and emerging experimental modalities such as energy-based devices, which remain investigational and are not routinely recommended.8 9 Nevertheless, deficiencies in early detection during routine clinical care continue to impede the provision of adequate management for BCSs.10

Reducing the incidence of GSM in women with breast cancer is key to improving their quality of life. However, healthcare providers often do not proactively inquire about GSM symptoms.11 Furthermore, some patients may lack the confidence to discuss such symptoms, contributing to under-reporting.12 In the USA, the prevalence of self-reported GSM among BCSs ranges from 33% to 40%.10 13 Even though breast cancer has one of the highest prevalence rates among Asian women, it is surprisingly under-reported in the Asian population. In many Asian countries, including Thailand, sociocultural norms of modesty and privacy often discourage open discussions about sexual and genitourinary health.14 15 Topics related to vaginal dryness, irritation or sexual discomfort may be viewed as taboo, particularly among women and cancer survivors. These cultural expectations may lead to hesitation in reporting symptoms and pose challenges for clinicians aiming to provide comprehensive survivorship care. Despite the high prevalence of GSM among BCSs, little is known about how cultural factors influence patients’ willingness to disclose symptoms during routine clinical encounters. Healthy postmenopausal Thai women have a high prevalence of GSM, ranging from 50% to 70%.16 Additionally, a report highlighted the issue of non-reporting among healthy postmenopausal women in Thailand.17 The prevalence and severity of GSM vary by ethnic group. However, no study to date has explored the attitudes of Asian BCSs toward disclosing GSM symptoms. Therefore, this study aimed to explore GSM symptoms among Thai BCSs and assess their attitudes toward GSM disclosure. These findings may guide healthcare providers in delivering more culturally sensitive and effective GSM management.

Methods

Results

A total of 173 BCSs were included in the study. The mean age of the participants was 49.0±9.2 years, and the mean BMI was 25.3±3.5 kg/m². Most participants were married (71.1%), while 18.5% were single and 10.4% were divorced or separated. With respect to education level, 72.8% had attained a bachelor’s degree or higher, 13.3% had completed secondary education and 13.9% had a primary school education or lower. Regarding clinical characteristics, the majority of participants were diagnosed with metastatic breast cancer (61.9%), followed by locally advanced disease (28.9%) and localised disease (9.3%). Total mastectomy was the most commonly performed surgical procedure (57.2%), and 97.1% of participants had received chemotherapy. In addition, 57.2% had received antioestrogen therapy, and 53.8% had undergone radiation therapy. As for menopausal status, 60.7% of participants experienced early menopause due to treatment; whereas, 39.3% experienced natural menopause (table 1).

Overall, 45.7% (79/173) of BCSs reported experiencing at least one GSM symptom. The most frequently reported symptoms were nocturia (45.7%) and vaginal dryness (45.1%). Additionally, 20% of participants reported sexual activity disturbances (table 2). The impact of GSM on participants’ lives varied: 34.1% reported decreased self-esteem, 29.6% reported reduced social confidence, 26.0% felt older and 23.7% experienced interference with daily activities (figure 1). Among those with GSM symptoms, 61.8% had never disclosed their condition to others. Bivariate analysis revealed a statistically significant association between education level and the likelihood of disclosing GSM symptoms (table 3). Disclosure was highest among participants with a bachelor’s degree or higher (76.7%), followed by those with secondary education (42.9%), and was lowest among those with primary education or less (10.0%) (p=0.01). Binary logistic regression using education level as a binary variable (bachelor’s degree or higher vs lower) showed that participants with a bachelor’s degree or higher were significantly more likely to disclose GSM symptoms (OR=4.38; 95% CI: 1.58–12.12; p=0.004).

The reasons for the non-disclosure of symptoms included embarrassment (64.5%), the perception of GSM as a natural ageing process (27.1%) and viewing it as a private matter (14.0%). A significant proportion of participants (97.7%) felt that healthcare providers should initiate discussions on GSM. A minority (38.2%) of BCSs with GSM disclosed their symptoms, typically to their spouse/partner first or to an obstetrician and gynaecologist (figure 2). However, 61.9% of participants did not report their symptoms to any healthcare provider or individual.

Regarding treatment attitudes, 65.3% were not concerned about using local vaginal oestrogen therapy if their symptoms worsened; whereas, 33.0% expressed concern and desired medical consultation before starting treatment.

Discussion

In this study, we aimed to investigate the proportion of BCSs who reported GSM symptoms and to explore their attitudes toward symptom disclosure. First, the symptoms and impact of GSM on BCSs were comprehensively described. These findings align with prior research indicating that GSM is a significant concern among BCSs.19 20 Multiple studies have reported that GSM affects quality of life in this population21 and have discussed strategies and challenges related to symptom management.22 23 However, understanding of GSM symptoms and their effects, as well as attitudes toward them, remains limited. Nocturia and vulvovaginal dryness were the most frequently reported symptoms among participants. Consistent with these findings, previous studies in the USA and France have reported vaginal dryness as the most commonly experienced symptom among BCSs.10 11 Vulvovaginal irritation is also prevalent among healthy postmenopausal women, with vaginal dryness being the most frequently reported symptom in this group.1 Chemotherapy and aromatase inhibitors, both antioestrogenic adjuvant therapies, are biological insults contributing to atrophic changes in the urogenital tissues of BCSs. Psychosocial factors may also influence the presence and severity of urogenital symptoms.24 Prior research has identified urinary frequency as the most prevalent lower urinary tract symptoms (LUTS) in BCSs.10 However, this was a retrospective study and may not have captured all relevant data or addressed the full spectrum of LUTS, particularly nocturia, which is often under-reported in medical records. Nocturia is commonly observed in postmenopausal women with LUTS and GSM, frequently associated with atrophic urethritis and evening fluid intake.25 Considering these results, physicians should advise and reassure BCSs not to consume more than 1.5–2 L of fluids daily and to refrain from consuming excessive amounts of fluids at least 2–4 hours prior to bedtime to alleviate the symptoms of nocturia. Nevertheless, in cases where nocturia is reported, clinical evaluation including history taking, physical examination, bladder diary and screening for underlying conditions is warranted, particularly in older adults or those with metabolic risk factors. In this study, two-thirds of BCSs reported GSM symptoms but did not disclose them to healthcare providers. Only 38% disclosed these symptoms, a proportion notably lower than the 60% disclosure rate reported among healthy postmenopausal women in a Thai population study.17 This lower rate of disclosure among BCSs may be partly explained by cultural factors.26 In Thai and other Asian societies, discussion of sexuality and genital symptoms is often regarded as inappropriate or shameful, particularly among younger women with treatment-induced hypoestrogenism.17 27 This cultural stigma creates internal and interpersonal barriers to open communication, even in clinical settings.28 Prior qualitative studies from Asia have reported that women may experience embarrassment, shyness or fear of judgement when discussing sexual or genitourinary concerns.29 In this study, BCSs with a bachelor’s degree or higher were significantly more likely to disclose GSM symptoms than those with lower educational attainment. This may reflect greater health literacy, stronger communication skills and increased awareness of treatment options. Previous research has similarly identified education as a determinant of health-seeking behaviour and symptom reporting in culturally sensitive contexts.30 These findings underscore the need for tailored communication strategies to empower women with lower educational backgrounds to discuss GSM symptoms more openly in clinical settings. Additionally, the strong respect for the medical hierarchy commonly observed in these cultures may further discourage patients from initiating sensitive topics, particularly when healthcare providers do not proactively create a safe and open environment.31 These cultural dynamics likely contribute to the under-reporting of GSM symptoms and should be considered when designing culturally responsive survivorship care strategies.32 Future interventions should include provider training in sensitive communication, integration of culturally adapted screening tools, and routine, non-judgmental inquiry into GSM symptoms, particularly among populations in which disclosure is affected by cultural or religious norms. It is worth noting that BMI, as an indirect measure of fat stores, may influence the degree of GSM manifestation through peripheral aromatisation, the conversion of androgens to oestrogens in adipose tissue. This endogenous oestrogen production could modulate symptom severity, particularly in postmenopausal women. Although our study did not find a significant association between BMI and symptom disclosure or severity, further research is warranted to explore this relationship.

This study found that the first person informed by BCSs about their GSM symptoms was typically their spouse or a family member, consistent with previous reports indicating that family support and interaction play a key role in improving quality of life during and after cancer treatment, particularly when GSM is among the most prevalent sequelae of therapy. Embarrassment was the primary reason cited for non-disclosure of symptoms, in contrast to healthy postmenopausal women, who often perceive GSM as a natural consequence of ageing.17 These findings suggest that the perception of GSM among BCSs differs from that of the general postmenopausal population. One possible explanation is that most participants in this study experienced premature menopause due to cancer therapy.

The main negative impacts of GSM on quality of life were reported as decreased self-esteem and social confidence, which led participants to feel older. This aligns with previous findings suggesting that the reduction in quality of life among BCSs with GSM symptoms may be attributed to a decrease in awareness of social engagement, self-confidence and self-esteem.33 The adverse effects of GSM on self-esteem may reflect its substantial impact on body image among women with breast cancer. Altered body image can influence the psychosocial well-being of this population.34 LUTS, such as urinary urgency or incontinence, can also diminish social confidence. To date, no studies have specifically examined the impact of GSM on breast cancer-related quality of life indices. Sexual dysfunction is a common concern among women, particularly those with histories of trauma or stress-related disorders.35 This may be especially relevant for BCSs, who could be more vulnerable to sexual dysfunction due to spiritual beliefs and the psychological stress of disease recurrence. A previous study of Thai BCSs suggested that the centrality of family in their spiritual worldview may contribute to uncertainty regarding self-worth and intimate relationships, thereby affecting their willingness to disclose symptoms.36

Approximately half of the BCSs in this study experienced severe GSM symptoms. From the participants’ perspectives, there appears to be a lack of attention from healthcare providers regarding this issue, highlighting a significant gap in the care and management of these patients. Moreover, healthcare teams often overlook GSM during routine clinical practice. A medical record review study found that only 34% of patient records included documentation of GSM or related treatments.10 Although international guidelines provide clear recommendations for GSM management, their application in BCSs remains clinically challenging.8 9 This is largely due to safety concerns about the use of local oestrogen in patients with hormone-sensitive cancers, which necessitates individualised decision-making and cautious interpretation of the guidelines in this population. Nonetheless, it is essential for healthcare providers to prioritise GSM and encourage early treatment, as this can significantly improve patients’ quality of life. Management of GSM in BCSs should follow a stepwise approach, as recommended by major international guidelines, including those from the North American Menopause Society, International Menopause Society, European Menopause and Andropause Society, and the American Society of Clinical Oncology.8 9 22 First-line treatment includes non-hormonal options such as vaginal moisturisers and lubricants, which are widely accepted, safe and available over the counter. In cases where symptoms are moderate to severe and unresponsive to non-hormonal therapies, local hormonal treatments, particularly low-dose vaginal oestrogen, may be considered with caution and in close consultation with the oncology team. Although these therapies are Food and Drug Administration-approved for GSM, their use in BCSs, especially those on aromatase inhibitors, warrants special consideration. Experimental or non-approved treatments, such as vaginal dehydroepiandrosterone, ospemifene and herbal preparations like P. mirifica, have limited safety data in BCSs and are not routinely recommended. These should only be used in research settings or after thorough individualised assessments. Recent advances such as elinzanetant, a neurokinin receptor antagonist, show promise in managing vasomotor symptoms in breast cancer survivors receiving endocrine therapy, potentially improving treatment adherence and quality of life.37 Additionally, emerging interventions such as vaginal laser therapy (eg, fractional CO₂ or erbium:YAG lasers) and injectables (eg, platelet-rich plasma or stem cell-based therapies) have shown some promise in early studies.38–40 However, they are not currently recommended as standard treatments and should be considered investigational, restricted to clinical trials or selected cases under expert supervision. Treatment decisions should take into account efficacy, safety and patient preferences within the broader context of cancer survivorship care. This study underscores the need for more proactive healthcare strategies and open discussions about GSM, particularly among BCSs. Healthcare providers should initiate conversations and normalise dialogue about vulvovaginal and urinary symptoms during follow-up visits. Equipping clinicians with culturally sensitive communication tools and clear guidance on the treatment hierarchy, ranging from non-hormonal to hormonal and investigational options, can enhance care delivery and patient comfort. Incorporating routine screening for GSM into survivorship care plans may help reduce the burden of untreated symptoms. Ultimately, a multidisciplinary and individualised approach is crucial to optimising the quality of life in this vulnerable population.

This study has a few limitations. First, the cross-sectional design precludes the ability to assess causality or changes in symptom disclosure behaviour over time. Second, although the sample size was sufficient for descriptive and bivariate analyses, it was inadequate for robust multivariate modelling, which may limit the generalisability of the findings. Another limitation is the lack of differentiation between types of antioestrogen therapies, such as tamoxifen and aromatase inhibitors (AIs). Although both are commonly prescribed for hormone receptor-positive breast cancer, their mechanisms of action and side effect profiles differ substantially. Tamoxifen, a selective oestrogen receptor modulator, acts as an oestrogen antagonist in breast tissue but may exert partial oestrogen agonist effects on the endometrium, bone and vaginal tissue. Consequently, patients receiving tamoxifen may experience fewer or less severe GSM symptoms. In contrast, AIs suppress peripheral oestrogen synthesis by inhibiting the aromatase enzyme, resulting in a more profound oestrogen deficiency throughout the body, including the urogenital tract. These pharmacological differences may influence both symptom severity and a patient’s willingness or perceived need to disclose symptoms. In our study, however, antioestrogen therapy was analysed as a binary variable (yes/no), as specific treatment data were not collected. Future studies should stratify participants by the type of antioestrogen therapy received to better understand its differential impact on GSM and disclosure behaviour in breast cancer survivorship care. Additionally, data on income status, a potentially relevant socioeconomic confounder, were not collected. Financial resources can influence access to healthcare, treatment-seeking behaviour and health-related communication. The omission of this variable may limit a more nuanced understanding of how socioeconomic status affects GSM symptom disclosure. Fourth, symptom reporting and disclosure behaviour were assessed using self-administered questionnaires, which may be subject to recall bias or social desirability bias, particularly in a cultural context where sexual health is a sensitive topic. Our study included both naturally menopausal and treatment-induced menopausal women, which may introduce variability in GSM symptomatology. While menopausal status was recorded and analysed, future studies focusing exclusively on women with premature menopause due to cancer therapy may provide clearer insights into the direct impact of such treatments on GSM. Finally, as the study was conducted in a Thai population, the findings may not be generalisable to other cultural settings. However, this also highlights the study’s strength in providing culturally specific insights that can inform tailored survivorship care in Asian contexts.

To our knowledge, this is the first study to comprehensively explore the spectrum of GSM symptoms, including vulvovaginal symptoms, lower urinary tract symptoms and sexual disturbances, among BCSs. It also sheds light on the attitudes of BCSs toward GSM and the often-overlooked issue of symptom disclosure. These findings provide valuable insights for healthcare providers seeking to understand the lived experiences of BCSs and improve holistic, individualised care. A major strength of this study is its culturally sensitive approach, offering rare perspectives on the beliefs, attitudes and barriers to disclosure among Southeast Asian women, an under-represented group in the GSM literature. The use of an anonymous, self-administered questionnaire likely enabled participants to share sensitive concerns more openly, yielding ‘untold stories’ that may be missed in routine clinical settings. These findings are highly relevant for healthcare providers aiming to implement culturally responsive and patient-centred survivorship care. Future research should examine the impact of GSM on quality of life using standardised tools specific to breast cancer survivorship and investigate interventions that improve provider-patient communication across diverse cultural settings.

In conclusion, GSM is prevalent and under-reported among BCSs. Despite experiencing symptoms that adversely affect their quality of life, many women do not seek help or disclose them to healthcare providers. This study highlights the need for proactive, culturally sensitive communication and routine screening in survivorship care. Education of both clinicians and patients regarding GSM and its management is essential for improving the quality of life and facilitating optimal care for BCSs.