Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Figures & data

Figure 1 Saturation of spontaneously reported symptoms and impacts of endometriosis. Each cohort is represented by a colored marker: yellow represents the first 25% of patients (n=10, 25.0%), green represents the second 25% of patients (n=10, 25.0%), blue represents the third 25% of patients (n=10, 25.0%), and orange represents the last 25% of patients (n=10, 25.0%).

Note: to journal: please could you move Figure 1 to where it is mentioned in the results section i.e. under the 'ICR and Concept Saturation' results section. The rationale for this is that the figure reports results from the analysis so is less appropriate in the methodology section

Table 1 Baseline Demographics, Educational Information, and Clinical Characteristics of Women with Endometriosis Interviewed^a

Baseline Characteristic	Interview Sample (N=40)
Age (years)
Mean (standard deviation)	33.1 (5.7)
Range	22–45
Race, n (%)
White	24 (60.0%)
Black or African American	15 (37.5%)
American Indian or Alaska Native	1 (2.5%)
Highest level of education, n (%)
High school (no degree) or less	1 (2.5%)
High school graduate	2 (5.0%)
Some college (no degree)	15 (37.5%)
Associate’s degree	7 (17.5%)
Bachelor’s degree	10 (25.0%)
Master’s degree	4 (10.0%)
Doctoral degree	1 (2.5%)

Notes: ^aInclusion criteria included surgically diagnosed endometriosis, and moderate-to-severe NMPP and dysmenorrhea. Dysmenorrhea: women who scored ≥4.0 for at least 2 menstrual days on the Numerical Rating Scale (NRS; 0=no pain, 10=pain as bad as you can imagine) for dysmenorrhea, in the run-in period. NMPP: women with an NRS score of at least 2.5 for NMPP, or a mean NRS score of 1.25 with a score of at least 5.0 on ≥4 days, in the run-in period. Women enrolled were required to have provided responses to patient-reported outcome measures at SPIRIT study baseline, for use during the interviews.

Abbreviations: NMPP, non-menstrual pelvic pain; NRS, Numerical Rating Scale.

Table 2 Quotes on Symptoms of Endometriosis Commonly Reported (≥20%) by Interviewed Women (Spontaneous and Probed Reporting Combined)

Symptom	N=40 n (%)	Example Quote from Interviewed Women
Pelvic pain	37 (92.5%)	I would describe it as a knife, being stabbed in your pelvis. … My pain is like a sharp pain sometimes. … Or there’ll be a shooting pain like a stabbing pain …
Dyspareunia	32 (80.0%)	The main concern is just it’s super painful during intercourse, even like throughout my entire cycle. … But then, during intercourse, it was 80% of the time extremely painful
Heavy bleeding^a	30 (75.0%)	My periods would be super heavy. I would take up … about 10 pads to 12 pads a day, because I bled so heavy
Bloating	23 (57.5%)	My stomach would completely do – it swells. It still swells and gets puffy … – you are just uncomfortable all the way around. … I would be bloated
Back pain	19 (47.5%)	I’d get like the lower back pain is where it would start, and it would kind of spread. … It would be like a dull pain
Nausea	17 (42.5%)	Most days, I woke up sort of nauseous … no matter what time of my cycle it was. … They kind of compared it to morning sickness
Abdominal pain	13 (32.5%)	I actually had abdominal pain during those times. … Like I was being stabbed and my insides were being twisted up
Fatigue	11 (27.5%)	And then it kind of – it just drains me. And I will be tired. I will be – I can – like when it’s happening, I will be fine, and like I can feel it just draining out of me
Headache/migraines	10 (25.0%)	Maybe – it usually starts about a week before my period comes – I will start getting headaches. And then while my period is on, I typically get a headache as well
Gastrointestinal distress^b	8 (20.0%)	It causes like cramps, constipation, diarrhea, all of that mixed into one
Lengthy/irregular cycle^c	8 (20.0%)	I have had abnormal bleeding. … Last year prior to me starting the trial, I literally bled every day

Notes: ^aRefers to amount or volume of bleed during menstrual cycle. ^bGastrointestinal distress includes the following spontaneously reported examples: vomiting, constipation, bowel issues, diarrhea, and upset stomach. ^cRefers to unpredictability and/or duration of menstrual cycle.

Figure 2 Symptoms of endometriosis commonly reported (≥20%) spontaneously and on probing by interviewed women. ^aRefers to amount or volume of bleed during menstrual cycle. ^bGastrointestinal distress includes the following spontaneously reported examples: vomiting, constipation, bowel issues, diarrhea, and upset stomach. ^cRefers to unpredictability and/or duration of menstrual cycle.

Figure 3 Pain concepts and their relationship to menstruation as reported by interviewed women with endometriosis (N=40).

Table 3 Example Quotes on Impacts of Endometriosis Reported, Both Spontaneously and on Probing, by ≥20% of Interviewed Women

Concept	Example Quote from Interviewed Women
Physical	There have been many times, though, when I am in so much pain that I cannot get up or move or walk
Daily living activities	… because even like even housework and things like that – it’s just I am just – when I am in that pain or when it hurts that bad, it’s just like I said – I am more inclined to come home and not do anything rather than even real simple housework
Social	… you start drifting away from people not even necessarily on purpose. … I feel like people just do not understand no matter how hard they try, and nobody wants to… hear you complain …
Sleep	It would be too painful to go to sleep. I would pretty much have to get up and take [analgesic medication] just to ease the pain
Emotional	I felt extremely frustrated. I would cry. I would be extremely frustrated and unable to cope with it. I would be emotional and distressed
Appearance	… because I can get really bloated and look skinny some time of the month and a little bit more overweight other times of the month
Financial	… when I had to have surgery, it did, because I had to come out of pocket with some of it …
Sex-related	The pain would sometimes get so bad that I would just stop. And it kind of made me turn against even wanting to have sex because I knew it was going to hurt
Work/School	… every single time I go on my cycle, I would just have to leave work. It was unbearable. … I started losing time at work and started exhausting all my vacation time

Figure 4 Impacts of endometriosis symptoms commonly (≥20%) reported spontaneously and on probing by interviewed women.