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Table 2 Concept elicitation interviews: overview of key symptoms and impacts reported by participants (N = 30)

From: The endometriosis daily diary: qualitative research to explore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain

Concept Sub-concept Example quaote (patient ID)
Pelvic pain or cramps (including dysmenorrhea) Pelvic pain or cramps (n = 30) “The main symptoms I have is pelvic pain, I have a lot of pain. I'm constantly wondering if I'm going to have more pain, and, when my period starts, it gets kind of even worse” (1–01-49-C-OT)
Vaginal bleeding Heavy menstrual bleeding (n = 29) “I can easily go through a pack and a half of like the Always Overnights, uh, which is about 24 pads in a day. And, and usually I double up. I'll have the overnight pad with like the, the super tampons and I can't count how many of those I use, like 48 of those.” (2–02-31-C-OT)
  Non-menstrual bleeding (n = 16) “The spotting is usually, um, like it happens at different times … and I'm nowhere near the time when it's time for my cycle.” (1–19-34-C-OT)
Dyspareunia* Dyspareunia (n = 16) “Having sex is extremely uncomfortable.” (3–04-37-NC-NT)
Symptoms associated with pelvic pain or cramps Tiredness (n = 29) “I just feel like someone's just like draining out of me, and so I just like feel really drowsy, because I'm just in like so much pain… and so it just like really takes a lot out of me.” (1–05-17-C-OT)
  Nausea (n = 26) “It makes you feel like you sick to your stomach. You may not have to, you know, puke or vomit, but you feel like you want to.” (2–04-39-CNC-OT)
  Loss of appetite (n = 26) “The cramping, um, it prevents me from eating… I can't eat.” (1–08-34-NC-OT)
  Hot flashes (n = 16) “sometimes I'll get temperature… it feels like it just gets warm. Like, when I’m having the pain, the temperature rises.” (1–03-31-C-OT)
Bowel symptoms Constipation (n = 16) “I be constipated…every menstrual cycle.” (2–04-39-CNC-OT)
  Bowel-related pain (n = 13) “I was getting a pain in my stomach that felt like somebody was stabbing me inside the stomach… But it was coming from my rectum all the way to the stomach… So it felt like they were stabbing me with a knife.” (1–08-34-NC-OT)
  Diarrhea (n = 12)  
   “When the cramps were really, really bad, then the bowel movements would be like literally as smooth as butter.” (3–04-37-NC-NT)
Emotional functioning Feel frustrated (n = 23) “I'm the only one experiencing this pain, and like the littlest things will start annoying me, just because I want to be left alone.” (1–06-17-CNC-OT)
  Feel worried (n = 17) “I got pads, I got all kind of protection, I'm wondering about my clothes, and sometimes I keep an extra set of clothes in the car, you know, it's a constant, you know, I got to worry about it.” (1–01-49-C-NT)
  Feel sad (n = 15) “…kind of like upsetting because I really want to hang out with them and like be able to do like what else they can do, um, like with all the active stuff they do.” (1–10-15-C-NT)
  Mood swings (n = 11) “…one day I'll be crying and sad for no reason. The next day I'll be happy, so, yeah, it affects me a lot.” (1–08-34-NC-OT)
Physical functioning Sport or exercise (n = 26) “I don't work out when I have my period… I think it's the whole bleeding and cramping… and, if I do work out, it's very minimal…it's more like walking. There's no abdominal muscle movements.” (1–07-48-NC-NT)
  Difficulty walking (n = 23) “…it's mostly the movement, like walking, and I can't do much, I'm always cautious this is going to start the pain… I don't just walk around like I used to.” (1–01-49-C-NT)
  Difficulty lifting or carrying things (n = 16) “I don’t lift anything. I can't. I feel like I can't. I don’t have the strength.” (2–08-31-CNC-NT)
  Difficulty getting up or standing up from sitting (n = 13) “…I went to stand up and I couldn’t the pain was so severe. Like I was sitting to standing, and then I actually had to stop and bend over and it took my breath away.” (3–04-37-NC-NT)
Social or leisure activities Social or leisure activities (n = 24) “…it does limit you doing things going—like I said, going shopping. Just hanging out with friends, you know, so it's just tough some days.” (3–04-37-NC-NT)
Work Missing days off work (n = 13; 12 adults and 1 adolescent) “…I may not be able to go to work because I didn’t get enough sleep or, or I'm really uncomfortable.” (1–13-48-CNC-NT)
Sleep disturbance Night-time awakening (n = 17) “it's just uncomfortable to sleep so tossing and turning a little bit more… needing to get up and change pads just in case. Checking to see if I need to change a pad… so it's less comfortable sleep.” (2–02-32-C-OT)
  Difficulty getting to sleep (n = 13) “It's very difficult to fall asleep, because they said, since I'm always in pain… so like it messes with my sleep. That's why I sometimes take Ambien.” (1–08-34-NC-OT)
Sexual functioning* Avoidance of sexual activity (n = 13) “…sometimes it's painful… and I can kind of tell I guess by the way that I feel like that mid-month time that it might be painful, so I'll kind of like abstain instead of making it a big deal.” (2–03-37-C-NT)
  Reduced sexual desire or interest (n = 10) “…it's like something I don’t want to do. I'm not like interested. You know, like because it's not really going to benefit me at all. It's going to cause me pain.” (2–08-31-CNC-NT)
School Missing days off school (n = 12; 9 adolescents and 3 adults) “…some days I stay home because my cramps get really bad in the morning so my mom just lets me stay home and basically sleep all day.” (1–09-12-C-NT)
  1. *Dyspareunia and impacts to sexual functioning were only discussed with adult participants (N = 20)