{"paper_id":"68df3b69-7103-449a-afa2-d77e140b4fa2","body_text":"Endometriosis is a chronic gynaecological condition affecting around 10% of women of\nreproductive age. 1 , 2 \nAlthough predominantly depicted as a female disease, 3  endometriosis has also been found in a\nminority of men and transgender males. 4 \n , 5  It is typified by the presence\nand growth of endometrial cells outside the uterus 6 – 8  and is found most commonly on\nthe surface of the ovary, but also the fallopian tubes, pelvic cavity, abdominal\ncavity, liver and sometimes the lungs. \n 9 \n  Pain is one of the most common symptoms of endometriosis, along with fatigue,\nabnormal excessive menstrual flow (menorrhagia) and infertility. 9 – 11\nEndometriosis pain often continues even after treatment 12 , 13  and impacts quality of\nlife 14 – 16  including affecting identity,\nsocial and family life, sexual quality of life, 17 – 22  ability to work, 15 \n , 23  mental health, 21 , 24 , 25  and causing\ndisability, 16 , 26 \n, 27  which\nHallståm and colleagues referred to as  a ruined life . \n 28 \n  Dealing with these consequences and feelings of difference from others mean\nwomen struggle to create a sense of coherence across different aspects of their life \n 28 \n  which can result in poor mental health including anxiety and\ndepression. 16 , 29 , 30\nThe literature on descriptions of endometriosis-related pain has largely focused\non measuring pain in order to create outcome measures for clinical research\nstudies rather than for clinical encounters between patients and healthcare professionals. \n 31 \n  This literature has three classic presentations of endometriosis-related\npain: dysmenorrhea (pain during menstruation), non-menstrual chronic pelvic\npain, and dyspareunia (pain during sexual intercourse). \n 16 \n  Measures of endometriosis-related pain have focused primarily on cyclical\ndysmenorrhea and non-menstrual pelvic pain; for example, the Endometriosis Daily\nPain Impact diary \n 32 \n  and the Endometriosis Pain and Bleeding diary. \n 33 \n  More recently, measures have been developed to include other types of\npain such as pain on defecation (dyschezia), painful urination (dysuria),\novulation pain, lower back and groin pain, upper body pain including breast\npain, upper back and shoulders, headache and migraine. 34 – 36  Some of these pain\nmeasures have been criticised for lacking patient input, limitations in\ndescribing endometriosis accurately, 9 , 36  and not reflecting\npatient’s concerns and priorities.\nThere have been calls to consider qualitative approaches to pain research \n 37 \n  and some qualitative studies have focused on descriptions and experiences\nof pain. Endometriosis pain has been described as ranging from a minor\nirritation to being totally overwhelming or paralysing. 10 , 26 , 38  Denny \n 9 \n  found that the intensity and duration of pain along with experiencing\npain during sexual intercourse (dyspareunia) differentiated endometriosis pain\nfrom normal period pain. However, women who have experienced painful periods\nsince adolescence have nothing to compare this experience against \n 26 \n  and may normalise endometriosis pain. This normalisation also occurs\nbecause experiences and beliefs about endometriosis-related pain and\ngynaecological pain more generally are gendered, bound up in what women are\nexpected to feel and put up with. 3 , 26 , 27  Women are expected to deal\nwith severe pain within the confines of daily life without complaint, creating\ndiscourses of disempowerment \n 39 \n  and consequences for those who cannot or will not accept this burden. \n 26 \n  Research has also found that women with endometriosis often lack the\ntools to express the severity of their pain to healthcare professionals without\nresorting to overused metaphors that may not be believed, \n 40 \n  reflecting the difficulty in accurately communicating the lived\nexperience of pain. \n 41 \n  In particular, Bullo \n 40 \n  found that the complexity of pain experience is difficult to describe\nbecause the ways in which pain is described are overused and cannot convey the\nmagnitude and complexity of individual experiences. In addition, issues of\nuncertainty around aspects of endometriosis such as cause, diagnosis and the\nbest treatment can affect how women and health professionals interpret and\nmanage the pain. \n 25 \n  We argue that research around endometriosis-related pain to date has\ndiscussed some aspects of women’s pain experiences, such as how pain affects\ntheir quality of life and the psychological and emotional aspects of pain, but\ndoes not offer detailed descriptions of its diversity and complexity.\nUnderstanding more about this may help researchers to understand which\ninterventions might be helpful to women, and provide clinicians with more\nunderstanding about how different endometriosis pains are for different women.\nThis study explores the complexity and variability in how women with\nendometriosis experience their pain.\n\nWe conducted a qualitative interview study with 20 women diagnosed with\nendometriosis. We obtained ethical approval from the School of Health and\nRelated Research (ScHARR) Ethics Committee (Study 156019) at the University of\nSheffield.\nWe initially approached participants through a local endometriosis support group\nin the north of England. These local groups exist throughout the United Kingdom,\nmeeting monthly to offer women support in living with and managing their\ncondition. We approached a convenience sample of women attending group meetings\nand via an online Facebook group and email mailing list. We introduced the\nstudy, inviting only those with a laparoscopically confirmed diagnosis of\nendometriosis to contact the researchers or leave their details if they were\ninterested. Snowball sampling was then used with participants and support group\nleaders to increase the diversity of the sample by identifying participants with\nmore complex and rare types of endometriosis. These women were then approached\ndirectly via email to ask if they were willing to take part. Participants\nreceived an information sheet detailing the study. We used email or telephone\ncalls to arrange interviews at a time and place convenient for participants. We\napproached 20 participants for interview who were all interviewed. This sample\ngave us rich data with expert participants and was large enough for replication\nto occur within conceptual categories leading to data saturation. \n 42\nInterviews took place between May 2017 and August 2018. After obtaining written\ninformed consent, B.A. (a clinician undertaking an MSc dissertation under\nsupervision of S.D., qualitative researcher) conducted 10 interviews following a\ntopic guide developed from the existing literature that included describing\nsymptoms, describing in-depth the different types of pain, and where and how the\nwomen experienced their pain. These interviews were analysed for the MSc\ndissertation. The research was excellent but needed a larger sample for data\nsaturation. J.L. (qualitative researcher) conducted a further 10 interviews\nlooking to extend the diversity of types of endometriosis. Interviews were\nconducted in participant’s homes (n = 12), private rooms in workplaces (n = 4)\nand at the university (n = 4) depending on participant preference. As this was a\npotentially emotive subject, participants were informed that they could stop the\ninterview at any time if they wanted to and were free to withdraw at any point.\nIf they became distressed, they were asked if they required any further help\nfrom the support group or other healthcare professionals. All interviewees were\nable to continue the interview. Interviews lasted between 30 and 105 minutes.\nInterviews were digitally audio-recorded and transcribed verbatim by a\nuniversity-based transcription service. We gave all participants pseudonyms to\npreserve anonymity in the results.\nWe did a two-stage analysis using NVivo™. B.A. coded the first nine interviews\nthematically using the six phases outlined by Braun and Clarke \n 43 \n : familiarisation with the data, generating codes, searching for themes,\nreviewing themes, defining themes and writing up the themes. Throughout the\nprocess, B.A. discussed themes with S.D. In the second stage of analysis, J.L.\ncoded the remaining 11 interviews to existing themes and identified additional\nthemes in discussion with S.D. In describing the complexity that we were seeing\nin the data, we brought together the themes of types, patterns and intensities\nof pain into individual constellations to show how they interrelated to create\nindividually diverse experiences of pain. Although it is not common to count\nnumbers of participants in qualitative research, we chose to display in brackets\nthe numbers of women in our sample who described particular types of pain to\nshow that women experienced more than one type of pain.\n\nOur participants were 20 UK women over 18 years of age with a laparoscopically\nconfirmed diagnosis of endometriosis. Participants were mainly aged between 31 and\n40, employed, and married or in a long-term relationship. Most had experienced\nsymptoms for over 10 years, with eight participants waiting over 10 years for a\ndiagnosis ( Table 1 ).\nWhile we did not collect data directly on comorbidities, the women in our sample\nreported other conditions such as polycystic ovary syndrome (PCOS) (n = 4), fibroids\n(n = 1), adenomyosis (n = 2), non-endometriosis cysts (n = 1), anaemia (n = 1),\nirritable bowel syndrome (n = 1), rheumatoid arthritis (n = 1), acephalgic migraine\n(n = 1) and hypertension (n = 1). All women were taking some form of pain\nmedication. This ranged from over the counter medication such as paracetamol,\nibuprofen and low-dose co-codamol, to strong prescription pain killers such as\nnonsteroidal anti-inflammatory drugs (NSAIDs), opioids, non-opioids,\nmigraine-specific medication, benzodiazepam, anti-depressants and epilepsy\nmedication. Some participants had a cocktail of medications to take when the pain\nwent from mild to severe.\nParticipant characteristics (n = 20).\nWe first present the conceptual categories identified from participants’\ndescriptions of their pain based on a wide variety of types of pain, patterns of\npain and intensities of pain to create a conceptual understanding of the\ncomplexity of pain in endometriosis ( Figure 1 ). We second show how these\nconceptual categories came together to create a complex, interrelated experience\nfor each woman that we have termed ‘constellations of pain’, highlighting the\ncomplexity and uniqueness of each woman’s pain. We illustrate this by drawing\ncomplex pain maps of these constellations for two women. We also describe some\nof the consequences of pain including the psychological and emotional\nimpact.\nA conceptual understanding of endometriosis-related pain by pain types,\npatterns and intensities forming constellations of pain.\nThere were many different types of pain described by participants depending\neither on the site of occurrence in the body, for example, groin, nerve, muscle,\nor its occurrence during a particular activity, for example, during urination or\nsexual intercourse. Participants reported more than one type of pain, ranging\nfrom three to eight, with over five types reported on average.\nPelvic pain occurred in the lower abdomen during menstruation (dysmenorrhea,\nn = 16) and outside of menstruation (non-menstrual pelvic pain, n = 17).\nThese types of pain varied in sensation that was linked to intensity. It was\ndescribed by some as ‘an ache’ and ‘like a sort of cramp’ which felt ‘like\nsomeone’s pushing or squeezing inside’, others described it as a ‘stabbing\npain’ almost ‘like somebody’s got a knife on your inside’. For a few others,\nit was a pain that ‘came in waves’ and felt like their ‘muscles were slowly\nbeing ripped out’:  I can’t get a handle on the pain, I can’t sit, I’m not comfortable,\nlike I’m kneeling on the floor and laying with my head on the sofa\nclutching my belly. . .like somebody’s punched you really hard or\nsomething but constantly. (Isabel)\nI can’t get a handle on the pain, I can’t sit, I’m not comfortable,\nlike I’m kneeling on the floor and laying with my head on the sofa\nclutching my belly. . .like somebody’s punched you really hard or\nsomething but constantly. (Isabel)\nSome had the pain predominantly on one side of their abdomen, while for\nothers it could occur on any side. For some women, non-menstrual pelvic pain\nwould worsen around their period, becoming severe dysmenorrhoea.\nParticipants described pain related to sexual intercourse (n = 14) as a\n‘drawing, dragging pain’ that radiated down their thighs; others talked\nabout experiencing ‘a sharp stabbing-type pain’ during intercourse and\nsometimes up to a few days afterwards. Some women experienced pain during\nany form of intercourse while others felt it only after deep penetration or\nduring orgasm, causing them to avoid intercourse completely; this could put\na strain on relationships and affect self-esteem:  Sometimes it can be ok and it’s not until orgasm that its painful and\nI can be just curled up in a little ball because it’s really\nuncomfortable, which is obviously not very nice when it’s supposed\nto be a pleasurable thing. (Fiona)\nSometimes it can be ok and it’s not until orgasm that its painful and\nI can be just curled up in a little ball because it’s really\nuncomfortable, which is obviously not very nice when it’s supposed\nto be a pleasurable thing. (Fiona)\nThere were also differences in the pattern of how women experienced\ndyspareunia; some only felt it around menstruation, while for others it\nrepresented a constant problem throughout the month.\nWith the onset of endometriosis, opening up the bowels became ‘really\npainful’ for some participants (n = 15), with one describing it as ‘a pin\nwas being shoved into your bowel’ (Yvonne). For some participants the pain\nwould sometimes start long before they needed to use the toilet. Dyschezia\nwas sometimes also associated with bloating and a change in bowel habit to\neither diarrhoea or constipation or a combination:  I was going between constipated and diarrhoea quite frequently\nthroughout the week and all in a day sometimes. And it almost felt\nlike, even with diarrhoea it felt like that sort of constipated\nsharp, almost like a tearing inside feeling. . . (Yvonne)\nI was going between constipated and diarrhoea quite frequently\nthroughout the week and all in a day sometimes. And it almost felt\nlike, even with diarrhoea it felt like that sort of constipated\nsharp, almost like a tearing inside feeling. . . (Yvonne)\nThe pain could be more severe or occur only around menstruation:  emptying my bowels can be quite painful. It’s strange because it’s\nonly painful when the rest of my pain is going on. It’s not like\nit’s an ongoing thing throughout the month. (Fiona)\nemptying my bowels can be quite painful. It’s strange because it’s\nonly painful when the rest of my pain is going on. It’s not like\nit’s an ongoing thing throughout the month. (Fiona)\nSome participants found that constipation aggravated the pain and could be a\nside effect of pain medication, which for one participant felt like a bowel\nobstruction. Another found that the cause of her bowel pain was the\nattachment of her bowels to her ovaries causing ‘excruciating’ pain.\nSome participants (n = 10) described dysuria and other bladder-related pain.\nParticipants often described dysuria as a ‘burning pain’ on urination\nsimilar to experiencing a urinary tract infection. This was usually worse in\nthe mornings, especially if their bladder was already full and needed\nemptying, and sometimes intense enough to wake them up:  And also the more full my bladder was the more painful it was on\nemptying and for a while afterwards. (Olivia)\nAnd also the more full my bladder was the more painful it was on\nemptying and for a while afterwards. (Olivia)\nParticipants also noticed that concentrated urine could serve as a pain\ntrigger:  if I didn’t have a lot of water before I went to sleep I was\nguaranteed to have the pain in the morning, so was I just sensitive\nto like how concentrated my urine was. (Yvonne)\nif I didn’t have a lot of water before I went to sleep I was\nguaranteed to have the pain in the morning, so was I just sensitive\nto like how concentrated my urine was. (Yvonne)\nIncreasing fluid intake to circumvent concentration of urine was also\nproblematic however, as it could result in higher frequency of urination\nthat could be painful and frequent trips to the bathroom during the night,\naffecting sleep.\nOf those participants who did not experience dysuria, one reported having had\ntheir bladder repositioned during surgery for endometriosis on the bowel and\nkidneys, while another had difficulties starting to urinate and felt like\nshe was  weeing over a bubble [] it feels like there is something there.\n(Naomi)\nweeing over a bubble [] it feels like there is something there.\n(Naomi)\nFewer participants (n = 5) reported having ‘constant’ back pain in addition\nto other symptoms. The pain was present throughout their menstrual cycle but\ncould be particularly bad during menstruation:  I developed this horrible back pain along my lower back that is now\npersistent with me and particularly during periods. (Susanne)\nI developed this horrible back pain along my lower back that is now\npersistent with me and particularly during periods. (Susanne)\nPelvic pain was often reported as radiating down to the lower limbs (n = 12),\ncausing limited mobility when it occurred. This could sometimes be sudden,\nand was described as ‘sciatica-type pain’ (Fiona):  I could be walking on the street and would just get it and I’d just\nhave to stand still because you can’t even move. There’s nothing\nelse that you can do. (Val)\nI could be walking on the street and would just get it and I’d just\nhave to stand still because you can’t even move. There’s nothing\nelse that you can do. (Val)\nSome women experienced other types of pain that they linked to endometriosis\ndue to other symptoms occurring at a similar time. Upper body pain was most\ncommonly reported (n = 9), which if severe could lead to breathlessness.\nThis included chest pain that one participant reported came from a collapsed\nlung, and breast, back and upper body pain. A similar number described\nheadaches or migraines (n = 8) that could occur in the run up to or during\nmenstruation, and could be accompanied by other symptoms such as sensitivity\nto light and noise and numbness. A few reported ovulation pain (n = 3),\nwhich was cyclical and occurring mid-cycle when ovulation was due to take\nplace. It was described as being a ‘dull sensation’ by one participant,\nwhile another said she felt her ovaries were being pinched:  I can feel my ovaries and it feels as if someone’s got a pair of\npliers that you would separate electric wires with. It feels as if\nsomeone’s pinching the ovaries like that. (Barbara)\nI can feel my ovaries and it feels as if someone’s got a pair of\npliers that you would separate electric wires with. It feels as if\nsomeone’s pinching the ovaries like that. (Barbara)\nHowever, for women attempting to conceive, ovulation pain helped to inform\nthem when they were ovulating and from which ovary, although doctors had\ntold them it was impossible to know when or on which side they ovulated.\nOther less common pains were kidney pain (n = 3), earache (n = 1), muscle and\njoint pain (n = 1) and severe nerve pain (n = 2):  I was getting stabbing, really sharp stabbing pains, like somebody\nwas sticking a needle in my eye like jabbing it in my eye, then I’d,\nyou know 2 seconds later it would happen in my knee, [oh, ok] or the\nbottom of my foot, or it would shoot out of my toe nail, my hands\nwere and my skin was burning in different places, the soles of my\nfeet were burning. (Mel)\nI was getting stabbing, really sharp stabbing pains, like somebody\nwas sticking a needle in my eye like jabbing it in my eye, then I’d,\nyou know 2 seconds later it would happen in my knee, [oh, ok] or the\nbottom of my foot, or it would shoot out of my toe nail, my hands\nwere and my skin was burning in different places, the soles of my\nfeet were burning. (Mel)\nParticipants described four different patterns of pain – cyclical, constant,\nrandom and changing.\nMost women noticed a pattern to their pain, experiencing cyclical\ndysmenorrhea, dyspareunia or constant pain that became worse around\nmenstruation:  It seems to end within a week or sometimes two, and then I will find\nI’m spending the next few weeks drained, and getting sort of a\nvicious circle. (Nicola)\nIt seems to end within a week or sometimes two, and then I will find\nI’m spending the next few weeks drained, and getting sort of a\nvicious circle. (Nicola)\nSome women described how dyschezia, dysuria, ovulation or migraines also had\na cyclical pattern. Some women felt dyspareunia only around the time of\ntheir period, while for others it represented a constant problem throughout\nthe month.\nHowever, cycles could vary from a couple of weeks to a few months depending\non hormonal medication and other conditions such as polycystic ovaries. The\npain also often lasted longer than menstruation or built up for several days\nbefore but eased as menstruation started. Others described the pain\nworsening during menstruation and often accompanied by heavy bleeding, or\ncontinuing beyond the end of their period.\nSome participants reported experiencing pain on a daily basis rather than\nvarying during their monthly cycle:  I can’t remember the last day when there wasn’t something.\n(Sally)\nI can’t remember the last day when there wasn’t something.\n(Sally)\nThe pain could be ‘constant’, ‘switched on’ and persistent although varying\nin intensity:  . . .and then for whatever reason. . .something just switched on and\nfrom that moment on its been a constant like period-like pelvic\npain, and it would hurt, for a few days it would hurt like a lot.\n(Yvonne)\n. . .and then for whatever reason. . .something just switched on and\nfrom that moment on its been a constant like period-like pelvic\npain, and it would hurt, for a few days it would hurt like a lot.\n(Yvonne)\nAlthough some women noticed a fairly predictable pattern forming around their\nmonthly cycle, others reported no consistency in their pain:  My pain is very very strange, sometimes like people would get it\nduring the time of their period, mine is just random, it comes\nwhenever it wants to. . . I never knew when it was coming.\n(Bethan)\nMy pain is very very strange, sometimes like people would get it\nduring the time of their period, mine is just random, it comes\nwhenever it wants to. . . I never knew when it was coming.\n(Bethan)\nParticipants also described certain triggers of pain such as foods and\ndrinks, stress, or not drinking enough. Participants perceived the ‘random’\nnature of their pain as ‘strange’ and unpredictable, which was challenging\nbecause there was no way to prepare for something that could happen anywhere\nand anytime. Participants described particular difficulties dealing with\nthis pattern; for example, one participant was dreading her wedding day in\ncase she had a flare up while another described not knowing how to prepare\nfor trips away in case she needed hot water bottles and how much pain\nmedication to take.\nParticipants also described how the pattern or intensity of their pain\nchanged over time. For some participants, pain worsened through the day,\nwhile for others there was a progressive worsening in severity over a period\nof months or years, changing from only happening during menstruation to\nbeing a constant throughout the month. Constant pain could still vary in\nintensity, with some participants noticing triggers such as opening the\nbowels, or cyclical patterns as described above:  Everything was happening you know 24/7 throughout the month, but\ncertainly there would be a peak before my period and during my\nperiod and then also towards the end of my period. (Mel)\nEverything was happening you know 24/7 throughout the month, but\ncertainly there would be a peak before my period and during my\nperiod and then also towards the end of my period. (Mel)\nPain could reduce after medical treatment or surgery only to worsen again\nresulting in worsening quality of life and the need for stronger medication;\nin one case, pain even increased after surgery.\nPain went from mild pain, where participants felt able to function, to more\nmoderate pain and severe, disabling pain. Mild pain was described as\n‘uncomfortable’, ‘dull’, ‘annoying’ pain, around 3 or 4 out of 10, that could be\nignored more easily or managed with over-the-counter painkillers such as\nparacetamol or ibuprofen and did not interfere with quality of life. Moderate\npain was described as ‘quite strong pain’, ‘really painful’ ‘bent over double’\n‘between a 7 and an 8’. Participants described how it could significantly affect\ndaily life, but could be managed by stronger painkillers. Some women however\nexperienced such severe pain that it was disabling despite taking large amounts\nof strong painkillers. Participants described being bedridden, scoring the pain\nas 10 out of 10, and reducing them to tears, experiencing nausea, vomiting,\nfainting or even causing a seizure.\n. . .and I’d be crawling to the toilet on all fours because if you []\nwake up in the morning or even in the middle of the night and you sit up\nand swing your legs out of bed, I’d just be gone, I’d just faint. I was\nthat weak and in that much pain. (Barbara)\n. . .and I’d be crawling to the toilet on all fours because if you []\nwake up in the morning or even in the middle of the night and you sit up\nand swing your legs out of bed, I’d just be gone, I’d just faint. I was\nthat weak and in that much pain. (Barbara)\nThe pain became so unbearable for some that they attended emergency departments;\nfor example, one participant described having difficulty breathing but struggled\nto receive appropriate help, sometimes being misdiagnosed with appendicitis or\nectopic pregnancy.\nIt was not always the case that some participants had mild pain while others had\nsevere, as for some participants, severity varied throughout their cycle:  green is like my symptoms are so mild they don’t bother me or are\nnon-existent, orange is they bother me and they interfere with what I’m\ndoing but I can still do stuff, and red is I can’t do anything, it’s\ncompletely wiped me bedridden. (Helen)\ngreen is like my symptoms are so mild they don’t bother me or are\nnon-existent, orange is they bother me and they interfere with what I’m\ndoing but I can still do stuff, and red is I can’t do anything, it’s\ncompletely wiped me bedridden. (Helen)\nAnother aspect of pain linked to intensity was how invasive the pain was, that\nis, how much the pain interfered with everyday life. While severe pain was often\nmore invasive, this was not always the case. For example, one participant\ndescribed how it was easier to ignore a dull moderate pain than another milder\nbut more constant pain:  it can be mild but it can still be very insistent and distracting,\nwhereas the dull sensation I can kind of put in the corner of my brain\nand ignore. (Helen)\nit can be mild but it can still be very insistent and distracting,\nwhereas the dull sensation I can kind of put in the corner of my brain\nand ignore. (Helen)\nIn contrast, other participants described how they could ignore more constant\npain because they had become accustomed to it, and just pushed through it:  just like a dull ache, I suppose like period pain, but it’s there all the\ntime [] which I’ve grown to, it’s just there I know it’s there.\n(Hannah)\njust like a dull ache, I suppose like period pain, but it’s there all the\ntime [] which I’ve grown to, it’s just there I know it’s there.\n(Hannah)\nThe different aspects of pain described above did not exist in isolation, but\nwere interrelated into constellations of pain experienced by individual women.\n Figures 2  and  3  show constellations of\npain for two participants in which pain type, pattern and intensity interrelate\nin different configurations; so each type of pain has its own pattern and\nintensity. In  Figure 2 ,\nElizabeth described six different types of pain including five types of cyclical\npain (dyschezia, dysuria, dysmenorrhea, migraine and lower back pain) and one\ntype of random or intermittent pain (dyspareunia). She experienced pain\naffecting her pelvis, bowel (severe shooting pain), bladder (irritation and\nburning), lower back and legs, (aching and cramping) and head (severe\nmigraines). It impacted on bodily functions such as urination, bowel movements\n(bowel feels obstructed) and sexual intercourse (shooting pain) and was\naccompanied by other symptoms such as nausea. Although the pain was cyclical,\nElizabeth’s cycle was extremely short so the pain was every 2 weeks rather than\nthe expected 4 weeks.\nElizabeth’s constellations of pain.\nYvonne’s constellations of pain.\nIn  Figure 3 , Yvonne also\ndescribed five similar types of pain (dyschezia, dysuria, dysmenorrhea, migraine\nand lower back pain). Unlike Elizabeth, however, Yvonne also described shoulder\npain rather than migraine. The pattern of pain for Yvonne was also different,\nwith three types of constant rather than cyclical pain (pelvic pain worsening to\ndysmenorrhea, dyschezia worsening during menstruation and dysuria worsening\naround urination or from a lack of fluids). While she shared Elizabeth’s random\ndyspareunia, Yvonne also described both her back pain and shoulder pain as\nrandom and intermittent rather than cyclical. While there were some similarities\nin the descriptions of some pain (lower back pain), there were notable\ndifferences. Yvonne’s description of dysuria matched Elizabeth’s to some extent\n(burning) but she also described urgency and sharp pain. Dyschezia seemed\nqualitatively different with Elizabeth describing it as shooting and severe,\nwhile Yvonne described it as sharp, tearing and tender. Yvonne also described a\ncramping, squeezing and aching pain in the pelvic area, which Elizabeth\ndescribed as severe cramping into her legs.\nWhile pain was a significant aspect all the participant’s endometriosis\nexperience, the majority also reported many other related symptoms caused by or\nrelated to the pain. Fatigue (n = 15) was frequently a direct result of pain,\nbut could also be due to anaemia from heavy bleeding, broken sleep from dealing\nwith pain or other symptoms such as frequent urination, or medication that\ncaused tiredness or insomnia. Women often reported that pain was bound up with\npsychological and emotional symptoms stemming from living with pain, which\ncaused low mood, mood swings or anxiety (n = 12), which caused pain to be more\nintense or harder to tolerate when they were anxious or down. Many medications\nalso affected mood, particularly hormone treatments which for some triggered\nsevere mood swings or depression which some found harder to manage than the\npain. Other effects of endometriosis and/or medication, such as diagnosis\ndelays, weight gain, social isolation and relationship or work difficulties also\nsignificantly influenced self-esteem and mood:  I’ve not always been bent over double in pain, I’m probably in pain in my\nbrain, where I’ve been tired, stressed tired, when your eyes are heavy,\nand you can’t cope and it is, it’s horrible you feel like you are by\nyourself, it is a depressive disease to be in. (Wendy)\nI’ve not always been bent over double in pain, I’m probably in pain in my\nbrain, where I’ve been tired, stressed tired, when your eyes are heavy,\nand you can’t cope and it is, it’s horrible you feel like you are by\nyourself, it is a depressive disease to be in. (Wendy)\nA number of women (n = 9) experienced anxiety linked to difficulties conceiving,\nor uncertainty as to whether they would struggle to conceive in the future.\nHeavy bleeding was experienced by 12 participants, sometimes accompanied by\nclots, long periods and/or frequent periods (i.e. more often than once a month).\nBloating was also a common problem (n = 9), sometimes causing significant\ndiscomfort that could be cyclical or constant and made some participants need to\nwear bigger clothes or look pregnant, particularly difficult if they were unable\nto conceive. Poor concentration and memory problems (n = 7) were also difficult\nto deal with, along with a range of digestive symptoms in the bowel (n = 5), and\nnausea and/or vomiting (n = 4) that was accompanied by dizziness for two\nparticipants. Other symptoms included hot sweats (n = 3), skin problems related\nto medication or repeated use of hot water bottles (n = 3), low-grade fever\n(n = 2), weight gain (n = 2) and nosebleeds (n = 1).\n\nIn this article, we have presented three conceptual categories relating to\nendometriosis-related pain: pain types, patterns and intensities. We showed a wide\nrange of variation within each of these categories and then how they interrelated to\ncreate what we termed constellations of pain that are unique to each woman’s pain\nexperience. Our findings have implications for research and clinical practice.\nResearch into endometriosis-related pain often focuses on cyclical dysmenorrhea\nand non-menstrual pelvic pain and how they impact quality of life and more\nrecently mental health. 14 , 16 , 30  We found examples of the three classic forms of\nendometriosis pain identified by Bourdel et al. \n 44 \n : dysmenorrhea, non-menstrual chronic pelvic pain and deep dyspareunia.\nLike other researchers we also found evidence of many other types of\nendometriosis-related pain, including dyspareunia, 15 , 34 , 36 , 45  chronic and cyclical\ndyschezia, dysuria, ovulation pain, lower back pain, headache including migraine\nand groin pain. 15 , 34 , 36  Our research also adds to the limited evidence around\nendometriosis affecting the upper body, including breast, upper back and\nshoulder pain. \n 36 \n  In addition to types of pain already identified in the literature, we\nfound that women also linked earache, muscle and joint pain, and nerve pain to\ntheir endometriosis. These other types of pain have received less attention\nbecause they are not related to surgical diagnosis \n 46 \n ; however, our research has shown that they are still problematic for the\nwomen experiencing them.\nEndometriosis-related pain is often presented as cyclical pelvic pain occurring\nin the run-up to, or during menstruation. Some research has challenged this\nrepresentation, for example, in the previous works, 26 , 36  and our study supports that. We\nfound that some women in our sample experienced random episodes of pain that\nthey found particularly challenging to deal with because it created\nunpredictability leading to challenges dealing with uncertainty 26 , 28  and creating\ncoherence in life. \n 28 \n  We also found that some women experienced constant pain that increased in\nintensity during menstruation and for others pain started as cyclical but\nworsened to be more severe, \n 33 \n  persistent and pervasive, which has been linked to poor quality of life. \n 47 \n  Research has suggested that experiencing pain may lead to sensitisation\nof the nervous system 12 , 13 , 48  recognised as a reason for pain to become more pervasive\nover time \n 49 \n  however, participants believed that their endometriosis was\nworsening.\nIn addition, we found that intensity did not always relate to how intrusive pain\nwas to everyday life. \n 48 \n  Some less intense pain was experienced as more difficult to manage.\nResearch has suggested that these differences in attentional focus are important\nin understanding how pain affects lives because severe pain can consume every experience \n 50 \n  or prevent attention being paid to other aspects of experience leading to suffering. \n 51\nWe used semi-structured interviews to understand how women with endometriosis\nexperienced their pain. Most endometriosis-related pain research we found was\naimed at creating clinical measures of pain for clinical studies, and as such\nrepresents the product of a particular epistemological community. \n 41 \n  In contrast, our study aimed to describe the complexity and diversity of\nendometriosis-related pain from the perspective of the women experiencing it.\nThe women we recruited were from a local endometriosis support group and may not\nbe representative of all women with endometriosis, in terms of pain experience\nand socio-demographic characteristics such as ethnic diversity. Women with\nsevere pain may have been more likely to agree to be interviewed than women with\nmore minor symptoms. We also did not collect details of comorbidities or lists\nof pain medications although we asked women about these. However, a strength of\nour study is the representation of the complexity of the different types,\npatterns and intensities of pain, and how individuals experience these\nconstellations, as this is not well represented in the literature. Future\nresearch should consider the experiences of minority groups including men and\ntransgender males who may not identify with these descriptions.\nParticipants’ experiences of endometriosis-related pain were variable, complex\nand embedded in wider experiences of endometriosis symptoms. Research has\nhighlighted the importance of understanding ‘pain as a lived event’ \n 51 \n  in which it is essential to understand how the person understands their\npain and how it impacts on their life. Difficulties in describing experiences of\npain due to its invisibility and subjective nature can lead to a vagueness in\ndescribing symptoms, 9 , 40  while the gendered nature of endometriosis-related pain can\nmean severe pain is normalised. 3 , 26 , 27  These difficulties mean\nthat patients may not be believed or find it difficult to communicate the\nseverity of their pain without resorting to cliches. \n 40 \n  Furthermore, if clinicians 39 , 40  focus on presentation of cyclical\npain as a diagnostic factor, 46 , 52 \nwomen who present with other experiences, such as random or constant pain may be\ndisbelieved adding to delays in diagnosis and treatment and feelings of\nfrustration and disempowerment. \n 39 \n  Issues of uncertainty around aspects of endometriosis such as cause,\ndiagnosis and the best treatment can affect how women and health professionals\ninterpret and manage the pain \n 26 \n  and creating issues for diagnosing endometriosis through presentation of\ncyclical pain.\nIn this article, we have identified a number of types, patterns and intensities\nwhich clinicians could use to help women describe the multiplicity and\ncomplexity of their pain experiences, which women may not have associated with\nendometriosis, or may have feared would be dismissed as hysterical or\nexaggerated. 3 , 27 , 41  The complexity of the constellations of pain presented in\nthis study has implications for the psycho-emotional impact of pain on quality\nof life, which suggests that clinicians need to take a wider biopsychosocial approach \n 53 \n  to reflect the full lived experiences of pain in people with\nendometriosis. We suggest that  Figure 1  could act as a tool to allow women to describe their\nconstellation of pain to clinicians.\n\nWe have shown that women with endometriosis can experience a complex array of pain\nsymptoms that are not only cyclical but can be constant or random, creating\ndifficulties with unpredictability. The descriptions of pain displayed here could\nhelp people with endometriosis and clinicians communicate about pain types, patterns\nand intensities, which might help with earlier diagnosis and identifying strategies\nfor symptom relief.","source_license":"CC-BY-4.0","license_restricted":false}