Background
Methods
S | SAMPLE | women from high income countries, with stigmatised pelvic symptoms |
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P I | PHENOMENON OF INTEREST | help, health, care, consultation, treatment or information seeking behaviour, intention, or perception; accessing healthcare, Women’s health services |
D | DESIGN | any research design that uses data collection methods to capture participants’ help-seeking experiences (including, but not limited to, focus groups, interviews, questionnaires and surveys) |
E | EVALUATION | experiences, attitudes, perceptions, life change events, emotions, views, knowledge, barriers, and facilitators |
R | RESEARCH TYPE | qualitative, quantitative, and mixed methods |
Eligibility criteria
Pelvic organ prolapse | Dyspareunia | Vaginal bulge | Genital herpes |
Urinary incontinence | Genital symptoms | Perineal pain | Genital sores |
Faecal incontinence | Urogenital symptoms | Perineal discomfort | Genital ulcers |
Menopause | Urogynaecology symptoms | Vaginal discharge | Genital blisters |
Sexual dysfunction | Urinary symptoms | Vaginal itch | Flatulence |
Reproductive tract infections | Anal symptoms | Vulval itch | Constipation |
Pelvic floor disorders | Vulval symptoms | Vaginal odour | Vaginal infection |
Abnormal uterine bleeding | Vaginal symptoms | Anal discharge | Vulval infection |
Pelvic pain | Vaginal pressure | Genital warts | Genital infection |
Perineal pressure | Urine infection |
Inclusion Criteria | Exclusion Criteria |
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SAMPLE Studies of stigmatised pelvic symptoms among women from high income countries | Studies including males, unless female data can be separated Studies including other symptoms, conditions or issues, unless data for stigmatised pelvic symptoms can be separated IPV or rape; abortion; FGM; infertility; contraception HIV/AIDS or HPV or attending for HIV/HPV screening Cancer or attending for cancer screening Studies that focus on clinicians, health service managers’, or carers’ views |
PHENOMENON OF INTEREST Studies exploring help seeking | Studies that do not explore help seeking Studies that include seeking help other than for pelvic symptoms, unless these can be separated Studies that focus on seeking help other than for health reasons (e.g., justice) Studies that focus on treatment decision making after seeking help |
DESIGN Studies of any design using data collection methods to capture participants’ help-seeking views or experiences (including but not limited to focus groups, interviews, questionnaires, and surveys), and including those reported in systematic reviews | |
EVALUATION Studies incorporating participants’ emotions, attitudes, perceptions, barriers, issues, problems, difficulties, facilitators, enablers, life change events, beliefs, feelings, knowledge, and understanding in relation to seeking help | Studies reporting only prevalence rates or predictors for help seeking |
RESEARCH TYPE Peer reviewed qualitative, quantitative, or mixed methods primary studies | Unpublished, non-peer reviewed, ‘grey literature’, conference abstracts |
OTHER Context: include studies set in countries with economies similarly developed to the UK (World Bank 2021 Country Classification “high income”) Language: include studies written in English, German, French, Spanish, and Swedish Date of publication: from the year of inception of the database searched, to the date of the search | Studies set in any other countries Studies written in any other language |
Information sources
Search strategy
SAMPLE MeSH (MM “Pelvic Organ Prolapse+”) OR (MM “Urinary Incontinence+”) OR (MM “Fecal Incontinence”) OR (MM “Vaginal Discharge+”) OR (MM “Menopause+”) OR (MM “Sexual Dysfunction, Physiological+”) OR (MM “Sexual Dysfunction, Psychological+”) OR (MM “Reproductive Tract Infections”) OR (MM “Pelvic Floor Disorders”) OR (MM “Pelvic Pain+”) OR (MM “Dyspareunia”) OR (MM “Condylomata Acuminata”) OR (MM “Herpes Genitalis”) OR (MM “Flatulence”) OR (MM “Constipation+”) OR Keywords TI pelvic organ prolapse OR AB pelvic organ prolapse OR TI prolapse OR AB prolapse OR TI urinary incontinence OR AB urinary incontinence OR TI f#ecal incontinence OR AB f#ecal incontinence OR TI incontinen* OR AB incontinen* OR TI Menopause OR AB Menopause OR TI sexual dysfunction OR AB sexual dysfunction OR TI reproductive tract infection* OR AB reproductive tract infection* OR TI Pelvic floor disorder* OR AB Pelvic floor disorder* OR TI Abnormal uterine bleeding OR AB Abnormal uterine bleeding OR TI Pelvic pain OR AB Pelvic pain OR TI Dyspareunia OR AB Dyspareunia OR TI genital symptom* OR AB genital symptom* OR TI urogenital symptom* OR AB urogenital symptom* OR TI urogyn#ecolog* symptom* OR AB urogyn#ecolog* symptom* OR TI urinary symptom* OR AB urinary symptom* OR TI anal symptom* OR AB anal symptom* OR TI vulva* symptom* OR AB vulva* symptom* OR TI vagina* symptom* OR AB vagina* symptom* OR TI vagina* pressure OR AB vagina* pressure OR TI pressure N3 vagina* OR AB pressure N3 vagina* OR TI pressure N3 perine* OR AB pressure N3 perine* OR AB vagina* bulge OR TI perine* pain OR AB perine* pain OR AB perine* discomfort OR TI vagina* discharge OR AB vagina* discharge OR AB vaginal itch OR AB itch N3 vagina* OR AB itch N3 vulva* OR AB vaginal odo#r OR AB anal discharge OR TI genital wart* OR AB genital wart* OR TI genital herpes OR AB genital herpes OR TI genital sore* OR AB genital sore* OR TI genital ulcer* OR AB genital ulcer* OR TI genital blister* OR AB genital blister* OR TI flatulen* OR AB flatulen* OR TI constipat* OR AB constipat* OR TI genital infect* OR AB genital infect* OR TI vaginal infect* OR AB vaginal infect* OR AB vulva* infect* OR TI urin* infect* OR AB urin* infect* AND PHENOMENON OF INTEREST |
MeSH (MM “Help-Seeking Behavior”) OR (MM “Information Seeking Behavior”) OR (MM “Health Services Accessibility+”) OR (MM “Women’s Health Services+”) OR (MM “Patient Acceptance of Health Care”) OR Keywords TI ((help-seeking OR help seeking) behavio#r*) OR AB ((help-seeking OR help seeking) behavio#r*) OR TI ((care-seeking OR care seeking) behavio#r*) OR AB ((care-seeking OR care seeking) behavio#r*) OR TI ((treatment-seeking OR treatment seeking) behavio#r*) OR AB ((treatment-seeking OR treatment seeking) behavio#r*) OR TI ((health seeking OR health-seeking) behavio#r*) OR AB ((health seeking OR health-seeking) behavio#r*) OR TI ((help-seeking OR help seeking) intention*) OR AB ((help-seeking OR help seeking) intention*) OR AB ((care-seeking OR care seeking) intention*) OR TI ((information-seeking OR information seeking) behavio#r*) OR AB ((information-seeking OR information seeking) behavio#r*) OR TI ((information-seeking OR information seeking) intention*) OR AB ((information-seeking OR information seeking) intention*) OR TI ((knowledge-seeking OR knowledge seeking) behavio#r*) OR AB ((knowledge-seeking OR knowledge seeking) behavio#r*) OR TI ((knowledge-seeking OR knowledge seeking) intention*) OR AB ((knowledge-seeking OR knowledge seeking) intention*) OR TI (perception of (help seeking OR help-seeking)) OR AB (perception of (help seeking OR help-seeking)) OR TI (perception of (care seeking OR care-seeking)) OR AB (perception of (care seeking OR care-seeking)) OR TI (perception of (treatment seeking OR treatment-seeking)) OR AB (perception of (treatment seeking OR treatment-seeking)) OR AB (perception of (information seeking OR information-seeking)) OR TI seek* consultation OR AB seek* consultation OR TI ((health service* OR healthcare OR health care) access*) OR AB ((health service* OR healthcare OR health care) access*) OR TI Women* Health Service* OR AB Women* Health Service* |
Selection process
Data extraction
Quality assessment
Data analysis and synthesis
Assessment of confidence in cumulative evidence
Results
Results of search
Overview of studies
Quantitative | Qualitative/Mixed | ||||
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Countries | No. of women represented | No. of papers | No. of women represented | No. of papers | References |
UK + Ireland | 593 | 2 | 852 | 8 | |
Norway, Denmark, Belgium, and Portugal | 1,940 | 1 | - | - | [48] |
Denmark | 4,051 | 1 | 14 | 1 | |
Norway | - | - | 15 | 1 | [51] |
The Netherlands | 822 | 2 | 62 | 4 | |
Spain | - | - | 18 | 1 | [57] |
Italy | - | - | 6 | 1 | [58] |
Sweden | 561 | 1 | 77 + 16 blog posts | 5 | |
Germany and Denmark | 1,849 | 1 | - | - | [65] |
Germany | - | - | 71 | 2 | |
Poland | 141 | 1 | 16 | 1 | |
United Arab Emirates | 556 | 2 | - | - | |
Saudi Arabia | 794 | 3 | - | - | |
Israel | 223 | 1 | - | - | [75] |
USA | 3,877 | 11 | 1,055 | 16 | |
Chile | - | - | 10 | 1 | [100] |
Hong Kong | 639 | 1 | 30 | 1 | |
Korea | 500 | 1 | - | - | [103] |
Singapore | 95 | 1 | - | - | [104] |
Japan | 774 | 1 | - | - | [105] |
Macau SAR, China | 408 | 1 | - | - | [106] |
Taiwan | - | - | 38 | 2 | |
Australia | 1,362 | 2 | 293 | 7 | |
New Zealand | - | - | 10 | 1 | [117] |
Worldwide | - | - | 70 + 200 blog posts* | 2 |
Quality Assessment
Outcomes
Quantitative studies
Qualitative and mixed methods studies
“For me, I was embarrassed to speak to anybody, really, about it, for a long time. But now, I regret that I did that, because I left myself to a bad stage.” [prolapse]; [27]“You don’t know why, you feel sort of ashamed, you feel embarrassed to talk about it, as if you are somehow a failure, with guilt, you know?” [47 years with UI]; [57]“Yes. You can talk about almost anything else I think, all kinds of matters considering your genitals and. but not this, this I think is very taboo” [SUI] [59].
“You feel disoriented, you don’t know if it is normal or not, whether you should worry or not” [45 years with UI] [57].“I did not know that happened to women. I did not know anything about it. I was scared because I didn’t know what it was.” [prolapse] [98].“How can you talk about something [when] you don’t even know what it is?” [bowel leakage] [78].
“I simply thought: the urinary incontinence is just part of it. Your whole body is turned inside out after delivery anyway. So I thought it’s just part of the game.’” [PFD] [12].“I have some good friends, and my daughter. Well, they have the same problem. It’s age. That’s all we boil it down to is the age. Nothing you can do about it.” [urinary dysfunction] [85].
“We forget about ourselves a little. Everybody else comes first, and then later, me.” [PFD] [84]. Participants across a wide range of pelvic symptoms felt low symptom bother did not justify seeking help: “…it’s only a little bit, not like oh I’ve wet my pants” [urinary dysfunction] [47] and “I just forget about it, because it’s not an every week thing.” [bowel leakage] [78].
“To be exposed, that is something you don’t want to risk, so every time [examination] it is like a mental procedure, the sense of exposure. Well, it’s almost like an abuse, it is something you don’t want to do but you must.” [pelvic pain -endometriosis] [61].“I didn’t want to be put on some pill that would make me more constipated. Sometimes the cure is worse than the disease…” [bowel leakage] [78].“When your uterus or bladder falls, it is very dangerous. You can get cancer” [PFD] [86].
“I told my doctor, I had urine loss all the time…you know what he said? Honestly, I will tell you…”wear a kotex”” [PFD] [86].“You’ve got a rectocele.’ ‘What is it?’ ‘Oh, you don’t need to know.’ Well, hey, if it’s to do with you, you’re the one person who needs to know about it. You shouldn’t be sort of kept like, ‘Oh, you’re a child being a nuisance. Go away. You don’t need to know.” [prolapse] [87].“And then she also said that maybe I should learn to live with it, I thought that was a bit crazy. And ehm, that also made me think I did not feel taken seriously. Because I really thought, well, hello, I’m 20!” (22 yrs) [pelvic pain – vulvodynia] [52].“The lack of urgency is real with OBGYNs. Maybe younger doctors are more open, but the attitude of older gynaecologists is to do what they did to me. He just gave me a pat on the butt and told me I could live with it.” [prolapse] [90].
“The GP took me seriously, but in retrospect I think he didn’t have the knowledge…” [pelvic pain – vulvodynia] [52].
Synthesis of all results
Code | Theme/ sub-theme | Overarching Theme |
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Embarrassment about symptoms Embarrassment to talk to a [male] clinician Shame about symptoms Feeling symptoms are taboo Self-blame, self-disgust, self-stigma | Stigma | |
Unaware that treatments are available Not knowing where to seek help Low expectations of treatment benefit Hoping symptoms go away on their own | Women’s lack of knowledge about pelvic symptoms: - General | |
Thought symptoms were normal Thought symptoms were normal after childbirth Thought symptoms were normal for ageing | - Normalising | |
Prioritising other things Denial/ avoidance of symptoms Did not feel symptoms were a medical problem Did not feel symptoms were troublesome enough Inappropriate self-help/ coping | - Deprioritising | |
Fear of clinician, examination, investigation, medication, surgery Fear of discovering a serious disease | - Fear | |
Can’t afford cost of healthcare/ no insurance Women too busy to attend appointments Waiting time too long Language issues Transport issue to get to appointment | Inconvenience and cost of seeking help | |
Feeling clinician was not interested/ would not pay attention Feeling clinician did not take symptoms seriously Clinician did not ask about pelvic symptoms Perceived that clinician was embarrassed to ask Felt judged by clinician Women believe clinicians lack training/knowledge Clinician did not give information about diagnosis | Clinicians trivialising symptoms |