Lived experience of medical management in recurrent vulvovaginal candidiasis: a qualitative study of an uncertain journey.

The array of negative emotions experienced by participants influenced their sense of self and identity and dictated interactions in social, professional, and intimate relationships. The majority of participants cited shame and awkwardness of this “personal issue”, and how it impacted so many facets of their life, describing this as overwhelming. All participants discussed their hesitancy to disclose the details of their condition to friends and family: And I feel embarrassed talking about it. There is shame. I'm kind of letting go of that now, but it's always shameful thrush, like, I have that shame attached to it. I never felt comfortable talking to my girlfriends about it... (RVVCR25) Participants reported interacting with others experiencing similar problems in online environments, often remaining anonymous. It allowed them to find out what had worked for others without the stigma and potential embarrassment of disclosure experienced in face-to-face interactions. And I feel embarrassed talking about it. There is shame. I'm kind of letting go of that now, but it's always shameful thrush, like, I have that shame attached to it. I never felt comfortable talking to my girlfriends about it... (RVVCR25) All participants in long-term relationships were thankful for spousal support and understanding. However, the experience was tempered by feelings of guilt related to not meeting partner sexual desire at the frequency they perceived appropriate or required to maintain a healthy sexual relationship. Most participants reported that despite the understanding displayed by partners, the restrictions placed on intimacy by RVVC caused distress, relationship strain and dissonance: …I think my husband struggled, in the beginning, to understand that it [RVVC] was actually a thing; he’s like, you know, you should be over this by now… it's been four years... When I got it again, I'd get quite down. (RVVC27) Yeah, but in terms of like sex and stuff like it's almost it's gotten to the point where my boyfriend is scared of my vagina…that's not really his fault. But, yeah, it definitely causes a strain. (RVVCR20) …I think my husband struggled, in the beginning, to understand that it [RVVC] was actually a thing; he’s like, you know, you should be over this by now… it's been four years... When I got it again, I'd get quite down. (RVVC27) Yeah, but in terms of like sex and stuff like it's almost it's gotten to the point where my boyfriend is scared of my vagina…that's not really his fault. But, yeah, it definitely causes a strain. (RVVCR20) Participating in sexual acts also contributed to the burden of symptom management by triggering the need to implement lifestyle routines post coitally. Additionally, pessimism was associated with the cessation of behaviours, such as wearing lingerie, perceived to be important for maintaining a healthy sexual relationship: It definitely has a big impact on my sex life because I'm always thinking if we do some things, I'm thinking I'm going to get an infection. I thinking I'm going to have to go and have a shower or wash myself afterwards. Things like wearing, you know, some nice lingerie I never do that anymore because I know it's not good for me and it's just taken lots of things off the table and really created a mental barrier in my mind about doing sexual things because I'm always afraid that I'm going to get thrush again. It's just doesn't seem worth it. (RVVCR16) A participant had specifically not sought out a new relationship because of the disclosure associated with their diagnosis and the limitations and physical compromises around intercourse: If I met someone new, I would have to explain that situation to them and then I would have to go through the process I went through in the past relationship. (RVVCR27) Trying one approach after the other, including implementing lifestyle change, caused not only a burden for themselves and their partners, but also impacted their whole family. Many participants expressed misgivings and annoyance associated with modifying so many aspects of their lifestyle and daily activities without guaranteed benefit. Participants went to extraordinary lengths of lifestyle changes, sometimes without guarantee of success, but were too scared to cease such activities for fear of symptoms worsening: …Sometimes you get to a point, though, when you're too scared to go back just in case something is working. So, if I'm doing everything, you feel like 'you're doing a bit better’…And that just makes me too scared to change anything, I know there's probably tonnes of stuff that I'm doing that I don't need to be doing. I'm a little bit nervous, too, just in case 'it's the thing that's actually helping as well. (RVVCR4) All participants were cognisant of the psychological and psychosocial burden that living with RVVC had on them. Despite this, none of the participants had discussed their vaginal health with a psychologist or similar professional, even if they were already accessing mental health support: I think for me the psychological impact has been way bigger than I even realised. I think it all sort of started about yes 17/18 and even now at 34 [years of age], I'm still trying to figure it out and recover from it. (RVVCR10) Nobody's ever said, how does this affect you mentally? Which, as I said, luckily, I'm not a depressive person because, you know, there's been times that I've been in tears over this, but it's tears of frustration. (RVVCR21) But yeah, like, it's never occurred to me to get, I guess, counselling for that specifically, even though it's very distressing, I guess because it's so personal to, you know what I mean. You're the first person I've spoken to about it. Actually, I haven't even ever mentioned it to a friend. (RVVCR27) It definitely has a big impact on my sex life because I'm always thinking if we do some things, I'm thinking I'm going to get an infection. I thinking I'm going to have to go and have a shower or wash myself afterwards. Things like wearing, you know, some nice lingerie I never do that anymore because I know it's not good for me and it's just taken lots of things off the table and really created a mental barrier in my mind about doing sexual things because I'm always afraid that I'm going to get thrush again. It's just doesn't seem worth it. (RVVCR16) If I met someone new, I would have to explain that situation to them and then I would have to go through the process I went through in the past relationship. (RVVCR27) …Sometimes you get to a point, though, when you're too scared to go back just in case something is working. So, if I'm doing everything, you feel like 'you're doing a bit better’…And that just makes me too scared to change anything, I know there's probably tonnes of stuff that I'm doing that I don't need to be doing. I'm a little bit nervous, too, just in case 'it's the thing that's actually helping as well. (RVVCR4) I think for me the psychological impact has been way bigger than I even realised. I think it all sort of started about yes 17/18 and even now at 34 [years of age], I'm still trying to figure it out and recover from it. (RVVCR10) Nobody's ever said, how does this affect you mentally? Which, as I said, luckily, I'm not a depressive person because, you know, there's been times that I've been in tears over this, but it's tears of frustration. (RVVCR21) But yeah, like, it's never occurred to me to get, I guess, counselling for that specifically, even though it's very distressing, I guess because it's so personal to, you know what I mean. You're the first person I've spoken to about it. Actually, I haven't even ever mentioned it to a friend. (RVVCR27) Reluctance to discuss their condition even in the confines of professional confidentiality appeared to stem from the personal nature of RVVC.

Holistic and integrative care is necessary as RVVC has a complex pathophysiology and clinical manifestation. As such identifying allied health and CM support services that can follow or complement conventional pharmacotherapy options is vital to improve clinical outcomes and offer additional support for relapsing patients. Educating HCPs on specific aspects of RVVC to support timely diagnosis and adequate management is crucial. Safety of pharmacotherapy and its place in specific conditions and situations such as pregnancy needs a clearer understanding. This also includes reviewing and updating clinical management guidelines to include referral pathways for diagnosis, management, and psychological support. The potential role of CMs and lifestyle modification as a component of patient-centred care need to be further explored. Patient-specific holistic care resources in an easy-to-understand format would strengthen confidence in clinical care, minimise patient concern and enhance wellbeing.

An exploratory, qualitative study using Interpretative Phenomenological Analysis (IPA) was undertaken to identify the personal experience and lived realities of women with RVVC. Interpretive phenomenology is a well-established qualitative approach and is utilised here to provide a deeper understanding of the nature or meaning of RVVC patient experiences [ 18 ]. These experiences can be complex, emotionally laden, uncertain and reflective of an individual’s life experiences and responses to change. IPA allows thorough exploration of these subjective health experiences [ 18 ]. Griffith University human research ethical approval for the study was obtained (Ref No.:2021/144). Participants were recruited via email from a group of women over 18 years of age with a confirmed diagnosis of RVVC who had recently been screened for participation in a national RVVC clinical trial in Australia (ANZCTR 12620001084976). Women with idiopathic RVVC were recruited via purposive sampling to participate in semi-structured interviews. Idiopathic RVVC was defined as four or more episodes in a 12-month period, including evidence of at least one Candida positive vaginal culture and no other causative primary health conditions. Consent was obtained upon completing the pre-interview survey and verbally in the interviews. All participants were English speaking. Participants completed a 10-min pre-interview survey using LimeSurvey [ 19 ] consisting of questions relating to demographic characteristics, concurrent health issues and sexual behaviour. One-on-one semi-structured interviews were conducted via Microsoft Teams within two weeks of the survey completion. An interview guide was developed to support the semi-structured interviews, containing questions regarding their first and recurrent episodes of RVVC; beliefs around the causes and triggers of RVVC; treatment options and management experiences; information access around self-help and CM utilisation; and the impact of RVVC on well-being (see Additional file 1 : Interview Guide 1.0). The project team reviewed the guide and piloted it with consumers, colleagues and specialist clinicians working with RVVC. Interviews occurred between April–July 2021. All interviews were undertaken by the same researcher (MBS) who had clinical and research experience with RVVC patients. Interviews were audio-visually recorded and transcribed via Microsoft Teams. Each participant was assigned a code, e.g. RVVCR1, RVVCR2, to ensure de-identification. Transcriptions were reviewed and quality checked manually by MBS to ensure engagement with the collected data and to maintain participant confidentiality. Notes were made during and after the interviews to assist understanding of data and analysis. All participants were sent de-identified copies of their transcript and provided the opportunity to review, change or add details as desired; one participant corrected a detail relating to dates and oral therapy. Transcripts were coded using NVivo (Version 1.5.1) by the interviewer (MBS) in consultation with the research team. IPA was performed to examine participant perspectives, highlighting differences and similarities and generating unanticipated insights [ 20 ]. Coded data and methods were independently reviewed by each member of the research team before being discussed on two occasions when discrepancies were resolved via consensus, coding was refined and re-organised, and the main emergent themes were defined. Data were analysed simultaneously with data collection, the research team agreed that the 10th interview observed saturation consistent with other qualitative studies as no further themes were evident.

Twenty-eight RVVC patients identified through RVVC clinical trial screening were eligible; twelve patients completed the pre-interview survey. Two participants decided not to proceed with an interview because of personal reasons; their survey data was not included in the final analysis. Pre-interview survey data revealed that participants were pre-menopausal and aged between 18 and 44 years. Nine participants were sexually active. A review of comorbidities revealed a range of conditions relevant to the pathophysiology of RVVC (Table 1 ). Eight participants reported two or more comorbidities in addition to their RVVC. Table 1 Demographic and clinical characteristics of participants RVVC participant characteristics (n = 10) percentage Frequency (percentage) Age range of participants 18–24 years 1 (10%) 25–34 years 4 (40%) 35–44 years 5 (50%) Sexually active Yes 9 (90%) No 1 (10%) Other health conditions Irritable bowels syndrome 5 (50%) Anxiety 4 (40%) Depression 4 (40%) Hayfever 3 (30%) Recurrent urinary tract infection 3 (30%) Endometriosis 3 (30%) Adenomyosis 1 (10%) Polycystic ovary syndrome 1 (10%) Pelvic inflammatory disease 1 (10%) Small intestinal bacterial overgrowth 1 (10%) Inflammatory bowel disease 1 (10%) Psoriasis 1 (10%) Dermatitis 1 (10%) Autoimmune disorders— (Hashimoto’s thyroiditis) 1 (10%) Demographic and clinical characteristics of participants Analysis identified four key themes: (1) challenges with RVVC diagnosis and management, (2) limitations of HCP knowledge and management, (3) the impacts of lack of HCP support, and (4) emotional and psychosocial repercussions of living with RVVC.

This study facilitated an open sharing of lived experiences for participants through a semi-structured interview format. Our study participants were driven by a need to find answers and better solutions for their chronic condition and may not be truly representative of all RVVC patient experiences. These participants may represent a subset of people for whom delay in diagnosis and problematic management is common, serving as motivation to seek solutions outside of standard medical care. This research was conducted from the patient perspective. To balance the perceived criticisms of HCPs and knowledge limitations assessing the experience and knowledge base of HCPs around RVVC management is required.

Recurrent vulvovaginal candidiasis (RVVC) is a chronic subtype of vulvovaginal candidiasis (VVC) defined as at least four symptomatic episodes of VVC in the previous 12 months with at least one positive culture [ 1 , 2 ]. Vulvovaginal pruritus, irritation, soreness, dyspareunia and vaginal discharge are considered to be cardinal symptoms, although are often variable in severity [ 3 ]. Idiopathic RVVC occurs in otherwise well individuals with no significant identifiable triggers such as antibiotic use or metabolic disorder [ 4 ]. Current estimates indicate that 75% of all women will develop VVC in their lifetime, with around 5–10% of women experiencing RVVC [ 5 ]. There has been no substantial reduction in lifetime annual prevalence rates of RVVC in the past 30 years despite advances in drug development and the introduction of long-term azole treatment. Projections suggest an upward trend in RVVC prevalence by 2030 [ 1 ]. As with other chronic women's health conditions (e.g. endometriosis), significant delays in diagnosing RVVC are common [ 6 ]. A diagnosis of RVVC often follows a substantial healthcare journey involving recurrent visits to a General Practitioner (GP) either from the onset of VVC symptoms or when symptoms recur following over-the-counter (OTC) treatment [ 7 ]. Management of RVVC is often sub-optimal, with no fully curative approaches in conventional medicine [ 8 ]. Prolonged courses of oral azole or vaginal therapy for 6 months or more, referred to as maintenance therapy, is the most effective management approach, which, after cessation, has an approximate 50% relapse rate [ 9 ]. A recent assessment of the prescribing guidelines for RVVC suggested a large variety in treatment approaches, leading to RVVC patients not being offered sufficiently prolonged maintenance therapy or even at all [ 10 ]. Referral pathways are also poorly defined, and referral is not always initiated [ 10 ]. Dissatisfaction with prescribed medical management, high relapse and patient doubts about medication safety and effectiveness have resulted in patient utilisation of complementary medicines (CM) [ 11 , 12 ]. Health Care Practitioner (HCP) knowledge and care have been identified as important factors in the successful management of RVVC [ 7 , 12 , 13 ]. RVVC is a disorder with significant physical and psychological impact [ 14 ]. The repercussion of which extend to loss of confidence, self-esteem, intimacy and quality of life [ 1 ]. Qualitative studies have identified an undercurrent of shame and stigma [ 12 , 13 , 15 , 16 ], as well as loss of productivity [ 14 , 17 ], but the extent of the burden of the disease for patients living with RVVC is less studied. This study explored the lived experiences of RVVC patients in Australia, including their perceptions of the journey to a diagnosis, medical management, and clinical care.

Living with RVVC seems an uncertain, challenging, and lonely journey for most women. This research tells a compelling story of frustration, disappointment, dismay, and hopelessness compounded by delays, inadequacies, and inconsistencies associated with the long-term management of RVVC and the breakdown of the patient–practitioner relationship. While resilience and self-empowerment were noted, better support through evidence-based treatment options, educated and evidence-informed HCPs and an empathetic psycho-social support network is essential to decrease disease burden and improve health outcomes. The current and future RVVC management plan should consider: awareness by HCPs of RVVC as a chronic condition, its timely diagnosis and need for long-term management; effective pharmacotherapy options and support in utilising evidence-based lifestyle changes and timely referral to mental health and well-being support services.

This exploratory qualitative study provides insights to the life-long burden of living with RVVC. Major themes from present research highlights adverse psychological impacts stemming from delays to diagnosis, treatment programs, and the lack of understanding and referral from HCPs. Whilst patient’s struggles with RVVC are reported [ 7 , 12 , 21 ], the total extent of psychological, emotional and financial impacts on women living with RVVC remains understudied. This study also supports findings from studies conducted in similar cohort [ 1 , 13 , 17 ]. Surprisingly, our study findings suggest that the disease burden is primarily associated with apparent inadequacies in HCP knowledge of RVVC and the subsequent impacts on medical management. There is a paucity of research exploring the diagnostic journey of RVVC patients timeframes from the onset of recurrent symptoms to receiving an RVVC diagnosis. Our findings highlight an extended timeframe to the diagnosis of up to three -years. Delay in diagnosis is commonly reported in women's reproductive health disorders like endometriosis and other vulval and genital related disorders such as Lichen sclerosis [ 6 , 22 ]. Reasons for delay in diagnosis include non-specific and overlapping symptoms with other gynaecologic, urologic and gastrointestinal disorders, similar to RVVC [ 3 , 6 , 23 ] and isattributed with significant impacts on psychological wellbeing [ 6 , 22 ]. Experiences shared by study participants identify a psychological impact from a lack of understanding by HCPs of RVVC which contributes to diagnostic delay and ineffective treatment. The diagnosis of RVVC requires an awareness of the difference between VVC and RVVC, a sound patient history to identify the frequency of symptomatic episodes coupled with an understanding of the limitations of culture-based microbial identification and previous response to azole therapy [ 3 , 24 ]. Whilst evidence assessing HCP knowledge surrounding RVVC diagnosis is sparse, participants’ experiences would suggest that one or more of these factors impacted their diagnostic experience. Interviews revealed that there was a wide variation to treatment approaches. Current evidence identifies maintenance therapy approaches of 6 months or more as efficacious for long-term symptom relief [ 10 ]. Maintenance therapy courses were often less than 6-months in duration as reported by study participants. The variations to maintenance therapy are consistent with a recent review of Australasian RVVC prescribing guidelines [ 10 ]. Participants perceived therapeutic management approaches for RVVC with mixed outcomes and feelings. While some were appreciative of the relief obtained from therapy others were concerned and confused, which led them to initiate CM approaches. Participants expressed safety concerns for over-reliance on oral azole as a long-term therapy and medications for RVVC in pregnancy and conception. The complexities in using pharmacotherapy options and their safety profile caused distress, as only topical azole therapy is considered safe in pregnancy [ 25 , 26 ]. The risk of more severe symptoms in pregnancy due to estrogen levels and immune status [ 25 , 27 ], and the inability to use oral azole therapy posed concerns as participants reported topical azole therapy was often an inadequate option. A loss of confidence in HCPs was evident in the interviews, with many participants reporting either observed knowledge limitations or admittance from their HCP that they had reached their limit in being able to offer care. The dissatisfaction associated with the lack of knowledge of clinicians who treat RVVC as “just thrush” led to participants seeking repetitive OTC care and reliance on pharmacist advice. Both scenarios caused distress for individuals and often initiated ad-hoc referral to another practitioner or via the participants' request. Prior research suggests that positive and informed HCP experiences could strengthen the belief in the patient’s treatment journey [ 12 ]. Conducive communication with empathy and care was perceived as a respite from the challenging reality of the condition [ 7 , 12 ] Majority of study participants felt their HCP was not as supportive as they were expected to be. Some participants who sought support from the same HCP still felt their presentation was downgraded to a minor complaint. Repercussion of such perception perpetuated diagnostic delays and decreased confidence in the HCP[ 12 ]. Participants’ who reported positive HCP interactions had regular care providers who had customised their management journey based on their clinical history. These positive interactions are reflective of HCP continuity of care strengthening the therapeutic relationship [ 12 , 28 ]. Continuity is disrupted in a healthcare model where individuals lack a regular clinician, accessing next available HCPs [ 29 ]. Participants in our study discussed barriers to accessing effective treatments from “available on the day” GPs. Our study also highlights lack of knowledge in holistic care approaches, including lifestyle, CM and allied health services. Eight participants had utilised CM nutritional and herbal supplemental therapy, with five participants accessing naturopathic care. Participants found these approaches to be supportive and, in some cases, preferred for their ability to control and manage recurrent symptom relapse as a component of person-centred care (PCC), where patient autonomy and care preference are essential [ 30 ]. Unfortunately, participants reported clinicians were not always supportive of CM therapies and, in some cases, dismissive of their potential role in RVVC management. A published survey of vulval health clinicians emphasised the important role of CM to complement conventional pharmacotherapies, with approximately 50% of their patients on probiotic therapy and 27% on dietary therapy [ 11 ]. These discrepancies may be influenced by the lack of vulval health and RVVC specialisation of the HCPs consulted by our participants. The quality of life impacts of RVVC extend beyond experiences with HCP interactions, and diagnostic and therapeutic uncertainty. Diminished responses to physical and psychological well-being, in addition to effects on social relationships and overall loss of productivity, are attributed to poor quality of life with RVVC [ 14 , 17 ]. Participants reported negative psychological impacts and uncertainty associated with ongoing lifestyle management and modification to reduce symptom severity and recurrence. Despite long perpetuated recommendations associated with personal hygiene, exercise, underwear fabric choice, lubricants and post-coital routines, there is little evidence to support many of these modifications [ 31 – 33 ]. Consistent with prior literature, these changes were introduced either without HCP knowledge or when HCP were aware they did not provide input or support [ 12 ]. For many of our participants, symptoms persisted despite changing multiple perceived influences. When minor improvements occurred, identifying which factor was beneficial was difficult. The inability to find one causative influence created a reluctance to modify anything in case symptoms worsened. Changes implemented included lifestyle factors with more conclusive evidence, such as diet and alcohol intake [ 31 ]. Whilst these changes appeared beneficial for symptom control, they had significant negative impacts socially and within the family unit. Consistent with earlier research more than one participant discussed missing out on social enjoyment or feeling burdensome to the family because of their self-imposed restrictions on diet and alcohol [ 12 ]. Clinically, RVVC psychological impacts are often overlooked, with symptoms perceived as insignificant and non-life impacting [ 6 , 17 , 34 ]. The need for psychological support in RVVC has been previously reported [ 34 ], although psychological support referral pathways do not feature in clinical practice guidelines [ 35 ]. These referral services could be utilised as an adjunct to pharmacotherapy while the patients navigate the uncertainty associated with unobtainable cure. The actual psychological burden of RVVC appears to be multifactorial; living with an incurable condition, disappointing and uncertain interactions with multiple HCPs, ongoing lifestyle modification and negotiation, and impacts related to intimate relationships and decreased self-esteem from self-imposed shame and stigma. Psychological stress is also considered as a risk factor RVVC, with sexual health, anxiety and depression impacting symptom recurrence [ 36 , 37 ]. In our study, four participants reported having both anxiety and depression; of these two participants were accessing psychological support services, however, none were doing so to deal with the impacts of RVVC, nor had it been suggested to them by their HCP as a possible allied health therapy for RVVC management. Those accessing psychological support therapies cited shame and embarrassment, preventing them from discussing RVVC in their consultations. Notwithstanding the significant impacts on intimacy and sexual health reported by participants and in qualitative studies exploring recurrent vaginal health issues [ 7 , 38 ], no participants had accessed or been advised to access psychosexual or counselling support specifically for support in their intimate relationships. This lack of psychological support is congruent with participants noting that they had not discussed the condition's sexual health impacts with their HCP. There is an urgent need for allied health referral services in RVVC. Mental health care should be considered in RVVC management guidelines as a component of patient-centred care approach. The lack of allied health support service referrals suggests that the current treatment modality of RVVC is not aligned with the potential psychological implications of this condition on sexual health and relationships. Despite what seemed like a disempowering and painful experience, participants displayed remarkable strengths. The empowerment comes from self-advocacy for referral and testing, from exploring difficult conversations with loved ones and family, and from pushing through, despite chronic relapsing symptoms to achieve life milestones related to family growth, career goals, and personal self-exploration. Participants also showed a significant understanding and empathy to the shortfalls apparent in the management of RVVC. HCPs who had provided them support despite cure remaining elusive were reported on favourably, highlighting the role of positive therapeutic relationships [ 28 ]. Collectively, participants were favourable towards a more integrative and patient-centred care approach that addresses the existing management gaps and causes of uncertainty in RVVC.

Additional file 1. Interview Guide 1.0. The interview guide was developed to support the semi-structured interviews, containing questions regarding their first and recurrent episodes of RVVC; beliefs around the causes and triggers of RVVC; treatment options and management experiences; information access around self-help and CM utilisation; and the impact of RVVC on well-being. Additional file 1. Interview Guide 1.0. The interview guide was developed to support the semi-structured interviews, containing questions regarding their first and recurrent episodes of RVVC; beliefs around the causes and triggers of RVVC; treatment options and management experiences; information access around self-help and CM utilisation; and the impact of RVVC on well-being.