Introduction
Methods
Focus group discussions
Inclusion criteria
Patient selection
Execution of discussions
Data analysis
Systematic review of literature
Results
Focus group discussions
Characteristic | Value |
---|---|
Age, median (range) | 38 (30-42) |
Number of children, mean | 2.2 |
Number of caesarean sections, mean | 1.8 |
Active wish to conceive | 5 (38) |
Years since diagnosis | |
< 2 years | 4 (31) |
2–4 years | 4 (31) |
> 4 years | 5 (38) |
Currently pregnant | 1 (8) |
Received niche therapy | |
Laparoscopic niche resection* | 6 (46) |
First laparoscopic, then hysteroscopic niche resection | 3 (23) |
Total laparoscopic hysterectomy | 3 (23) |
Fertility treatment | |
Fertility treatment due to niche | 5 (38) |
Fertility treatment due to previous infertility | 0 (0) |
Theme | Outcome | Quote |
---|---|---|
Physical health | ||
Abnormal uterine bleeding | Intensity (volume and duration) of AUB | “(…), like I had during the holidays, early in the morning. I just sat on the toilet for fifteen minutes because it kept gushing.” |
Irregularity of AUB | “It just starts at an inappropriate time, so after intercourse or when you’re just about to go to your work or ready to leave the house. And then, you’re covered in blood again.” | |
Odour due to AUB | “I was mainly wondering: can’t everybody smell me?” | |
Abdominal pain | (Chronic) abdominal pain | “Out of the 30 days, there might have been two days that I thought: oh, my belly doesn’t hurt for a change.” |
Caesarean scar sensations | “Looking back, I felt the scar… I felt a bad pulling sensation in my scar, but I thought it was just part of the recovery.” | |
Subfertility | Inability to conceive | “It doesn’t matter if it’s the first, second or third. When you’re not able to conceive anymore, that’s very intense.” |
Pregnancy anxieties | “It was my biggest fear to get contractions (due to thin myometrium).” | |
Negative advice | “Yes, that’s no longer there (wish to conceive). Well, maybe there was, but not anymore. No, I’m not allowed (to get pregnant) anymore.” | |
Urological symptoms | Polyuria | “I have to pee more often at night.” |
Painful micturition | “I feel pain during micturition or when my bladder is full.” | |
Energy and fatigue | Not specified | “If you’re dealing with the pain all day and you have so much blood loss; that costs a lot of energy.” |
Activities of daily living | Not specified | “(…) such heavy pain that you just need to lie in bed with a paracetamol all day (during menses).” |
Work capacity | Period related | “I’m not going to say (to her employer): ‘I can’t come to work because I am having my period’” and “It’s the first two days that I bleed that heavily. I don’t actually leave the house then (to go to work), because if I do - I did it sometimes - I have to go and change pads every half an hour or more.” |
Pregnancy related | “At 20 weeks, the doctor said: ‘your myometrium is so thin…’ So I stopped working at the gestational age of 24 weeks.” | |
In general | “I had a job in education, and it is just not possible to combine this with a hospital life (scheduled niche appointments and fertility treatments)” and “I informed my superiors: I can’t stand all day, so we have to make a plan together.” | |
Psychological domain | ||
Self-esteem | Self-image | “Because I had bleedings for so long, yeah, you don’t really get clean and fresh anymore. You’re kind of disgusted by yourself.” |
Self-doubt | “Am I crazy or is there really something going on?” | |
Preoccupation | Not specified | “Just going a day to the beach and thinking: Oh, do I have pads with me or where is the nearest bathroom? It’s just always on your mind.“ |
Negative feelings | Cause/blame | “Should I have done things differently? Where did it go wrong? With the CS or the IUD? Or wouldn’t it have gotten so bad, if I had reached out earlier?” |
Loneliness or depression | “The limitations in your daily life and the loneliness in this compared to your age group.” | |
Social relationships | ||
Social support | Social acceptance | “You don’t talk about it. Who’s going to talk about periods, when you’re spending the night with friends?” |
Unfamiliarity | “A lot of people don’t know what it is (a niche).” | |
Personal relationships | Being heard | “People just don’t take you seriously when you suffer from the effects (of CS) and 99% of women does not.” |
Family life | “And there (at work) I have to pull myself together, but at home… When I’m free and the little one is in bed, then I’m done. I would do nothing.” | |
Incomprehension | “That’s the worst part, that my partner is okay with it. And that’s very sweet, you know, but I’m not. It’s very annoying, because it’s almost impossible for them to understand.” | |
Sexual activity | Embarrassment | “Checking during intercourse; am I bleeding now? That’s nasty.” |
Meet expectations | “That was the worst part for me. Of course, you’re bleeding, but you have a partner that also wants something.” | |
Dyspareunia | “If you’re thinking: oh, it’s going to hurt, it’s going to hurt (the intercourse)… I don’t even want it anymore, because it hurts and to get over that…” | |
Avoiding intercourse | “My sex life is on a very low level right now.” | |
Environment | ||
Healthcare system | Knowledge | “Four years ago, it was all unknown as well. Why doesn’t every general practitioner know about this by now? That’s strange, right?” |
Acknowledgement | “You’re telling your story to professionals and yet those professionals don’t really hear you. You’re being sent from pillar to post.” | |
Lack of treatment options | “The general practitioner shouldn’t set you up with contraception pills for six times and only afterwards consider sending you to a gynaecologist.” | |
Participation in leisure activities | Not participating in leisure activities | “In those five days (free of bleeding), you are not going to the gym. You’re just happy to be free and clear.” |
Discomfort during leisure activities | “When I went to the spa, I was like: let’s take a dark towel with me, because if I take a white one and something happens… (irregular blood loss).” |
Physical health
Psychological domain
Social relationships
Environmental factors
Prioritisation
Systematic review of literature
Gynaecological symptoms in niche population | N = 11 |
Bleeding abnormalities | N = 10 |
2 | |
9 | |
Abnormal uterine bleeding (not further specified) [70] | 1 |
Pain | N = 2 |
2 | |
2 | |
Dyspareunia [5] | 1 |
Other | N = 2 |
Risk on failed early TOP [71] | 1 |
Urinary incontinence [44] | 1 |
Gynaecological symptoms after therapy (surgical or hormonal) | N = 24 |
Bleeding abnormalities | N = 24 |
17 | |
3 | |
4 | |
Pain | N = 10 |
3 | |
4 | |
2 | |
Pain during micturition [9] | 1 |
2 | |
Reproductive outcomes in population with niche or thin LUS | N = 19 |
Fertility related—after therapy (surgical or hormonal) | N = 8 |
4 | |
7 | |
6 | |
3 | |
4 | |
Obstetrics related—after therapy (surgical or hormonal) | N = 4 |
2 | |
Risk of abnormal adhesive placenta [40] | 1 |
3 | |
Obstetrics related—no treatment | N = 12 |
2 | |
9 | |
4 | |
Evaluation on a functional level after therapy (surgical or hormonal) | N = 3 |
3 | |
Sexuality (FSFI) [9] | 1 |