Limited information is available from the patient perspective regarding the signs, symptoms, and impacts of adenomyosis. A better understanding is required to improve the management of the condition. |
Interviews with women with adenomyosis found that the most common symptoms were heavy menstrual bleeding, cramps, and blood clots during menstrual bleeding. The most commonly reported impacts of adenomyosis were burdensome self-care hygiene, fatigue/low energy, and impacts on leisure/social activities, household/activities of daily living, travel, and physical activities. |
For both symptoms and impacts, saturation (the interview at which no novel concepts were gathered) was reached after a small number of interviews, indicating a condition with a consistent presentation. |
1 Introduction
1.1 Methods
1.1.1 Study Design
Participant-reported demographic characteristics | Participants (N = 31) |
---|---|
Age, years | 40.9 ± 5.8 (range 28–52) |
Racial background | |
White | 14 (45.2) |
Black or African American | 11 (35.5) |
Asian | 4 (12.9) |
Other | 2 (6.5) |
Employment status | |
Employed, full time | 20 (64.5) |
Employed, part time | 5 (16.1) |
Homemaker | 4 (12.9) |
Student | 1 (3.2) |
Unemployed | 1 (3.2) |
Highest level of education | |
Elementary/primary school | 1 (3.2) |
Secondary/high school | 3 (9.7) |
Technical or vocational degree | 2 (6.5) |
Some college/university | 7 (22.6) |
College/university degree | 13 (41.9) |
Postgraduate degree | 4 (12.9) |
Other | 1 (3.2) |
1.2 Participants
1.3 Data Analysis
2 Results
2.1 Study Population
Participant self-reported clinical characteristics | Participants (N = 31) |
---|---|
Currently sexually active | 29 (93.5) |
General health status within the past week | |
Excellent | 3 (9.7) |
Very good | 13 (41.9) |
Good | 12 (38.7) |
Fair | 2 (6.5) |
Poor | 1 (3.2) |
Severity of adenomyosis | |
Mild | 5 (16.1) |
Moderate | 12 (38.7) |
Severe | 9 (29.0) |
Very severe | 4 (12.9) |
Missing | 1 (3.2) |
Years since first experience of adenomyosis symptom | 5.7 ± 6.5 (range 0–23) |
Frequency of bleeding between periods | |
None of the time | 16 (51.6) |
Some of the time | 10 (32.3) |
Most of the time | 4 (12.9) |
Nearly all of the time | 1 (3.2) |
Daily | 0 |
Severity of bleeding between periods | |
None of the time | 16 (51.6) |
Light | 10 (32.3) |
Moderate | 2 (6.5) |
Heavy | 3 (9.7) |
Clinician-reported clinical characteristics |
N = 27a
|
Years since adenomyosis diagnosis | 1.2 ± 1.91 (range 0–6) |
Imaging of suspected adenomyosisb
| |
Transvaginal ultrasound | 24 (88.9) |
MRI | 3 (11.1) |
Comorbid health conditions | |
Ovarian cysts or other ovarian disorders | 7 (25.9) |
Anemia | 4 (14.8) |
Anxiety | 4 (14.8) |
Endometriosis | 4 (14.8) |
Uterine fibroids | 4 (14.8) |
Cervical polyps | 1 (3.7) |
Depressive disorder | 1 (3.7) |
Any other gynecological conditionsc
| 2 (7.4) |
Otherd
| 7 (25.9) |
None | 5 (18.5) |
2.2 Concept Elicitation: Symptoms
Signs, symptoms, and impacts mentioned by ≥ 10% of participants | Participants (N = 31), n (%) | Representative quotes |
---|---|---|
Signs/symptoms | ||
Bleeding characteristics | ‘I get just very heavy bleeding—I stand up and it feels like a waterfall, I mean it sounds disgusting, but that’s exactly how it feels—like, it gets so bad that I have to use the super-duper overnight pads during the day, and I change them quite frequently.’ ‘Yes, during my cycle it’s very heavy, so the first couple of days, you know, I spot and then day 1 and day 2 I spot mostly, and then it just kind of comes full force. I mean I get clotting, I get just very heavy bleeding’ | |
Heavy menstrual bleeding | 27 (87) | |
Blood clots during menstrual bleeding | 26 (84) | |
Bleeding or spotting between periods | 15 (48) | |
Longer menstrual bleeding | 12 (39) | |
Pain | ‘I would say like contractions almost, the first couple of days it feels like I’m actually in labor a little bit, yeah, and it’s like sometimes—the first two days they’re pretty intense’ ‘In terms of cramping I would have pain, you know, because those cramps would feel like, you know, like somebody is cutting me or my, you know, my uterus is being squished or in like a clamp or something, you know, like there’s pressure’ ‘…with the adenomyosis it’s not so much a burning sensation, but like pulses of pain, I mean it’s kind of hard to describe, but it doesn’t burn, it just hurts, it’s like sharp, stabbing pains, that’s what it feels like to me—and it’s always in the same section, always towards my left side … it’s a pain in the rear’ ‘The vaginal, it’s like with the part that the baby comes out, and then the lower belly, it’s like you have the cramps, and the back, it’s like with the, what do you call it, the ribs on the left and right, something like that—it’s like the muscle’ | |
Cramps (dysmenorrhea) | 26 (84) | |
Abdominal pain | 13 (42) | |
Lower back pain | 12 (39) | |
Pain (general or unspecified) | 9 (29) | |
Pain during intercourse (dyspareunia) | 8 (26) | |
Abdominal pressure | 8 (26) | |
Pelvic pain | 7 (23) | |
Cramps (non-menstrual) | 7 (23) | |
Pain radiating down the legs | 7 (23) | |
Tenderness (breast and/or abdominal) | 6 (19) | |
Pain or aches in muscles or joints | 5 (16) | |
Headaches | 5 (16) | ‘I get headaches during the day preceding when—before my period starts and the first day, but I don’t know if it’s due to a regular menstrual headache or is it hormonal or is it due to adenomyosis—that I don’t know’ |
Bloating | 17 (55) | ‘I’d say the bloating starts like right around when I’m getting breast tenderness. I know my period is coming, so like the week—like a couple days in the week before, and bloating throughout that whole time that I would have my period’ |
Enlarged uterus to the point where you look pregnant | 5 (16) | |
Swelling or heaviness in the legs/feet | 7 (23) | |
Low energy/fatigue | 16 (52) | ‘I would say at least two full days where I just want to lay around—and if I could, I wouldn’t go to work; I would just lay around for those two days, at least two good days’ |
Anemia-related fatigue | 3 (10) | |
Nausea | 9 (29) | ‘I just get very sick where you are nauseous, really can’t function, throw up, you know, and just overall just not feeling well’ |
Difficulties with urination | ‘Some days I will have that symptom that I have to go to the bathroom—I feel like I have to go to the bathroom all the time’ ‘… that comes in waves, too. Sometimes I will wake up four or five times at night, and sometimes it will only be once’ | |
Passing urine frequently | 5 (16) | |
Leaking urine/incontinence | 3 (10) | |
Feeling sudden urge to urinate | 3 (10) | |
Waking at night to urinate | 3 (10) | |
Difficulties with defecation | ‘Oh, sometimes I’m scared, and then I ask my primary doctor to give me some medicine for if I feel constipated. If I’m not mistaken it’s about 3 times a month or 4 times a month—and also if I have a heavy period, that’s when I have the time that I pee and then at the same time I poop, something like that, I need to rush to the bathroom—it’s like I feel excited and I need to go to the bathroom, especially when I get a pain’ | |
Irregular bowel movement | 5 (16) | |
Constipation | 3 (10) | |
Dryness/tightness in the vaginal region | 4 (13) | ‘I have experienced dryness, and I know some of that is psychological or can be as well, because I’m not in the mood, nothing excites me, so I thought part of that might also be because I’m psychologically not in it’ |
Ovarian pain | 3 (10) | ‘Um, a pain that would come and go, that is almost like a gnawing sensation, like something is gnawing at you. My left side, lower, um, sort of like below my uterus, between my uterus and ovary, left ovary. Kind of like a scratching sensation or gnawing, like something’s digging in me’ |
Impacts | ||
Burdensome self-care hygiene | 22 (71) | ‘I try not to go out and if I do I panic basically because I don’t know when I’ll get a chance to change and I some—I—those times when I have to go out I use a tampon and an under pad—second pad because I put on two [laughter] under one of that. I’ve had—I’ve had to line, you know, put plastic and stuff on my car seat just in case. And there have been times where it comes right through my pants through to the—to the car seat and everything. I had it happen at work where it came right through to the—my chair. And I had to go home and change’ |
Fatigue/low energy | 22 (71) | ‘… when I have so much pain, it’s exhausting, so, you know, I don’t want to do anything or I don’t want to get up off the couch because I’m so tired, the littlest things tire me out’ |
Leisure/social | 20 (65) | ‘Any social activity whether it’s going to the movies, hanging out with friends. No, I … I’m not doing any of that because I’m too worried about if I’m going to mess up, if I’m going to able to use the public bathroom to change and that type of stuff’ |
Household/activities of daily living | 19 (61) | ‘Cleaning is troublesome, because of the bending’ |
Travel | 19 (61) | ‘… there are certain times where I won’t go like on a trip or anything because of it or, you know, because it’s just, you know, am I going to be able to use the bathroom or sometimes you just don’t, you know, you’re not feeling it’ |
Physical activities | 19 (61) | ‘I mean I don’t really do very many physical things, I mean I joined a gym, but I don’t actually go to the gym during my period, because it just would never work’ |
Sleep | 18 (58) | ‘I mean the first three days I get no sleep, I am exhausted, because I don’t want to have any accidents, you know, which I wind up having anyway, because sometimes I fall asleep because I’m so exhausted, and like an hour later the bed is soaked, change my underwear and nightgown—it’s terrible—it’s terrible’ |
Work/school | 17 (55) | ‘So not being able to lift things—every once in a while, like I work at a bank, so, you know, boxes of coins, you know, they’re pretty heavy or I have the pain I can’t do it. I can’t stand for an extremely long period of time, usually my boss doesn’t like when you sit and you help the customers, but when I have the pain I don’t have much of a choice’ |
Relationships | 16 (52) | ‘He doesn’t quite understand what’s going on with the pain, so he’ll say things like “oh, are you in pain today,” but he says it like he doesn’t know what to do kind of thing, so it kind of puts a strain on us a little bit, because I’m over here in pain and I’m not in such a good mood, and he’s over there trying to make me feel better, and it’s definitely not working’ |
Quality of life | 13 (42) | ‘I would say that it does have a big effect on the quality of life, because it minimizes certain things that I can do and when I can do it, things like that’ |
Financial | 12 (39) | ‘Well, it has definitely increased the cost of feminine hygiene products. Oh, and not just that, and the cost of the medical care. I just got the bill from the procedure, $US1800 is my portion I need to pay’ |
Psychological/emotional | ‘Yeah, so my pain definitely dictates how I’m feeling that day and, you know, I can be a lot harder to deal with, I know. I get angrier quicker when I’m in a lot of pain’ ‘My mood swings all over the place. Oh, goodness, very emotional, my gosh, it’s the worst, very moody, very emotional’ ‘It even gets me like anxious, because I don’t know, maybe it’s my personality, I don’t know. I like to be doing a lot of stuff, but I feel like I can’t—that I can’t do all I want at work and in my house’ | |
Frustration | 11 (35) | |
Moody/mood swings | 10 (32) | |
Depression | 9 (29) | |
Worry | 9 (29) | |
Anxiety | 3 (10) | |
Mobility | 10 (32) | ‘I can’t even stand up straight, it’s very painful, I have to take medication or I’m going to the emergency room’ |
Eating | 9 (29) | ‘Oftentimes like it just makes it hard to want to eat and like it just sort of becomes like a vicious cycle a little bit that, I will get nauseous. So it’s hard for me to eat and take my pain meds, but if I, you know, don’t, then I’m in a cycle of pain’ |