Navigating treatment options: a qualitative study exploring Australian women’s decision-making experiences and satisfaction with treatment of heavy menstrual bleeding

This study is part of a series of studies (the Heavy Menstrual Bleeding Decision Aid project) that aims to understand the reasons for the high variation in the use of HMB treatments across Australia and to improve women’s treatment-seeking experiences. The study has been conducted in accordance with the Consolidated Criteria for Reporting Qualitative Studies (COREQ) and the Guidance for Reporting Involvement of Patients and Public (GRIPP2) checklists (supplementary Tables 1 and 2 ) [ 18 , 19 ]. A call for expressions of interest to join the Consumer Advisory Group (CAG), along with a plain English overview of the study, was circulated in March 2023 via the monthly newsletter of each Australian state’s health consumer peak. From the 15 expressions of interest received, six lay-community members were selected to maximise the diversity in lived experience with HMB, geographic location and cultural background. These members were not affiliated with health services in a professional capacity. One member did have a research background in a non-health field. All members brought valuable insights from their own experiences navigating HMB treatment. CAG provided advice on each stage of the study’s design and implementation, including: (1) reviewing, pilot-testing and providing feedback on the interview guide, (2) informing the recruitment strategy; and (3) reviewing the summary of findings to ensure interpretations reflected lived experiences. Two CAG members participated in pilot interviews and provided interviewer feedback to JR. With their consent, and as they met the eligibility criteria, their interviews were included in the final dataset. CAG members were invited to join the writing team for this paper, and one member (JC) is an author. All CAG members were reimbursed for their time and lived-experience contributions in accordance with consumer organisation recommendations. In this study, it was important to acknowledge the potential influences of the researchers’ expectations, assumptions, and reactions to the data [ 20 , 21 ]. The research team included a consumer representative (JC), and researchers with expertise in qualitative methods, specifically in the context of women’s health research (BJ, MR, TC) and a GP with an interest in women’s health (JD). All members of the team identify as women and feminists, and some have lived experiences with HMB. None of our team came from ethnic backgrounds where talking about menstruation was considered taboo. Throughout the research process, we engaged in regular individual and group reflection to surface assumptions and test emerging ideas and decisions with our multidisciplinary team. The first author and interviewer (JR) was a female honours student with a personal and academic interest in women’s health. Her experiences and familiarity with the topic of HMB may have shaped her questioning and interactions with participants. As this was JR’s first time conducting qualitative interviews, the first interview was conducted with a more senior researcher (BJ) to model interviewing techniques. JR also piloted the interview guide with two members of the CAG, receiving feedback on her interviewing style as well as the clarity and flow of the line of questioning. The recordings of two additional interviews were observed by another senior researcher (TC) who provided further feedback on JR’s approach. This process provided JR with structured support while allowing her to develop confidence and skills as the primary interviewer. Engaging in reflexivity allowed us to consciously address potential biases, which was key to preserving the authenticity and rigour of the study’s conclusions [ 21 ]. Participants were women aged 35 to 55 residing in Australia who had experienced HMB and had used or attempted to use at least one of the following treatments in the past two years: the combined oral contraceptive pill, Lng-IUD, tranexamic acid, endometrial ablation, uterine artery embolisation, myomectomy and/or hysterectomy. The participants were recruited into this study via paid social media advertising on the Centre for Research on Women and Non-Communicable Disease Facebook™ and Instagram™ pages during July 2024. Those interested were invited to complete an online eligibility survey via Qualtrics. Participants who met the eligibility criteria for our study were further directed to demographic and contact information questions. Purposive sampling was used to select participants from this pool to maximise diversity in treatment experiences, geographic location (based on the Modified Monash Model). Further diversity was sought in relation to whether participants identified as living with a disability or chronic condition, as culturally and linguistically diverse background and/or as being part of the LGBTIQ + community. This approach aimed to ensure a broad range of perspectives on treatment decision-making and satisfaction with care. We anticipated recruiting 24 participants to the study, with the number of participants based on previous similar studies [ 12 , 13 ]. We aimed to ensure a comprehensive understanding of the factors influencing their treatment decision-making and satisfaction with the care provided. Participants received a gift card valued at A$40 for participating in the interview. As well as the demographic information described above, the online eligibility survey collected information on age, years with HMB, if referral to a gynaecologist had occurred and the cause of HMB if known. Interested people were also asked about the treatments they had considered, tried and/or were not interested in trying. Participants’ postcodes were used to establish rurality and access to health services, using the Modified Monash (MM) classification [ 22 ]. A semi-structured interview guide was designed by a multidisciplinary research team, drawing on existing literature about HMB treatment pathways, treatment decision-making and care experiences. The guide was then reviewed and piloted with the help of the study’s CAG, who provided clarity on the clarity, relevance and sensitivity of the questions. The final interview guide covered (1) experiences of treatment decision-making, (2) the quality of the resources and information provided, and (3) perceptions of SDM (see Supplementary Materials for the Interview Guide). All interviews were conducted over Zoom™ between June and August 2024. Online interviews allowed for flexibility in facilitating participation from women across Australia. Interviews were conducted by JR, under the guidance of BJ and TC. All participants provided written informed consent before the interview. All interviews were audio recorded, and transcribed verbatim by a professional transcription company. A random sample (10%) of the transcripts was checked against the audio recordings to confirm accuracy. Identifying information (such as names and places) was replaced with pseudonyms to ensure anonymity. Demographic information was collected in the initial survey and recorded in a spreadsheet identified by participant number. Framework analysis using a phenomenological approach was used to understand each participant’s subjective perspectives and experiences [ 23 ]. This approach enabled an in-depth understanding of how women perceived and made sense of their treatment-seeking journeys [ 24 ]. By focusing on participants’ narratives, the analysis sought to capture the complexity and uniqueness of their individual experiences while identifying shared themes across the data. Framework analysis involves a matrix-based approach, where each column represents a theme and each row contains a participant, allowing comparison across themes and participants’ experiences [ 23 – 25 ]. It was considered suitable for our analysis as it allowed for comparisons within and between developed themes. The matrix format was useful for data management and facilitated a structured overview of summarised data. The method involved a step-by-step approach with multiple researchers. The interviewer (JR) familiarised herself with the interview transcripts after transcription of the initial 17 interviews. Four researchers (BJ, JD, TC and MR) were given three transcripts each to review and identify initial topics and themes. These members of the research team discussed these topics in a video conference, combining them to establish a coding framework. This stage included forming thematic maps to visualise initial topics and themes against the study’s aims (See Supplementary Materials for Thematic Maps). JR then coded all the transcripts using the framework, including the final interviews. Adaptations were made to the framework as necessary through continuous discussion with the research team, although no new themes emerged in the final seven interviews. The transcript data were organised into this matrix, using Excel™, which involved summarising the transcript data by theme [ 24 , 25 ]. To ensure consistency in applying the coding framework, a subset of the transcripts (10%) were double-coded by a second researcher (MR). Any disagreements in coding were resolved through discussion and consensus among the research team. Prominent themes were then synthesised and discussed with the research team to develop the interpretation of the results. The completed manuscript was reviewed by members of the CAG, to ensure that the interpretations of data were reflective of women’s experiences of HMB. This study received ethical approval from the University of Queensland Human Research Ethics Committee (Project number: 2024/ HE000743 ).

Seventy women expressed interest in participating in the study, and forty-eight women were subsequently contacted. Out of these, twenty-four women, aged 39 to 50, were interviewed. Interviews lasted between 20 and 60 min. Seventeen participants resided in major cities and urban areas (MM 1), and the remaining seven resided in regional or remote locations (MM 2+), including regional, outer regional, remote and very remote areas. The duration of symptoms varied widely, with many experiencing HMB for more than ten years ( n  = 10). Commonly diagnosed causes of HMB were fibroids (reported by nearly half of the participants), endometriosis and adenomyosis, with some participants having multiple diagnoses. Almost half of the women interviewed had not received a diagnosis of an underlying condition that caused their HMB. Nearly all had sought referrals to a gynaecologist and considered various treatment options. See Table  1 for a complete overview of participants’ characteristics. Table 1 Participant characteristics ( n  = 24) Characteristic Number of participants (%) Age range (at interview) 35–39 1 ( 4.2) 40–44 11 (45.8) 45–49 10 (41.7) 50–55 2 ( 8.3) Diversity Person with Disability or Chronic Condition 5 (20.8) Culturally or Linguistically Diverse 5 (20.8) LGBTIQ+ 1 ( 4.2) Location (Modified Monash Model Classification) Urban (MM 1) 16 (66.7) Regional/Remote (MM 2+) 8 (33.3) Duration of HMB symptoms  10 years 10 (41.7) Cause of HMB* Not diagnosed 10 (41.7) Fibroids 7 (29.2) Endometriosis 5 (20.8) Gynaecologist referral Yes 20 (83.3) No 4 (16.7) Treatments considered Combined Oral Contraceptive 20 (83.3) Tranexamic acid 14 (58.3) LNG-IUD 23 (95.8) Myomectomy 1 ( 4.2) Uterine Artery Embolisation 3 (12.5) Endometrial Ablation 12 (50.0) Hysterectomy 9 (37.5) Treatments used Combined Oral Contraceptive 16 (66.7) Tranexamic acid 14 (58.3) LNG-IUD 10 (41.7) Myomectomy 0 ( 0.0) Uterine Artery Embolisation 0 ( 0.0) Endometrial Ablation 5 (20.8) Hysterectomy 4 (16.7) LGBTIQ+: Lesbian, Gay, Bisexual, Transgender, Intersex and Queer MM: Remoteness as measured on the scale of Modified Monash categories HMB: Heavy Menstrual Bleeding Lng-IUD: Levonorgestrel-releasing intrauterine device * Some participants had multiple diagnosed causes of HMB Participant characteristics ( n  = 24) LGBTIQ+: Lesbian, Gay, Bisexual, Transgender, Intersex and Queer MM: Remoteness as measured on the scale of Modified Monash categories HMB: Heavy Menstrual Bleeding Lng-IUD: Levonorgestrel-releasing intrauterine device * Some participants had multiple diagnosed causes of HMB Five main themes and fifteen sub-themes were developed based on the analysis of interview transcripts. Words have been omitted from (denoted by…) or inserted into (denoted by square brackets) quotations illustrating each theme where needed for clarity or brevity. Reported speech is denoted by “inverted commas” . Many participants did not initially seek medical treatment for their HMB until they perceived the severity of their symptoms as unmanageable, often leading to a “breaking point”. A common experience was minimising their symptoms until the severity of the condition disrupted their daily lives to an intolerable extent. I’d never had any education around heavy periods , I just thought it was part of being a woman… I just thought I was just the unlucky one and that’s just the card I was dealt. The reason I went to the GP is because my period was so heavy , it was going for a month and a severely , severely heavy haemorrhaging to the point [that] I couldn’t do anything. (Participant 10, age 45–49, Regional/Remote). I’d never had any education around heavy periods , I just thought it was part of being a woman… I just thought I was just the unlucky one and that’s just the card I was dealt. The reason I went to the GP is because my period was so heavy , it was going for a month and a severely , severely heavy haemorrhaging to the point [that] I couldn’t do anything. (Participant 10, age 45–49, Regional/Remote). Women reported making significant efforts to adapt their lives around their symptoms, such that they believed that they were managing sufficiently. For many participants, the trigger to seek help did not register until their HMB impacted their ability to work. But those impacts didn’t trigger me to think oh , I need to go and see the GP and get it checked out. It was only when it was affecting work and I think that’s something that did strike me at the time , how I value or how I put more priority on the impact on work than on my own wellbeing. (Participant 20, age 40–44, Urban). But those impacts didn’t trigger me to think oh , I need to go and see the GP and get it checked out. It was only when it was affecting work and I think that’s something that did strike me at the time , how I value or how I put more priority on the impact on work than on my own wellbeing. (Participant 20, age 40–44, Urban). Women noted that experiencing symptoms of iron deficiency marked a turning point in taking their HMB symptoms seriously. Some women also noted that despite seeking medical help for HMB, they perceived that their concerns were not taken seriously until their iron levels were low, causing clinically significant problems. I had discussed it with doctors over the years… Most of the time it was pretty well just dismissed as , yeah , just normal. [Last year] it was finally detected that I had low iron. So , we pushed it from there. (Participant 14, age 40–44, Urban). I had discussed it with doctors over the years… Most of the time it was pretty well just dismissed as , yeah , just normal. [Last year] it was finally detected that I had low iron. So , we pushed it from there. (Participant 14, age 40–44, Urban). Some participants perceived surgical procedures, such as hysterectomy, as an unnecessary risk, preferring to continue managing their symptoms until menopause. I don’t want other issues to come because of something that I’ve been able to manage. In my opinion , I was managing it. Even though I [technically] wasn’t because my body was crumbling. Yeah , I thought well , it’s heavy periods. How much longer can they really go for? I’m getting older , right? (Participant 3, age 45–49, Urban). I don’t want other issues to come because of something that I’ve been able to manage. In my opinion , I was managing it. Even though I [technically] wasn’t because my body was crumbling. Yeah , I thought well , it’s heavy periods. How much longer can they really go for? I’m getting older , right? (Participant 3, age 45–49, Urban). Participants described the difficulties in accessing meaningful care for HMB. Many participants had to navigate multiple consultations and referrals, only to encounter delays and inadequate support. I deal with a lot of difficult things but getting a GP to actually refer me and help me address My problem in a meaningful way was incredibly difficult and took me years and multiple doctors… I just wonder how many people just don’t ever get any help because it was so difficult and so draining. (Participant 9, age 40–44, Regional/Remote). I deal with a lot of difficult things but getting a GP to actually refer me and help me address My problem in a meaningful way was incredibly difficult and took me years and multiple doctors… I just wonder how many people just don’t ever get any help because it was so difficult and so draining. (Participant 9, age 40–44, Regional/Remote). Participants emphasised the need to be strong self-advocates to ensure that their symptoms were taken seriously and investigated thoroughly by clinicians. However, this was often accompanied by feelings of self-doubt, fearing that they might be perceived as complaining. I feel like if I was to really push it and really say this is how it’s affecting me , and to me , this is a really big deal. [I] still don’t know whether I’d get the answers [or] whether I’d be offered more treatment options , but I feel I’d be a whinger. (Participant 12, age 45–49, Regional/Remote). I feel like if I was to really push it and really say this is how it’s affecting me , and to me , this is a really big deal. [I] still don’t know whether I’d get the answers [or] whether I’d be offered more treatment options , but I feel I’d be a whinger. (Participant 12, age 45–49, Regional/Remote). Several women noted a misalignment between their personal experiences of heavy bleeding and what clinicians defined as “heavy”. This contributed to women feeling inadequately supported in their efforts to find relief. I had always brought [HMB] up. But I think for the GPs , they kind of have this , “How many . pads would you soak in this many hours”… I think they have this textbook approach of what’s . normal”. (Participant 11, age 45–49, Urban). I had always brought [HMB] up. But I think for the GPs , they kind of have this , “How many . pads would you soak in this many hours”… I think they have this textbook approach of what’s . normal”. (Participant 11, age 45–49, Urban). Participants also reported having their symptoms dismissed entirely. Women were frequently told that their experiences were normal for women their age. Some participants reported clinicians dismissing their HMB entirely and shifting the focus to their mental state. I spoke to my GP and she said that [the specialist] communicated that I’d been upset in the . office and that I probably needed some support in an area of counselling or psychiatrist , to . deal with what was going on. No mention of endometriosis or anything like that. (Participant 10, age 45–49, Regional/Remote). I spoke to my GP and she said that [the specialist] communicated that I’d been upset in the . office and that I probably needed some support in an area of counselling or psychiatrist , to . deal with what was going on. No mention of endometriosis or anything like that. (Participant 10, age 45–49, Regional/Remote). Participants identified practical barriers to accessing HMB care, with many noting that the limited time allocated for consultations impeded their ability to discuss their symptoms and explore their options for treatment. I really wanted to talk about the potential risks and so on , and they were saying , “Well , we don’t have time in this appointment to spend any more time talking about it”. I feel like I got bundled out the door a little bit , and that annoyed me. (Participant 13, age 50–55, Urban). I really wanted to talk about the potential risks and so on , and they were saying , “Well , we don’t have time in this appointment to spend any more time talking about it”. I feel like I got bundled out the door a little bit , and that annoyed me. (Participant 13, age 50–55, Urban). Additionally, participants identified the focus of specialist practice as a barrier to receiving relevant care. Some participants reflected on the difficulty in finding gynaecologists who could address the health issues relevant to the pre and perimenopausal stages of life. It is a little bit of a challenge finding gynaecologists who aren’t heavily focused on conception and pregnancy… if you don’t want to have babies, they’re not quite sure what to do with you (Participant 15, age 40–44, Urban). It is a little bit of a challenge finding gynaecologists who aren’t heavily focused on conception and pregnancy… if you don’t want to have babies, they’re not quite sure what to do with you (Participant 15, age 40–44, Urban). When participants could find clinicians with an interest in HMB and/or pre/perimenopausal health, cost and availability were barriers. There doesn’t appear to be much in the way of public healthcare for non-reproductive women’s health. I could probably try and get on a public hospital waiting list but I’m pretty sure I’d be experiencing menopause by the time I got through a waiting list. (Participant 6, age 45–49, Urban). There doesn’t appear to be much in the way of public healthcare for non-reproductive women’s health. I could probably try and get on a public hospital waiting list but I’m pretty sure I’d be experiencing menopause by the time I got through a waiting list. (Participant 6, age 45–49, Urban). For participants in non-metropolitan areas, access to specialised care was frequently identified as a barrier. Some noted that they would travel hours to access specialist appointments, endure a lengthy wait time to receive specialist care or rely on the chance that locums with an interest in women’s health would be assigned to their area. Additionally, participants highlighted concerns about confidentiality in small-town settings, noting that the close-knit nature of their communities deterred them from discussing their HMB. I’m from a relatively small town everybody knows everyone… So I never brought it up with them. When - with the locums , like I said , I was able to get one that was really interested and really listening to me. So I just pushed it from there , whereas in the past I wouldn’t push it. I just let it go. (Participant 12, age 45–49, Regional/Remote). I’m from a relatively small town everybody knows everyone… So I never brought it up with them. When - with the locums , like I said , I was able to get one that was really interested and really listening to me. So I just pushed it from there , whereas in the past I wouldn’t push it. I just let it go. (Participant 12, age 45–49, Regional/Remote). Participants reflected on how empathetic and patient-centred care significantly improved their treatment experiences. When clinicians took the time to understand them beyond their symptoms and saw them “as a whole person” (Participant 9), participants reported feeling validated, acknowledged and empowered in their treatment journeys. I know that I do remember seeing the letter of referral that she’d written to the gynaecologist that mentioned , yeah , the heavy bleeding. But particularly the fact that I was losing a couple of days a month to just not really being able to do very much , that was the impact I was particularly worried about… Or that that was really what I was seeking help for. (Participant 15, age 40–44, Urban). I know that I do remember seeing the letter of referral that she’d written to the gynaecologist that mentioned , yeah , the heavy bleeding. But particularly the fact that I was losing a couple of days a month to just not really being able to do very much , that was the impact I was particularly worried about… Or that that was really what I was seeking help for. (Participant 15, age 40–44, Urban). Additionally, a few participants noted that feeling heard and respected by their clinicians helped them rebuild trust in the healthcare system, especially after enduring dismissive or inadequate care in the past. Just being listened to was really nice… By the time I got help , I was so physically run down that it was really , really hard…You feel like it’s your fault almost. It was just so nice to go and see the gynaecologist and he said “Yep , you have absolutely got a problem , you should have been here sooner”. So that was validating for the frustration that you’d had for so long and we’re going to help , we’re going to do something about it. So , I appreciated that very much. (Participant 8, age 45–49, Regional/Remote). Just being listened to was really nice… By the time I got help , I was so physically run down that it was really , really hard…You feel like it’s your fault almost. It was just so nice to go and see the gynaecologist and he said “Yep , you have absolutely got a problem , you should have been here sooner”. So that was validating for the frustration that you’d had for so long and we’re going to help , we’re going to do something about it. So , I appreciated that very much. (Participant 8, age 45–49, Regional/Remote). Several participants noted that past negative experiences of treatment contributed to hesitancy in trying certain options. For most participants, past experiences with the combined oral contraceptive pill drove their hesitation regarding further hormonal treatments. That scares me because that’s one of those things that stays in there , hormones. Because of my experience with the pill , hormones always make my rollercoaster a lot more rollercoastery , very high highs , very low lows. It was not nice. I was afraid of having those hormones on a daily basis in my arm. (Participant 3, age 45–49, Urban). That scares me because that’s one of those things that stays in there , hormones. Because of my experience with the pill , hormones always make my rollercoaster a lot more rollercoastery , very high highs , very low lows. It was not nice. I was afraid of having those hormones on a daily basis in my arm. (Participant 3, age 45–49, Urban). For a few participants, the hesitation was driven by past traumatic experiences of gynaecological care. I’d had some bad experiences with gynos in the past. I had a cone biopsy done by a female gyno. She really didn’t give me any warning about what it would entail. The pain was absolutely horrific. No pain relief. No anaesthetic. Just on the bench in her office , so it was a pretty traumatising experience. I think as well , for me , the idea of anyone going in there to insert a Mirena , or do anything , just wasn’t for me. (Participant 4, age 35–39, Regional/Remote). I’d had some bad experiences with gynos in the past. I had a cone biopsy done by a female gyno. She really didn’t give me any warning about what it would entail. The pain was absolutely horrific. No pain relief. No anaesthetic. Just on the bench in her office , so it was a pretty traumatising experience. I think as well , for me , the idea of anyone going in there to insert a Mirena , or do anything , just wasn’t for me. (Participant 4, age 35–39, Regional/Remote). Many participants expressed frustration at what they perceived as limited or superficial treatment options for HMB. Across all participants, there was a wide variation in the types of treatment options discussed with clinicians, but many felt that options were limited as they primarily revolved around hormonal therapies or surgical interventions. I was really frustrated that the GPs just– all they could offer was medication or IUD. Neither of those appealed to me… [and] then gynaes , they’re surgeons ultimately , that’s often going to be what their solution is. (Participant 9, age 40–44, Regional/Remote). “Let’s get you on a script , let’s put a Band-Aid over it , let’s just put you on the pill and just cover up endometriosis. Hopefully , the pain won’t be there , but we won’t investigate what’s going on when the endometriosis could be growing or your periods are just getting really heavy. Let’s just put you on the pill”… there was a really heavy reluctance to do anything , to refer anything. The best solution was iron tablets , maybe go back on the pill. That was maybe all the things that were discussed. So , it would have been nice to have open access to a broader range of options earlier and faster. (Participant 10, age 45–49, Regional/Remote). I was really frustrated that the GPs just– all they could offer was medication or IUD. Neither of those appealed to me… [and] then gynaes , they’re surgeons ultimately , that’s often going to be what their solution is. (Participant 9, age 40–44, Regional/Remote). “Let’s get you on a script , let’s put a Band-Aid over it , let’s just put you on the pill and just cover up endometriosis. Hopefully , the pain won’t be there , but we won’t investigate what’s going on when the endometriosis could be growing or your periods are just getting really heavy. Let’s just put you on the pill”… there was a really heavy reluctance to do anything , to refer anything. The best solution was iron tablets , maybe go back on the pill. That was maybe all the things that were discussed. So , it would have been nice to have open access to a broader range of options earlier and faster. (Participant 10, age 45–49, Regional/Remote). Some women reflected on the expectation that they must exhaust all treatment options, starting with the least invasive option first. This approach often felt frustrating and disempowering, as they were encouraged to revisit treatments that had already proven ineffective. We tried the pill again. We tried the pill again and yet again. Because she said there are new ones out that we could try… [It felt] like a box-ticking exercise… I felt I had to start with the pill first. That’s step 1. You must do this… At the time , it was like okay , I’ll give it a try but for me , it also felt like I’d just been brushed off. Because it’s a waste of time. I’d tried the pill. [Every] variety of the pill… I know it won’t fix it. (Participant 3, age 45–49, Urban). We tried the pill again. We tried the pill again and yet again. Because she said there are new ones out that we could try… [It felt] like a box-ticking exercise… I felt I had to start with the pill first. That’s step 1. You must do this… At the time , it was like okay , I’ll give it a try but for me , it also felt like I’d just been brushed off. Because it’s a waste of time. I’d tried the pill. [Every] variety of the pill… I know it won’t fix it. (Participant 3, age 45–49, Urban). While some women found less invasive options acceptable, others did not. Participants expressed a need for a balance between encouraging these options and respecting individual choice to refuse them. Many felt that the default of starting on the pill should not be imposed, particularly when they had valid reasons for seeking alternative treatment. For example, some women expressed a preference for definitive solutions (such as hysterectomy) earlier in their treatment journeys. Women’s responses conveyed a desire for a collaborative process in which treatment options were discussed in light of their past experiences, concerns and preferences. I think it’s great to give people options because the more options you have the more prepared you feel like you can make a good choice. But I think also you need to be listened to when you say you don’t want to do something , or you don’t feel comfortable with doing something. They need to appreciate that and go well okay , well that’s not for you. (Participant 10, age 45–49, Regional/Remote). I think it’s great to give people options because the more options you have the more prepared you feel like you can make a good choice. But I think also you need to be listened to when you say you don’t want to do something , or you don’t feel comfortable with doing something. They need to appreciate that and go well okay , well that’s not for you. (Participant 10, age 45–49, Regional/Remote). In navigating their options, some participants highlighted the need for a structured treatment pathway to be presented that included multiple options and clear next steps. But I do wish all the options had been laid out for me and going this is the pathway that we can try. We can try this and then six months of this and then six months of this and then this. Then if that all doesn’t work , then we try that…because there was no timeframe - it was always like “this should work , this should work”. (Participant 3, age 45–49, Urban). But I do wish all the options had been laid out for me and going this is the pathway that we can try. We can try this and then six months of this and then six months of this and then this. Then if that all doesn’t work , then we try that…because there was no timeframe - it was always like “this should work , this should work”. (Participant 3, age 45–49, Urban). Additionally, women struggled with understanding when to seek further help when a particular treatment failed to provide relief. Laying out a timeline would have provided more confidence and clarity in navigating their care. What happens if these treatments or the treatment that I chose didn’t work , what was the next step? Or if I didn’t like how I felt because the pill alters the way you feel. Sometimes it’s - if I didn’t like what that was doing to my life , what was the next step? I felt like that was what was missing. (Participant 12, age 45–49, Regional/Remote). I felt it wasn’t explained what could go wrong. Like at the time , Mirena was the answer to everything and everyone was getting a Mirena , and I just felt , like when it started to turn bad for me , I wasn’t given the heads-up of what to look for , what was happening , like I sort of left it for a bit late and I thought maybe it’ll sort itself out , but it didn’t. (Participant 16, age 45–49, Regional/Remote). What happens if these treatments or the treatment that I chose didn’t work , what was the next step? Or if I didn’t like how I felt because the pill alters the way you feel. Sometimes it’s - if I didn’t like what that was doing to my life , what was the next step? I felt like that was what was missing. (Participant 12, age 45–49, Regional/Remote). I felt it wasn’t explained what could go wrong. Like at the time , Mirena was the answer to everything and everyone was getting a Mirena , and I just felt , like when it started to turn bad for me , I wasn’t given the heads-up of what to look for , what was happening , like I sort of left it for a bit late and I thought maybe it’ll sort itself out , but it didn’t. (Participant 16, age 45–49, Regional/Remote). Participants expressed the need for clinicians to communicate clear and realistic expectations about their treatment outcomes and experiences. Many women felt clinicians had painted an overly positive outlook on various treatments, noting that options were presented as solutions. All of the medical professionals I saw were certain everything was going to work. It’s sort of like , take this and this will reduce your bleeding or do whatever. There wasn’t very much information about how long , how quickly you should see an improvement… I think everyone was just trying to be so positive and reassuring but realistically , when it doesn’t work or it doesn’t work as well as you’d hoped , yeah , that’s really hard. (Participant 6, age 44–49, Urban). I didn’t realise that I was likely to continue bleeding for six months after it was inserted before it was going to have any impact because I probably never would have agreed to it. But it was sold to me as the solution. (Participant 9, age 40–44, Regional/Remote). All of the medical professionals I saw were certain everything was going to work. It’s sort of like , take this and this will reduce your bleeding or do whatever. There wasn’t very much information about how long , how quickly you should see an improvement… I think everyone was just trying to be so positive and reassuring but realistically , when it doesn’t work or it doesn’t work as well as you’d hoped , yeah , that’s really hard. (Participant 6, age 44–49, Urban). I didn’t realise that I was likely to continue bleeding for six months after it was inserted before it was going to have any impact because I probably never would have agreed to it. But it was sold to me as the solution. (Participant 9, age 40–44, Regional/Remote). Conversely, some women felt discouraged to try certain treatment options due to an overwhelming emphasis on risks. While participants recognised the need to discuss risks to set realistic expectations for treatment outcomes, they also highlighted the importance of balancing this with risk mitigation strategies. But she was very thorough and she’d go into the risks and exactly what that means in so much detail that I think it just scared me off them… Possible risks of prolapses and all this sort of stuff , which they don’t tell you they can stitch and help with , right? (Participant 3, age 45–49, Urban). But she was very thorough and she’d go into the risks and exactly what that means in so much detail that I think it just scared me off them… Possible risks of prolapses and all this sort of stuff , which they don’t tell you they can stitch and help with , right? (Participant 3, age 45–49, Urban). Some participants felt that their treatment choices were limited due to perceived biases from the clinician, particularly around family planning. I had been seeing a gynaecologist for about two years , and I was trying to get a hysterectomy. But he kept saying , you’re too young , and you might want children and whatever else… I’m nearly 40 , single , no kids , no prospects , nothing like that. But he was also quite religious , so I think that played a lot into his decision to try not to push a hysterectomy. (Participant 4, age 35–39, Regional/Remote). I had been seeing a gynaecologist for about two years , and I was trying to get a hysterectomy. But he kept saying , you’re too young , and you might want children and whatever else… I’m nearly 40 , single , no kids , no prospects , nothing like that. But he was also quite religious , so I think that played a lot into his decision to try not to push a hysterectomy. (Participant 4, age 35–39, Regional/Remote). A concern raised by some participants involved the expectation of seeking approval from their husbands regarding certain treatment options. Women expressed frustration over this expectation, noting that it undermined their autonomy to make healthcare decisions. She did say “if we went down the track of having an ablation or a hysterectomy , then I would have to get approval from my husband”…that’s the only thing that I found quite crazy about the whole thing. It’s my body and I should be able to make that decision. (Participant 5, age 40–44, Regional/Remote). She did say “if we went down the track of having an ablation or a hysterectomy , then I would have to get approval from my husband”…that’s the only thing that I found quite crazy about the whole thing. It’s my body and I should be able to make that decision. (Participant 5, age 40–44, Regional/Remote). Participants also reported inflexibility in the options available, perceiving that clinicians were rigid in what they were willing to recommend. This was the case particularly for the Lng-IUD (brand name in Australia Mirena ), as many women felt that their clinicians were trying to “sell” them on this option. The lady who did my first surgery wanted to go down the Mirena route. I felt like they had their own agendas and they weren’t willing to listen to what I wanted , or they would listen but then they would be like well you need to try this , or you need to try this. (Participant 10, age 45–49 Regional/Remote). The lady who did my first surgery wanted to go down the Mirena route. I felt like they had their own agendas and they weren’t willing to listen to what I wanted , or they would listen but then they would be like well you need to try this , or you need to try this. (Participant 10, age 45–49 Regional/Remote). Participants emphasised the importance of feeling involved in treatment decision-making. Women reported feeling engaged when clinicians fostered open dialogues, validated their concerns and presented treatment options without pressure. [I felt] really involved. I felt like the gynaecologist put it all out there , and then said , “You take your time , you find out what you need to find out and then you come back and you let me know what the next step in the process is for us” , so yeah , very involved… I felt no pressure to pick one option over another. It was , these are the options , this is the information , what is going to work the best for you and we’ll make that happen. (Participant 7, age 40–44, Urban). [I felt] really involved. I felt like the gynaecologist put it all out there , and then said , “You take your time , you find out what you need to find out and then you come back and you let me know what the next step in the process is for us” , so yeah , very involved… I felt no pressure to pick one option over another. It was , these are the options , this is the information , what is going to work the best for you and we’ll make that happen. (Participant 7, age 40–44, Urban). When clinicians actively sought to involve women in their treatment decision-making process, positive experiences of care were more likely to occur. Women felt valued and supported when their preferences were acknowledged, their concerns were addressed, and they were given the space to make their own decisions without coercion. Participants reported a wide variation in the types and quality of resources provided during consultations. Some felt inadequately informed, noting that existing resources contained limited information about the treatment, and were not useful to their decision-making process. Conversely, other women felt overwhelmed by receiving too many resources from their clinicians. Almost all participants received a manufacturer-generated pamphlet providing information about Lng-IUD, which raised women’s concerns about potential bias in the information provided. Most women felt that this pamphlet painted an overly positive picture of the treatment. I guess it was helpful in that it explained more about what it does. But it was produced by a company that manufactures IUDs. It did address sort of possible risks and downsides. But I felt that it was a brochure that was kind of more aimed at selling the IUD…it didn’t allay my concerns about , you know - what if it makes me feel awful. (Participant 5, age 40–44, Regional/Remote). I guess it was helpful in that it explained more about what it does. But it was produced by a company that manufactures IUDs. It did address sort of possible risks and downsides. But I felt that it was a brochure that was kind of more aimed at selling the IUD…it didn’t allay my concerns about , you know - what if it makes me feel awful. (Participant 5, age 40–44, Regional/Remote). While women were not explicitly asked about decision aids, many participants expressed a need for more practical tools to guide decision-making, such as decision trees or flowcharts. Having this information in one place would allow for easier comparison and provide a clear path forward. I think it would [beneficial] if the options [were put] on one bit of paper instead of being given 14 pamphlets. Just to have some comprehensive information with the pros and cons or the costs or the effectiveness and things on one bit of paper , brochure or a little booklet. (Participant 24, age 45–49, Regional/Remote). I think it would [beneficial] if the options [were put] on one bit of paper instead of being given 14 pamphlets. Just to have some comprehensive information with the pros and cons or the costs or the effectiveness and things on one bit of paper , brochure or a little booklet. (Participant 24, age 45–49, Regional/Remote). Participants emphasised the importance of conducting their research using a combination of online sources, testimonials, and discussions with friends and family. Many participants felt that the information provided by their clinicians was helpful but incomplete. They gave us pamphlets , and then she emailed me links. Then off there , I’d just like to do my own research. Once I see that I go to Dr. Google just to see. After that as well , it’s just talking with other people. Friends and family who may have also gone down similar paths or had these challenges definitely helps because you don’t want to make a decision off of a pamphlet. (Participant 5, age 40–44, Regional/Remote). They gave us pamphlets , and then she emailed me links. Then off there , I’d just like to do my own research. Once I see that I go to Dr. Google just to see. After that as well , it’s just talking with other people. Friends and family who may have also gone down similar paths or had these challenges definitely helps because you don’t want to make a decision off of a pamphlet. (Participant 5, age 40–44, Regional/Remote). Women noted that this extra research allowed them to formulate a list of questions, better understand their options and engage in more meaningful discussions with their clinicians. I would have read it all. I would have used those paperwork as key starters to go searching online because I need those personal experiences as well. I’m not just going to take something out of a textbook…at full face value… I think that would have been probably my guiding force of making sure that I really went in informed. ( Participant 11, age 45–49, Urban). I would have read it all. I would have used those paperwork as key starters to go searching online because I need those personal experiences as well. I’m not just going to take something out of a textbook…at full face value… I think that would have been probably my guiding force of making sure that I really went in informed. ( Participant 11, age 45–49, Urban). Trust in their clinicians significantly influenced how women weighed the various sources of information. Those who felt confident in their clinicians were more inclined to rely on information relayed in verbal consults and clinician-provided resources over other sources of information. Going ahead I was probably relying more on the recommendation by the doctor. So the verbal conversation was probably what I relied on to make my final decision. He said he’d done it many times before. He had seen a really great success rate. You know , I really trusted him. (Participant 16, age 45–49, Regional/Remote). Going ahead I was probably relying more on the recommendation by the doctor. So the verbal conversation was probably what I relied on to make my final decision. He said he’d done it many times before. He had seen a really great success rate. You know , I really trusted him. (Participant 16, age 45–49, Regional/Remote). While most participants valued conducting their research, many encountered challenges in finding reliable and balanced information about HMB treatments online. Women acknowledged the risk of becoming overwhelmed or misled by too much research. I like to try and find stuff out for myself a little bit. There’s a lot of stuff available online now , so for people who are that way inclined , it is possible to do quite a bit of research , but then I guess you run the risk of going too far down the rabbit hole. (Participant 13, age 50–55, Urban). I like to try and find stuff out for myself a little bit. There’s a lot of stuff available online now , so for people who are that way inclined , it is possible to do quite a bit of research , but then I guess you run the risk of going too far down the rabbit hole. (Participant 13, age 50–55, Urban). Participants highlighted a prevalent negative bias in the online content they encountered. Some recognised that negative personal experiences were more frequently shared than positive outcomes. This was especially the case for the Lng-IUD, as almost all participants recalled reading a ‘horror story’ online. This skewed representation contributed to a reluctance to pursue certain options. I joined a hysterectomy support group , which was good but bad because people love to tell horror stories and people don’t really use support groups when they’ve had good experiences. (Participant 10, age 45–49, Regional/Remote). I joined a hysterectomy support group , which was good but bad because people love to tell horror stories and people don’t really use support groups when they’ve had good experiences. (Participant 10, age 45–49, Regional/Remote). Women appreciated when their clinicians directed their research by providing links to reliable sources. Having clinician-approved resources allowed them to focus on what they perceived as more relevant, balanced information, rather than getting lost in the overwhelming amount of online content. It is always a bit touch and go when you look stuff up on the internet because you never quite know what you’re going to get. As a good starting point , knowing that they’d been given to me by the doctor , that was useful , you knew that that information was going to be more reliable. (Participant 7, age 40–44, Urban). It is always a bit touch and go when you look stuff up on the internet because you never quite know what you’re going to get. As a good starting point , knowing that they’d been given to me by the doctor , that was useful , you knew that that information was going to be more reliable. (Participant 7, age 40–44, Urban). Participants found reassurance and practical insights through conversations with friends, family, or online communities. These exchanges provided both emotional support and information about the treatment process, recovery, and potential outcomes. Some women were influenced by positive experiences shared by others, whilst others were hesitant to pursue certain treatments after hearing negative stories. I had a little cry because I didn’t feel quite so alone. You get to read stories where someone might give you their positive story of how they come out the other side and their life is so much better now. (Participant 11, age 45–49, Urban). I had a little cry because I didn’t feel quite so alone. You get to read stories where someone might give you their positive story of how they come out the other side and their life is so much better now. (Participant 11, age 45–49, Urban). This reassurance from shared experiences helped women feel less alone and more informed, even though the influence varied based on the nature of the stories.

Heavy Menstrual Bleeding (HMB) is defined as excessive menstrual blood loss that interferes with a woman’s physical, social, emotional and material quality of life [ 1 ]. It is estimated to affect 20 to 30% of women of reproductive age, with higher rates in the years after menarche and as women approach the menopause transition [ 2 ]. Common causes include fibroids, endometriosis, adenomyosis and hormonal imbalances, although for many women a definitive underlying cause is not identified [ 3 ]. First-line treatment options include oral contraceptives, non-steroidal anti-inflammatory drugs, anti-fibrinolytic agents (such as tranexamic acid) and levonorgestrel-releasing intra-uterine devices (Lng-IUD) [ 4 , 5 ]. When these treatments are not sufficiently effective or acceptable to the woman, options include endometrial ablation and hysterectomy. In making treatment decisions, women must weigh various factors, such as effectiveness, risk and personal preferences. Therefore, there is a need for accessible and comprehensive information to support informed choices. Australian guidelines, such as the Heavy Menstrual Bleeding Clinical Care Standard developed by the Australian Commission on Safety and Quality in Health Care, advocate for an approach to care that prioritises shared decision-making (SDM) as standard practice in the management of HMB [ 4 ]. This approach would ensure all women are fully informed of all available treatment options, regardless of their geographic location [ 4 ]. SDM describes a collaborative process where patients and their clinicians work together to make treatment decisions, based on patient preferences and the best available research [ 6 ]. Several studies, including a systematic review, have found that SDM can reduce referrals to secondary care, promote the uptake of less invasive treatments, and reduce decisional conflict in multiple clinical contexts [ 6 , 7 ]. A SDM approach has also been found to improve treatment experiences for women with HMB, enhance patient engagement, and allow better alignment between treatment choices and patient preferences [ 8 – 11 ]. For example, a UK-based randomised-controlled trial found that providing women with information in combination with a structured interview to elicit patient values and preferences resulted in significant reductions in hysterectomy rates [ 9 ]. Understanding how women navigate their treatment choices and whether they feel adequately supported in making decisions is key to improving their experience and satisfaction with care. However, several previous studies display ongoing dissatisfaction among women with HMB and the care they receive [ 2 , 12 – 16 ]. Despite the existence of evidence-based recommendations, women in multiple countries report that they are not given enough information to make fully informed decisions about their treatment options. This highlights the need for more consistent and patient-centred communication practices to ensure women feel empowered and informed in their HMB treatment decisions. Bridging this gap between clinical guidelines and patient experiences is essential to improving the overall quality of care for women with HMB. In Australia, approximately 14,000 women undergo hysterectomy each year, nearly double the rate of comparable countries such as New Zealand and the UK, with substantial variation between local areas [ 4 ]. Approximately 90% of hysterectomies in Australia are for benign gynaecological conditions, such as HMB [ 17 ]. The significant variation in the rates of hysterectomy, endometrial ablation and Lng-IUD usage across Australia and the high rates of hysterectomy relative to similar countries have raised concerns that the Australian health system is failing to deliver equitable, evidence-based and efficient care for women with HMB [ 5 ]. In most cases, HMB is initially managed by general practitioners (GPs), with referrals to gynaecologists made when first-line treatments are ineffective or when women wish to pursue surgical options. Gynaecologists may practice in public hospitals, private clinics, or both. Some GPs are trained to insert LNG-IUDs in their clinics; however, this varies. GPs who do not perform insertions may refer women to trained GPs or gynaecologists. These factors underscore the need to investigate whether Australian women are being fully informed of all treatment options and empowered to choose the one most suitable for their needs. There is a notable lack of research on Australian women’s experiences of heavy menstrual bleeding (HMB) care, particularly concerning treatment decision-making and perceptions of shared decision-making (SDM). To our knowledge, no previous Australian studies have specifically explored these topics. While international research highlights key challenges in HMB care, it remains unclear whether these findings are reflective of the Australian context. This qualitative study aims to address this gap by exploring Australian women’s perceptions and experiences of HMB care and treatment decision-making, focusing on: 1) How women navigate discussions with their clinicians about their treatment options for HMB, including their experiences (or lack thereof) with SDM; 2) How women perceive the information and resources that have been provided to them by their clinicians about HMB treatment options; and. 3) What other sources of information women consult when making decisions about HMB treatment, and how they evaluate the reliability and usefulness of this information.

This qualitative study highlights that Australian women continue to encounter considerable challenges in navigating treatment decisions for HMB. They remain uncertain about what constitutes “normal” menstrual experiences, complicating their ability to justify seeking treatment. Past experiences with health professionals often reinforce the minimising of their symptoms, even when these symptoms negatively impact their quality of life. While treatment options, such as hysterectomy, were often discussed during consultations, participants’ accounts suggest that clinicians tended to steer recommendations towards less invasive options. Although this practice is in line with clinical guidelines, some women felt that not all their options were considered equally or tailored to their preferences. When treatment was initiated, women were uncertain about how and when the success of that treatment should be reviewed. Access to balanced, comprehensive guidance on all options should be standardised, with clinicians not only as informants but partners in an empowering decision-making process. Addressing these challenges are crucial for enhancing the quality of care and health outcomes of women with HMB.

This is the first qualitative study to describe Australian women’s experiences of HMB care and treatment decision-making. The study found that women often delay seeking help for HMB until it impacts their ability to fulfil employment or social roles. Women also report clinicians being focused on quantitative estimates of menstrual blood loss (such as frequency of changes in menstrual products) rather than the impact that HMB has on their lives. Women expressed frustration that they had to exhaust less invasive options before more invasive and more definitive options would be considered. Women wanted more information about treatment options, including planning for review and next steps, if treatment outcomes are unsatisfactory. Women strongly preferred information that they perceived as balanced and reliable. Women also reported positive experiences of care when they felt they were not coerced into making treatment decisions by their clinician. Beyond information provided by their clinicians, women valued information sourced through their inquiries, including from other women who had experienced the treatment options under consideration. Although the definition of HMB changed in the UK in 2007 from an emphasis on increased menstrual blood loss to one that centres the impact on a woman’s quality of life [ 1 ], our findings indicate that women continue to tolerate significant HMB before seeking medical care. Some women in our study worried that they may be seen as “whingers”. In some cases, this feeling was reinforced by clinicians who focused on measuring menstrual blood loss and did not acknowledge women’s experiences. However, even after receiving a diagnosis of HMB, some women remained uncertain whether it was a problem worth addressing. Many women also did not seek treatment for HMB until it began to have a significant impact on their employment or they experienced symptoms of iron deficiency, consistent with a 2008 meta-ethnographic review of qualitative studies [ 13 ]. These findings highlight a need for improved education and communication for both women and clinicians. For women, public health messaging should normalise help-seeking for symptoms that affect daily life, regardless of blood volume. For clinicians, further training is needed to support the use of quality-of-life criteria in diagnosing HMB, and to ensure that women’s concerns are validated and taken seriously. Such efforts are critical to enabling timely access to appropriate care. The results of our study are generally consistent with those of a 2024 Dutch qualitative study that examined women’s motives and considerations when navigating treatment discussions around HMB [ 12 ]. Many participants in the Dutch study favoured the least invasive options for treatment because of feared side effects, complications and the impact of treatments on daily life [ 12 ]. Likewise in this study, some women preferred less invasive options. However, in our study many expressed frustrations over the need to exhaust the least invasive options first. For example, women who wanted definitive solutions valued hysterectomy highly. When their preferred treatment options were denied, it led to dissatisfaction with the care process. The differences may be due to our study selectively recruiting women who had attempted to use but not necessarily used a range of treatment options, including hysterectomy. Nevertheless, these findings highlight a need for a balance between encouraging women to try less invasive options and respecting the values and preferences of the woman experiencing HMB. The current Australian guidelines state that less invasive treatment options should be used unless they are ineffective or unacceptable to the woman [ 5 ], but our study suggests that the latter part of this recommendation is not always being considered. Women in our study expressed a need for more thorough discussions with their clinicians about their treatment options. An analysis of HMB management by GPs in Australia found that counselling, advice, and education during consultation for HMB were only reported to have occurred in 22% of new HMB cases, although the reasons for this have not been explored [ 26 ]. Our participants felt that the limited time available during consultations restricted meaningful conversations about their treatment pathways. Women desired discussions regarding when to return if a treatment seemed unsatisfactory, as well as other available options. Our findings echo results from previous studies, highlighting the importance of laying out a wide range of options early on in a woman’s treatment journey with realistic expectations of their effectiveness and potential side effects [ 12 , 14 – 16 ]. Our results mirror those of a recent UK study, with women reporting negative experiences of care and treatment, feeling insufficiently informed about their options and realistic timelines for improvement [ 16 ]. When women felt fully informed about all their treatment options and realistic expectations were set, they were more likely to have positive treatment experiences, even if they had to undergo multiple treatments. These insights underscore the necessity of enhancing communication and fostering patient involvement to improve the treatment experiences of women with HMB. Women in this study suggested the need for a resource that clearly outlines all options, risks and benefits, even though they were not explicitly asked about SDM tools. They suggested flowcharts and decision trees would be useful as potential aids, with women emphasising the need for a single, comprehensive resource to take away from consultations. More generally, decision-making tools play a critical role in improving the care and treatment experiences of women with HMB [ 6 – 8 , 10 , 11 ]. A recent Dutch study provided participants with an option grid as a potential decision-making tool in HMB care [ 12 ]. This tool outlines the available treatment options, with their advantages and disadvantages. The participants in their study deemed the tool as a useful way to explain all available options. Thus, the development and implementation of a comprehensive resource from a trusted source provides an opportunity to enhance informed decision-making for women with HMB. Women’s knowledge about treatment options comes from a variety of sources, including the Internet, their own experiences, other experiences/opinions and the opinions of their clinicians [ 12 , 14 ]. Our study found that when women trusted their clinicians, they were more likely to weigh clinicians’ opinions higher than self-acquired information. Findings from our study also revealed a wide variety of resources available during consultations. Women in our study were mostly provided manufacturer-made pamphlets on the Lng-IUD device, which they perceived to be aimed at selling the product. To our knowledge, this is the first study to evaluate women’s perceptions of the resources available to them in the context of HMB treatment. These findings highlight women prioritise information that is perceived to be free from bias to enhance their understanding and confidence in treatment options. A major strength of this study is the involvement of a CAG, which provided valuable insights throughout the study’s design, including the interview guide. Their input ensured that the research was grounded in patient perspectives, allowing for a more nuanced exploration of the needs and concerns of women with HMB. Additionally, the study’s use of purposive sampling allowed for a diverse representation of experiences among women across Australia who had considered various treatment options for HMB. Another key strength is that this study included both women who received and who had attempted to receive a diverse range of treatments for HMB. By expanding our participant pool, our study captures a more comprehensive range of experiences and identifies the barriers of those who attempted to seek care but were unable to access treatment. However, the present study has some limitations. Firstly, although we actively sought to recruit women from rural areas, most participants were from major cities (61% of women from MM 1 classified areas). Therefore, the experiences and perceptions of rural and remote areas may be under-represented. Additionally, selection bias could have influenced our results, as women with strong opinions or negative experiences of care may have been more inclined to participate, potentially skewing the data towards more critical perspectives. While we actively sought to recruit women who had sought treatment in the past two years, some of the experiences described by the participants had occurred much earlier. Future research could minimise this bias by adopting a longitudinal design to collect women’s real-time perceptions and experiences as they undergo treatment decision-making and HMB management. Furthermore, targeted recruitment strategies in rural areas could enhance the comprehensiveness of future studies. Despite these limitations, our findings offer valuable insights for improving SDM practices in HMB care. Our results suggest that women with HMB require more comprehensive and reliable information to make informed treatment decisions. The findings of this study support several recommendations. Firstly, enhancing access to SDM practices is crucial. Clinicians should provide balanced information on all treatment options and involve women in evaluating these choices based on their values and preferences. This is consistent with existing clinical guidelines but is often not realised in practice, as some participants reported feeling “sold” on certain options without adequate exploration of alternatives. Future qualitative studies should evaluate clinicians’ perceptions and understandings of SDM in HMB management. Secondly, respecting patient preferences for definitive treatments - such as hysterectomy - is essential, even when clinical standards recommend starting with less invasive options. Clinicians must be prepared to explore and accommodate these preferences when appropriate, balancing the lower risks associated with less invasive options against individual patient autonomy. Lastly, providing a single decision aid in routine care offers the opportunity to standardise information across consultations and ensure that women receive clear, consistent guidance. Clinical guidelines should reflect this by encouraging the provision of a broader range of treatment options, offering realistic information about the benefits and risks, as well as establishing timelines for treatment review as standard practice. In future research, we recommend a longitudinal study to explore the effectiveness of these tools in the Australian context, focusing on women’s perceptions of their utility and impact.

Below is the link to the electronic supplementary material. Supplementary Material 1 Supplementary Material 1