Can general exercise be used as an empowering tool among women with endometriosis? 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Experiences and practice among women with endometriosis and women’s health physiotherapists Merete Tennfjord, Rakel Gabrielsen, Kari Bø, Marie Ellström Engh, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4010890/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 12 Sep, 2024 Read the published version in BMC Women's Health → Version 1 posted 10 You are reading this latest preprint version Abstract Background The potential benefit of exercise to alleviate symptoms of endometriosis is unclear. Still, exercise may be used to empower women and manage disease symptoms. The purpose of this study was twofold: 1) to explore how general exercise is experienced among women with endometriosis and 2) to assess whether women’s health physiotherapists are implementing exercise in their treatment. Methods Qualitative interviews were performed with 19 women with endometriosis, recruited after cessation of a randomized controlled trial (RCT), testing the effect of exercise as self-management (10 from the exercise group and nine from the control group). Responses to the question “Did participation in the study change your view of exercise as part of the treatment for endometriosis?“ were analyzed. In addition, a cross-sectional survey was performed among women's health physiotherapists working in the Nordic countries (n = 108), exploring their practice of manual treatments and supervised general exercise for endometriosis patients. Associations with manual and combined treatments of manual treatment and supervised regular general exercise were explored in relation to experience in women's health, assumed patient severity, and working in an interdisciplinary setting. Chi-square tests were used. Results From the RCT, the women from the exercise and control groups brought forward the importance of knowledge about the benefits of exercise to make informed decisions in disease management. The women in the exercise group described how exercise was perceived as less frightening and manageable when exposed to various intensities and types of exercises in a safe and supportive environment. The supervised exercise brought an extra dimension of belonging through group participation. From the survey, 75% of the physiotherapists stated to offer manual treatments only, whereas 24% combined manual treatments with regular supervised general exercise training individually or in groups. No differences between groups related to the variables of interest were found. Conclusions To experience exercise as safe and non-threatening, creating a sense of belonging through regular supervision and guidance is essential. Still, few women's health physiotherapists offer exercise for self-management of pain as part of their daily practice in treating women with endometriosis. Trial registration NCT05091268 Endometriosis empowerment exercise pelvic pain physical activity physiotherapy Figures Figure 1 Background Endometriosis is a benign gynecological disease characterized by chronic inflammation, defined by endometrial-like tissue outside the uterus ( 1 ). The exact prevalence is not known, but it is estimated that up to 10% of women of fertile age may suffer ( 2 ). The main symptom associated with the disease is pain with menstruation (dysmenorrhea) ( 1 ). However, pain with intercourse (dyspareunia), chronic pelvic pain, fatigue, and loss of quality of life are also symptoms often found among women with endometriosis ( 1 ). Non-pharmacological and non-surgical treatments may be an adjunct or an alternative to the current medical treatments to relieve endometriosis symptoms. One such treatment may be exercise. A recent study reported that 42% of women with endometriosis use exercise as a self-management tool ( 3 ). However, the same study also reported that 36% of the women lack information on self-management strategies to make informed decisions about their disease management. The World Health Organization defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” ( 4 ). Furthermore, empowerment includes participation with others to achieve goals and access resources ( 5 ). A former qualitative study among women with endometriosis found that knowledge about one’s body is a prerequisite for feeling empowered ( 6 ). However, the knowledge deficit around endometriosis from healthcare professionals and society, resulting in a lack of agency to understand and learn active coping strategies, may result in women feeling disempowered and cause poor mental health ( 6 , 7 ). Exercise training has been defined as any bodily activity that is planned, structured, and repetitive to condition the body ( 8 ) and is well-known to benefit both mental health and reduce the risk of many medical conditions ( 9 ). Physiotherapists may help women develop, maintain, and restore movement, activity, and participation for self-management of pain and to improve quality of life ( 10 ). Women's health physiotherapists have been especially viewed as an essential part of the treatment package by patients with endometriosis ( 11 ). International treatment guidelines for endometriosis recommend research into evidence-based approaches to support self-management, such as exercise ( 1 ). Moreover, patient satisfaction has been included as a core outcome measure in future endometriosis interventions ( 12 ). However, limited knowledge exists about this population's satisfaction from participation in exercise interventions ( 13 ). Furthermore, since there are no guidelines to support exercise as a treatment option for women with endometriosis ( 1 ), there needs to be more knowledge of whether and how physiotherapists implement exercise as part of their treatment strategy. Anchoring the theoretical framework in empowerment theory, this study combines methods of qualitative and quantitative data to 1) explore how general exercise training is experienced among women with endometriosis and 2) assess whether women's health physiotherapists are implementing exercise training in their treatment. Methods Design This study was built on qualitative interviews of women with endometriosis after participating in a two-armed parallel group randomized controlled trial (RCT). The primary aim of the RCT is to assess the effect of pain education and exercise versus pain education alone on genito-pelvic pain. In addition, a quantitative cross-sectional survey was conducted among women's health physiotherapists working in the Nordic countries. The different environments and populations in which exercise training is to be implemented are essential for our understanding when planning future evidence-based models among women with endometriosis. Thus, combining data from two different population settings allowed us to explore experiences with exercise training after participating in an RCT (research question 1) and explore women's health physiotherapists' practice of implementing general exercise training as part of their treatment strategy (research question 2). The study was approved by the Regional Medical Ethics Committee (date of approval 22.10.2019; reference number 2019/1236) and the Data Protection Officer at Akershus University Hospital (2019_135). Qualitative interviews Research question 1 How do women with endometriosis experience general exercise training to empower and manage disease symptoms? Participants This qualitative study included a convenience sample of 19 women from both treatment arms after participating in an RCT for four months (Fig. 1 ). These were recruited from a total of 81 women aged 18–45 with signs of endometriosis confirmed by laparoscopy. The total sample of 81 women was recruited from two Norwegian specialized hospitals for endometriosis care in Oslo and through the Norwegian Endometriosis Association between January 2022 and January 2023. The participating women had to present with genito-pelvic pain, be able to understand and speak the Norwegian language and be able to participate in exercise classes. Exclusion criteria were severe pathology (malignancy), cardiovascular conditions and immune system diseases diagnosed by a specialist, pregnancy, childbirth in the last 12 months, and breastfeeding, and severe psychiatric disorders and personality disorders diagnosed by a specialist. In addition, women who had undergone intra-abdominal or vaginal surgery, receiving Botox injections into the pelvic area, or those recently started or adjusting ongoing hormonal therapy had to wait 4–6 months before being included in the study. Relevant background information and informed consent were handled through Nettskjema.no, a secure online assessment tool developed and hosted by the University of Oslo, Norway. Intervention description All 19 participants attended a four-hour interdisciplinary pain management course run by a physiotherapist, gynecologist, and psychologist at Akershus University Hospital (March and April 2022). The pain management course had a biopsychosocial approach emphasizing general exercise as an empowering tool. In addition, the course focused on pelvic floor muscle training (PFMT) to manage pelvic floor pain. Information about surgical and medical treatments for endometriosis was also provided. After the pain management course, the women were randomized to either an exercise or control group in blocks of two and four through the Blockrand package in R. A statistician handled the randomization sequence, while the allocation of participants into the exercise or control group was performed by a project member not involved in the recruitment of the participants. The exercise group then attended a 60-minute weekly group training session led by three physiotherapists with specialist training in women's health. The exercise lasted four months and was held at three private physiotherapy institutes in and around Oslo. The group training was designed as circular training, including a 10-minute warm-up, followed by a combination of low to moderate- and moderate to high-intensity aerobic training and muscular strength training of large muscle groups, including PFMT for 40 minutes, in addition to flexibility and relaxation training for 10 minutes (Additional File 1). The exercise group was also asked to perform an individually tailored progressive home exercise program over the same period following the same exercises and principles as for the group exercise. Recommendations for weekly exercise followed the American guidelines for physical activity for adults: 30 minutes 5 times per week with low to moderate-intensity aerobic exercise or 20 minutes 3 times with moderate to high-intensity aerobic exercise ( 14 ). Recommendations for strength training were ten repetitions in 3 sets, 2 to 3 times per week, with training of large muscle groups. PFMT was recommended daily. Monitoring and adjusting training intensity were done following the principle of 2–3 repetitions in reserve for muscular strength training ( 15 ) and the Borg rating of perceived exertion ( 16 ). The intensity, number, and length of home training sessions and any adverse effects were recorded through a training diary. The participants in the control group received no further follow-up after participation in the pain management course and were encouraged not to change exercise habits during the four-month intervention period. Procedure for the Qualitative Study Interviews were performed within one month after the end of the intervention period among ten women from the exercise group and nine women from the control group (Fig. 1 ). Each interview started with verbal information about the participants' voluntary and ethical rights. The interviews were performed in a private room at Akershus University Hospital between August and November 2023, with one female researcher (MKT) present. The researcher was not blinded to group allocation and not involved in the participants' recruitment, assessment, or training, but attended the pain management course. However, with the background in physiotherapy, preconceptions and preunderstandings about the topic could subconsciously have influenced the interviewer to seek confirmation of any prior beliefs. To avoid this, the interviewer consciously decided to take an open and active role and follow any cues the participants provided during the interviews. The interviews lasted 30–90 minutes and were recorded and stored using a secure Dictaphone application created with Nettskjema.no, an online assessment tool developed and hosted by the University of Oslo, Norway. In addition, notes on nonverbal behavior were taken. The interview guide was semi-structured, and a user representative from the Norwegian Endometriosis Association participated in preparing the interview guide. The guide included several questions related to their subjective experiences after participation in the project (Additional File 2). For this specific study, the following questions were asked: “Did participation in this study change your view of exercise as part of the treatment for endometriosis?” and “What are your perspectives on developing the best possible care for the treatment of endometriosis?” The researcher followed up with questions like: “How?” and “In what way?” to gain additional knowledge about their views and experiences. At the end of the interview, the women were asked to add anything that had yet to be discussed. The transcripts were written verbatim and supplemented by notes on nonverbal behaviors before being sent to each participant with an opportunity to read and correct the data sampled. The qualitative design was based on descriptive phenomenology, taking an interpretative approach ( 17 ). We consciously kept an open and reflective attitude throughout the research process, emphasizing meanings to concrete expressions and descriptive text ( 18 ). We used an inductive thematic analysis to explore these patterns of meanings from the participant's stories following the six steps proposed by Braun and Clarke: achieving familiarity with the data through open-minded reading while searching for meanings and themes before organizing themes into meanings of lived experiences ( 19 ). The data were coded, and themes were categorized using NVivo ( 20 ). All authors agreed upon the themes and statements chosen while considering the study's aim. Statements were translated from Norwegian to English and slightly edited for better readability while remaining as close to the original statements as possible. The participants received fictitious names to ensure anonymity. The study follows the Standards for Reporting Qualitative Research ( 21 ) and the Consolidated Standards of Reporting Trails where appropriate ( 22 ). Cross-sectional survey Research question 2 Do physiotherapists implement general exercise to treat and empower women with endometriosis symptoms? Participants In the period January 2020 to August 2022, women’s health physiotherapists from the Nordic countries (Norway, Sweden, Denmark, Iceland, and Finland) were asked to participate in an online survey to assess their daily practice of including exercise training in their treatment of women with endometriosis. Inclusion criteria were being a physiotherapist treating or not treating women with endometriosis and being willing to answer a questionnaire in Norwegian or English. The survey was emailed to members of the physiotherapy association subgroup of women’s health in the respective country and posted on membership social media accounts. Members of the respective women’s health subgroups are approximately 230 in Norway and Denmark, about 300 in Finland and Iceland, respectively, and about 1000 members in Sweden. However, there is no overview of the actual number of physiotherapists treating women with endometriosis. Thus, the response rate will not be appropriate to calculate. The survey was anonymous, and Nettskjema.no handled data, including informed consent. Procedure for the survey The survey was developed by the researchers (MKT, RG, and KB) (Additional File 3). Before answering the survey, control questions included were: "Are you a physiotherapist?" and "Do you treat women with endometriosis?" with alternatives being "yes" or "no." If the respondents answered "no" to the latter question, reasons for non-treatment were asked. Background data, the type of treatment offered or advised, and dosage were asked and presented with numbers and percentages. The types of treatments were categorized into supervised general training and manual treatment. Supervised exercise training included both general exercise training and specific PFMT to be performed individually at the clinic and in groups, thus exploring empowerment through regular guidance and participation with others ( 5 , 23 ). We are unaware of studies including the effect of PFMT as part of their intervention ( 13 ), and no specific guidelines exist for the inclusion of PFMT as part of a general exercise regime for women with endometriosis ( 1 ). However, PFMT may reduce PFM tone in women experiencing PFM pain ( 24 ) and was therefore viewed as part of the general exercise training offered. Manual treatments included internal vaginal and rectal treatments and external treatments of pelvic musculature. However, since few physiotherapists offer supervised general exercise training only (n = 9) and more often combined with manual treatments, we decided to group combined treatments of manual treatment and regular general supervised exercise, including PFMT, defined as ≥once a week (n = 23). Thus, Chi-square tests were used to explore the association between manual treatments only and combined treatments of manual treatment and regular general supervised exercise training, including PFMT with relevant background characteristics. The background characteristics were dichotomized based on clinical reasoning and allowed us to study if more experience in the field (> 10 years versus 60% versus < 60% work) was associated with higher use of supervised exercise training versus manual treatment only. Further, we hypothesized that working in an interdisciplinary team would make physiotherapists take a more active role, thus promoting supervised general exercise training. Lastly, working in private practice versus hospital and treating patients referred from private gynecologists and general practitioners versus patients referred from the specialist health care service would include more supervised exercise training due to less severe patients. P≤0.05 was considered significant. The study follows the guidelines for reporting cross-sectional studies ( 25 ). Results Qualitative interviews Research question 1: How do women with endometriosis experience general exercise training to empower and manage disease symptoms? Study participants Altogether, a convenience sample of the first 27 of the 81 women with endometriosis participating in the main trial were asked to participate in this qualitative interview (Figure 1). Of those asked, ten women from the training group and nine from the control group agreed to participate. Reasons for non-response are provided in Figure 1. Background characteristics of women allocated to the exercise group or the control group are provided in Table 1. The training diaries for the exercise group revealed that during the intervention, the women exercised 160 minutes per week on average (aerobic exercise and muscular-strengthening training), ranging from 44 minutes up to 428 minutes, which was split into an average of 5.7 sessions a week of various lengths per woman. The reported average level of intensity on the Borg scale was 12.7, indicating low to moderate intensity (26). The level of intensity ranged from 10 up to 16, where two women exercised on level 16, indicating moderate to high intensity (26). There were no reports of adverse advents. The control group reported no change in exercise patterns during the four-month intervention period. Table 1. Background characteristics of women with endometriosis participating in a randomized controlled trial. Data presented as frequencies with range. N=19 All women participating n=19 Exercise group n=10 Control group n=9 Age (years) 30.8 (20-40) 30.3 (22-40) 31.4 (20-38) Years since diagnosis 4.7 (2-13) 5.2 (2-13) 4 (2-7) a Pain score* 6.5 (3-10) 6.6 (3-8) 6.4 (3-10) Higher educational level (bachelor and master) 11 6 5 Number of women with children 3 2 1 Relationship status Married or in a relationship 15 8 7 Single 4 2 2 Employment Full-time or part-time work 13 7 6 Student 2 1 1 Sick leave 3 1 2 Disability aid 1 1 0 Exercisers Regular strength exercisers (>2 times/week) 4 1 3 Regular endurance exercisers (>2 times/week) 3 1 2 *A numeric rating scale indicated the worst genito-pelvic pain in the last four weeks, ranging from 0-10, 10 being the worst pain experienced and 0 being no pain. a one missing Results from the thematic analysis We identified three overarching themes related to women's views and experiences after participation in the pain management course (all 19 women) and after supervised exercise training for four months of participation in the RCT (10 women): (1) Information and guidance that meets the women’s needs, (2) Thought of exercise as less frightening and confronted the pain more often with exercise and (3) «All or nothing»: understanding that a little exercise can also help. We identified that information about exercise was vital for both groups. Supervised exercise training among women in the exercise group brought an extra dimension of safety and belonging. Additional statements are provided in Additional File 4. Theme 1. Information and guidance that meets the women's needs. Most of the women from both groups viewed their treatment options as limited. They explained that only surgery and medications were offered to them, and only two of the women had previously received recommendations about non-pharmacological and non-surgical pain management and exercise from their doctors. After participation in the present study, most of the women from both groups expressed a need for more information at an earlier stage of the disease about how they could actively do something to improve their pain themselves. Hannah from the exercise group said it like this: This is why I seek out and want to be part of this [project] and understand more of what it [endometriosis] is and how I can manage it since there are no such offers from the public health sector. Some women from the exercise group also emphasized the importance of supervised exercise led by an experienced physiotherapist and that exercise training in groups made them feel less alone with their condition. Isabelle said: «Exercise and those pelvic floor exercises are very important to continue with. However, more holistic, participating in this [project], meeting others, and not feeling so alone." Some also expressed that the exercise classes had been an anchor during their daily struggle with the disease and that establishing weekly routines with training was essential for their coping. Regardless of group allocation and previous training experience, most women were positive toward exercise and wished to do more or continue what they had been introduced to during the study. Their optimistic view towards exercise was grounded in three pillars: lack of alternatives, fewer or no side effects with exercise compared to other options, and hope for the future. Jenny from the control group illustrates this feeling of hope by saying: I know that there is no magical exercise in the secret somehow. I felt that I needed these little hope stations, I would say, so then this course and these exercises are kind of in my head: 'Oh, this is one of them.' Because I believed this would help, or I want to believe in it. Theme 2. Think of exercise as less frightening and confront the pain more often with exercise. The second theme we identified was that from both the exercise group and the control group, most of the women no longer viewed exercise as something harmful and frightening. Thus, they could confront the pain in more situations. Suzanne from the control group said: You learn about your body and that you perhaps do not get so scared about the pain and that you get an explanation as to why you have it this way [living with the pain] (…). However, some days were too painful to exercise, or fatigue hindered them from exercising or simply moving around. Nevertheless, several women expressed less fear of movement in situations where they usually would avoid exercise, compared to periods before study participation. Jenny from the control group expressed her feelings like this: So, it is like this psychological part that you must force yourself in a nice way (…). However, you know it is a bit thinking about exercises at some point; it's painful. Because you feel you do not have energy, 'so why should I… [do exercises] ', but then it was many times that I managed to break it [thinking about exercise as painful] (…). Another important finding was that the participants became more aware of the exercises that triggered pain. Although this had been a long journey that some had started before participation in the RCT, they became more aware of what to do and what not to do. Some women in the exercise group also expressed a lowered threshold for training at fitness studios, and three of these women had even made concrete plans with a personal trainer and signed a gym membership after study participation. Maria from the exercise group said, "I felt it was no longer so scary to exercise at that gym because I had practiced in this group.” Theme 3. «All or nothing»: Understanding that a little exercise can also help. Most of the women in both groups said they had changed their view on how much exercise was necessary to achieve health benefits and better cope with their situation. This change of view was mainly related to the sessions' length and intensity and resulted, for some, in that there were fewer periods with no training and a more even distribution of exercise throughout the month. Furthermore, with this change of view, exercise was also more accessible for many women to adjust on days with pain. Olivia from the control group said: «If I have made an appointment with a friend to go for a walk and I feel: 'Oh shit, this hurts, does this work [going for a walk].' However, now I have been better at saying that we can go for a walk, but I might have to turn back or go for a shorter walk. Like, adjust." This change of view was further strengthened for some women in the exercise group after they had experienced various intensities and exercises during supervision. Elisabeth from the exercise group said it like this: I never really enjoyed working out; it has been terribly tiring. 'Why should I do something that hurts when I have so much pain' (…) So I think that the times I have tried to exercise, the sessions have been far too hard. So, what I liked so much about the project was that I felt I got in better shape from our training, but I didn't think it was terribly tiring. Of course, tiring, but... Two women exercising at a moderate to high aerobic intensity level brought up thoughts about the length of the sessions. Sandra expressed: (…) Maybe I can exercise slightly shorter sessions and perhaps adjust it myself, which also has an effect. That might be the biggest, the most important change for me. Cross-sectional survey Research question 2: Do physiotherapists implement general exercise to treat and empower women with endometriosis symptoms? Study participants Of 137 female respondents, 29 answered that they did not treat women with endometriosis. The main reason for non-treatment was that these patients were not referred to them (n=26, 90%). Thus, 108 were included in the analysis, being from Norway (n=62), Sweden (n=7), Denmark (n=23), Iceland (n=2), and Finland (n=14). The country of residence was pooled to keep anonymity. Descriptive statistics from the survey results Eighty-one physiotherapists had >10 years of clinical experience, and 69 worked in private practice. Most (42%) of patients were referred from a specialist health care service, and the main reason for referral was pelvic floor pain (57%). Further background characteristics are presented in Table 2. Table 3 includes the type of treatments offered or advised and the dosage of both supervised and non-supervised exercise training. Individual general exercise at home and PFMT were the most recommended. About one-third of the physiotherapists offered individual supervised general training at the clinic, and few offered or advised group training (Table 3). All physiotherapists offered manual treatment of the pelvic floor muscles and/or manual treatment of external pelvic musculature as a single treatment or combined with supervised exercise training. When analyzing the differences between women’s health physiotherapists offering or advising manual treatments only versus combined manual treatments and regular general supervised exercise related to background variables, no significant differences were found (Table 4). Table 2. Background characteristics of women's health physiotherapists treating women with endometriosis. N=108 Frequency (%) Years of experience >10 years 81 (76%) Interdisiplinary work* Working with a physician, nurse, midwife Working with chiropractors, osteopaths, naprapaths and physiotherapists Working alone 65 (60%) 63 (58%) 17 (16%) Work-place Private practice Hospital Community Other 69 (64%) 28 (26%) 7 (6%) 4 (4%) Percentage of work in women's health >60% 52 (48%) Referral for physiotherapy Reason for referral -Pelvic floor pain -Back pain, abdominal pain and general pain Patients referred from a -Specialist health care service -General practitioner, private gynecologists -Other therapists -No referral, direct patient contact 61 (57%) 47 (44%) 45 (42%) 38 (35%) 7 (7%) 17 (16%) Number of women treated per month 0-5 5-10 >10 72 (67%) 24 (22%) 12 (11%) How many consultations per woman in a treatment course b 0-5 5-10 10-15 >15 31 (29%) 46 (43%) 21 (19%) 9 (8%) The average length of each consultation c Up to 30 minutes Up to 45 minutes Upto 60 minutes Upto 90 minutes 13 (12%) 43 (41%) 43 (41%) 5 (5%) *Several answers possible; a 1 missing; b 1 missing; c 4 missing Table 3. Descriptive statistics of daily practice among women's health physiotherapists treating women with endometriosis. N=108 Frequency (%) Treatment advice/offered for patients with endometriosis* Internal vaginal or rectal manual treatment External manual treatment in the pelvic area Individual general exercise training at the clinic Individual general exercise training at home Group exercise in or outside the clinic a Pelvic floor muscle training b Cognitive-behavioral therapy b Relaxation techniques, mindfulness, meditation b Other (electrotherapy, acupuncture, pain/sexual education) N=108 71 (66%) 75 (69%) 35 (32%) 53 (68%) 17 (16%) 79 (74%) 25 (23%) 62 (58%) 13 (12%) Frequency of offering individual general supervised exercise training at the clinic <once a week ³once a week n=35 23 (66%) 12 (34%) Frequency of advising general individual training at home (not supervised) <once a week ³once a week n=53 1 (2%) 52 (98%) Frequency of offering/advising supervised group training a <once a week ³once a week n=17 3 (18%) 14 (82%) Frequency of offering/advising pelvic floor muscle training b <once a week ³twice a week n=79 41 (23%) 67 (62%) *Several answers possible: a Group exercise included PFMT, Cognitive-behavioural therapy and Relaxation techniques, mindfulness, and meditation; b to be performed individually or in groups in or outside the clinic Table 4. Exploring differences between physiotherapists offering manual treatments only versus combined manual treatments and regular general supervised exercise training, including PFMT ³once a week related to background variables (N=95) Offering manual treatments only n=72 Offering manual treatments + regular general supervised exercise ³once a week n=23 Differences between groups 10 years of experience 15 (20.8%) 57 (79.2%) 4 (17.4%) 19 (82.6%) 0.95 Interdisiplinary work* Physician, nurse, midwife n=57 Chiropractors, osteopaths, naprapaths, and physiotherapists n=55 43 (59.7%) 41 (56.9%) 14 (60.9%) 14 (60.9%) 1.0 0.93 Work-place Private practice Hospital and Community 47 (65.3%) 25 (34.7%) 16 (69.6%) 7 (30.4%) 0.9 Percentage of work within women's health 60% 40 (55.6%) 32 (44.4%) 12 (52.2%) 11 (47.8%) 0.97 Patients referred from Specialist healthcare Private practice, including patient contact 32 (44.4%) 40 (55.6%) 9 (39.1%) 14 (60.9%) 0.84 Missing data: n=13; * The percentage is calculated based on the total who reports working in an interdisicplinary field; general supervised exercise ³once a week included supervised exercise individually and in groups, both general exercise training and PFMT. Discussion After participating in an RCT comparing pain education alone with pain education and supervised general exercise training, the women described increased knowledge about exercise as bringing hope for their future when their alternatives were lacking. Women participating in the exercise group further described supervision as a factor that made exercise less frightening and manageable when they were exposed to various intensities and types of exercises in a safe and supportive environment. However, from our survey results, in Nordic countries, supervised regular general exercise training is not routinely included in the daily practice of women's health physiotherapists treating women with endometriosis. Our analyses did not identify whether longer experience in women's health, assumed patient severity, or working in an interdisciplinary setting would make women’s health physiotherapists include more exercise training as part of their daily practice among women with endometriosis. Unfortunately, no questions addressed reasons for not offering supervised exercise, which could have been valuable information for planning future evidence-based models, including exercise training among these women. Women with endometriosis exhibit fewer hours of weekly physical activity than healthy controls with no endometriosis ( 27 ). Importantly, factors such as the disease itself, current dysmenorrhea, and depression were all associated with lower levels of physical activity. Thus, endometriosis is an independent factor leading to lower physical activity levels ( 27 ). From our interviews, the participating women from both the exercise and control groups were positive towards exercise training as part of their self-management. Further, after being introduced to exercise through the pain management course, some of the women also discovered when their bodies could benefit from exercise and which days exercise could provoke the pain. Some also managed to break the circle of thinking of exercise as painful or harmful, thus performing exercises when they usually would not. For women in the exercise group, the exposure to various intensities and types of exercises amplified the thinking of exercise as non-threatening. A significant consideration of the beneficial effects of exercising with pain is the potentially associated learning involved ( 28 ). Within this concept lies techniques to reconceptualize pain as safe and non-threatening, facilitated through supervision and patient education. Introducing patients to various exercises with different intensities in the clinical setting may reduce fair movement and pain-catastrophizing thoughts ( 28 ). The results from our interviews further showed that only two women had been informed about self-management strategies by their medical doctor, and all women expressed a need for more information about the disease and how they could better manage disease symptoms. Active coping styles, including adaptive strategies like acceptance, self-management, and increasing physical activity, are related to better mental health. Avoidance and suppression may cause poor mental health ( 7 ). Thus, empowering women with information and tools as stepping stones could enhance their ability to implement exercise as a self-management strategy ( 6 ). Physiotherapists have an important role in promoting exercise, and both therapist and patient describe individualization as a critical aspect, e.g., treating the person and not the disease and educating the patient about exercise ( 23 ). Patients have further described individualization as critical to the experience of exercise promotion and the general experience with physiotherapy. However, from their study, most patients express a need for more supervision and guidance during physiotherapy treatment, often receiving home-based exercise with minimal encouragement to attend exercise on their own ( 23 ). From our interviews, through the weekly group training, three of the women from the exercise group were more motivated to attend fitness studios, although this was something previously avoided. This finding illustrates the importance of supervision and individualization during exercise. Moreover, the effect of supervised exercise should be evaluated in the context in which it has been performed ( 29 ). In our study, the participants in the exercise group perceived the therapeutic alliance and belonging to a group as equally important. Thus, we must recognize the importance of group participation while considering exercise as an empowering tool ( 5 ). Seeking social support from family and friends has also been identified as a problem-focused coping strategy from previous research in this patient population ( 7 ). Physiotherapists should help patients focus on living with endometriosis rather than on a specific cure to help patients pursue a fulfilling life ( 30 ). Consequently, information and knowledge about exercise as self-management are essential ( 3 , 30 ). Strengths and limitations To plan for future evidence-based models, including exercise training as part of the treatment for women with endometriosis, we need to get insight into how exercise training is experienced by these women and factors relevant for women’s health physiotherapists to implement exercise training in their practice. Thus, combining qualitative and quantitative data methods is a strength of the study. However, the combination of data from two different populations has some inherent limitations. A limitation could have arisen from the wording of the questions related to treatments offered or advised. Thus, we do not know whether the physiotherapists offer group exercises or advise the women to attend other groups. Nevertheless, the group exercise included general exercise training and PFMT, and empowerment through participation with others was achieved through these exercise groups ( 5 ). Furthermore, we targeted all women's health physiotherapists working in the Nordic countries, regardless of whether they were treating women with endometriosis. Since we have yet to determine the exact number of women's health physiotherapists treating this patient population, we cannot generalize to all women's health physiotherapists. Nor do we know the reasons for non-treatment from the larger group of physiotherapists. Nevertheless, the survey questions give a snapshot of treatments offered or advised by several women's health physiotherapists working in the Nordic countries. The interview questions centered on how participants viewed exercise after participating in the pain management course or additional supervised exercise training for four months. Our sample of 19 participants is probably biased due to an already interest in exercise; some were also regular exercisers at the start of the RCT, which could reflect that most women from both the exercise group and the control group were motivated to use exercise as self-management after participation. Furthermore, all but six women were either in full-time or part-time work, which does not necessarily reflect all cases of endometriosis. Another limitation could be the sample of only 19 women. However, during the final interviews, no new information emerged from either group, and the sample size may be considered adequate. We aimed to make the interviews open and curious to grasp their honest experiences after participation in the RCT. However, the motivation for exercise from both groups could also reflect the participant's attempt to please the interviewer. From the exercise groups, many also spoke of how participation had led to their sense of belonging. Thus, the contextual factors in this RCT must not be overlooked ( 29 ) and must be seen as equally important as part of their self-management and empowering strategies ( 5 ). Conclusion The study found that empowering women with knowledge about the benefits of exercise training as self-management of endometriosis is critical to making informed decisions regarding treatment choices. Further, creating a sense of belonging through regular supervised group- and individual exercise training is considered equally important. However, to date, only 24% of physiotherapists in the Nordic countries responding to a survey use exercise training as part of their treatment for women with endometriosis. Abbreviations PFMT: pelvic floor muscle training RCT: randomized controlled trial Declarations Ethics approval and consent to participate. The study was approved by the Regional Committees for Medical Research Ethics South East Norway (date of approval 22.10.2019; reference number 2019/1236) and the Data Protection Officer at Akershus University Hospital (2019_135). All participants gave their informed consent before inclusion. Consent for publication Not applicable Availability of data and materials The datasets used and analyzed during the current study are available from the corresponding author upon reasonable request. (Survey data only) Competing interests The authors declare that they have no competing interests. Funding This work was supported by the Norwegian Fund for Post-Graduate Training in Physiotherapy under Grant number 139512. Authors' contributions MKT planned the study, collected and analyzed the data, wrote the manuscript, and was responsible for its content and text. RG planned the study, collected and analyzed the survey, and wrote the manuscript. MEE and KB planned the study and wrote the manuscript. MM analyzed the qualitative data and wrote the manuscript. All authors read and approved the final manuscript. Acknowledgments The authors want to thank all the women who participated in this study. We would also like to express our sincere gratitude to the Norwegian Endometriosis Association, Oslo University Hospital, especially Tina Tellum, and the staff at Akershus University Hospital for their effort in planning the project and recruiting women. Another thanks to Kristine Grimen Danielsen for her valuable input in planning the interview guide. References Becker CM, Bokor A, Heikinheimo O, Horne A, Jansen F, Kiesel L, et al. ESHRE guideline: endometriosis. Hum Reprod Open. 2022. 10.1093/hropen/hoac009 . Zondervan KT, Becker CM, Missmer SA, Endometriosis. N Engl J Med. 2020. 10.1056/NEJMra1810764 . Armour M, Sinclair J, Chalmers KJ, Smith CA. Self-management strategies amongst Australian women with endometriosis: a national online survey. BMC Complement Altern Med. 2019. 10.1186/s12906-019-2431-x . World Health Organization. Health promotion glossary of terms 2021. Geneva. 2021. Accessed 27 February 2024. Available from: https://iris.who.int/bitstream/handle/10665/350161/9789240038349-eng.pdf?sequence=1 . Perkins DD, Zimmerman MA. Empowerment theory, research, and application. Am J Community Psychol. 1995. 10.1007/Bf02506982 . Bullo S. Exploring disempowerment in women’s accounts of endometriosis experiences. Discourse Communication. 2018. 10.1177/1750481318771430 . Zarbo C, Brugnera A, Frigerio L, Malandrino C, Rabboni M, Bondi E, et al. Behavioral, cognitive, and emotional coping strategies of women with endometriosis: a critical narrative review. Arch Womens Ment Health. 2018. 10.1007/s00737-017-0779-9 . Caspersen CJ, Powell KE, Christenson GM. Physical activity, exercise, and physical fitness: definitions and distinctions for health-related research. Public Health Rep. 1985;100(2):126–31. World Health Organization. Physical activity. Geneva. 2022. Accessed 12 February 2024. Available from: https://www.who.int/news-room/fact-sheets/detail/physical-activity . World Health Organization. International Classification of Function Disability and Health: ICF. Geneva. 2001. Accessed 12 February 2024. Available from: https://www.who.int/classifications/icf/en/ . Omtvedt M, Bean E, Hald K, Larby ER, Majak GB, Tellum T. Patients' and relatives' perspectives on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis: findings from a national survey. BMC Womens Health. 2022. 10.1186/s12905-022-01798-8 . Duffy J, Hirsch M, Vercoe M, Abbott J, Barker C, Collura B, et al. A core outcome set for future endometriosis research: an international consensus development study. BJOG: Int J Obstet Gynecol. 2020. 10.1111/1471-0528.16157 . Tennfjord MK, Gabrielsen R, Tellum T. Effect of physical activity and exercise on endometriosis-associated symptoms: a systematic review. BMC Womens Health. 2021. 10.1186/s12905-021-01500-4 . Piercy KL, Troiano RP, Ballard RM, Carlson SA, Fulton JE, Galuska DA, et al. The Physical Activity Guidelines for Americans. JAMA. 2018. 10.1001/jama.2018.14854 . Suchomel TJ, Nimphius S, Bellon CR, Hornsby WG, Stone MH. Training for Muscular Strength: Methods for Monitoring and Adjusting Training Intensity. Sports Med. 2021. 10.1007/s40279-021-01488-9 . Borg GA. Psychophysical bases of perceived exertion. Med Sci Sports Exerc. 1982;14(5):377–81. Vagle MD, Martin-Kerr K, Miller JL, Wald B, Fairbanks H. Critical post-intentional phenomenological inquiry (crit-pip). Why it matters and what it can do. In: Denzin NK, Lincoln TS, Giardina MD, Canella GS, editors. The SAGE Handbook of Qualitative research. USA: SAGE publications, Inc.; 2024. pp. 223–39. Sundler AJ, Lindberg E, Nilsson C, Palmér L. Qualitative thematic analysis based on descriptive phenomenology. Nurs Open. 2019. 10.1002/nop2.275 . Braun V, Clarke V. Thematic analysis. In: Denzin NK, Lincoln YS, Giardina MD, Canella GS, editors. The SAGE Handbook of Qualitative research. USA: SAGE publications, Inc; 2024. pp. 385–401. NVivo 14 edition [Computer Software]. Lumivero, Denver. 2023. https://lumivero.com/products/nvivo/ . O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014. 10.1097/ACM.0000000000000388 . Schulz KF, Altman DG, Moher D, Group C. CONSORT 2010 Statement: updated guidelines for reporting parallel group randomised trials. BMC Med. 2010. 10.1186/1741-7015-8-18 . Corey JJ, Shirazipour CH, Fricke M, Evans B. Physiotherapists' role in physical activity promotion: Qualitative reflections of patients and providers. Physiother Theory Pract. 2023. 10.1080/09593985.2022.2031361 . Naess I, Bo K. Can maximal voluntary pelvic floor muscle contraction reduce vaginal resting pressure and resting EMG activity? International urogynecology journal. 2018; 10.1007/s00192-018-3599-1 . von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE)statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61(4):344–9. Haugen T, Sandbakk O, Seiler S, Tonnessen E. The Training Characteristics of World-Class Distance Runners: An Integration of Scientific Literature and Results-Proven Practice. Sports Med Open. 2022. 10.1186/s40798-022-00438-7 . Sachs MK, Dedes I, El-Hadad S, Haufe A, Rueff D, Kohl Schwartz AS, et al. Physical Activity in Women with Endometriosis: Less or More Compared with a Healthy Control? Int J Environ Res Public Health. 2023. 10.3390/ijerph20176659 . Smith BE, Hendrick P, Bateman M, Holden S, Littlewood C, Smith TO, et al. Musculoskeletal pain and exercise-challenging existing paradigms and introducing new. Br J Sports Med. 2019. 10.1136/bjsports-2017-098983 . Hafliethadottir SH, Juhl CB, Nielsen SM, Henriksen M, Harris IA, Bliddal H, et al. Placebo response and effect in randomized clinical trials: meta-research with focus on contextual effects. Trials. 2021. 10.1186/s13063-021-05454-8 . Evans S, Villegas V, Dowding C, Druitt M, O'Hara R, Mikocka-Walus A. Treatment use and satisfaction in Australian women with endometriosis: a mixed-methods study. Intern Med J. 2022. 10.1111/imj.15494 . Additional Declarations No competing interests reported. Supplementary Files Additionalfile1.Supervisedexerciseprogram.docx Additionalfile2.Interviewguide..docx Additionalfile3.surveyquestions.pdf Additionalfile4.Additionalstatements.docx Cite Share Download PDF Status: Published Journal Publication published 12 Sep, 2024 Read the published version in BMC Women's Health → Version 1 posted Editorial decision: Revision requested 16 Jul, 2024 Reviews received at journal 12 Jul, 2024 Reviewers agreed at journal 03 Jul, 2024 Reviews received at journal 26 Jun, 2024 Reviewers agreed at journal 16 May, 2024 Reviewers invited by journal 10 May, 2024 Editor assigned by journal 10 May, 2024 Editor invited by journal 06 Mar, 2024 Submission checks completed at journal 06 Mar, 2024 First submitted to journal 04 Mar, 2024 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. 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18:41:38","extension":"docx","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":16383,"visible":true,"origin":"","legend":"","description":"","filename":"Additionalfile4.Additionalstatements.docx","url":"https://assets-eu.researchsquare.com/files/rs-4010890/v1/bc09095eaa3a0e74ae3cbb1f.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Can general exercise be used as an empowering tool among women with endometriosis? Experiences and practice among women with endometriosis and women’s health physiotherapists","fulltext":[{"header":"Background","content":"\u003cp\u003eEndometriosis is a benign gynecological disease characterized by chronic inflammation, defined by endometrial-like tissue outside the uterus (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). The exact prevalence is not known, but it is estimated that up to 10% of women of fertile age may suffer (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The main symptom associated with the disease is pain with menstruation (dysmenorrhea) (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). However, pain with intercourse (dyspareunia), chronic pelvic pain, fatigue, and loss of quality of life are also symptoms often found among women with endometriosis (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eNon-pharmacological and non-surgical treatments may be an adjunct or an alternative to the current medical treatments to relieve endometriosis symptoms. One such treatment may be exercise. A recent study reported that 42% of women with endometriosis use exercise as a self-management tool (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). However, the same study also reported that 36% of the women lack information on self-management strategies to make informed decisions about their disease management. The World Health Organization defines empowerment as \u0026ldquo;a process through which people gain greater control over decisions and actions affecting their health\u0026rdquo; (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFurthermore, empowerment includes participation with others to achieve goals and access resources (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). A former qualitative study among women with endometriosis found that knowledge about one\u0026rsquo;s body is a prerequisite for feeling empowered (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). However, the knowledge deficit around endometriosis from healthcare professionals and society, resulting in a lack of agency to understand and learn active coping strategies, may result in women feeling disempowered and cause poor mental health (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eExercise training has been defined as any bodily activity that is planned, structured, and repetitive to condition the body (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e) and is well-known to benefit both mental health and reduce the risk of many medical conditions (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Physiotherapists may help women develop, maintain, and restore movement, activity, and participation for self-management of pain and to improve quality of life (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Women's health physiotherapists have been especially viewed as an essential part of the treatment package by patients with endometriosis (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eInternational treatment guidelines for endometriosis recommend research into evidence-based approaches to support self-management, such as exercise (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Moreover, patient satisfaction has been included as a core outcome measure in future endometriosis interventions (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). However, limited knowledge exists about this population's satisfaction from participation in exercise interventions (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Furthermore, since there are no guidelines to support exercise as a treatment option for women with endometriosis (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e), there needs to be more knowledge of whether and how physiotherapists implement exercise as part of their treatment strategy.\u003c/p\u003e \u003cp\u003eAnchoring the theoretical framework in empowerment theory, this study combines methods of qualitative and quantitative data to 1) explore how general exercise training is experienced among women with endometriosis and 2) assess whether women's health physiotherapists are implementing exercise training in their treatment.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eThis study was built on qualitative interviews of women with endometriosis after participating in a two-armed parallel group randomized controlled trial (RCT). The primary aim of the RCT is to assess the effect of pain education and exercise versus pain education alone on genito-pelvic pain. In addition, a quantitative cross-sectional survey was conducted among women's health physiotherapists working in the Nordic countries. The different environments and populations in which exercise training is to be implemented are essential for our understanding when planning future evidence-based models among women with endometriosis. Thus, combining data from two different population settings allowed us to explore experiences with exercise training after participating in an RCT (research question 1) and explore women's health physiotherapists' practice of implementing general exercise training as part of their treatment strategy (research question 2). The study was approved by the Regional Medical Ethics Committee (date of approval 22.10.2019; reference number 2019/1236) and the Data Protection Officer at Akershus University Hospital (2019_135).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eQualitative interviews\u003c/h2\u003e \u003cp\u003e \u003cstrong\u003eResearch question 1\u003c/strong\u003e \u003cp\u003eHow do women with endometriosis experience general exercise training to empower and manage disease symptoms?\u003c/p\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eThis qualitative study included a convenience sample of 19 women from both treatment arms after participating in an RCT for four months (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). These were recruited from a total of 81 women aged 18\u0026ndash;45 with signs of endometriosis confirmed by laparoscopy. The total sample of 81 women was recruited from two Norwegian specialized hospitals for endometriosis care in Oslo and through the Norwegian Endometriosis Association between January 2022 and January 2023. The participating women had to present with genito-pelvic pain, be able to understand and speak the Norwegian language and be able to participate in exercise classes. Exclusion criteria were severe pathology (malignancy), cardiovascular conditions and immune system diseases diagnosed by a specialist, pregnancy, childbirth in the last 12 months, and breastfeeding, and severe psychiatric disorders and personality disorders diagnosed by a specialist. In addition, women who had undergone intra-abdominal or vaginal surgery, receiving Botox injections into the pelvic area, or those recently started or adjusting ongoing hormonal therapy had to wait 4\u0026ndash;6 months before being included in the study. Relevant background information and informed consent were handled through Nettskjema.no, a secure online assessment tool developed and hosted by the University of Oslo, Norway.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003eIntervention description\u003c/h2\u003e \u003cp\u003e All 19 participants attended a four-hour interdisciplinary pain management course run by a physiotherapist, gynecologist, and psychologist at Akershus University Hospital (March and April 2022). The pain management course had a biopsychosocial approach emphasizing general exercise as an empowering tool. In addition, the course focused on pelvic floor muscle training (PFMT) to manage pelvic floor pain. Information about surgical and medical treatments for endometriosis was also provided. After the pain management course, the women were randomized to either an exercise or control group in blocks of two and four through the Blockrand package in R. A statistician handled the randomization sequence, while the allocation of participants into the exercise or control group was performed by a project member not involved in the recruitment of the participants.\u003c/p\u003e \u003cp\u003eThe exercise group then attended a 60-minute weekly group training session led by three physiotherapists with specialist training in women's health. The exercise lasted four months and was held at three private physiotherapy institutes in and around Oslo. The group training was designed as circular training, including a 10-minute warm-up, followed by a combination of low to moderate- and moderate to high-intensity aerobic training and muscular strength training of large muscle groups, including PFMT for 40 minutes, in addition to flexibility and relaxation training for 10 minutes (Additional File 1). The exercise group was also asked to perform an individually tailored progressive home exercise program over the same period following the same exercises and principles as for the group exercise. Recommendations for weekly exercise followed the American guidelines for physical activity for adults: 30 minutes 5 times per week with low to moderate-intensity aerobic exercise or 20 minutes 3 times with moderate to high-intensity aerobic exercise (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Recommendations for strength training were ten repetitions in 3 sets, 2 to 3 times per week, with training of large muscle groups. PFMT was recommended daily. Monitoring and adjusting training intensity were done following the principle of 2\u0026ndash;3 repetitions in reserve for muscular strength training (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) and the Borg rating of perceived exertion (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). The intensity, number, and length of home training sessions and any adverse effects were recorded through a training diary. The participants in the control group received no further follow-up after participation in the pain management course and were encouraged not to change exercise habits during the four-month intervention period.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section3\"\u003e \u003ch2\u003eProcedure for the Qualitative Study\u003c/h2\u003e \u003cp\u003eInterviews were performed within one month after the end of the intervention period among ten women from the exercise group and nine women from the control group (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Each interview started with verbal information about the participants' voluntary and ethical rights. The interviews were performed in a private room at Akershus University Hospital between August and November 2023, with one female researcher (MKT) present. The researcher was not blinded to group allocation and not involved in the participants' recruitment, assessment, or training, but attended the pain management course. However, with the background in physiotherapy, preconceptions and preunderstandings about the topic could subconsciously have influenced the interviewer to seek confirmation of any prior beliefs. To avoid this, the interviewer consciously decided to take an open and active role and follow any cues the participants provided during the interviews. The interviews lasted 30\u0026ndash;90 minutes and were recorded and stored using a secure Dictaphone application created with Nettskjema.no, an online assessment tool developed and hosted by the University of Oslo, Norway. In addition, notes on nonverbal behavior were taken.\u003c/p\u003e \u003cp\u003eThe interview guide was semi-structured, and a user representative from the Norwegian Endometriosis Association participated in preparing the interview guide. The guide included several questions related to their subjective experiences after participation in the project (Additional File 2). For this specific study, the following questions were asked: \u0026ldquo;Did participation in this study change your view of exercise as part of the treatment for endometriosis?\u0026rdquo; and \u0026ldquo;What are your perspectives on developing the best possible care for the treatment of endometriosis?\u0026rdquo; The researcher followed up with questions like: \u0026ldquo;How?\u0026rdquo; and \u0026ldquo;In what way?\u0026rdquo; to gain additional knowledge about their views and experiences. At the end of the interview, the women were asked to add anything that had yet to be discussed. The transcripts were written verbatim and supplemented by notes on nonverbal behaviors before being sent to each participant with an opportunity to read and correct the data sampled.\u003c/p\u003e \u003cp\u003eThe qualitative design was based on descriptive phenomenology, taking an interpretative approach (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). We consciously kept an open and reflective attitude throughout the research process, emphasizing meanings to concrete expressions and descriptive text (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). We used an inductive thematic analysis to explore these patterns of meanings from the participant's stories following the six steps proposed by Braun and Clarke: achieving familiarity with the data through open-minded reading while searching for meanings and themes before organizing themes into meanings of lived experiences (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). The data were coded, and themes were categorized using NVivo (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). All authors agreed upon the themes and statements chosen while considering the study's aim. Statements were translated from Norwegian to English and slightly edited for better readability while remaining as close to the original statements as possible. The participants received fictitious names to ensure anonymity. The study follows the Standards for Reporting Qualitative Research (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) and the Consolidated Standards of Reporting Trails where appropriate (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section3\"\u003e \u003ch2\u003eCross-sectional survey\u003c/h2\u003e \u003cp\u003e \u003cstrong\u003eResearch question 2\u003c/strong\u003e \u003cp\u003eDo physiotherapists implement general exercise to treat and empower women with endometriosis symptoms?\u003c/p\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eIn the period January 2020 to August 2022, women\u0026rsquo;s health physiotherapists from the Nordic countries (Norway, Sweden, Denmark, Iceland, and Finland) were asked to participate in an online survey to assess their daily practice of including exercise training in their treatment of women with endometriosis. Inclusion criteria were being a physiotherapist treating or not treating women with endometriosis and being willing to answer a questionnaire in Norwegian or English. The survey was emailed to members of the physiotherapy association subgroup of women\u0026rsquo;s health in the respective country and posted on membership social media accounts. Members of the respective women\u0026rsquo;s health subgroups are approximately 230 in Norway and Denmark, about 300 in Finland and Iceland, respectively, and about 1000 members in Sweden. However, there is no overview of the actual number of physiotherapists treating women with endometriosis. Thus, the response rate will not be appropriate to calculate. The survey was anonymous, and Nettskjema.no handled data, including informed consent.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eProcedure for the survey\u003c/h2\u003e \u003cp\u003eThe survey was developed by the researchers (MKT, RG, and KB) (Additional File 3). Before answering the survey, control questions included were: \"Are you a physiotherapist?\" and \"Do you treat women with endometriosis?\" with alternatives being \"yes\" or \"no.\" If the respondents answered \"no\" to the latter question, reasons for non-treatment were asked. Background data, the type of treatment offered or advised, and dosage were asked and presented with numbers and percentages. The types of treatments were categorized into supervised general training and manual treatment. Supervised exercise training included both general exercise training and specific PFMT to be performed individually at the clinic and in groups, thus exploring empowerment through regular guidance and participation with others (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). We are unaware of studies including the effect of PFMT as part of their intervention (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e), and no specific guidelines exist for the inclusion of PFMT as part of a general exercise regime for women with endometriosis (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). However, PFMT may reduce PFM tone in women experiencing PFM pain (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) and was therefore viewed as part of the general exercise training offered. Manual treatments included internal vaginal and rectal treatments and external treatments of pelvic musculature. However, since few physiotherapists offer supervised general exercise training only (n\u0026thinsp;=\u0026thinsp;9) and more often combined with manual treatments, we decided to group combined treatments of manual treatment and regular general supervised exercise, including PFMT, defined as \u0026ge;once a week (n\u0026thinsp;=\u0026thinsp;23). Thus, Chi-square tests were used to explore the association between manual treatments only and combined treatments of manual treatment and regular general supervised exercise training, including PFMT with relevant background characteristics. The background characteristics were dichotomized based on clinical reasoning and allowed us to study if more experience in the field (\u0026gt;\u0026thinsp;10 years versus \u0026lt;\u0026thinsp;10 years of experience and \u0026gt;\u0026thinsp;60% versus \u0026lt;\u0026thinsp;60% work) was associated with higher use of supervised exercise training versus manual treatment only. Further, we hypothesized that working in an interdisciplinary team would make physiotherapists take a more active role, thus promoting supervised general exercise training. Lastly, working in private practice versus hospital and treating patients referred from private gynecologists and general practitioners versus patients referred from the specialist health care service would include more supervised exercise training due to less severe patients. P\u0026le;0.05 was considered significant. The study follows the guidelines for reporting cross-sectional studies (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eQualitative interviews\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResearch question 1:\u003c/strong\u003e How do women with endometriosis experience general exercise training to empower and manage disease symptoms?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eStudy participants\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eAltogether, a convenience sample of the first 27 of the 81 women with endometriosis participating in the main trial were asked to participate in this qualitative interview (Figure 1). Of those asked, ten women from the training group and nine from the control group agreed to participate. Reasons for non-response are provided in Figure 1. Background characteristics of women allocated to the exercise group or the control group are provided in Table 1. The training diaries for the exercise group revealed that during the intervention, the women exercised 160 minutes per week on average (aerobic exercise and muscular-strengthening training), ranging from 44 minutes up to 428 minutes, which was split into an average of 5.7 sessions a week of various lengths per woman. The reported average level of intensity on the Borg scale was 12.7, indicating low to moderate intensity\u0026nbsp;(26). The level of intensity ranged from 10 up to 16, where two women exercised on level 16, indicating moderate to high intensity\u0026nbsp;(26). There were no reports of adverse advents. The control group reported no change in exercise patterns during the four-month intervention period.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 1. Background characteristics of women with endometriosis participating in a randomized controlled trial. Data presented as frequencies with range.\u0026nbsp;N=19\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAll women participating n=19\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eExercise group n=10\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eControl group n=9\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge (years)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e30.8 (20-40)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e30.3 (22-40)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e31.4 (20-38)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eYears since diagnosis\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e4.7 (2-13)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e5.2 (2-13)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e4 (2-7)\u003csub\u003ea\u003c/sub\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePain score*\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e6.5 (3-10)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e6.6 (3-8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e6.4 (3-10)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eHigher educational level (bachelor and master)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e11\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of women with children\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eRelationship status\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eMarried or in a relationship\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eEmployment\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eFull-time or part-time work\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eStudent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eSick leave\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eDisability aid\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eExercisers\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eRegular strength exercisers (\u0026gt;2 times/week)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"41.74454828660436%\" valign=\"top\"\u003e\n \u003cp\u003eRegular endurance exercisers (\u0026gt;2 times/week)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"22.429906542056074%\" valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"17.91277258566978%\" valign=\"top\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e*A numeric rating scale indicated the worst genito-pelvic pain in the last four weeks, ranging from 0-10, 10 being the worst pain experienced and 0 being no pain. \u003csub\u003ea\u0026nbsp;\u003c/sub\u003eone missing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eResults from the thematic analysis\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eWe identified three overarching themes related to women\u0026apos;s views and experiences after participation in the pain management course (all 19 women) and after supervised exercise training for four months of participation in the RCT (10 women): (1) Information and guidance that meets the women\u0026rsquo;s needs, (2) Thought of exercise as less frightening and confronted the pain more often with exercise and (3) \u0026laquo;All or nothing\u0026raquo;: understanding that a little exercise can also help. We identified that information about exercise was vital for both groups. Supervised exercise training among women in the exercise group brought an extra dimension of safety and belonging. Additional statements are provided in Additional File 4. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eTheme 1. Information and guidance that meets the women\u0026apos;s needs.\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eMost of the women from both groups viewed their treatment options as limited. They explained that only surgery and medications were offered to them, and only two of the women had previously received recommendations about non-pharmacological and non-surgical pain management and exercise from their doctors. After participation in the present study, most of the women from both groups expressed a need for more information at an earlier stage of the disease about how they could actively do something to improve their pain themselves. Hannah from the exercise group said it like this:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis is why I seek out and want to be part of this [project] and understand more of what it [endometriosis] is and how I can manage it since there are no such offers from the public health sector.\u003c/p\u003e\n\u003cp\u003eSome women from the exercise group also emphasized the importance of supervised exercise led by an experienced physiotherapist and that exercise training in groups made them feel less alone with their condition. Isabelle said: \u0026laquo;Exercise and those pelvic floor exercises are very important to continue with. However, more holistic, participating in this [project], meeting others, and not feeling so alone.\u0026quot; Some also expressed that the exercise classes had been an anchor during their daily struggle with the disease and that establishing weekly routines with training was essential for their coping. Regardless of group allocation and previous training experience, most women were positive toward exercise and wished to do more or continue what they had been introduced to during the study. Their optimistic view towards exercise was grounded in three pillars: lack of alternatives, fewer or no side effects with exercise compared to other options, and hope for the future. Jenny from the control group illustrates this feeling of hope by saying:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eI know that there is no magical exercise in the secret somehow. I felt that I needed these little hope stations, I would say, so then this course and these exercises are kind of in my head: \u0026apos;Oh, this is one of them.\u0026apos; Because I believed this would help, or I want to believe in it. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eTheme 2. Think of exercise as less frightening and confront the pain more often with exercise.\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe second theme we identified was that from both the exercise group and the control group, most of the women no longer viewed exercise as something harmful and frightening. Thus, they could confront the pain in more situations. Suzanne from the control group said:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eYou learn about your body and that you perhaps do not get so scared about the pain and that you get an explanation as to why you have it this way [living with the pain] (\u0026hellip;).\u003c/p\u003e\n\u003cp\u003eHowever, some days were too painful to exercise, or fatigue hindered them from exercising or simply moving around. Nevertheless, several women expressed less fear of movement in situations where they usually would avoid exercise, compared to periods before study participation. Jenny from the control group expressed her feelings like this:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSo, it is like this psychological part that you must force yourself in a nice way (\u0026hellip;). However, you know it is a bit thinking about exercises at some point; it\u0026apos;s painful. Because you feel you do not have energy, \u0026apos;so why should I\u0026hellip; [do exercises] \u0026apos;, but then it was many times that I managed to break it [thinking about exercise as painful] (\u0026hellip;).\u003c/p\u003e\n\u003cp\u003eAnother important finding was that the participants became more aware of the exercises that triggered pain. Although this had been a long journey that some had started before participation in the RCT, they became more aware of what to do and what not to do. Some women in the exercise group also expressed a lowered threshold for training at fitness studios, and three of these women had even made concrete plans with a personal trainer and signed a gym membership after study participation. Maria from the exercise group said, \u0026quot;I felt it was no longer so scary to exercise at that gym because I had practiced in this group.\u0026rdquo; \u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eTheme 3. \u0026laquo;All or nothing\u0026raquo;: Understanding that a little exercise can also help.\u0026nbsp;\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eMost of the women in both groups said they had changed their view on how much exercise was necessary to achieve health benefits and better cope with their situation. This change of view was mainly related to the sessions\u0026apos; length and intensity and resulted, for some, in that there were fewer periods with no training and a more even distribution of exercise throughout the month. Furthermore, with this change of view, exercise was also more accessible for many women to adjust on days with pain. Olivia from the control group said:\u0026nbsp;\u0026laquo;If I have made an appointment with a friend to go for a walk and I feel: \u0026apos;Oh shit, this hurts, does this work [going for a walk].\u0026apos; However, now I have been better at saying that we can go for a walk, but I might have to turn back or go for a shorter walk. Like, adjust.\u0026quot; This change of view was further strengthened for some women in the exercise group after they had experienced various intensities and exercises during supervision. Elisabeth from the exercise group said it like this:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eI never really enjoyed working out; it has been terribly tiring. \u0026apos;Why should I do something that hurts when I have so much pain\u0026apos; (\u0026hellip;) So I think that the times I have tried to exercise, the sessions have been far too hard. So, what I liked so much about the project was that I felt I got in better shape from our training, but I didn\u0026apos;t think it was terribly tiring. Of course, tiring, but...\u003c/p\u003e\n\u003cp\u003eTwo women exercising at a moderate to high aerobic intensity level brought up thoughts about the length of the sessions. Sandra expressed:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e(\u0026hellip;) Maybe I can exercise slightly shorter sessions and perhaps adjust it myself, which also has an effect. That might be the biggest, the most important change for me.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCross-sectional survey\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResearch question 2:\u0026nbsp;\u003c/strong\u003eDo physiotherapists implement general exercise to treat and empower women with endometriosis symptoms?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eStudy participants\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eOf 137 female respondents, 29 answered that they did not treat women with endometriosis. The main reason for non-treatment was that these patients were not referred to them (n=26, 90%). Thus, 108 were included in the analysis, being from Norway (n=62), Sweden (n=7), Denmark (n=23), Iceland (n=2), and Finland (n=14). The country of residence was pooled to keep anonymity. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eDescriptive statistics from the survey results\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eEighty-one physiotherapists had \u0026gt;10 years of clinical experience, and 69 worked in private practice. Most (42%) of patients were referred from a specialist health care service, and the main reason for referral was pelvic floor pain (57%). Further background characteristics are presented in Table 2. Table 3 includes the type of treatments offered or advised and the dosage of both supervised and non-supervised exercise training. Individual general exercise at home and PFMT were the most recommended. About one-third of the physiotherapists offered individual supervised general training at the clinic, and few offered or advised group training (Table 3). All physiotherapists offered manual treatment of the pelvic floor muscles and/or manual treatment of external pelvic musculature as a single treatment or combined with supervised exercise training. When analyzing the differences between women\u0026rsquo;s health physiotherapists offering or advising manual treatments only versus combined manual treatments and regular general supervised exercise related to background variables, no significant differences were found (Table 4).\u003c/p\u003e\n\u003cp\u003eTable 2. Background characteristics of women\u0026apos;s health physiotherapists treating women with endometriosis. N=108\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"652\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003eFrequency (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eYears of experience\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026gt;10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e81 (76%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eInterdisiplinary work*\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eWorking with a physician, nurse, midwife\u003c/p\u003e\n \u003cp\u003eWorking with chiropractors, osteopaths, naprapaths and physiotherapists\u003c/p\u003e\n \u003cp\u003eWorking alone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e65 (60%)\u003c/p\u003e\n \u003cp\u003e63 (58%)\u003c/p\u003e\n \u003cp\u003e17 (16%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eWork-place\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003ePrivate practice\u003c/p\u003e\n \u003cp\u003eHospital\u003c/p\u003e\n \u003cp\u003eCommunity\u003c/p\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e69 (64%)\u003c/p\u003e\n \u003cp\u003e28 (26%)\u003c/p\u003e\n \u003cp\u003e7 (6%)\u003c/p\u003e\n \u003cp\u003e4 (4%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePercentage of work in women\u0026apos;s health\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026gt;60%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e52 (48%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eReferral for physiotherapy\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eReason for referral\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e-Pelvic floor pain\u003c/p\u003e\n \u003cp\u003e-Back pain, abdominal pain and general pain\u003c/p\u003e\n \u003cp\u003e\u003cem\u003ePatients referred from \u003csub\u003ea\u0026nbsp;\u003c/sub\u003e\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e-Specialist health care service\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e-General practitioner, private gynecologists\u003c/p\u003e\n \u003cp\u003e-Other therapists\u003c/p\u003e\n \u003cp\u003e-No referral, direct patient contact\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e61 (57%)\u003c/p\u003e\n \u003cp\u003e47 (44%)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e45 (42%)\u003c/p\u003e\n \u003cp\u003e38 (35%)\u003c/p\u003e\n \u003cp\u003e7 (7%)\u003c/p\u003e\n \u003cp\u003e17 (16%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of women treated per month\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e0-5\u003c/p\u003e\n \u003cp\u003e5-10\u003c/p\u003e\n \u003cp\u003e\u0026gt;10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e72 (67%)\u003c/p\u003e\n \u003cp\u003e24 (22%)\u003c/p\u003e\n \u003cp\u003e12 (11%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eHow many consultations per woman in a treatment course \u003csub\u003eb\u003c/sub\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e0-5\u003c/p\u003e\n \u003cp\u003e5-10\u003c/p\u003e\n \u003cp\u003e10-15\u003c/p\u003e\n \u003cp\u003e\u0026gt;15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e31 (29%)\u003c/p\u003e\n \u003cp\u003e46 (43%)\u003c/p\u003e\n \u003cp\u003e21 (19%)\u003c/p\u003e\n \u003cp\u003e9 (8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"75.30674846625767%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eThe average length of each consultation \u003csub\u003ec\u003c/sub\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eUp to 30 minutes\u003c/p\u003e\n \u003cp\u003eUp to 45 minutes\u003c/p\u003e\n \u003cp\u003eUpto 60 minutes\u003c/p\u003e\n \u003cp\u003eUpto 90 minutes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"24.69325153374233%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e13 (12%)\u003c/p\u003e\n \u003cp\u003e43 (41%)\u003c/p\u003e\n \u003cp\u003e43 (41%)\u003c/p\u003e\n \u003cp\u003e5 (5%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e*Several answers possible; \u003csub\u003ea\u0026nbsp;\u003c/sub\u003e1 missing; \u003csub\u003eb\u0026nbsp;\u003c/sub\u003e1 missing; \u003csub\u003ec\u0026nbsp;\u003c/sub\u003e4 missing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 3. Descriptive statistics of daily practice among women\u0026apos;s health physiotherapists treating women with endometriosis. N=108\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"690\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"69.85507246376811%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"30.144927536231883%\" valign=\"top\"\u003e\n \u003cp\u003eFrequency (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"69.85507246376811%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eTreatment advice/offered for patients with endometriosis*\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eInternal vaginal or rectal manual treatment\u003c/p\u003e\n \u003cp\u003eExternal manual treatment in the pelvic area\u003c/p\u003e\n \u003cp\u003eIndividual general exercise training at the clinic\u003c/p\u003e\n \u003cp\u003eIndividual general exercise training at home\u003c/p\u003e\n \u003cp\u003eGroup exercise in or outside the clinic \u003csub\u003ea\u003c/sub\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003ePelvic floor muscle training \u003csub\u003eb\u003c/sub\u003e\u003c/p\u003e\n \u003cp\u003eCognitive-behavioral therapy \u003csub\u003eb\u003c/sub\u003e\u003c/p\u003e\n \u003cp\u003eRelaxation techniques, mindfulness, meditation \u003csub\u003eb\u003c/sub\u003e\u003c/p\u003e\n \u003cp\u003eOther (electrotherapy, acupuncture, pain/sexual education)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"30.144927536231883%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eN=108\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e71 (66%)\u003c/p\u003e\n \u003cp\u003e75 (69%)\u003c/p\u003e\n \u003cp\u003e35 (32%)\u003c/p\u003e\n \u003cp\u003e53 (68%)\u003c/p\u003e\n \u003cp\u003e17 (16%)\u003c/p\u003e\n \u003cp\u003e79 (74%)\u003c/p\u003e\n \u003cp\u003e25 (23%)\u003c/p\u003e\n \u003cp\u003e62 (58%)\u003c/p\u003e\n \u003cp\u003e13 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"69.85507246376811%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency of offering individual general supervised exercise training at the clinic\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026lt;once a week\u003c/p\u003e\n \u003cp\u003e\u0026sup3;once a week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"30.144927536231883%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003en=35\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e23 (66%)\u003c/p\u003e\n \u003cp\u003e12 (34%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"69.85507246376811%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency of advising general individual training at home (not supervised)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026lt;once a week\u003c/p\u003e\n \u003cp\u003e\u0026sup3;once a week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"30.144927536231883%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003en=53\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1 (2%)\u003c/p\u003e\n \u003cp\u003e52 (98%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"69.85507246376811%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency of offering/advising supervised group training \u003csub\u003ea\u003c/sub\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026lt;once a week\u003c/p\u003e\n \u003cp\u003e\u0026sup3;once a week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"30.144927536231883%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003en=17\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e3 (18%)\u003c/p\u003e\n \u003cp\u003e14 (82%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"69.85507246376811%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency of offering/advising pelvic floor muscle training \u003csub\u003eb\u003c/sub\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026lt;once a week\u003c/p\u003e\n \u003cp\u003e\u0026sup3;twice a week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"30.144927536231883%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003en=79\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e41 (23%)\u003c/p\u003e\n \u003cp\u003e67 (62%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e*Several answers possible: \u003csub\u003ea\u0026nbsp;\u003c/sub\u003eGroup exercise included PFMT, Cognitive-behavioural therapy and Relaxation techniques, mindfulness, and meditation; \u003csub\u003eb\u0026nbsp;\u003c/sub\u003eto be performed individually or in groups in or outside the clinic\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 4. Exploring differences between physiotherapists offering\u0026nbsp;manual treatments only versus combined manual treatments and regular general supervised exercise training, including PFMT\u0026nbsp;\u0026sup3;once a week related to background variables (N=95)\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"747\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"24.096385542168676%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"27.978580990629183%\" valign=\"top\"\u003e\n \u003cp\u003eOffering manual treatments only\u0026nbsp;\u003c/p\u003e\n \u003cp\u003en=72\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.50602409638554%\" valign=\"top\"\u003e\n \u003cp\u003eOffering manual treatments + regular general supervised exercise\u0026nbsp;\u0026sup3;once a week\u0026nbsp;\u003c/p\u003e\n \u003cp\u003en=23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.4190093708166%\" valign=\"top\"\u003e\n \u003cp\u003eDifferences between groups\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"24.096385542168676%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026lt;10 years of experience\u003c/p\u003e\n \u003cp\u003e\u0026gt;10 years of experience\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"27.978580990629183%\" valign=\"top\"\u003e\n \u003cp\u003e15 (20.8%)\u003c/p\u003e\n \u003cp\u003e57 (79.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.50602409638554%\" valign=\"top\"\u003e\n \u003cp\u003e4 (17.4%)\u003c/p\u003e\n \u003cp\u003e19 (82.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.4190093708166%\" valign=\"top\"\u003e\n \u003cp\u003e0.95\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"24.096385542168676%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eInterdisiplinary work*\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003ePhysician, nurse, midwife n=57\u003c/p\u003e\n \u003cp\u003eChiropractors, osteopaths, naprapaths, and physiotherapists n=55\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"27.978580990629183%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e43 (59.7%)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e41 (56.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.50602409638554%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e14 (60.9%)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e14 (60.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.4190093708166%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1.0\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e0.93\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"24.096385542168676%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eWork-place\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003ePrivate practice\u003c/p\u003e\n \u003cp\u003eHospital and Community\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"27.978580990629183%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e47 (65.3%)\u003c/p\u003e\n \u003cp\u003e25 (34.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.50602409638554%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e16 (69.6%)\u003c/p\u003e\n \u003cp\u003e7 (30.4%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.4190093708166%\" valign=\"top\"\u003e\n \u003cp\u003e0.9\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"24.096385542168676%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePercentage of work within women\u0026apos;s health\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u0026lt;60%\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026gt;60%\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"27.978580990629183%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e40 (55.6%)\u003c/p\u003e\n \u003cp\u003e32 (44.4%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.50602409638554%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e12 (52.2%)\u003c/p\u003e\n \u003cp\u003e11 (47.8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.4190093708166%\" valign=\"top\"\u003e\n \u003cp\u003e0.97\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"24.096385542168676%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePatients referred from\u0026nbsp;\u003c/strong\u003eSpecialist healthcare\u0026nbsp;\u003c/p\u003e\n \u003cp\u003ePrivate practice, including patient contact\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"27.978580990629183%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e32 (44.4%)\u003c/p\u003e\n \u003cp\u003e40 (55.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.50602409638554%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e9 (39.1%)\u003c/p\u003e\n \u003cp\u003e14 (60.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.4190093708166%\" valign=\"top\"\u003e\n \u003cp\u003e0.84\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eMissing data: n=13; * The percentage is calculated based on the total who reports working in an interdisicplinary field; general supervised exercise \u0026sup3;once a week included supervised exercise individually and in groups, both general exercise training and PFMT.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eAfter participating in an RCT comparing pain education alone with pain education and supervised general exercise training, the women described increased knowledge about exercise as bringing hope for their future when their alternatives were lacking. Women participating in the exercise group further described supervision as a factor that made exercise less frightening and manageable when they were exposed to various intensities and types of exercises in a safe and supportive environment. However, from our survey results, in Nordic countries, supervised regular general exercise training is not routinely included in the daily practice of women's health physiotherapists treating women with endometriosis. Our analyses did not identify whether longer experience in women's health, assumed patient severity, or working in an interdisciplinary setting would make women\u0026rsquo;s health physiotherapists include more exercise training as part of their daily practice among women with endometriosis. Unfortunately, no questions addressed reasons for not offering supervised exercise, which could have been valuable information for planning future evidence-based models, including exercise training among these women.\u003c/p\u003e \u003cp\u003eWomen with endometriosis exhibit fewer hours of weekly physical activity than healthy controls with no endometriosis (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). Importantly, factors such as the disease itself, current dysmenorrhea, and depression were all associated with lower levels of physical activity. Thus, endometriosis is an independent factor leading to lower physical activity levels (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). From our interviews, the participating women from both the exercise and control groups were positive towards exercise training as part of their self-management. Further, after being introduced to exercise through the pain management course, some of the women also discovered when their bodies could benefit from exercise and which days exercise could provoke the pain. Some also managed to break the circle of thinking of exercise as painful or harmful, thus performing exercises when they usually would not. For women in the exercise group, the exposure to various intensities and types of exercises amplified the thinking of exercise as non-threatening. A significant consideration of the beneficial effects of exercising with pain is the potentially associated learning involved (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Within this concept lies techniques to reconceptualize pain as safe and non-threatening, facilitated through supervision and patient education. Introducing patients to various exercises with different intensities in the clinical setting may reduce fair movement and pain-catastrophizing thoughts (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). The results from our interviews further showed that only two women had been informed about self-management strategies by their medical doctor, and all women expressed a need for more information about the disease and how they could better manage disease symptoms. Active coping styles, including adaptive strategies like acceptance, self-management, and increasing physical activity, are related to better mental health. Avoidance and suppression may cause poor mental health (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Thus, empowering women with information and tools as stepping stones could enhance their ability to implement exercise as a self-management strategy (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePhysiotherapists have an important role in promoting exercise, and both therapist and patient describe individualization as a critical aspect, e.g., treating the person and not the disease and educating the patient about exercise (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Patients have further described individualization as critical to the experience of exercise promotion and the general experience with physiotherapy. However, from their study, most patients express a need for more supervision and guidance during physiotherapy treatment, often receiving home-based exercise with minimal encouragement to attend exercise on their own (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). From our interviews, through the weekly group training, three of the women from the exercise group were more motivated to attend fitness studios, although this was something previously avoided. This finding illustrates the importance of supervision and individualization during exercise. Moreover, the effect of supervised exercise should be evaluated in the context in which it has been performed (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). In our study, the participants in the exercise group perceived the therapeutic alliance and belonging to a group as equally important. Thus, we must recognize the importance of group participation while considering exercise as an empowering tool (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Seeking social support from family and friends has also been identified as a problem-focused coping strategy from previous research in this patient population (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Physiotherapists should help patients focus on living with endometriosis rather than on a specific cure to help patients pursue a fulfilling life (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). Consequently, information and knowledge about exercise as self-management are essential (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003eTo plan for future evidence-based models, including exercise training as part of the treatment for women with endometriosis, we need to get insight into how exercise training is experienced by these women and factors relevant for women\u0026rsquo;s health physiotherapists to implement exercise training in their practice. Thus, combining qualitative and quantitative data methods is a strength of the study. However, the combination of data from two different populations has some inherent limitations.\u003c/p\u003e \u003cp\u003eA limitation could have arisen from the wording of the questions related to treatments offered or advised. Thus, we do not know whether the physiotherapists offer group exercises or advise the women to attend other groups. Nevertheless, the group exercise included general exercise training and PFMT, and empowerment through participation with others was achieved through these exercise groups (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Furthermore, we targeted all women's health physiotherapists working in the Nordic countries, regardless of whether they were treating women with endometriosis. Since we have yet to determine the exact number of women's health physiotherapists treating this patient population, we cannot generalize to all women's health physiotherapists. Nor do we know the reasons for non-treatment from the larger group of physiotherapists. Nevertheless, the survey questions give a snapshot of treatments offered or advised by several women's health physiotherapists working in the Nordic countries.\u003c/p\u003e \u003cp\u003e The interview questions centered on how participants viewed exercise after participating in the pain management course or additional supervised exercise training for four months. Our sample of 19 participants is probably biased due to an already interest in exercise; some were also regular exercisers at the start of the RCT, which could reflect that most women from both the exercise group and the control group were motivated to use exercise as self-management after participation. Furthermore, all but six women were either in full-time or part-time work, which does not necessarily reflect all cases of endometriosis. Another limitation could be the sample of only 19 women. However, during the final interviews, no new information emerged from either group, and the sample size may be considered adequate. We aimed to make the interviews open and curious to grasp their honest experiences after participation in the RCT. However, the motivation for exercise from both groups could also reflect the participant's attempt to please the interviewer. From the exercise groups, many also spoke of how participation had led to their sense of belonging. Thus, the contextual factors in this RCT must not be overlooked (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e) and must be seen as equally important as part of their self-management and empowering strategies (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe study found that empowering women with knowledge about the benefits of exercise training as self-management of endometriosis is critical to making informed decisions regarding treatment choices. Further, creating a sense of belonging through regular supervised group- and individual exercise training is considered equally important. However, to date, only 24% of physiotherapists in the Nordic countries responding to a survey use exercise training as part of their treatment for women with endometriosis.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ePFMT: pelvic floor muscle training\u003c/p\u003e\n\u003cp\u003eRCT: randomized controlled trial\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cu\u003eEthics approval and consent to participate.\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe study was approved by the Regional Committees for Medical Research Ethics South East Norway (date of approval 22.10.2019; reference number\u0026nbsp;2019/1236) and the Data Protection Officer at Akershus University Hospital (2019_135). All participants gave their informed consent before inclusion.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eConsent for publication\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAvailability of data and materials\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and analyzed during the current study are available from the corresponding author upon reasonable request. (Survey data only)\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eCompeting interests\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eFunding\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by the Norwegian Fund for Post-Graduate Training in Physiotherapy under Grant number 139512.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAuthors\u0026apos; contributions\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eMKT planned the study, collected and analyzed the data, wrote the manuscript, and was responsible for its content and text. RG planned the study, collected and analyzed the survey, and wrote the manuscript. MEE and KB planned the study and wrote the manuscript. MM analyzed the qualitative data and wrote the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAcknowledgments\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe authors want to thank all the women who participated in this study. We would also like to express our sincere gratitude to the Norwegian Endometriosis Association, Oslo University Hospital, especially Tina Tellum, and the staff at Akershus University Hospital for their effort in planning the project and recruiting women. Another thanks to Kristine Grimen Danielsen for her valuable input in planning the interview guide.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBecker CM, Bokor A, Heikinheimo O, Horne A, Jansen F, Kiesel L, et al. ESHRE guideline: endometriosis. 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[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Endometriosis, empowerment, exercise, pelvic pain, physical activity, physiotherapy","lastPublishedDoi":"10.21203/rs.3.rs-4010890/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4010890/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThe potential benefit of exercise to alleviate symptoms of endometriosis is unclear. Still, exercise may be used to empower women and manage disease symptoms. The purpose of this study was twofold: 1) to explore how general exercise is experienced among women with endometriosis and 2) to assess whether women\u0026rsquo;s health physiotherapists are implementing exercise in their treatment.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eQualitative interviews were performed with 19 women with endometriosis, recruited after cessation of a randomized controlled trial (RCT), testing the effect of exercise as self-management (10 from the exercise group and nine from the control group). Responses to the question \u0026ldquo;Did participation in the study change your view of exercise as part of the treatment for endometriosis?\u0026ldquo; were analyzed. In addition, a cross-sectional survey was performed among women's health physiotherapists working in the Nordic countries (n\u0026thinsp;=\u0026thinsp;108), exploring their practice of manual treatments and supervised general exercise for endometriosis patients. Associations with manual and combined treatments of manual treatment and supervised regular general exercise were explored in relation to experience in women's health, assumed patient severity, and working in an interdisciplinary setting. Chi-square tests were used.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFrom the RCT, the women from the exercise and control groups brought forward the importance of knowledge about the benefits of exercise to make informed decisions in disease management. The women in the exercise group described how exercise was perceived as less frightening and manageable when exposed to various intensities and types of exercises in a safe and supportive environment. The supervised exercise brought an extra dimension of belonging through group participation. From the survey, 75% of the physiotherapists stated to offer manual treatments only, whereas 24% combined manual treatments with regular supervised general exercise training individually or in groups. No differences between groups related to the variables of interest were found.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eTo experience exercise as safe and non-threatening, creating a sense of belonging through regular supervision and guidance is essential. Still, few women's health physiotherapists offer exercise for self-management of pain as part of their daily practice in treating women with endometriosis.\u003c/p\u003e\u003ch2\u003eTrial registration\u003c/h2\u003e \u003cp\u003eNCT05091268\u003c/p\u003e","manuscriptTitle":"Can general exercise be used as an empowering tool among women with endometriosis? Experiences and practice among women with endometriosis and women’s health physiotherapists","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-03-08 18:41:33","doi":"10.21203/rs.3.rs-4010890/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-07-16T05:00:11+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-07-12T04:51:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"272242912899116967679054080447482591899","date":"2024-07-03T12:49:46+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-06-26T09:51:54+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"294962279532797677032533662755219836936","date":"2024-05-16T16:31:16+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-05-10T14:52:54+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-05-10T14:28:27+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2024-03-06T06:19:00+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-03-06T06:13:31+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Women's Health","date":"2024-03-04T06:57:23+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
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