Experiences of menstrual health and amenorrhoea in eating disorder inpatient units in England: a subgroup analysis from a lived experience led, qualitative study

Experiences of menstrual health and amenorrhoea in eating disorder inpatient units in England: a subgroup analysis from a lived experience led, qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Experiences of menstrual health and amenorrhoea in eating disorder inpatient units in England: a subgroup analysis from a lived experience led, qualitative study Hat Porter This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5994046/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 8 You are reading this latest preprint version Abstract Background Although no longer specified within the diagnostic criteria for anorexia nervosa, the prevalence of menstrual disturbances among patients with eating disorders is well-documented. However, there is limited research examining patient experiences of amenorrhoea and eating disorders, or addressing how the topic is approached by eating disorder services. This article presents a subgroup analysis of a qualitative study, which examined experiences of menstrual health in psychiatric inpatient settings. The study’s main findings remain relevant to eating disorder services, however, this article presents an additional subgroup analysis which identified two themes from participants with experience of inpatient eating disorder services. Methods Thematic analysis was used to analyse qualitative data generated through questionnaires with staff and people with lived experience of inpatient settings and interviews with people with lived experience. An additional subgroup analysis was conducted to further explore the experiences which were specific to the eating disorder context. Results Three interviewees, 13 lived experience and two staff questionnaire respondents had experience related to eating disorder services. Eating disorder services were reported to place significant emphasis on the menstrual cycle as a marker of health, informing patient meal plans and weight targets. However, the emotional impact of managing the return of menstruation, and its significance within the context of their eating disorder, was not adequately addressed. Invasive practices of forcing patients to display used menstrual products to staff, as evidence of their menstruation, were reported. Conclusions The menstrual cycle is an important consideration in the treatment of patients with eating disorders, however, this should extend beyond monitoring the presence or absence of menstrual cycles to consider a more holistic perspective of menstrual health. This should include provision of information; how menstrual and gynaecological conditions may interact with someone’s eating disorder; and addressing psychological and emotional needs related to menstruation in eating disorder treatment and recovery. Further research is needed to understand these experiences in greater depth. Menstruation amenorrhoea inpatient treatment lived experience patient perspectives Plain English summary The loss of menstrual periods was once considered a criterion for anorexia. Although this has been removed from the diagnostic criteria, it remains important to consider menstruation for patients with eating disorders (who menstruate or would be expected to menstruate). However, there is a lack of research which considers the experiences of loss and resumption of periods for people with eating disorders, or how this is addressed by eating disorder services. This article reports a subgroup analysis – an analysis conducted on a subsection of participants within a larger study – of experiences of menstruation in eating disorder inpatient settings in England. Data was collected through interviews with patients and questionnaire completed by staff and patients. A process called thematic analysis was used to identify two themes which reflected the participants experiences. The research was conducted by a researcher with experience of the subject matter. This research highlighted that periods were closely monitored as a measure of health and used to inform treatment and weight targets. This was reported to lead to intrusive practices like making patients show staff their period blood on pads or underwear as proof of their period. Despite the focus on menstruation, patients were not adequately supported with the emotional impact of the return of their periods. Although it is important to consider periods as part of assessment of patients’ health, this should extend beyond considering the presence or absence of menstruation to understand any other menstrual disorders and the psychological experiences. More research is needed to better understand experiences of menstruation and eating disorders. Introduction Functional hypothalamic amenorrhea (FHA) – the absence of menstrual periods due to inhibition of the hypothalamic-pituitary-ovarian axis – can be triggered by weight loss, stress, exercise, or a combination of these factors (Chen et al., 2023). Eating disorders, such as anorexia nervosa, can put significant stress on the body and can disrupt menstrual functioning (Schorr and Miller, 2016). Menstrual disruptions can occur across eating disorder subtypes, including anorexia nervosa, binge-eating disorder and bulimia (Algars et al., 2014; Martini et al., 2014; Milano et al., 2022; Pinheiro et al., 2007; Saldanha & Fisher, 2022). However, some patients may continue to menstruate despite having a very low weight, or may resume menstruation at a weight which would not otherwise be considered an ideal physiological environment (Cacciatore et al., 2024). Until 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) included amenorrhea as a diagnostic criterion for anorexia nervosa; those with otherwise equivalent symptoms, but continued menstruation, would be diagnosed with an ‘eating disorder not otherwise specified’ (EDNOS). Although no longer considered within the diagnostic criteria, it remains important to address menstrual status amongst people who would otherwise menstruate [1] with eating disorders due to the negative health outcomes associated with amenorrhea. The impact of eating disorders on the menstrual cycle is documented in biomedical and epidemiological studies, however, there is limited qualitative research examining patient experiences of amenorrhea, and its treatment in healthcare settings. In 2023, I conducted a qualitative study examining experiences of menstrual health in psychiatric inpatient settings [2] ; this involved interviews and open-text questionnaires with people with lived experience of treatment in inpatient settings and questionnaires with staff working in inpatient settings (Porter, 2024a; Porter, 2024b). Four main themes were identified: the lack of privacy when menstruating in psychiatric inpatient settings; (restrictions in) access to menstrual materials in psychiatric inpatient settings; attitudes and approaches to menstruation; and menstrual support needs and care provision (Porter, 2024a; Porter, 2024b). These were categorised as relating to institutional and interpersonal settings, where patients’ experiences were influenced by the (over)use of restrictive practices, as well as by the interactions they had with staff members. Staff were often reported to express stigmatising attitudes towards menstruation and provide inadequate support with patients’ physical and emotional needs related to problematic menstrual experiences. The study revealed that patients' needs surrounding their menstrual health were largely unsupported, with many participants reporting experiences which may amount to neglect. Restrictions were placed on access to menstrual products and materials (including hot water bottles, medications, toiletries and clothing). The institutional environment and restrictive practices, such as enhanced observations, infringed upon patients’ privacy, making their menstruation visible to staff and those around them. While those who reported experiencing treatment in eating disorder units described the same issues as other participants, some of the restrictions reported were specific to eating disorder services. For example, participants reported distress when being prohibited from using the toilet after meals, which posed additional challenges when menstruating. Given the unique challenges and negative experiences of eating disorder inpatient units (Peebles et al., 2023; Rankin et al., 2023; Webb, Griffiths and Schmidt) and the relationship between eating disorders and menstrual disruptions (e.g. Schorr and Miller, 2016), it is important to understand experiences of the menstrual cycle and inpatient eating disorder treatment. Therefore, a qualitative subgroup analysis was conducted to analyse the data from staff and patients with experience relating to eating disorder inpatient services. This aimed to examine the unique experiences for this patient group. Methods This paper reports a subgroup analysis of individuals with experience of treatment in inpatient eating disorder services, and staff who work in services providing specialist eating disorder treatment, from a former concurrent triangulation mixed methods study using a qualitative and quantitative questionnaire and semi-structured interviews (Porter, 2024a; Porter, 2024a). A more in-depth description of the study methodology, and the quantitative data, can be found at Porter 2024 a and b. Both questionnaires and interview topic schedules were informed by the definition of menstrual health developed by the Global Menstrual Collective (Hennegan et al., 2021) which supported discussion of each domain of menstrual health. This includes access to information and experiencing an environment free from stigma and shame. The concept of menstrual health reflects the range of experiences related to menstruation, emphasising this as a matter of health, and not merely hygiene (World Health Organisation, 2022). Participants: Lived experienced participants reported experiences of treatment in an eating disorder inpatient service in England within the previous five years were included in the subgroup analysis; participants who mentioned experiences of an eating disorder, but not specialised eating disorder inpatient treatment were not included. Staff participants who reported working in an eating disorder inpatient service in England were included in the subgroup analysis, this included CAMHS units which treat patients with and without eating disorders where it was explicit that eating disorder treatment was provided. Ethics: Ethical approval was granted by the NHS Health Research Authority. Interview participants were offered a peer support debrief session with someone external to the research team following the interview. Data Collection: All data was collected by HP. The questionnaires were distributed in April 2023 and the interviews were conducted in August and September 2023. All interviews were held online at the preference of participants. Interviews were audio recorded and transcribed verbatim. Data Analysis: The data analysis was conducted by HP. The analysis involved separating the responses of participants who had experienced inpatient eating disorder services and conducting thematic analysis for the qualitative questionnaire responses and interview transcripts. Themes were constructed to reflect experiences which were specific and unique to the eating disorder service context. Reflexivity, positionality and lived experience I am a white British, disabled, autistic, non-binary person. I have lived experience of inpatient hospital admissions, including for anorexia treatment; participants were aware of my lived experience positionality. Elsewhere I have shared these experiences including how my menstruation was exposed during inpatient eating disorder treatment due to a policy of weighing patients naked, in only underwear – something I experienced as coercive and traumatic (Porter, 2024c). A reflexive approach was essential throughout, acknowledging my preexisting knowledge, lived experiences, and the emotional impact of the research, and considering how this shaped my approach to data analysis (Nowell et al., 2017). This included written reflection on my personal experiences, to support explicit identification of accounts which mirrored these experiences and acknowledging how this informed my approach to the research conduct and analysis. Findings There were 13 questionnaire respondents with lived experience of eating disorder inpatient services, two staff questionnaire respondents described experiences of working in CAMHS eating disorder services, and three interviewees reported experiences of eating disorder services (including adult or child and adolescent services) from the original 178 study participants [3] . Demographics Of the lived experience questionnaire respondents, 12 were female and one identified as “trans masc” [masculine]. Eleven participants were white, one respondent was of mixed/multiple ethnic background, and one identified as ‘other ethnic group’ [4] . Eight participants were aged between 18-24, two participants were aged 25-34, two 35-44, and one was aged 45-54. Two staff respondents were both nurses working in CAMHS units. Of the interview participants, two were female and one was non-binary. Two were of mixed/multiple ethnic background, and one was white. Two were aged 18-24 and the other was aged 25-34. Thematic analysis findings Two themes were derived from the data: conceptualisations of menstruation and ‘health’ in relation to eating disorders and support needs, and care provision related to eating disorders and menstrual health. These themes reflect approaches to assessment of menstruation and its relationship to ‘health’, and the associated support – or lack thereof – patients received. Conceptualisations of menstruation and ‘health’ in relation to eating disorders Lived experience participants discussed the way that eating disorders intersected with their menstrual health – particularly in the context of the loss and resumption of menstruation (amenorrhea). Menstruation was reported to be closely monitored by staff, who used the presence or absence of menstruation as part of assessments and to inform treatment plans. An interview participant described a shift in the focus of the staff once she had resumed menstruation, at this point, her meal plan was altered and the team began planning for her discharge from the service, although she continued to struggle emotionally. “It… really reinforced the like… ‘oh, I must be like better now’ […] everyone was so like, focused on […] ‘we can change like what you're eating’ [and plan for] discharge. So I think it maybe kind of stuck with me that they were so focused on like menstrual health as like an indicator of like, how you're actually feeling […] when everyone around you is telling you that it is, like it’s quite difficult to see past that.” – Interview participant 1, experience of adult eating disorder unit As is highlighted in the quotation above, the emphasis placed on menstruation was experienced for some lived experience participants as, not only unhelpful, but having a lasting impact on how they viewed their menstrual cycle and its significance. Additionally, multiple participants reported that they were forced to show staff members the blood on their underwear or menstrual products to provide evidence that they were being honest about the return of their menstrual cycles. “If you started your period again you had to show a member of staff to prove it, so they would adjust what weight you needed to gain to. This is part of the reason I didn't want to come off the pill, as I was mortified about this prospect. I still get mortified and feel disgusting on my period and I do believe a lot of this shame and negative associations with getting my period was internalised from my time inpatient.” – Questionnaire participant 3, experience of CAMHS and adult eating disorder units “On eating disorder units especially, like… it'd be like ‘you need to show us your pad like to prove that you're not like faking it [menstruation]’ […] like it still feels really… like no one trusts you.”- Interview participant 2, experience of CAMHS eating disorder unit and adult acute ward Furthermore, some lived experience participants described how resuming menstruation, or continuing to have periods throughout their illness, was a challenging experience. Menstruation was positioned as a sign of health which, in the context of their eating disorder, had negative associations. “It just made me feel dirty and it made me feel like, you know, my body was healthy and I couldn't really cope with that. And even though I'm having a period and it's a good sign as I've got osteoporosis […] It just made me feel like I weighed too much.” – Interview participant 1, experience of adult eating disorder unit “I was afraid that if any other patient knew I was able to menstruate, they would see me as fat and not 'ill enough' to be on an eating disorders ward. I had my own internalised stigma around this, believing that I couldn't really be ill or in need of treatment if my periods hadn't stopped.” – Questionnaire participant 5, experience of adult eating disorder unit The above quotes emphasis that, although both staff and patients spoke of menstruation being conceptualised as a sign of health, perhaps shaped by ill-driven driven thinking, the emotional significance of menstruation, and the health it may be seen to symbolise, differed from the patient perspective. A lack of support related to eating disorders and menstrual health In contrast to the above theme, participants with experience of eating disorder units reported that staff often overlooked menstruation, and patients’ needs related to this. While this experience was reported by participants across psychiatric setting types, those in eating disorder units discussed this within the context of staff assuming that patients would not menstruate due to the physical consequences of their eating disorders. This assumption – and how menstruation was overlooked – was reported to heighten feelings of shame and self-consciousness for patients who were menstruating. “Menstruation was not mentioned or any support offered regarding it […] I believe this is due to the assumption that no patients were menstruating due to extremely low BMI and other physical consequences of having an eating disorder” – Questionnaire participant 2, experience of adult eating disorder unit “They just didn’t have them [menstrual products] I think, especially in eating disorder units because in eating disorder units obviously like they expect most people to lose periods and stuff like that. But I get them through very low weight. […] It probably like enhanced like shame that you had around it [menstruation] and stuff as well. I guess like especially in eating disorders units because most people wouldn’t experience them [periods].” – Interview participant 3, experience of a number of ward types including eating disorder units Participants also reported a lack of discussions regarding amenorrhea and how patients’ menstrual cycles may be impacted by their eating disorders – even when this information was specifically requested. “No one talked to me about how/why my [menstrual] cycle might stop whilst experiencing an eating disorder. When I asked for advice on what to do when my period stopped I was ignored and mocked because it was “my fault”.” – Questionnaire participant 7, experience of CAMHS, locked rehabilitation and low secure wards “In the eating disorder unit, I wasn’t given information on how my menstrual cycle might return, when or if it would be different at first.” – Questionnaire participant 1, experience of NHS acute wards and private eating disorder unit This was reported to negatively affect participants, for example one participant discussed how the way her menstrual pain was dismissed hindered her ability to develop a more positive relationship with her body and food. “I felt so trapped and it did not help me heal my relationship with my body or food at all, it made me feel my pain was irrelevant, my own feelings were meaningless and that food and periods were associated with pain and discomfort.” – questionnaire participant 8, experience of CAMHS and adult eating disorder units Furthermore, for one interview participant, the lack of discussion around her menstrual health meant that her pain, associated with suspected endometriosis, was overlooked by staff. “I wasn't really given any aftercare for that [resuming menstruation] but for me, my period had been quite linked with my eating disorder, and it was one of the reasons why I… why I got so unwell in the first place. But no one thought to check ‘Oh, how does she feel because it returned’.” – Interview participant 4, experience of adult eating disorder unit Later in her interview, she described being in too much pain to attend groups or therapy sessions and feeling too nauseous to eat. Despite her attempts to explain her pain, staff interpreted her withdrawal as being related to her mental health, overlooking the complex interactions between her menstrual health and eating disorder. “They would always be so quick to assume that you were skipping therapy or meals or socializing because of mental health when it wasn't, it was physical health. Like they didn't seem to understand the connection between the two. Like, you know, on my period […] I won't be able to eat because I just feel so sick. Again, that's not mental health. That's not my eating disorder, that is physical health” – Interview participant 1, experience of adult eating disorder unit However, the staff questionnaire respondents reported that their services provide support and information to patients, particularly in relation to loss and resumption of menstruation associated with eating disorders. “ Young people with eating disorders are spoken to about their menstrual history ” – Staff questionnaire respondent 1, Staff Nurse, CAMHS ward “ [I] discuss restarting periods once the body is at a healthier weight. Due to working with children(12-18) with eating disorders ” – Staff questionnaire respondent 2, Clinical Nurse Specialist, ‘CAMHS SEDU’ (presumed to be specialist eating disorder unit) Although staff participants reported that patients would be spoken to about menstruation, the lived experience participants expressed that their practical, physical and emotional needs related to menstruation, were generally not addressed or supported. For some participants, this was described as affecting their attitudes towards menstruation, even following being discharged from hospital, or being unhelpful in their eating disorder recovery. Discussion The two themes: “conceptualisations of menstruation and ‘health’ in relation to eating disorders”, and “support needs and care provision related to menstruation and eating disorders”, reflected that, whilst patients’ practical, physical and emotional support needs were often reported as being overlooked, menstruation was also closely scrutinised. For some, menstruation was monitored as an indicator of health, and used to inform patient treatment, meal plans and weight targets. Indeed, the Maudsley Method for treatment of anorexia nervosa in adolescents states, “ there is no strong argument for increasing their weight further ” beyond the weight at which a patient resumes menstruation, even if this is below the average BMI for their age and height (Maudsley Service Manual for Child and Adolescent Eating Disorders, 2016). However, observing one menstrual period is insufficient to assess for regular menstruation. There does not appear to have been any research comparing patient outcomes when resumption of menstruation – rather than BMI or weight percentiles – is used an indicator of ‘healthy’ weight, especially if this occurs at a low weight (e.g. Cacciatore et al., 2024). Conversely, lower BMI at discharge from inpatient anorexia nervosa treatment is associated with increased risk of relapse (Frostad et al, 2022). Resumption of menstruation has also been used to determine treatment outcomes for patients with anorexia nervosa. Originally developed in 1975, The Morgan-Russell Outcome Assessment Schedule (MROAS) (Morgan and Russell, 1975) is a widely used tool for assessing treatment outcomes in patients with anorexia. The MROAS identifies three outcome categories: good, intermediate and poor, based on measurements of body weight and menstruation. A good outcome is indicated by maintenance of a body weight, within 15% of the average body weight, with regular menstrual cycles; an intermediate outcome would be indicated by the same weight gain which has either not been sustained, or where there were continuing menstrual disturbances. The fourth question in this subscale relates to “attitude to menstruation”, where a patient being "pleased that menstruation has returned" is seen as a good outcome, whereas an "active dislike" of menstruation is considered a sign of ‘sexual maladjustment’. This is assessed alongside a patient’s interest in marriage and reproducing, denial of libido, and aversion to heterosexual contact (Morgan and Hayward, 1988). The inclusion of this question as part of assessment of ‘sexual dysfunction’ appears to position ‘attitude towards menstruation’ as indicative of wider attitudes towards fertility and traditional gender roles in relationships, motherhood, and reproduction. In addition to being problematic in its overt pathologizing of homosexuality and asexuality, this illustrates how menstruation may be viewed in close proximity to its relationship to fertility – perhaps, not (only) as an indicator of health, but as an indicator of potential reproductive capacities. Resumption of menstruation is an important aim in the treatment of functional hypothalamic amenorrhea in eating disorder patients and should be considered alongside other measures such as hormone levels (Cacciatore et al., 2024). However, the present study highlighted that the way services emphasised menstruation as a marker of health had adverse impacts for patients, including furthering negative associations with menstruation; especially as the emotional challenges of this were not addressed. This finding is consistent with wider research which reflects how patients feel that eating disorder services place focus on markers of health, such as weight, at the expense of recognising the emotional experience of these conditions (Rance, Moller and Clarke, 2017; Zugai et al., 2024). This is especially concerning where this scrutiny of the physical body fuels invasive (and unnecessary) practices, such as forcing patients to show staff period products or underwear to prove they have menstruated. Whilst resumption of menstruation may represent a reassuring moment in eating disorder treatment from the staff perspective, this was described as creating distress amongst patients where menstruation was equated with feeling “fat” or “dirty”. One participant described fearing that they wouldn’t be seen as “ill enough” due to not experiencing amenorrhoea. This highlights the complex meanings that the presence, or absence, of menstruation – and the health it may be viewed as symbolising – can hold through the lens of an eating disorder. Indeed, research has illustrated the role that (the absence of) menstruation may play in the construction of anorexic identities, with the loss of menstruation signifying ‘achieving’ anorexia (Eli, 2014; Warin, 2010). These experiences must also be understood within wider cultural contexts and entrenched menstrual taboo, which shape menstrual attitudes (Barrington et al., 2021). Although it is vital to monitor health markers, these must also be understood within the context of patients’ psychological wellbeing; the social and cultural factors which shape these experiences; and with caution to not further hyperfocus on the body and its metrics. Whilst the absence of menstruation is an indicator of poor health, menstruation itself is not an assurance of health; especially where this is associated with painful and disruptive experiences and disorder. Lived experience participants reported receiving little discussion about menstruation, or the health impacts of amenorrhea, beyond scrutiny of the presence/absence of menstruation. One participant reported receiving insufficient support for suspected endometriosis. Her pain, and how it impacted her, was misinterpreted as related to her eating disorder; the emotional connections between her eating disorder, menstrual cycle, and endometriosis were unaddressed. Although findings vary, several studies have reported an increased incidence of eating disorders, and disordered eating, in individuals with endometriosis (Koller et al., 2023; Panariello et al., 2023). Further research is needed to develop understanding of the complex relationships between gynaecological and menstrual conditions, eating disorders, and their aitiology and treatments. However, for eating disorder patients with gynaecological conditions, including problematic menstrual symptoms, there is a need to consider how these relates to their eating disorder and their health holistically. This speaks to the broader need for eating disorder services to take a more holistic approach to patient care, recognising the role of the body and co-occurring conditions in the development and maintenance of eating disorders (Downs, 2024). Furthermore, participants received a lack of emotional support in dealing with the resumption of menstruation, although this experience was reported to be challenging. There is limited research considering the emotional experiences of menstruation for people with eating disorders. Psychodynamic theories of anorexia have suggested that a desire to supress menstruation may be factor in the development of anorexia due to a fear of womanhood, as symbolised by menarche (Redland, 2020); a desire to deny adult sexuality (Redland, 2020); or due to menstruation presenting a trigger in the context of experiences of childhood sexual abuse (Ross, 2009). Additionally, in a study by Avila, Golden, and Aye (2019) transgender youth (assigned female at birth) with restrictive eating disorders, reported a desire to lose weight in order to suppress menstruation, and alleviate the gender dysphoria associated with it. Eating disorders are complex, and generalisations should not be made about the causes of these. Nevertheless, the present study, and wider research, highlight the need to explore support and treatment options for those with extreme difficulties with menstruation. However, participants in the present study reported receiving a lack of support related to the emotional challenges menstruation posed – a finding which was consistent across hospital types and not specific to eating disorder units. The study outlined in this article did not specifically examine experiences of menstruation in eating disorder units. Although the findings of this subgroup analysis are important as a subsection of the main study, further research will be required to develop a greater understanding of how eating disorder units support patients in relation to their menstrual cycles – including understanding current practice and considering how services can best support those in their care. Service provision may differ across child and adolescent and adult eating disorder units, and services beyond England. This study focused on experiences of treatment, therefore, there is a need for further research to understand the menstrual experiences of people with eating disorders more broadly; this should consider experience of menopause transition, and the differences in experiences across eating disorder diagnoses. Conclusion This article discusses findings of a subgroup qualitative analysis examining experiences of menstruation in eating disorder inpatient settings in England. Two eating disorder-specific subthemes were constructed in addition to the experiences which were reported across inpatient setting types. Across all types of psychiatric inpatient setting, this research highlighted a contradiction in psychiatric inpatient units where menstruation was both highly visible, but also overlooked, and patients’ needs were often unmet. In the context of experiences of eating disorder services, patients’ menstrual cycles were closely monitored, with some patients even being forced to show menstrual blood to staff members, whilst not providing adequate support with the physical and emotional aspects of these experiences. Menstruation is undoubtedly an important consideration when evaluating the physical well-being of patients in eating disorder treatment. However, the focus must go beyond simply equating the return of menstruation with health and recovery. There is a need for eating disorder services to offer more comprehensive support, addressing the emotional significance that menstruation may hold, as well as the influence of underlying gynaecological or menstrual conditions and how these may interact with someone’s eating disorder. This includes providing both emotional support and practical treatment options. Additionally, it is vital that assessments of menstrual status do not reinforce negative attitudes towards menstruation or lead to coercive practices, such as forcing patients to display their underwear or menstrual products to staff. Abbreviations CAMHS: Child and adolescent mental health services EDNOS: Eating disorder not otherwise specified FHA: Functional hypothalamic amenorrhoea MROAS: Morgan-Russell Outcome Assessment Schedule PMDD: Pre-menstrual dysphoric disorder Declarations Ethics approval and consent to participate Ethical approval for this research was granted through the NHS Health Research Authority research ethics committee. All participants provided informed consent for participation. Availability of data and materials The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Competing interests None Funding This research was funded by the National Survivor User Network (NSUN) Acknowledgements With thanks to Amy Wells and Gabrielle Johnson at NSUN for support throughout this research. Author Contribution This research, including all stages of data collection and analysis, and this subsequent manuscript was conducted and prepared solely by HP. References Ålgars M, Huang L, Von Holle AF, Peat CM, Thornton LM, Lichtenstein P, et al. Binge eating and menstrual dysfunction. Journal of Psychosomatic Research [Internet]. 2013 Nov 28;76(1):19–22. Available from: https://doi.org/10.1016/j.jpsychores.2013.11.011 American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. 2013. Attia E, Roberto CA. Should amenorrhea be a diagnostic criterion for anorexia nervosa? International Journal of Eating Disorders [Internet]. 2009 Jul 20;42(7):581–9. Available from: https://doi.org/10.1002/eat.20720 Avila J, Golden NH, Aye T. Eating disorder screening in transgender youth. Journal of Adolescent Health. 2019;65(6):815-817. Available from: https://doi.org/10.1016/j.jadohealth.2019.06.011 Barrington DJ, Robinson HJ, Wilson E, Hennegan J. Experiences of menstruation in high income countries: A systematic review, qualitative evidence synthesis and comparison to low- and middle-income countries. PLoS ONE [Internet]. 2021 Jul 21;16(7). Available from: https://doi.org/10.1371/journal.pone.0255001 Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology [Internet]. 2006 Jan 1;3(2):77–101. Available from: https://doi.org/10.1191/1478088706qp063oa Cacciatore C, Cangiano B, Carbone E, Spagnoli S, Ramirez MPC, Polli N, et al. Body weight variation is not an independent factor in the determination of functional hypothalamic amenorrhea in anorexia nervosa. Journal of Endocrinological Investigation [Internet]. 2023 Oct. Available from: https://doi.org/10.1007/s40618-023-02207-z Chen L, Lu Y, Zhou Y, et al. The effects of weight loss-related amenorrhea on women’s health and the therapeutic approaches: a narrative review. Annals of Translational Medicine . 2023;11(2):132. Available from: https://doi.org/10.21037/atm-22-6366 Downs J. The body is not just impacted by eating disorders – biology drives them. Trends in Molecular Medicine [Internet]. 2024 Mar 9;30(4):301–4. Available from: https://www.researchgate.net/publication/378861869_The_body_is_not_just_impacted_by_eating_disorders_-_biology_drives_them Eisler I, Simic M, Blessitt E, Dodge L and “team”. Maudsley Service Manual for Child and Adolescent Eating Disorders. 2016. Accessed 26 September 2024. Available from: https://mccaed.slam.nhs.uk/wp-content/uploads/2019/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf Eli K. An embodied belonging. Medicine Anthropology Theory [Internet]. 2014 Dec 1;1(1). Available from: https://www.medanthrotheory.org/article/view/4541 Fitzpatrick, KK, Lock, J. Anorexia nervosa. BMJ clinical evidence, 2009; 1011. Available from: https://pubmed.ncbi.nlm.nih.gov/19445758/ Frostad S, Rozakou-Soumalia N, Dârvariu Ş, Foruzesh B, Azkia H, Larsen MP, et al. BMI at Discharge from Treatment Predicts Relapse in Anorexia Nervosa: A Systematic Scoping Review. Journal of Personalized Medicine [Internet]. 2022 May 20;12(5):836. Available from: https://doi.org/10.3390/jpm12050836 Hennegan J, Winkler IT, Bobel C, Keiser D, Hampton J, Larsson G, et al. Menstrual health: a definition for policy, practice, and research. Sexual and Reproductive Health Matters [Internet]. 2021 Jan 1;29(1):31–8. Available from: https://doi.org/10.1080/26410397.2021.1911618 Koller D, Pathak GA, Wendt FR, Tylee DS, Levey DF, Overstreet C, et al. Epidemiologic and genetic associations of endometriosis with depression, anxiety, and eating disorders. JAMA Network Open [Internet]. 2023 Jan 18;6(1). Available from: https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2800556 Martini MG, Solmi F, Krug I, Karwautz A, Wagner G, Fernandez-Aranda F, et al. Associations between eating disorder diagnoses, behaviors, and menstrual dysfunction in a clinical sample. Archives of Women S Mental Health [Internet]. 2015 Sep 23;19(3):553–7. Available from: https://doi.org/10.1007/s00737-015-0576-2 Milano W, Paola A, Carizzone F, et al. Menstrual disorders related to eating disorders. Endocrine, Metabolic & Immune Disorders. 2022;22(5):471-480. Available from: https://doi.org/10.2174/1871530321666210625145345 Morgan HG, Hayward AE. Clinical assessment of anorexia nervosa. The British Journal of Psychiatry [Internet]. 1988 Mar 1;152(3):367–71. Available from: https://pubmed.ncbi.nlm.nih.gov/3167372/ Morgan, HG, Russell, GF. (1975). Value of family background and clinical features as predictors of long-term outcome in anorexia nervosa: four-year follow-up study of 41 patients. Psychological medicine. 1975; 5(4): 355–371. Available from: https://doi.org/10.1017/s0033291700056981 Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis. International Journal of Qualitative Methods [Internet]. 2017 Oct 2;16(1). Available from: https://doi.org/10.1177/1609406917733847 Panariello F, Borgiani G, Bronte C, Cassero G, Montanari G, Falcieri M, et al. Eating Disorders and Disturbed Eating Behaviors Underlying Body Weight Differences in Patients Affected by Endometriosis: Preliminary Results from an Italian Cross-Sectional Study. International Journal of Environmental Research and Public Health [Internet]. 2023 Jan 18;20(3). Available from: https://www.mdpi.com/1660-4601/20/3/1727 Peebles I, Cronje JL, Clark L, Sharpe H, Duffy F. Experiences of inpatient eating disorder admissions: A systematic review and meta-synthesis. Eating Behaviors [Internet]. 2023 May 23;50:101753. Available from: https://doi.org/10.1016/j.eatbeh.2023.101753 Pinheiro AP, Thornton LM, Plotonicov KH, Tozzi F, Klump KL, Berrettini WH, et al. Patterns of menstrual disturbance in eating disorders. International Journal of Eating Disorders [Internet]. 2007 May 11;40(5):424–34. Available from: https://doi.org/10.1002/eat.20388 Porter H. (a) Menstrual Health in Psychiatric Inpatient Settings. National Survivor User Network. May 2024. Available from: https://www.nsun.org.uk/resource/menstrual-health-in-psychiatric-inpatient-settings-2024/ Porter H. (b) “It’s a horrible place to have a period”: a survivor-led investigation of experiences of menstrual health in psychiatric inpatient settings in England. International Journal of Mental Health. 2024. In press. Porter H. (c) “It’s a horrible place to have a period”. Asylum Magazine. 2024 Sept; Available from: https://asylummagazine.org/2024/09/its-a-horrible-place-to-have-a-period-by-hat-porter/ Rance N, Moller NP, Clarke V. ‘Eating disorders are not about food, they’re about life’: Client perspectives on anorexia nervosa treatment. Journal of Health Psychology. 2017;22(5):582-594. Available from: https://doi.org/10.1177/1359105315609088 Rankin R, Conti J, Ramjan L, Hay P. A systematic review of people’s lived experiences of inpatient treatment for anorexia nervosa: living in a “bubble.” Journal of Eating Disorders [Internet]. 2023 Jun 9;11(1). Available from: https://doi.org/10.1186/s40337-023-00820-0 Redland D. Psychoanalytic Perspectives on women, menstruation and secondary amenorrhea [Internet]. Routledge eBooks. 2020. Available from: https://doi.org/10.4324/9781003030478 Ross CA. Psychodynamics of eating disorder behavior in sexual abuse survivors. American Journal of Psychotherapy. 2009;63(3):211-226. doi:10.1176/appi.psychotherapy.2009.63.3.211 Saldanha N, Fisher M. Menstrual disorders in adolescents and young adults with eating disorders. Current Problems in Pediatric and Adolescent Health Care . 2022;52(8):101240. Available from: https://doi.org/10.1016/j.cppeds.2022.101240 Schorr M, Miller KK. The endocrine manifestations of anorexia nervosa: mechanisms and management. Nature Reviews Endocrinology. 2016 Nov 4;13(3):174-86. Available from: https://doi.org/10.1038/nrendo.2016.175 Warin M. Abject Relations: Everyday Worlds of Anorexia. www.jstor.org [Internet]. 2010; Available from: https://www.jstor.org/stable/j.ctt5hjbm4 Webb H, Griffiths M, Schmidt U. Experiences of intensive treatment for people with eating disorders: a systematic review and thematic synthesis. Journal of Eating Disorders [Internet]. 2024 Aug 14;12(1). Available from: https://doi.org/10.1186/s40337-024-01061-5 World Health Organisation (2022). WHO statement on menstrual health and rights. Available from: https://www.who.int/news/item/22-06-2022-who-statement-on-menstrual-health-and-rights Zugai JS, Gill K, Molloy L, Raeburn T, Ramjan L. The focus on weight in the inpatient care of anorexia nervosa: A qualitative investigation of consumer perspectives. International Journal of Mental Health Nursing [Internet]. 2023 Oct 13;33(2):388–96. Available from: https://doi.org/10.1111/inm.13242 Footnotes Throughout this article I use gender-free terms to recognise that some females with eating disorders may be prepubescent or postmenopausal, and to be inclusive of transgender and non-binary people with eating disorders. This is not intended to erase the experiences of cisgender men with eating disorders. The study explored experiences across different hospital types, rather than focusing on specific settings, such as child and adolescent or eating disorder services. As the first study on this topic, this broad approach aimed to capture a wider view of psychiatric inpatient experiences. Since many patients have received treatment in multiple ward types, limiting them to report only parts of their experiences was deemed impractical and unhelpful. For participant demography see Porter 2024a and Porter 2024b. Participants were asked to select ethnicity from categories consistent with the UK census Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 09 Apr, 2025 Reviews received at journal 09 Apr, 2025 Reviews received at journal 05 Apr, 2025 Reviewers agreed at journal 26 Mar, 2025 Reviewers agreed at journal 24 Mar, 2025 Reviewers invited by journal 23 Mar, 2025 Submission checks completed at journal 21 Mar, 2025 First submitted to journal 19 Mar, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5994046","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":432921459,"identity":"c68b2f97-80c4-4f33-95c4-c1605cbf13a5","order_by":0,"name":"Hat Porter","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA2ElEQVRIiWNgGAWjYBACAziLmfkAkJSQIUILM1QnO1sCSAsPCVr4ecA2EtZizn7+2IOPe/7ImTfzfH51o8aCh4H98NEN+LRY9iSzG854ZmAsc5h3m3XOMaDDeNLSbuB12IFkNmmeAwaJM5h5txnnsAG1SPCY4ddy/jFYS/0MZp5nxjn/iNFyA2JLggQzD/Pj3DaitDw2N5xxwNhwBjObGXNunwQPG0G/nE989uDDATl5Cf7Djz/nfKuT42c/fAyvFiBggzMkULjEaGH+QITqUTAKRsEoGIEAABGqQIBsMPmYAAAAAElFTkSuQmCC","orcid":"","institution":"","correspondingAuthor":true,"prefix":"","firstName":"Hat","middleName":"","lastName":"Porter","suffix":""}],"badges":[],"createdAt":"2025-02-09 18:53:12","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5994046/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5994046/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":79261429,"identity":"6c298042-6fd4-4971-91b4-ced458768336","added_by":"auto","created_at":"2025-03-26 09:37:27","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":485386,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5994046/v1/0d424fd0-01d7-4c5b-b70f-1d5d270ea7c4.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Experiences of menstrual health and amenorrhoea in eating disorder inpatient units in England: a subgroup analysis from a lived experience led, qualitative study","fulltext":[{"header":"Plain English summary ","content":"\u003cp\u003eThe loss of menstrual periods was once considered a criterion for anorexia. Although this has been removed from the diagnostic criteria, it remains important to consider menstruation for patients with eating disorders (who menstruate or would be expected to menstruate). However, there is a lack of research which considers the experiences of loss and resumption of periods for people with eating disorders, or how this is addressed by eating disorder services.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis article reports a subgroup analysis \u0026ndash; an analysis conducted on a subsection of participants within a larger study \u0026ndash; of experiences of menstruation in eating disorder inpatient settings in England. Data was collected through interviews with patients and questionnaire completed by staff and patients. A process called thematic analysis was used to identify two themes which reflected the participants experiences. The research was conducted by a researcher with experience of the subject matter.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis research highlighted that periods were closely monitored as a measure of health and used to inform treatment and weight targets. This was reported to lead to intrusive practices like making patients show staff their period blood on pads or underwear as proof of their period. Despite the focus on menstruation, patients were not adequately supported with the emotional impact of the return of their periods.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAlthough it is important to consider periods as part of assessment of patients\u0026rsquo; health, this should extend beyond considering the presence or absence of menstruation to understand any other menstrual disorders and the psychological experiences. More research is needed to better understand experiences of menstruation and eating disorders.\u0026nbsp;\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003eFunctional hypothalamic amenorrhea (FHA) – the absence of menstrual periods due to inhibition of the hypothalamic-pituitary-ovarian axis – can be triggered by weight loss, stress, exercise, or a combination of these factors (Chen et al., 2023). Eating disorders, such as anorexia nervosa, can put significant stress on the body and can disrupt menstrual functioning (Schorr and Miller, 2016). Menstrual disruptions can occur across eating disorder subtypes, including anorexia nervosa, binge-eating disorder and bulimia (Algars et al., 2014; Martini et al., 2014; Milano et al., 2022; Pinheiro et al., 2007; Saldanha \u0026amp; Fisher, 2022). However, some patients may continue to menstruate despite having a very low weight, or may resume menstruation at a weight which would not otherwise be considered an ideal physiological environment (Cacciatore et al., 2024). Until 2013, the \u003cem\u003eDiagnostic and Statistical Manual of Mental Disorders\u003c/em\u003e (DSM-IV) included amenorrhea as a diagnostic criterion for anorexia nervosa; those with otherwise equivalent symptoms, but continued menstruation, would be diagnosed with an ‘eating disorder not otherwise specified’ (EDNOS). Although no longer considered within the diagnostic criteria, it remains important to address menstrual status amongst people who would otherwise menstruate\u003csup\u003e[1]\u003c/sup\u003e with eating disorders due to the negative health outcomes associated with amenorrhea. The impact of eating disorders on the menstrual cycle is documented in biomedical and epidemiological studies, however, there is limited qualitative research examining patient experiences of amenorrhea, and its treatment in healthcare settings.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn 2023, I conducted a qualitative study examining experiences of menstrual health in psychiatric inpatient settings\u003csup\u003e[2]\u003c/sup\u003e; this involved interviews and open-text questionnaires with people with lived experience of treatment in inpatient settings and questionnaires with staff working in inpatient settings (Porter, 2024a; Porter, 2024b). Four main themes were identified: the lack of privacy when menstruating in psychiatric inpatient settings; (restrictions in) access to menstrual materials in psychiatric inpatient settings; attitudes and approaches to menstruation; and menstrual support needs and care provision (Porter, 2024a; Porter, 2024b). These were categorised as relating to institutional and interpersonal settings, where patients’ experiences were influenced by the (over)use of restrictive practices, as well as by the interactions they had with staff members. Staff were often reported to express stigmatising attitudes towards menstruation and provide inadequate support with patients’ physical and emotional needs related to problematic menstrual experiences. The study revealed that patients' needs surrounding their menstrual health were largely unsupported, with many participants reporting experiences which may amount to neglect. Restrictions were placed on access to menstrual products and materials (including hot water bottles, medications, toiletries and clothing). The institutional environment and restrictive practices, such as enhanced observations, infringed upon patients’ privacy, making their menstruation visible to staff and those around them. \u0026nbsp;While those who reported experiencing treatment in eating disorder units described the same issues as other participants, some of the restrictions reported were specific to eating disorder services. For example, participants reported distress when being prohibited from using the toilet after meals, which posed additional challenges when menstruating.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eGiven the unique challenges and negative experiences of eating disorder inpatient units (Peebles et al., 2023; Rankin et al., 2023; Webb, Griffiths and Schmidt) and the relationship between eating disorders and menstrual disruptions (e.g. Schorr and Miller, 2016), it is important to understand experiences of the menstrual cycle and inpatient eating disorder treatment. Therefore, a qualitative subgroup analysis was conducted to analyse the data from staff and patients with experience relating to eating disorder inpatient services. This aimed to examine the unique experiences for this patient group.\u0026nbsp;\u003c/p\u003e\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n"},{"header":"Methods","content":"\u003cp\u003eThis paper reports a subgroup analysis of individuals with experience of treatment in inpatient eating disorder services, and staff who work in services providing specialist eating disorder treatment, from a former concurrent triangulation\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003emixed methods study using a qualitative and quantitative questionnaire and semi-structured interviews (Porter, 2024a; Porter, 2024a). A more in-depth description of the study methodology, and the quantitative data, can be found at Porter 2024 a and b.\u0026nbsp;\u003c/p\u003e\u003cp\u003eBoth questionnaires and interview topic schedules were informed by the definition of \u003cem\u003emenstrual health\u003c/em\u003e developed by the Global Menstrual Collective (Hennegan et al., 2021) which supported discussion of each domain of menstrual health. This includes access to information and experiencing an environment free from stigma and shame. The concept of menstrual health reflects the range of experiences related to menstruation, emphasising this as a matter of health, and not merely hygiene (World Health Organisation, 2022).\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003eParticipants:\u003c/em\u003e Lived experienced participants reported experiences of treatment in an eating disorder inpatient service in England within the previous five years were included in the subgroup analysis; participants who mentioned experiences of an eating disorder, but not specialised eating disorder inpatient treatment were not included. Staff participants who reported working in an eating disorder inpatient service in England were included in the subgroup analysis, this included CAMHS units which treat patients with and without eating disorders where it was explicit that eating disorder treatment was provided.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003eEthics:\u003c/em\u003e Ethical approval was granted by the NHS Health Research Authority. Interview participants were offered a peer support debrief session with someone external to the research team following the interview.\u0026nbsp;\u003c/p\u003e\u003cp\u003eData Collection: All data was collected by HP. \u0026nbsp;The questionnaires were distributed in April 2023 and the interviews were conducted in August and September 2023. All interviews were held online at the preference of participants. Interviews were audio recorded and transcribed verbatim.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003eData Analysis:\u0026nbsp;\u003c/em\u003eThe data analysis was conducted by HP.\u0026nbsp;The analysis involved separating the responses of participants who had experienced inpatient eating disorder services and conducting thematic analysis for the qualitative questionnaire responses and interview transcripts. Themes were constructed to reflect experiences which were specific and unique to the eating disorder service context.\u003c/p\u003e\u003cp\u003e\u003cem\u003eReflexivity, positionality and lived experience\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\u003cp\u003eI am a white British, disabled, autistic, non-binary person. I have lived experience of inpatient hospital admissions, including for anorexia treatment; participants were aware of my lived experience positionality. Elsewhere I have shared these experiences including how my menstruation was exposed during inpatient eating disorder treatment due to a policy of weighing patients naked, in only underwear – something I experienced as coercive and traumatic (Porter, 2024c).\u0026nbsp;\u003c/p\u003e\u003cp\u003eA reflexive approach was essential throughout, acknowledging my preexisting knowledge, lived experiences, and the emotional impact of the research, and considering how this shaped my approach to data analysis (Nowell et al., 2017). This included written reflection on my personal experiences, to support explicit identification of accounts which mirrored these experiences and acknowledging how this informed my approach to the research conduct and analysis.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003eFindings\u003c/em\u003e\u003c/p\u003e\u003cp\u003eThere were 13 questionnaire respondents with lived experience of eating disorder inpatient services, two staff questionnaire respondents described experiences of working in CAMHS eating disorder services, and three interviewees reported experiences of eating disorder services (including adult or child and adolescent services) from the original 178 study participants\u003csup\u003e[3]\u003c/sup\u003e.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003eDemographics\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\u003cp\u003eOf the lived experience questionnaire respondents, 12 were female and one identified as “trans masc” [masculine]. Eleven participants were white, one respondent was of mixed/multiple ethnic background, and one identified as ‘other ethnic group’\u003csup\u003e[4]\u003c/sup\u003e. Eight participants were aged between 18-24, two participants were aged 25-34, two 35-44, and one was aged 45-54. Two staff respondents were both nurses working in CAMHS units. Of the interview participants, two were female and one was non-binary. Two were of mixed/multiple ethnic background, and one was white. Two were aged 18-24 and the other was aged 25-34.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003eThematic analysis findings\u003c/em\u003e\u003c/p\u003e\u003cp\u003eTwo themes were derived from the data: conceptualisations of menstruation and ‘health’ in relation to eating disorders and support needs, and care provision related to eating disorders and menstrual health. These themes reflect approaches to assessment of menstruation and its relationship to ‘health’, and the associated support – or lack thereof – patients received.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cstrong\u003e\u003cem\u003eConceptualisations of menstruation and ‘health’ in relation to eating disorders \u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\u003cp\u003eLived experience participants discussed the way that eating disorders intersected with their menstrual health – particularly in the context of the loss and resumption of menstruation (amenorrhea). Menstruation was reported to be closely monitored by staff, who used the presence or absence of menstruation as part of assessments and to inform treatment plans. An interview participant described a shift in the focus of the staff once she had resumed menstruation, at this point, her meal plan was altered and the team began planning for her discharge from the service, although she continued to struggle emotionally.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“It… really reinforced the like… ‘oh, I must be like better now’\u003c/em\u003e \u003cem\u003e[…] everyone was so like, focused on […] ‘we can change like what you're eating’ [and plan for] discharge.\u003c/em\u003e \u003cem\u003eSo I think it maybe kind of stuck with me that they were so focused on like menstrual health as like an indicator of like, how you're actually feeling […] when everyone around you is telling you that it is, like it’s quite difficult to see past that.” –\u0026nbsp;\u003c/em\u003eInterview participant 1, experience of adult eating disorder unit\u003c/p\u003e\u003cp\u003eAs is highlighted in the quotation above, the emphasis placed on menstruation was experienced for some lived experience participants as, not only unhelpful, but having a lasting impact on how they viewed their menstrual cycle and its significance. Additionally, multiple participants reported that they were forced to show staff members the blood on their underwear or menstrual products to provide evidence that they were being honest about the return of their menstrual cycles. \u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“If you started your period again you had to show a member of staff to prove it, so they would adjust what weight you needed to gain to. This is part of the reason I didn't want to come off the pill, as I was mortified about this prospect. I still get mortified and feel disgusting on my period and I do believe a lot of this shame and negative associations with getting my period was internalised from my time inpatient.” –\u0026nbsp;\u003c/em\u003eQuestionnaire participant 3, experience of CAMHS and adult eating disorder units\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e“On eating disorder units especially, like… it'd be like ‘you need to show us your pad like to prove that you're not like faking it [menstruation]’ […] like it still feels really… like no one trusts you.”-\u0026nbsp;\u003c/em\u003eInterview participant 2, experience of CAMHS eating disorder unit and adult acute ward\u003c/p\u003e\u003cp\u003eFurthermore, some lived experience participants described how resuming menstruation, or continuing to have periods throughout their illness, was a challenging experience. Menstruation was positioned as a sign of health which, in the context of their eating disorder, had negative associations.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“It just made me feel dirty and it made me feel like, you know, my body was healthy and I couldn't really cope with that. And even though I'm having a period and it's a good sign as I've got osteoporosis […] It just made me feel like I weighed too much.” –\u0026nbsp;\u003c/em\u003eInterview participant 1, experience of adult eating disorder unit\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“I was afraid that if any other patient knew I was able to menstruate, they would see me as fat and not 'ill enough' to be on an eating disorders ward. I had my own internalised stigma around this, believing that I couldn't really be ill or in need of treatment if my periods hadn't stopped.” –\u0026nbsp;\u003c/em\u003eQuestionnaire participant 5, experience of adult eating disorder unit\u003c/p\u003e\u003cp\u003eThe above quotes emphasis that, although both staff and patients spoke of menstruation being conceptualised as a sign of health, perhaps shaped by ill-driven driven thinking, the emotional significance of menstruation, and the health it may be seen to symbolise, differed from the patient perspective.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cstrong\u003e\u003cem\u003eA lack of support related to eating disorders and menstrual health\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\u003cp\u003eIn contrast to the above theme, participants with experience of eating disorder units reported that staff often overlooked menstruation, and patients’ needs related to this. While this experience was reported by participants across psychiatric setting types, those in eating disorder units discussed this within the context of staff assuming that patients would not menstruate due to the physical consequences of their eating disorders. This assumption – and how menstruation was overlooked – was reported to heighten feelings of shame and self-consciousness for patients who were menstruating.\u003c/p\u003e\u003cp\u003e\u003cem\u003e“Menstruation was not mentioned or any support offered regarding it […] I believe this is due to the assumption that no patients were menstruating due to extremely low BMI and other physical consequences of having an eating disorder” –\u0026nbsp;\u003c/em\u003eQuestionnaire participant 2, experience of adult eating disorder unit\u003c/p\u003e\u003cp\u003e\u003cem\u003e“They just didn’t have them [menstrual products] I think, especially in eating disorder units because in eating disorder units obviously like they expect most people to lose periods and stuff like that. But I get them through very low weight. […] It probably like enhanced like shame that you had around it [menstruation] and stuff as well. I guess like especially in eating disorders units because most people wouldn’t experience them [periods].” –\u0026nbsp;\u003c/em\u003eInterview participant 3, experience of a number of ward types including eating disorder units\u003c/p\u003e\u003cp\u003eParticipants also reported a lack of discussions regarding amenorrhea and how patients’ menstrual cycles may be impacted by their eating disorders – even when this information was specifically requested.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“No one talked to me about how/why my [menstrual] cycle might stop whilst experiencing an eating disorder. When I asked for advice on what to do when my period stopped I was ignored and mocked because it was “my fault”.” –\u0026nbsp;\u003c/em\u003eQuestionnaire participant 7, experience of CAMHS, locked rehabilitation and low secure wards\u003c/p\u003e\u003cp\u003e\u003cem\u003e“In the eating disorder unit, I wasn’t given information on how my menstrual cycle might return, when or if it would be different at first.”\u0026nbsp;\u003c/em\u003e– Questionnaire participant 1, experience of NHS acute wards and private eating disorder unit\u003c/p\u003e\u003cp\u003eThis was reported to negatively affect participants, for example one participant discussed how the way her menstrual pain was dismissed hindered her ability to develop a more positive relationship with her body and food.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“I felt so trapped and it did not help me heal my relationship with my body or food at all, it made me feel my pain was irrelevant, my own feelings were meaningless and that food and periods were associated with pain and discomfort.” –\u0026nbsp;\u003c/em\u003equestionnaire participant 8, experience of CAMHS and adult eating disorder units\u003c/p\u003e\u003cp\u003eFurthermore, for one interview participant, the lack of discussion around her menstrual health meant that her pain, associated with suspected endometriosis, was overlooked by staff.\u0026nbsp;\u003c/p\u003e\u003cp\u003e\u003cem\u003e“I wasn't really given any aftercare for that [resuming menstruation] but for me, my period had been quite linked with my eating disorder, and it was one of the reasons why I… why I got so unwell in the first place. But no one thought to check ‘Oh, how does she feel because it returned’.” –\u0026nbsp;\u003c/em\u003eInterview participant 4, experience of adult eating disorder unit\u003c/p\u003e\u003cp\u003eLater in her interview, she described being in too much pain to attend groups or therapy sessions and feeling too nauseous to eat. Despite her attempts to explain her pain, staff interpreted her withdrawal as being related to her mental health, overlooking the complex interactions between her menstrual health and eating disorder.\u003c/p\u003e\u003cp\u003e\u003cem\u003e“They would always be so quick to assume that you were skipping therapy or meals or socializing because of mental health when it wasn't, it was physical health. Like they didn't seem to understand the connection between the two. Like, you know, on my period […] I won't be able to eat because I just feel so sick. Again, that's not mental health. That's not my eating disorder, that is physical health” –\u0026nbsp;\u003c/em\u003eInterview participant 1, experience of adult eating disorder unit\u003c/p\u003e\u003cp\u003eHowever, the staff questionnaire respondents reported that their services provide support and information to patients, particularly in relation to loss and resumption of menstruation associated with eating disorders.\u0026nbsp;\u003c/p\u003e\u003cp\u003e“\u003cem\u003eYoung people with eating disorders are spoken to about their menstrual history\u003c/em\u003e” – Staff questionnaire respondent 1, Staff Nurse, CAMHS ward\u003c/p\u003e\u003cp\u003e“\u003cem\u003e[I] discuss restarting periods once the body is at a healthier weight. Due to working with children(12-18) with eating disorders\u003c/em\u003e” – Staff questionnaire respondent 2, Clinical Nurse Specialist, ‘CAMHS SEDU’ (presumed to be specialist eating disorder unit)\u003c/p\u003e\u003cp\u003eAlthough staff participants reported that patients would be spoken to about menstruation, the lived experience participants expressed that their practical, physical and emotional needs related to menstruation, were generally not addressed or supported. For some participants, this was described as affecting their attitudes towards menstruation, even following being discharged from hospital, or being unhelpful in their eating disorder recovery. \u0026nbsp;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe two themes: \u0026ldquo;conceptualisations of menstruation and \u0026lsquo;health\u0026rsquo; in relation to eating disorders\u0026rdquo;, and \u0026ldquo;support needs and care provision related to menstruation and eating disorders\u0026rdquo;, reflected that, whilst patients\u0026rsquo; practical, physical and emotional support needs were often reported as being overlooked, menstruation was also closely scrutinised. For some, menstruation was monitored as an indicator of health, and used to inform patient treatment, meal plans and weight targets. Indeed, the Maudsley Method for treatment of anorexia nervosa in adolescents states, \u0026ldquo;\u003cem\u003ethere is no strong argument for increasing their weight further\u003c/em\u003e\u0026rdquo; beyond the weight at which a patient resumes menstruation, even if this is below the average BMI for their age and height (Maudsley Service Manual for Child and Adolescent Eating Disorders, 2016). However, observing one menstrual period is insufficient to assess for regular menstruation. There does not appear to have been any research comparing patient outcomes when resumption of menstruation \u0026ndash; rather than BMI or weight percentiles \u0026ndash; is used an indicator of \u0026lsquo;healthy\u0026rsquo; weight, especially if this occurs at a low weight (e.g. Cacciatore et al., 2024). Conversely, lower BMI at discharge from inpatient anorexia nervosa treatment is associated with increased risk of relapse (Frostad et al, 2022).\u003c/p\u003e \u003cp\u003eResumption of menstruation has also been used to determine treatment outcomes for patients with anorexia nervosa. Originally developed in 1975, The Morgan-Russell Outcome Assessment Schedule (MROAS) (Morgan and Russell, 1975) is a widely used tool for assessing treatment outcomes in patients with anorexia. The MROAS identifies three outcome categories: good, intermediate and poor, based on measurements of body weight and menstruation. A good outcome is indicated by maintenance of a body weight, within 15% of the average body weight, with regular menstrual cycles; an intermediate outcome would be indicated by the same weight gain which has either not been sustained, or where there were continuing menstrual disturbances.\u003c/p\u003e \u003cp\u003eThe fourth question in this subscale relates to \u0026ldquo;attitude to menstruation\u0026rdquo;, where a patient being \"pleased that menstruation has returned\" is seen as a good outcome, whereas an \"active dislike\" of menstruation is considered a sign of \u0026lsquo;sexual maladjustment\u0026rsquo;. This is assessed alongside a patient\u0026rsquo;s interest in marriage and reproducing, denial of libido, and aversion to heterosexual contact (Morgan and Hayward, 1988). The inclusion of this question as part of assessment of \u0026lsquo;sexual dysfunction\u0026rsquo; appears to position \u0026lsquo;attitude towards menstruation\u0026rsquo; as indicative of wider attitudes towards fertility and traditional gender roles in relationships, motherhood, and reproduction. In addition to being problematic in its overt pathologizing of homosexuality and asexuality, this illustrates how menstruation may be viewed in close proximity to its relationship to fertility \u0026ndash; perhaps, not (only) as an indicator of health, but as an indicator of potential reproductive capacities.\u003c/p\u003e \u003cp\u003eResumption of menstruation is an important aim in the treatment of functional hypothalamic amenorrhea in eating disorder patients and should be considered alongside other measures such as hormone levels (Cacciatore et al., 2024). However, the present study highlighted that the way services emphasised menstruation as a marker of health had adverse impacts for patients, including furthering negative associations with menstruation; especially as the emotional challenges of this were not addressed. This finding is consistent with wider research which reflects how patients feel that eating disorder services place focus on markers of health, such as weight, at the expense of recognising the emotional experience of these conditions (Rance, Moller and Clarke, 2017; Zugai et al., 2024). This is especially concerning where this scrutiny of the physical body fuels invasive (and unnecessary) practices, such as forcing patients to show staff period products or underwear to prove they have menstruated.\u003c/p\u003e \u003cp\u003eWhilst resumption of menstruation may represent a reassuring moment in eating disorder treatment from the staff perspective, this was described as creating distress amongst patients where menstruation was equated with feeling \u0026ldquo;fat\u0026rdquo; or \u0026ldquo;dirty\u0026rdquo;. One participant described fearing that they wouldn\u0026rsquo;t be seen as \u0026ldquo;ill enough\u0026rdquo; due to not experiencing amenorrhoea. This highlights the complex meanings that the presence, or absence, of menstruation \u0026ndash; and the health it may be viewed as symbolising \u0026ndash; can hold through the lens of an eating disorder. Indeed, research has illustrated the role that (the absence of) menstruation may play in the construction of anorexic identities, with the loss of menstruation signifying \u0026lsquo;achieving\u0026rsquo; anorexia (Eli, 2014; Warin, 2010). These experiences must also be understood within wider cultural contexts and entrenched menstrual taboo, which shape menstrual attitudes (Barrington et al., 2021). Although it is vital to monitor health markers, these must also be understood within the context of patients\u0026rsquo; psychological wellbeing; the social and cultural factors which shape these experiences; and with caution to not further hyperfocus on the body and its metrics.\u003c/p\u003e \u003cp\u003eWhilst the absence of menstruation is an indicator of poor health, menstruation itself is not an assurance of health; especially where this is associated with painful and disruptive experiences and disorder. Lived experience participants reported receiving little discussion about menstruation, or the health impacts of amenorrhea, beyond scrutiny of the presence/absence of menstruation. One participant reported receiving insufficient support for suspected endometriosis. Her pain, and how it impacted her, was misinterpreted as related to her eating disorder; the emotional connections between her eating disorder, menstrual cycle, and endometriosis were unaddressed. Although findings vary, several studies have reported an increased incidence of eating disorders, and disordered eating, in individuals with endometriosis (Koller et al., 2023; Panariello et al., 2023). Further research is needed to develop understanding of the complex relationships between gynaecological and menstrual conditions, eating disorders, and their aitiology and treatments. However, for eating disorder patients with gynaecological conditions, including problematic menstrual symptoms, there is a need to consider how these relates to their eating disorder and their health holistically. This speaks to the broader need for eating disorder services to take a more holistic approach to patient care, recognising the role of the body and co-occurring conditions in the development and maintenance of eating disorders (Downs, 2024).\u003c/p\u003e \u003cp\u003e Furthermore, participants received a lack of emotional support in dealing with the resumption of menstruation, although this experience was reported to be challenging. There is limited research considering the emotional experiences of menstruation for people with eating disorders. Psychodynamic theories of anorexia have suggested that a desire to supress menstruation may be factor in the development of anorexia due to a fear of womanhood, as symbolised by menarche (Redland, 2020); a desire to deny adult sexuality (Redland, 2020); or due to menstruation presenting a trigger in the context of experiences of childhood sexual abuse (Ross, 2009). Additionally, in a study by Avila, Golden, and Aye (2019) transgender youth (assigned female at birth) with restrictive eating disorders, reported a desire to lose weight in order to suppress menstruation, and alleviate the gender dysphoria associated with it. Eating disorders are complex, and generalisations should not be made about the causes of these. Nevertheless, the present study, and wider research, highlight the need to explore support and treatment options for those with extreme difficulties with menstruation. However, participants in the present study reported receiving a lack of support related to the emotional challenges menstruation posed \u0026ndash; a finding which was consistent across hospital types and not specific to eating disorder units.\u003c/p\u003e \u003cp\u003eThe study outlined in this article did not specifically examine experiences of menstruation in eating disorder units. Although the findings of this subgroup analysis are important as a subsection of the main study, further research will be required to develop a greater understanding of how eating disorder units support patients in relation to their menstrual cycles \u0026ndash; including understanding current practice and considering how services can best support those in their care. Service provision may differ across child and adolescent and adult eating disorder units, and services beyond England. This study focused on experiences of treatment, therefore, there is a need for further research to understand the menstrual experiences of people with eating disorders more broadly; this should consider experience of menopause transition, and the differences in experiences across eating disorder diagnoses.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis article discusses findings of a subgroup qualitative analysis examining experiences of menstruation in eating disorder inpatient settings in England. Two eating disorder-specific subthemes were constructed in addition to the experiences which were reported across inpatient setting types. Across all types of psychiatric inpatient setting, this research highlighted a contradiction in psychiatric inpatient units where menstruation was both highly visible, but also overlooked, and patients\u0026rsquo; needs were often unmet. In the context of experiences of eating disorder services, patients\u0026rsquo; menstrual cycles were closely monitored, with some patients even being forced to show menstrual blood to staff members, whilst not providing adequate support with the physical and emotional aspects of these experiences.\u003c/p\u003e \u003cp\u003eMenstruation is undoubtedly an important consideration when evaluating the physical well-being of patients in eating disorder treatment. However, the focus must go beyond simply equating the return of menstruation with health and recovery. There is a need for eating disorder services to offer more comprehensive support, addressing the emotional significance that menstruation may hold, as well as the influence of underlying gynaecological or menstrual conditions and how these may interact with someone\u0026rsquo;s eating disorder. This includes providing both emotional support and practical treatment options. Additionally, it is vital that assessments of menstrual status do not reinforce negative attitudes towards menstruation or lead to coercive practices, such as forcing patients to display their underwear or menstrual products to staff.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cul\u003e\n \u003cli\u003eCAMHS: Child and adolescent mental health services\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eEDNOS: Eating disorder not otherwise specified \u0026nbsp;\u003c/li\u003e\n \u003cli\u003eFHA: Functional hypothalamic amenorrhoea\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eMROAS: Morgan-Russell Outcome Assessment Schedule\u003c/li\u003e\n \u003cli\u003ePMDD: Pre-menstrual dysphoric disorder\u0026nbsp;\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval for this research was granted through the NHS Health Research Authority research ethics committee. All participants provided informed consent for participation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNone\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research was funded by the National Survivor User Network (NSUN)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWith thanks to Amy Wells and Gabrielle Johnson at NSUN for support throughout this research.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eThis research, including all stages of data collection and analysis, and this subsequent manuscript was conducted and prepared solely by HP.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003e\u0026Aring;lgars M, Huang L, Von Holle AF, Peat CM, Thornton LM, Lichtenstein P, et al. Binge eating and menstrual dysfunction. Journal of Psychosomatic Research [Internet]. 2013 Nov 28;76(1):19\u0026ndash;22. Available from: https://doi.org/10.1016/j.jpsychores.2013.11.011\u003c/li\u003e\n\u003cli\u003eAmerican Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. 2013.\u003c/li\u003e\n\u003cli\u003eAttia E, Roberto CA. Should amenorrhea be a diagnostic criterion for anorexia nervosa? International Journal of Eating Disorders [Internet]. 2009 Jul 20;42(7):581\u0026ndash;9. Available from: https://doi.org/10.1002/eat.20720 \u003c/li\u003e\n\u003cli\u003eAvila J, Golden NH, Aye T. Eating disorder screening in transgender youth. Journal of Adolescent Health. 2019;65(6):815-817. Available from: https://doi.org/10.1016/j.jadohealth.2019.06.011 \u003c/li\u003e\n\u003cli\u003eBarrington DJ, Robinson HJ, Wilson E, Hennegan J. Experiences of menstruation in high income countries: A systematic review, qualitative evidence synthesis and comparison to low- and middle-income countries. PLoS ONE [Internet]. 2021 Jul 21;16(7). Available from: https://doi.org/10.1371/journal.pone.0255001 \u003c/li\u003e\n\u003cli\u003eBraun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology [Internet]. 2006 Jan 1;3(2):77\u0026ndash;101. Available from: https://doi.org/10.1191/1478088706qp063oa \u003c/li\u003e\n\u003cli\u003eCacciatore C, Cangiano B, Carbone E, Spagnoli S, Ramirez MPC, Polli N, et al. Body weight variation is not an independent factor in the determination of functional hypothalamic amenorrhea in anorexia nervosa. Journal of Endocrinological Investigation [Internet]. 2023 Oct. Available from: https://doi.org/10.1007/s40618-023-02207-z \u003c/li\u003e\n\u003cli\u003eChen L, Lu Y, Zhou Y, et al. The effects of weight loss-related amenorrhea on women\u0026rsquo;s health and the therapeutic approaches: a narrative review. \u003cem\u003eAnnals of Translational Medicine\u003c/em\u003e. 2023;11(2):132. Available from: https://doi.org/10.21037/atm-22-6366 \u003c/li\u003e\n\u003cli\u003eDowns J. The body is not just impacted by eating disorders \u0026ndash; biology drives them. Trends in Molecular Medicine [Internet]. 2024 Mar 9;30(4):301\u0026ndash;4. Available from: https://www.researchgate.net/publication/378861869_The_body_is_not_just_impacted_by_eating_disorders_-_biology_drives_them \u003c/li\u003e\n\u003cli\u003eEisler I, Simic M, Blessitt E, Dodge L and \u0026ldquo;team\u0026rdquo;. Maudsley Service Manual for Child and Adolescent Eating Disorders. 2016. Accessed 26 September 2024. Available from: https://mccaed.slam.nhs.uk/wp-content/uploads/2019/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf \u003c/li\u003e\n\u003cli\u003eEli K. An embodied belonging. Medicine Anthropology Theory [Internet]. 2014 Dec 1;1(1). Available from: https://www.medanthrotheory.org/article/view/4541 \u003c/li\u003e\n\u003cli\u003eFitzpatrick, KK, Lock, J. Anorexia nervosa. BMJ clinical evidence, 2009; 1011. Available from: https://pubmed.ncbi.nlm.nih.gov/19445758/ \u003c/li\u003e\n\u003cli\u003eFrostad S, Rozakou-Soumalia N, D\u0026acirc;rvariu Ş, Foruzesh B, Azkia H, Larsen MP, et al. BMI at Discharge from Treatment Predicts Relapse in Anorexia Nervosa: A Systematic Scoping Review. Journal of Personalized Medicine [Internet]. 2022 May 20;12(5):836. Available from: https://doi.org/10.3390/jpm12050836 \u003c/li\u003e\n\u003cli\u003eHennegan J, Winkler IT, Bobel C, Keiser D, Hampton J, Larsson G, et al. Menstrual health: a definition for policy, practice, and research. Sexual and Reproductive Health Matters [Internet]. 2021 Jan 1;29(1):31\u0026ndash;8. Available from: https://doi.org/10.1080/26410397.2021.1911618 \u003c/li\u003e\n\u003cli\u003eKoller D, Pathak GA, Wendt FR, Tylee DS, Levey DF, Overstreet C, et al. Epidemiologic and genetic associations of endometriosis with depression, anxiety, and eating disorders. JAMA Network Open [Internet]. 2023 Jan 18;6(1). Available from: https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2800556 \u003c/li\u003e\n\u003cli\u003eMartini MG, Solmi F, Krug I, Karwautz A, Wagner G, Fernandez-Aranda F, et al. Associations between eating disorder diagnoses, behaviors, and menstrual dysfunction in a clinical sample. Archives of Women S Mental Health [Internet]. 2015 Sep 23;19(3):553\u0026ndash;7. Available from: https://doi.org/10.1007/s00737-015-0576-2\u003c/li\u003e\n\u003cli\u003eMilano W, Paola A, Carizzone F, et al. Menstrual disorders related to eating disorders. Endocrine, Metabolic \u0026amp; Immune Disorders. 2022;22(5):471-480. Available from: https://doi.org/10.2174/1871530321666210625145345 \u003c/li\u003e\n\u003cli\u003eMorgan HG, Hayward AE. Clinical assessment of anorexia nervosa. The British Journal of Psychiatry [Internet]. 1988 Mar 1;152(3):367\u0026ndash;71. Available from: https://pubmed.ncbi.nlm.nih.gov/3167372/ \u003c/li\u003e\n\u003cli\u003eMorgan, HG, Russell, GF. (1975). Value of family background and clinical features as predictors of long-term outcome in anorexia nervosa: four-year follow-up study of 41 patients. Psychological medicine. 1975; 5(4): 355\u0026ndash;371. Available from: https://doi.org/10.1017/s0033291700056981 \u003c/li\u003e\n\u003cli\u003eNowell LS, Norris JM, White DE, Moules NJ. Thematic analysis. International Journal of Qualitative Methods [Internet]. 2017 Oct 2;16(1). Available from: https://doi.org/10.1177/1609406917733847\u003c/li\u003e\n\u003cli\u003ePanariello F, Borgiani G, Bronte C, Cassero G, Montanari G, Falcieri M, et al. Eating Disorders and Disturbed Eating Behaviors Underlying Body Weight Differences in Patients Affected by Endometriosis: Preliminary Results from an Italian Cross-Sectional Study. International Journal of Environmental Research and Public Health [Internet]. 2023 Jan 18;20(3). Available from: https://www.mdpi.com/1660-4601/20/3/1727 \u003c/li\u003e\n\u003cli\u003ePeebles I, Cronje JL, Clark L, Sharpe H, Duffy F. Experiences of inpatient eating disorder admissions: A systematic review and meta-synthesis. Eating Behaviors [Internet]. 2023 May 23;50:101753. Available from: https://doi.org/10.1016/j.eatbeh.2023.101753 \u003c/li\u003e\n\u003cli\u003ePinheiro AP, Thornton LM, Plotonicov KH, Tozzi F, Klump KL, Berrettini WH, et al. Patterns of menstrual disturbance in eating disorders. International Journal of Eating Disorders [Internet]. 2007 May 11;40(5):424\u0026ndash;34. Available from: https://doi.org/10.1002/eat.20388\u003c/li\u003e\n\u003cli\u003ePorter H. (a) Menstrual Health in Psychiatric Inpatient Settings. National Survivor User Network. May 2024. Available from: https://www.nsun.org.uk/resource/menstrual-health-in-psychiatric-inpatient-settings-2024/ \u003c/li\u003e\n\u003cli\u003ePorter H. (b) \u0026ldquo;It\u0026rsquo;s a horrible place to have a period\u0026rdquo;: a survivor-led investigation of experiences of menstrual health in psychiatric inpatient settings in England. International Journal of Mental Health. 2024. In press. \u003c/li\u003e\n\u003cli\u003ePorter H. (c) \u0026ldquo;It\u0026rsquo;s a horrible place to have a period\u0026rdquo;. Asylum Magazine. 2024 Sept; Available from: https://asylummagazine.org/2024/09/its-a-horrible-place-to-have-a-period-by-hat-porter/ \u003c/li\u003e\n\u003cli\u003eRance N, Moller NP, Clarke V. \u0026lsquo;Eating disorders are not about food, they\u0026rsquo;re about life\u0026rsquo;: Client perspectives on anorexia nervosa treatment. Journal of Health Psychology. 2017;22(5):582-594. Available from: https://doi.org/10.1177/1359105315609088 \u003c/li\u003e\n\u003cli\u003eRankin R, Conti J, Ramjan L, Hay P. A systematic review of people\u0026rsquo;s lived experiences of inpatient treatment for anorexia nervosa: living in a \u0026ldquo;bubble.\u0026rdquo; Journal of Eating Disorders [Internet]. 2023 Jun 9;11(1). Available from: https://doi.org/10.1186/s40337-023-00820-0 \u003c/li\u003e\n\u003cli\u003eRedland D. Psychoanalytic Perspectives on women, menstruation and secondary amenorrhea [Internet]. Routledge eBooks. 2020. Available from: https://doi.org/10.4324/9781003030478 \u003c/li\u003e\n\u003cli\u003eRoss CA. Psychodynamics of eating disorder behavior in sexual abuse survivors. American Journal of Psychotherapy. 2009;63(3):211-226. doi:10.1176/appi.psychotherapy.2009.63.3.211\u003c/li\u003e\n\u003cli\u003eSaldanha N, Fisher M. Menstrual disorders in adolescents and young adults with eating disorders. \u003cem\u003eCurrent Problems in Pediatric and Adolescent Health Care\u003c/em\u003e. 2022;52(8):101240. Available from: https://doi.org/10.1016/j.cppeds.2022.101240 \u003c/li\u003e\n\u003cli\u003eSchorr M, Miller KK. The endocrine manifestations of anorexia nervosa: mechanisms and management. Nature Reviews Endocrinology. 2016 Nov 4;13(3):174-86. Available from: https://doi.org/10.1038/nrendo.2016.175 \u003c/li\u003e\n\u003cli\u003eWarin M. Abject Relations: Everyday Worlds of Anorexia. www.jstor.org [Internet]. 2010; Available from: https://www.jstor.org/stable/j.ctt5hjbm4 \u003c/li\u003e\n\u003cli\u003eWebb H, Griffiths M, Schmidt U. Experiences of intensive treatment for people with eating disorders: a systematic review and thematic synthesis. Journal of Eating Disorders [Internet]. 2024 Aug 14;12(1). Available from: https://doi.org/10.1186/s40337-024-01061-5\u003c/li\u003e\n\u003cli\u003eWorld Health Organisation (2022). WHO statement on menstrual health and rights. Available from: https://www.who.int/news/item/22-06-2022-who-statement-on-menstrual-health-and-rights \u003c/li\u003e\n\u003cli\u003eZugai JS, Gill K, Molloy L, Raeburn T, Ramjan L. The focus on weight in the inpatient care of anorexia nervosa: A qualitative investigation of consumer perspectives. International Journal of Mental Health Nursing [Internet]. 2023 Oct 13;33(2):388\u0026ndash;96. Available from: https://doi.org/10.1111/inm.13242 \u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Footnotes","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003e Throughout this article I use gender-free terms to recognise that some females with eating disorders may be prepubescent or postmenopausal, and to be inclusive of transgender and non-binary people with eating disorders. This is not intended to erase the experiences of cisgender men with eating disorders.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e The study explored experiences across different hospital types, rather than focusing on specific settings, such as child and adolescent or eating disorder services. As the first study on this topic, this broad approach aimed to capture a wider view of psychiatric inpatient experiences. Since many patients have received treatment in multiple ward types, limiting them to report only parts of their experiences was deemed impractical and unhelpful.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e For participant demography see Porter 2024a and Porter 2024b.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e Participants were asked to select ethnicity from categories consistent with the UK census\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Menstruation, amenorrhoea, inpatient treatment, lived experience, patient perspectives","lastPublishedDoi":"10.21203/rs.3.rs-5994046/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5994046/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eAlthough no longer specified within the diagnostic criteria for anorexia nervosa, the prevalence of menstrual disturbances among patients with eating disorders is well-documented. However, there is limited research examining patient experiences of amenorrhoea and eating disorders, or addressing how the topic is approached by eating disorder services. This article presents a subgroup analysis of a qualitative study, which examined experiences of menstrual health in psychiatric inpatient settings. The study\u0026rsquo;s main findings remain relevant to eating disorder services, however, this article presents an additional subgroup analysis which identified two themes from participants with experience of inpatient eating disorder services.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eThematic analysis was used to analyse qualitative data generated through questionnaires with staff and people with lived experience of inpatient settings and interviews with people with lived experience. An additional subgroup analysis was conducted to further explore the experiences which were specific to the eating disorder context.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThree interviewees, 13 lived experience and two staff questionnaire respondents had experience related to eating disorder services. Eating disorder services were reported to place significant emphasis on the menstrual cycle as a marker of health, informing patient meal plans and weight targets. However, the emotional impact of managing the return of menstruation, and its significance within the context of their eating disorder, was not adequately addressed. Invasive practices of forcing patients to display used menstrual products to staff, as evidence of their menstruation, were reported.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThe menstrual cycle is an important consideration in the treatment of patients with eating disorders, however, this should extend beyond monitoring the presence or absence of menstrual cycles to consider a more holistic perspective of menstrual health. This should include provision of information; how menstrual and gynaecological conditions may interact with someone\u0026rsquo;s eating disorder; and addressing psychological and emotional needs related to menstruation in eating disorder treatment and recovery. Further research is needed to understand these experiences in greater depth.\u003c/p\u003e","manuscriptTitle":"Experiences of menstrual health and amenorrhoea in eating disorder inpatient units in England: a subgroup analysis from a lived experience led, qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-03-26 09:29:18","doi":"10.21203/rs.3.rs-5994046/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-04-10T03:29:33+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-10T02:08:34+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-06T01:53:30+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"160154707777999418424437679796066253763","date":"2025-03-26T04:18:30+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"194017747147092690747850628580966975693","date":"2025-03-24T05:25:03+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-03-24T00:46:25+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-03-21T16:40:42+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Eating Disorders","date":"2025-03-19T10:47:01+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"df0d160c-f9ec-4a35-945e-705ae0f03c68","owner":[],"postedDate":"March 26th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-04-16T06:38:40+00:00","versionOfRecord":[],"versionCreatedAt":"2025-03-26 09:29:18","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5994046","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5994046","identity":"rs-5994046","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}