‘I’m sick of being called insane’: experiences of Australian healthcare support for premenstrual distress
Megan E. Buys
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Abstract
Despite increasing recognition of the lived-experience of premenstrual distress (PMD), research into individuals’ accounts of healthcare support for these conditions remains limited, particularly in Australia. This study aimed to qualitatively explore how individuals experience Australian healthcare support for PMD, with a focus on identifying helpful and unhelpful elements of care.
Qualitative data were collected through open-ended survey questions and one-to-one, in-depth interviews. Data were analysed using thematic analysis informed by The Listening Guide.
A total of 106 survey respondents and 13 interview participants took part in the study. Participants’ experiences of Australian healthcare support for PMD reflected four main themes. The comprehensive experience described helpful experiences with healthcare providers who offered validating, knowledgeable and holistic care. The reductionist experience described experiences with superficial solutions that failed to address the complexity of participants’ experiences. The uninformed experience described experiences with healthcare providers who lacked awareness or understanding of PMD. The dismissed experience described experiences where participants’ concerns were minimised or invalidated by their healthcare providers.
Findings highlight both the presence of affirming care and the persistence of dismissive and inadequate responses within the Australian healthcare system. These results underscore the need for improved clinician education, trauma-informed and person-centred approaches, and a broader range of care options that are responsive to the complexity of PMD experiences.
Keywords: Australia, health care, PMDD, PME, PMS, premenstrual distress, premenstrual dysphoric disorder, premenstrual exacerbation, premenstrual syndrome, psychology, therapy.
Introduction
Premenstrual distress (PMD) encapsulates the cognitive, affective and physical changes experienced in people with female physiology during the late luteal phase of the menstrual cycle, with symptoms easing once menstruation begins. The term PMD broadly includes premenstrual syndrome (PMS), which affects upwards of 98% of the female population worldwide (Rapkin and Winer 2009); premenstrual dysphoric disorder (PMDD), a mood disorder affecting upwards of 8% of the female population worldwide (Hantsoo and Epperson 2015); and premenstrual exacerbation, the exacerbation of symptoms of a separate disorder during the luteal phase of the menstrual cycle (Kuehner and Nayman 2021). Typical symptoms of PMS include mood changes, anxiety, anger, depression, difficulties in concentration, fatigue, sleep disturbance, breast tenderness and bloating (Rapkin and Winer 2009). Similar experiences, albeit more severe and significantly impacting daily life, occur with PMDD (Hantsoo and Epperson 2015). The current study investigates PMD in the context of client/patients’ experiences of professional healthcare support.
Despite international bodies, such as the International Society for Premenstrual Disorders (Ismaili et al. 2016) developing consensus guidelines for PMD diagnosis and support, PMD has been described as being at a ‘crossroads’ (Hantsoo et al. 2022, p. 101) between psychiatry and gynaecology. Although there is perceived benefit to the intersection between healthcare domains, researchers acknowledge how a broad arena for PMD support has instead left clinicians with unclear treatment guidelines and client/patients with diluted options (Hantsoo et al. 2022). In Australia, among other countries, an individual’s general practitioner (GP) acts as a ‘gatekeeper’ (Funnell et al. 2024a; Weisz and Knaapen 2009) towards most other health services, including psychological support. As such, seeing the GP is often the first step taken when seeking professional support for PMD. Other common professional support options include psychiatrists, gynaecologists, psychologists/psychotherapists and alternative health professionals, although modes of care significantly vary between countries (Weisz and Knaapen 2009).
Despite the multitude of support options available, results from a global survey on client/patient responses to provider competencies regarding PMDD were concerning (Hantsoo et al. 2022). Reporting on provider interpersonal factors, results found that participants rated GPs, psychiatrists and gynaecologists poorly on levels of ‘compassion’, ‘believing’ the client/patient and ‘willingness to learn’ about PMDD, alongside poor knowledge of PMDD and lack of support options provided (Hantsoo et al. 2022, p. 103). Expanding on these results, a recent UK)-wide survey exploring experiences for mental health symptoms related to the menstrual cycle found that 78% of participants felt their experiences were not taken seriously by their healthcare provider (Funnell et al. 2024a). Within Funnell et al.’s (2024b) adjacent study, qualitative themes identified included lack of empathy from healthcare providers, lack of knowledge of premenstrual symptoms and disorders, insufficient investigation into the client/patients’ symptoms, and a ‘one size fits all’ response for treatment options; primarily consisting of either antidepressant medication or the oral contraceptive pill (Funnell et al. 2024b). It is clear that there is a discrepancy of care regarding support options for PMD, which may explain the small proportion of individuals are actually seeking professional health care for PMD (Funnell et al. 2024a; Weisz and Knaapen 2009).
The only published qualitative systematic review and thematic synthesis found on the impact of PMD revealed the majority of studies reported on client/patients being dismissed by healthcare providers (Brown et al. 2024), with further studies describing experiences of being misdiagnosed, silenced and medically ‘gaslit’ (Buys 2024), and needing ‘to be their own doctor’ (Labots-Vogelesang et al. 2023). In the UK, Osborn et al. (2020) described years of diagnostic misjudgements and adverse medications. An ‘unheard voice’ was a major theme from the study, where participants mention encounters of being dismissed by healthcare professionals, such as being told their significant changes in mood were ‘part of a normal female experience’. Such encounters led to an ‘ongoing mistrust of medical professionals’ and a ‘continued battle for recognition’. These results are mirrored in Chan et al.’s (2023) study in the US, where multiple barriers to successful treatment and support for PMDD were noted. Of note, lack of validation for psychological aspects, ‘power dynamics’ and ‘medical gaslighting’ where providers would dismiss the patient/client’s experiences were found (Chan et al. 2023). A more recent qualitative study from Canada echoes these themes, speaking to experiences of misogynistic health care, where ‘heavily gendered’ misdiagnoses and ‘hysteria tropes’ undermined the embodied knowledge and personal expertise of the participants (Habib et al. 2025). Earlier studies highlight that little has changed for individuals in terms of healthcare experiences for PMD across the past three decades (Byles et al. 1997; Kraemer and Kraemer 1998).
Although experiences of healthcare support for PMD have been previously investigated, the limited number of studies either use quantitative methods or are based in countries outside of Australia. These gaps are addressed by offering a qualitative exploration of individuals’ experiences with healthcare support for PMD in Australia. By situating the investigation within the Australian healthcare context, this study is the first to offer contextualised insights into the ways individuals are and are not supported, but also highlights structural gaps in the provision of care in the Australian healthcare system. The study aims to contribute to a more nuanced understanding of the acceptability, accessibility and responsiveness of healthcare services for PMD in Australia, ultimately informing more person-centred and effective approaches to support.
Methods
Study design
The present study employed an exploratory qualitative design using multiple data collection methods to explore individuals’ experiences of Australian healthcare support for PMD. Data were collected through an open-ended survey and one-to-one interviews. The survey gathered detailed written responses that provided initial insights, whereas the interviews allowed for further exploration of themes in greater depth. The survey and interview data were collected between the 4 September 2024 and 22 November 2024, and were part of a broader project investigating the experience and construction of a co-designed psychotherapy program tailored to PMD. Ethical approval was granted by the University X Human Research Ethics Committee (approval number H15891). Participation was voluntary and informed. All participants provided written consent.
Participants
Inclusion criteria for participants were: (1) participants must be between the ages of 18 and 45 years, (2) hold a sound understanding of the English language, (3) be living in Australia, and (4) currently are experiencing symptoms of premenstrual distress.
The sample sizes support likely information power (Malterud et al. 2016; Baker and Edwards 2017; Hennink et al. 2017). The chosen sample size for the interviews supported the study’s theoretical standpoint and aim of capturing of vivid, idiographic accounts from participants; ‘thick’ data (Hennink et al. 2017) that offer rich insights rather than providing generalisability for statistical purposes (Smith et al. 2009).
Participants were recruited through an advertisement containing a survey link, shared through social media and online support groups related to PMD, primarily targeting the broader Sydney, NSW region. The survey functioned as both a data collection and recruitment tool where participants were able to express interest in taking part in a one-to-one interview. No incentive was offered for participation.
Data collection
An online survey was used for the first stage of data collection for the broader project. The study reports on four open-ended questions from the survey around participants’ experiences with health care for PMD. These questions involved asking if the participant has experiences healthcare support for PMD before, what kind of healthcare support they have experienced and what their experience with this support was like. The survey was also used to collect demographic data and utilised the Premenstrual Symptoms Screening Tool (PSST; Steiner et al. 2003) to evaluate severity levels of PMD.
Semi-structured, in-depth interviews were used for the second stage of date collection for the broader project. The study reports on the aspects of the interviews where participants discussed their experience with healthcare support for PMD. These responses were gained from asking participants about their current support for PMD both personally and professionally, what current or previous experiences of health care was like for participants, and what aspects of their healthcare experience they found helpful and unhelpful, and why. Interviews were conducted using Zoom and lasted 60 min. Transcripts were integrity checked and had all identifying information removed, with names replaced with pseudonyms.
Data analysis
Both open-ended survey responses and interview transcripts were analysed using thematic analysis that was informed by The Listening Guide (Gilligan et al. 2003; Gilligan 2015; Gilligan and Eddy 2017). Braun and Clarke (2022) introduce thematic analysis as a method for ‘developing, analysing and interpreting patterns’ within qualitative data, where a dataset is coded and grouped into common themes. Building upon traditional qualitative methods, The Listening Guide is a voice-centred, feminist approach to the analysis of narrative data. The Listening Guide is noted as a ‘rhizomatic’ (Tolman and Head 2021) practice of hearing and interpreting, where the researcher attunes to the polyphony of voices within the single participant, both obvious and subtle, to privilege aspects of the participants’ experiences that might otherwise have been overlooked. The first step of the analysis procedure involved familiarisation and immersion with each participant’s story as a whole, where first-order codes were identified. Then, the researcher engages with a distinct voice within a single transcript and followed that voice through each transcript, if present, allowing subtler codes to be found. This approach allowed for the detection of nuanced emotional and relational themes.
The same approach was used for the open-ended survey responses. Survey and interview data were analysed iteratively and comparatively, with the orientation to the data taking an inductive approach, with the creation of themes driven by the data rather than utilising a pre-existing coding frame. Triangulating survey responses with in-depth interview data strengthened the study’s depth, enabling both breadth of perspectives and contextualised understanding of participant experiences. A fluid coding summary was developed, which was used as an organisational tool to code the complete dataset, where themes were then identified and refined.
Researcher positionality
Throughout all phases of the study, I critically reflected on how my own upbringing, cultural background, and dual roles as researcher and psychotherapist shape the lens through which I conduct and interpret this research (Lafrance and Wigginton 2019; Gilligan and Eddy 2021). I am a white, Western, educated, middle-class woman, whose family history includes generational experiences of gendered inequality and violence. These personal and professional dimensions inevitably inform how I engage with the topic, the participants and the knowledge constructed throughout this study.
Results
Participant demographics
A total of 106 participants completed the survey. Survey participants were aged between 20 and 45 years, with a mean age of 32.6 years; 97% identified as a woman, with 3% of participants identifying as non-binary or agender; 71% described their sexuality as straight, 27% described their sexuality as gay/lesbian/queer and 2% described their sexuality as bisexual; 75% were currently in an intimate relationship; with the mean score for the PSST indicating moderate-to-severe premenstrual symptoms.
A total of 13 participants took part in the one-to-one interviews. Interview participants were aged between 24 and 40 years, with a mean age of 31.3 years; 100% identified as a woman; 39% described their sexuality as straight, 46% described their sexuality as gay/lesbian/queer and 15% described their sexuality as bisexual; 69% were currently in an intimate relationship; with the mean score for the PSST indicating moderate-to-severe premenstrual symptoms. All interview participants resided in Sydney, NSW. Table 1 outlines interview participant demographics.
| Name | Age (years) | Ethnicity | State residing | Gender | Sexuality | Medication | PSST score | |
|---|---|---|---|---|---|---|---|---|
| Amara | 31 | Filipino Australian | NSW | Cisgender woman | Straight | Hormonal IUD | Moderate–severe | |
| Rae | 34 | Eastern-European Australian | Victoria | Cisgender woman | Queer | Antidepressant | Moderate–severe | |
| Val | 37 | Latin American | NSW | Cisgender woman | Straight | No | Moderate–severe | |
| Elenor | 25 | White Australian | NSW | Cisgender woman | Queer | No | Severe | |
| Maya | 31 | Not provided | NSW | Cisgender woman | Straight | No | Severe | |
| Liz | 37 | New Zealander | NSW | Cisgender woman | Queer | No | Moderate–severe | |
| Ash | 30 | White Australian | NSW | Cisgender woman | Queer | No | Moderate–severe | |
| Monique | 40 | Aboriginal Australian and Canadian | NSW | Cisgender woman | Queer | Evening primrose oil | Moderate–severe | |
| Sarah | 24 | White Australian | Tasmania | Cisgender woman | Straight | Hormonal IUD | Moderate–severe | |
| Brooke | 28 | White Australian | NSW | Cisgender woman | Queer | Medicinal cannabis | Severe | |
| Simone | 26 | Jewish Australian | NSW | Cisgender woman | Bisexual | Antidepressant | Severe | |
| Jade | 33 | Chinese Australian | NSW | Cisgender woman | Bisexual | Antidepressant | Severe | |
| Belle | 31 | White Australian | NSW | Cisgender woman | Straight | Oral contraceptive | Severe |
Participant experiences
Participants’ experiences of Australian healthcare support for PMD reflected four main themes. The comprehensive experience described helpful experiences with healthcare providers who offered validating, knowledgeable and holistic care. The reductionist experience described experiences with superficial solutions that failed to address the complexity of participants’ experiences. The uninformed experience described experiences with healthcare providers who lacked awareness or understanding of PMD. The dismissed experience described experiences where participants’ concerns were minimised or invalidated by their healthcare providers. Most participants described multiple types of experiences across time and healthcare providers, often encountering dismissive or uninformed care before accessing more comprehensive support. Participants primarily spoke about their interactions with GPs, psychologists and/or psychotherapists. Few had consulted psychiatrists and gynaecologists for PMD.
Participants described helpful healthcare experiences being a strong therapeutic relationship, seeing a healthcare provider that is knowledgeable in PMD and one who provides comprehensive care. ‘Home, safe and healing’ is what a survey participant described their psychotherapist as; ‘I’ve always felt safe to be vulnerable, even when it’s hard’ another mentioned. When interview participants asked what made their relationship with their healthcare provider helpful, a combination of ‘honest and compassionate’ (Brooke) and ‘very person centred’ (Elenore) was expressed. ‘A strong bond of trust’ Brooke mentioned, ‘I felt like I trusted her when she would challenge me –’ Belle similarly stated, ‘– I trusted her, and I think that I made lots of decisions when I was with her, and I felt like my life was changing’. Knowledge of premenstrual distress and validation of the client/patient’s experiences were also detailed as important and ‘relieving’ for participants. Belle described a family planning GP ‘who was quite validating… The GP there knew of PMDD… She actually did have a wealth of information about it, and we started to explore different, other medical options for PMDD’. For Brooke, hearing a healthcare professional acknowledge and explain PMDD ‘just felt this, like, ‘Wow, there’s an answer. There’re things that we can work on to make this easier’’. Options for support from healthcare professionals was appreciated after the provider takes a comprehensive approach; ‘an approach that considers my whole life and environment and my body’ (survey participant). After a long search, Ash described why her current GP is helpful:
[My GP was like] ‘Let’s go get all the tests’. I’d never had that treatment from a GP. I’ve seen a few different GPs and specialists… No one’s ever asked me for any of that information or wanted to seek that out… That sort of pharmaceutical push has been my experience as opposed to like, ‘Ok, let’s actually have a look at your body and like see what’s going on and make sure it’s PMDD’.… [This approach] is the least isolating.
From a psychotherapy perspective, an appreciation of moving away from purely talk-based therapies was common, describing talk-based therapies as ‘limiting’ (survey participant) in comparison with ‘life changing’ (survey participant) experiences using embodiment and body-based techniques. For Elenor, focusing on embodiment was instrumental in her therapy journey:
I could see the real change in me focusing on my body… A lot of [therapy] is like, ‘Ok, let’s go into the thoughts. Let’s go into cognition’. and as soon as I went into the body, I was like, ‘Ah! This is where the body keeps the score. This is where everything is kind of sitting’. and that’s where I really felt that shift happen in my own treatment… A big part of my healing has been in embodiment.
Psychotherapy modalities commonly appreciated were cognitive behaviour therapy (CBT) and internal family systems therapy (IFS). For one survey participant, ‘I’ve been surprised by the clarity that has come from [CBT]. I’ve been shown behaviours and coping mechanisms that I didn’t realise I was displaying’. Belle appreciated the practicality of particular CBT exercises completed in session and at home: ‘I can apply that in a practical way and things were less confusing – it was sort of more out of my head’, along with Maya: ‘there were a few little tricks I learned which I felt helped ground me’. IFS was ‘loved!!’ by some survey participants, being described as ‘incredible’. Three survey participants had experienced IFS, each appreciating the ‘accepting’ and ‘safe’ approach of the therapy. ‘You bring out really affected parts of yourself and they can feel very consuming. So then being like, ‘Ok, well, that is not my whole self. That is a part of myself’’ (Simone). ‘You still are able to somehow integrate those parts. They grew up protecting that person’ (Rae). For Elenor, IFS was ‘so eye opening’ and useful for the complex nature of PMD; ‘people are just so complex and there’s so many different layers’.
Most participants described a reductionist approach; a focus only on treating a symptom or suggesting a single option for support without considering broader factors, such as emotional, social or environmental influences. Being offered medication as the only form of support was common: ‘[the GP was] forcing the drugs’ (Maya); ‘she just gave me another pill to try, and I don’t want to try it… it’s just more pills that I don’t want to take’ (Jade); ‘depression tablets when you’re not depressed’ (survey participant); or being told to ‘just go on the pill, just go on the pill, just go in the pill’ (Ash). For pain management, ‘nothing was resolved in terms of a solution that was anything but Nurofen’ (Liz). Many participants assumed a sense of carelessness from their healthcare provider in terms of medication, ‘chuck her on this antidepressant and say what happens’ (Ash) or ‘you try this different pill, and then you can tell me in three months if it feels any better’ (Belle), but ‘I can’t do another month of this’ (Jade); ‘[my GP] just put me on different pills, different SSRIs, but symptoms persisted and I never felt like she was really ready to go into a bit more with me’ (Elenor). Brooke summarised:
I felt like there wasn’t enough holistic approaches that were presented to me during all these times when I went to go seek help for these things. I noticed that doctors and specialists would so often lean on medication and take a pill or have contraception… My only options [were] to go on the pill or to go on the Mirena. It just felt shit.
The unwanted ‘whole of list of side-effects’ (Sarah) from medications were also discussed, where participants experienced ‘gross’ (Belle) and ‘weird’ (Maya) ‘side-effects of hell’ (Jade). Using the oral contraceptive pill, four interview participants stated they experienced suicidality and suicidal thoughts for the first time. Healthcare providers’ suggestions for medications often made participants feel as if they were a ‘guinea pig’ (Ash) with limited benefit: ‘trial and error…I was going through multiple rounds of antidepressants trying to find the right fit and it wasn’t working’, summed Ash.
Participants described unhelpful psychotherapy sessions as those that involved talk-based therapy only, that lacked ‘depth’ (Sarah), and that were not considerate to the unique presentation of PMD. CBT in particular was mentioned in the survey as ‘horrible’, ‘unsatisfactory’ and ‘incredibly invalidating’, with comments surrounding how CBT was ‘ineffective’ for PMDD and ‘didn’t treat the underlying cause’ (survey participant). ‘Limiting’, ‘useless’ and ‘[going] in circles’ were how talk-based therapies were described in the survey responses, providing ‘emotional support at the time, but I am unsure how much they have helped me change within myself’ (survey participant). A sense of purposelessness to sessions was common: ‘General talking, which never goes deep enough. No one can understand the severity and intensity of my experience’ and ‘[online talk-therapy] did not get deep enough, felt like it was band aid solutions’ were two survey responses. ‘It didn’t feel like therapy, it just felt like a kind of venting session’ (Amara); ‘it didn’t work, it just felt like chatting to a friend that didn’t respond’ (Maya); ‘I left with a feeling of like, ‘What did I actually do?’’ (Val).
In general, lack of healthcare support that is tailored to PMD was expressed: ‘non-existent really’ (Maya); ‘I was trying to look for people who are specialists… I just couldn’t find it’ (Rae). When finding professional healthcare support, participants were met with providers who did not have awareness of PMD. ‘Unfortunately, there are many, many practitioners that don’t know what [PMDD] is’ (Val); ‘it feels like no one really knows’ (Ash); ‘I remember my husband sitting next to me and he was explaining to the doctor what PMDD was because they’d never heard of it before’ (Maya). Experiences with uneducated providers were described with disappointment: ‘it does feel a bit isolating in a way where your doctor’s not sure… then you still have to move through your cycle without any help… a lonely experience to have to go through’ (Ash); ‘you’re left on your own really, to get through it’ (Liz); ‘it’s been a very isolating thing dealing with this’ (Maya). For Belle:
[My GP] wasn’t familiar with PMDD. She didn’t really seek to find out more information or refer me on to anybody, which, now, with retrospect, looking back, that was an opportunity there where I could have been passed on to somebody who knew a bit more.
Lack of awareness from healthcare providers then led to significant delays in diagnosis for PMD and appropriate support options: ‘It’s been a very, I guess, slow process into that stuff’ (Elenor), ‘really late’ (Brooke), ‘it took a long time… and that was from tracking for months and months’ (Ash).
Disappointing experiences with uneducated therapists were also common. ‘I do have [a] psychologist… but he’s a man, and sometimes when I would bring up certain things it doesn’t click with him. I think that he isn’t aware’ stated Rae. Similarly, Jade’s therapy experience ‘didn’t really help, but it wasn’t someone who knew a lot about it’, along with Val’s: ‘I think not many psychologists understand what PMDD is… no clue’. For Ash, she did not believe her psychologist was ‘‘getting it’… so I don’t think I’m gonna get much out of this’.
Participants described being dismissed by their healthcare provider as the most unhelpful experience. Many participants often had to trial multiple different healthcare providers before finding one who was both knowledgeable and validating of PMD. ‘They’re good at telling, not listening’, a survey participant describes their experience with a healthcare provider. Other participants described experiences of being invalidated by GPs and medical specialists: ‘I remember my one doctor was just like, ‘Oh, it’s just something that happens with women and it’s PMS, so just run more’’ (Sarah), ‘‘Oh, those fancy things that people invent nowadays’ the GP said’ (Val), ‘I didn’t go back to her, even though she was supposed to be a good women’s health specialist’ (Sarah). Despite being told to book a follow-up session after tracking symptoms for multiple months, participants explained how this process seemed futile: ‘My GP didn’t really care… she certainly didn’t scroll through my app to look at information I had collected about myself’ (Belle).
Engaging in psychotherapy, limitations to Sarah’s experience were because the therapy was not tailored to cyclical nature of PMD, where instead, advice felt patronising:
[Being told to] do yoga and stuff like that and try meditating and ground yourself, and the whole ‘grounding one, two, three’ thing… I just kind of walked away and thought when you’re in states of feeling a bit unstable, you’re not as rational, and so those tools [are] not as implemented as easily.
Maya describes a similar instance of healthcare providers not considering the severity of her PMDD experiences, often conflating PMDD to PMS:
I know people say mindfulness, but when you’re having an episode, mindfulness sometimes doesn’t help… ‘take a deep breath’? I think we all know when you’re in that moment, taking a deep breath may not really get you far. Don’t tell me that. It’s not gonna happen.
Discussion
The aim of the study was to explore individuals’ experiences of Australian healthcare support for PMD from a qualitative perspective, with the view of offering insight into how current healthcare options support those affected, and contributing to a more person-centred and responsive approach. The findings reveal the dual nature of Australian health care for PMD, encompassing both supportive and deficient aspects. Helpful support facilitated recognition and validation of participants’ experiences, individualised care, and fostered participants’ trust in their healthcare providers. Unhelpful support led to significant delays in diagnosis and appropriate care, and left participants feeling isolated in their support due to having to manage their experiences alone.
Alignment with prior research
The present study highlights that unsatisfactory professional support leads to high levels of self-advocacy in the absence of systemic support and poor quality of life, as seen prior (Rapkin and Winer 2009; Osborn et al. 2020; Chan et al. 2023; Buys 2024). Participants felt that there was no other option but to take on the role as their own healthcare provider; either finding their own avenues of support, advocating for their own healthcare needs or managing with maladaptive support strategies (Labots-Vogelesang et al. 2023; Buys 2024). Ussher and Perz’s (2013) study that views individuals with PMD not as passive sufferers, but rather ‘expert copers’ is reflected here, however, driven by lack of adequate healthcare options. Experiences of Australian healthcare support for PMD align with those reported by participants globally (Osborn et al. 2020; Hantsoo et al. 2022; Chan et al. 2023; Labots-Vogelesang et al. 2023; Funnell et al. 2024a, 2024b; Habib et al. 2025). Accounts of being invalidated and dismissed by healthcare providers, and seeing a healthcare provider who has no awareness of PMDD specifically were shared among all studies (Osborn et al. 2020; Chan et al. 2023; Habib et al. 2025). In particular, a participant in Habib et al.’s (2025) study describes an experience similar to that of Maya’s in the current study, where treatment was only provided when the participant’s husband accompanied her to her doctor’s appointment. This participant’s ‘own knowledge of her body, and the information she had researched, was ignored until it was corroborated by another male’ (Habib et al. 2025). Positions on medication were also shared with participants from prior research (Byles et al. 1997; Osborn et al. 2020; Chan et al. 2023; Brown et al. 2024; Funnell et al. 2024b; Habib et al. 2025). As in Funnell et al.’s (2024b) study, being only offered medication – specifically the hormonal contraceptive pill – was deemed inadequate, with many participants in the present study recounting suicidal ideation after agreeing to take the oral contraceptive pill; a risk well established (Perez-Lopez et al. 2020).
Novel findings
Although prior studies investigated healthcare experiences broadly (Osborn et al. 2020; Hantsoo et al. 2022; Chan et al. 2023; Labots-Vogelesang et al. 2023; Funnell et al. 2024a, 2024b; Habib et al. 2025), the present study garnered focus on experiences of psychotherapy. CBT is the most studied psychotherapy modality for PMD, with varying results (Busse et al. 2008; Lustyk et al. 2009; Kleinstauber et al. 2012; Kancheva Landolt and Ivanov 2021; Carlini et al. 2022). Within the present study, CBT received a mixed review of being both helpful to some participants and invalidating to others. IFS and embodiment practices emerged as valuable modalities for supporting PMD, despite being under-researched. Given the common experience of a ‘split self’ or ‘Dr Jekyll and Mr Hyde’ (Chrisler and Caplan 2002) dynamic in relation to PMD (Loshny 2004; Ussher 2004a, 2008, Ryan 2021; Labots-Vogelesang et al. 2023; Buys 2024), it is understandable that IFS would be appreciated by participants, due to its emphasis on understanding, integrating and being compassionate towards the different parts of the self. Additionally, as the body is central in the experience of PMD (Ussher 2004b; Ussher and Perz 2020a), psychotherapy options that involve the body were appreciated. However, Ussher and Perz (2020b) found that the body has a ‘peripheral presence’ within common psychological support options, as cognition-based approaches dominate. IFS, too, has not yet been researched as a psychotherapy option for PMD. Tailoring psychotherapy to the specific experiences of PMD has, however, been previously suggested (Lustyk et al. 2009; Kleinstauber et al. 2012; Janda et al. 2015).
Recommendations in the Australian context
Comprehensive health care refers to integrated, person-centred healthcare support that attends to the diverse and intersecting needs of individuals (Burdett and Inman 2022; Smith et al. 2022). Although helpful experiences of Australian healthcare support for PMD were recounted, the unhelpful experiences described by most participants are concerning. For comprehensive health care for PMD to be realised in Australia, there is a critical need for provider education and expanded access to diverse, effective, and accepted treatment options. This paper makes three key recommendations. First, a nationally endorsed clinical guideline for the diagnosis and management of PMD should be developed by a multidisciplinary specialist medical colleges and peak professional bodies in Australia, in collaboration with those who have lived experience of PMD.
Second, the current study suggests that most healthcare support for PMD is provided through the individual’s GP and psychological support. As the client/patient’s initial point of contact, these findings call for greater education for GPs about what PMD is – particularly PMDD – and options for support outside of medication. Where awareness is limited, the GP should be responsible for guiding the client/patient towards other more educated healthcare providers, so that the burden of trialling multiple different providers is alleviated from the client/patient.
Third, psychotherapy options should move beyond talk-based therapy CBT alone to encompass emerging modalities, such as IFS and embodiment practices, acknowledging the specific experiences of PMD rather than applying a one-size-fits all approach. In the current Australian model, psychological support for PMD is primarily accessed through the Better Access initiative, which offers 10 Medicare-subsidised sessions with psychologists and mental health social workers. Notably, psychotherapists and counsellors are not included in this scheme, despite offering forms of support that many participants in this study found meaningful, particularly creative and integrative modalities. Barriers to accessing psychotherapeutic support that is experienced as validating and effective include not only the lack of Medicare rebates for psychotherapy sessions, but also limited awareness among GPs to recommend psychotherapists as an option alongside psychologists. National standards for psychotherapists are not yet in place, although development is currently underway.
Finally, all healthcare providers should demonstrate client/patient-centred care by validating the client/patient’s experience. These changes are essential for ensuring that individuals experiencing PMD receive appropriate, timely and compassionate care.
Study limitations
There are limitations to the study. The survey was largely directed at participants who lived in Sydney and surrounds, potentially neglecting broad Australian experiences of health care for PMD. As a qualitative exploratory study, this research prioritised depth of insight over generalisability. Although the sample provided detailed accounts of individual experiences, the findings are not intended to represent the broader population of people experiencing PMD.
Conclusion
This study illuminates the diverse and often polarised experiences individuals have when seeking healthcare support for PMD in Australia. Although some participants encountered validating and holistic support, most described care that was superficial, uninformed or dismissive. To meet the complex needs of those experiencing PMD, national clinical guidelines, enhanced GP education and broader access to diverse psychotherapy options are needed. Meaningful care must be person-centred, trauma-informed, responsive and grounded in the lived realities of those it aims to support.
Data availability
The datasets generated and/or analysed during the current study are not publicly available due to the ongoing nature of this research and associated ethical restrictions, but are available from the corresponding author on reasonable request.
Declaration of funding
The author received no financial support for the research, authorship and/or publication of this article.
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