Supplementary Materials

Supplementary Table 1. Interviewers

Interviewer / Position / Gender / Training/experience for conducting interviews / Number of interviews conducted
William Lenderking, PhD / Vice President, Outcomes Research, Evidera / Male / Clinical psychologist with over 20 years of experience in the field of outcomes research / 8
Robin Pokrzywinski, PhD, MHA / Research Scientist, Evidera / Female / Epidemiologist with over 14 years of experience in the field of outcomes research / 11
Zaneta Balantac, BS / Research Associate III, Evidera / Female / Over 5 years of experience in the field of outcomes research / 8
Julia Ingram / Research Associate II, Evidera / Female / Over 2 years of experience in the field of outcomes research / 4

Supplementary Table 2. Symptoms presented to the participants in the card sorting exercise

Symptom as listed on the card
Abdominal pain / Longer cycles
Abdominal pressure / Low energy/lack of energy
Anemia-related fatigue / Lower back pain
Bedwetting / Nausea
Bleeding or spotting between periods / Pain
Bloating / Pain during intercourse (dyspareunia)
Blood clots during menstrual bleeding / Pain during menstruation/menstrual cramps (dysmenorrhea)
Blood in the urine / Pain during physical activity
Chest pain / Pain or aches in muscles or joints
Constipation / Pain or burning when passing urine (dysuria)
Diarrhea / Pain radiating down the legs
Difficult or painful defecation / Pain when sitting down
Difficulties with menstruation / Passing urine frequently
Dryness/tightness in the vaginal region / Pelvic pain
Enlarged uterus to the point where you look pregnant / Swelling or heaviness in legs
Fatigue - mental and/or physical / Tenderness
Feeling sudden urge to urinate; having an involuntary loss of urge / Tingling or numbness in hands or feet
Heavy menstrual bleeding / Tiredness, low vitality
Irregular bowel movement / Vomiting
Leakage of stools / Waking at night to urinate
Leaking urine

Supplementary Table 3. Saturation grid for the signs and symptoms of adenomyosis

Sign/symptoma / Participant interview
1 / 2 / 3 / 4 / 5 / 6 / 7 / 8 / 9 / 10 / 11 / 12 / 13 / 14 / 15 / 16 / 17 / 18 / 19 / 20 / 21 / 22 / 23 / 24 / 25 / 26 / 27 / 28 / 29 / 30 / 31
Heavy menstrual bleeding / X
Blood clots during menstrual bleeding / X
Bleeding or spotting between periods / X
Longer menstrual bleeding / X
Cramps (dysmenorrhea) / X
Lower back pain / X
Pain during intercourse (dyspareunia) / X
Abdominal pressure / X
Pelvic pain / X
Cramps (non-menstrual) / X
Tenderness / X
Leaking urine/incontinence / X
Passing urine frequently / X
Feeling sudden urge to urinate; having an involuntary loss
of urge / X
Waking at night to urinate / X
Dryness/tightness in the vaginal region / X
Nausea / X
Vomiting / X
Anemia-related fatigue / X
Enlarged uterus to the point where you look pregnant / X
Tingling or numbness in hands or feet / X
Pain (general or unspecified) / X
Other painb / X
Low energy/fatigue / X
Abdominal pain / X
Bloating / X
Swelling or heaviness in legs/feet / X
Pain radiating down the legs / X
Pain when sitting down / X
Pain or aches in muscles or joints / X
Pain during physical activity / X
Pain or burning when passing urine (dysuria) / X
Headaches / X
Irregular bowel movement / X
Blood in the urine / X
Constipation / X
Difficult or painful defecation / X
Ovarian pain / X
Diarrhea / X

aOther signs/symptoms reported by only one participant included: bump in left abdomen area, vaginal discharge, lower back pressure, feeling of fullness, acid reflux, dizziness, infections, bladder pain, inflammation, hormone imbalance, internal pull; bother pain symptoms were not mutually exclusive and included: back pain, leg pain, vaginal pain, back/rib pain, rectal pain, side pain.

X, interview at which the sign/symptom was first mentioned.

Supplementary Table 4. Saturation grid for the impacts of adenomyosis

Impacta / Participant interview
1 / 2 / 3 / 4 / 5 / 6 / 7 / 8 / 9 / 10 / 11 / 12 / 13 / 14 / 15 / 16 / 17 / 18 / 19 / 20 / 21 / 22 / 23 / 24 / 25 / 26 / 27 / 28 / 29 / 30 / 31
Self-care hygiene / X
Fatigue/low energy / X
Leisure/social / X
Household/ADL / X
Travel / X
Physical activities / X
Sleep / X
Work/school / X
Relationships / X
Quality of life / X
Financial / X
Frustration / X
Depression / X
Worry / X
Moody/mood swings / X
Mobility / X
Self-image / X
Other psychological/emotional / X
Eating / X
Stress / X
Anxiety / X
Loss of control/helplessness / X

aOther impacts reported by only one participant included: poor posture because of enlarged uterus, general uncomfortable feeling, having to take medicine frequently during menstrual period, impacts on swimming, weight gain, feeling overwhelmed, issues with wearing clothes, fertility issues, impacts on driving.

ADL, activities of daily living; X, interview at which the impact was first mentioned.