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Table 2 Concept elicitation interviews: overview of key symptoms reported by women with endometriosis (n = 45)

From: Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

ConceptSub-conceptExample Quote (Patient ID#)
Pain (n = 45)Constant pain (n = 40)The consistent ache - you see, because the consistent ache, the dull ache is there every single - it’s hurting right now as I’m sitting here talking to you.” (306)
Short-term pain (n = 31)“I’ll get a pain in my pelvic area but it’s short-term. The duration isn’t like it is when my cycle is on.” (104)
DysmenorrheaPain during period (n = 43)“But on - during my menstrual cycle, when I was having my period, the pain was excruciating. At times it literally felt like a sword had been pierced right through my side, my left side” (306)
“…and sometime the pain is just - you know, especially around my menstrual period, it’s very painful, that all I can do is lay on the couch and just - and I might take Tylenol, but sometimes that doesn’t even help.” (206)
Pre-menstrual pain (n = 28)“I have a lot of pelvic pain and it gets worse, I think, about the week before my period, it starts to get really bad. I get a lot of stomach pains, a lot of lower back pain and then I get the period and the bleeding. “(106)
“Well, with my symptoms, they’re usually worse like the week before my period and during my period. So usually like the week before, I’m just in bed, very fatigued, feeling - just hurting, like cramping, like as if you would have menstrual cramps. I’m like that the week before my period, and then during my period, it’s like 100 times worse”. (204)
DyspareuniaPain during intercourse (n = 24)“I’ve had intercourse a couple of times, and sometimes that’s been very painful… It’s like a sharp pain. And then it’s a sharp shooting pain, and then it’s throbbing together afterward.” (206)
Pain after intercourse (n = 16)“The same type of pain, it sometimes stayed for 24 h, sometimes a few hours, sometimes… sometimes 2 or 3 days and then… that’s it.” (501)
Vaginal bleeding (n = 33)Heavy bleeding (n = 30)“They’re extremely heavy, like bad heavy. It doesn’t lighten up until like the last day.” (207)
Spotting (n = 14)“I’ll actually sometimes, like if I push myself too far, I’ll start bleeding. And sometimes it may just be like spotty bleeding.” (302)
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