Stigma and embarrassment of urogynaecological conditions

This section covers:
  • Embarrassment and feelings about ‘failing’
  • Stigma and taboo
  • Sex, hygiene and feeling ‘dirty’
  • Refusing to be silent and choosing to be open with others

Embarrassment and feelings about ‘failure’

Many of those that we talked to, including Sue Y, Mary Y, and Emma, told us that it was “excruciatingly embarrassing” to involuntarily leak or lose bladder control. Mary Y found it particularly “mortifying” to have leaks in front of her teenage sons, and Sarah described a “horrendous” accident she had during the ‘mum’s race’ on sports day. Freia says that waking up to a wet bed is “so embarrassing and so I feel just like a young kid again”. Katy, a firefighter, constantly worries that her male co-workers could find out about her urinary incontinence.
Eve and others with prolapse felt embarrassed that other people might know they have the condition, and that they would then be seen as someone whose “organs are coming out”. It could be frightening to feel out of control of your body and to think about what this might mean for the future.

Although Iris would never judge anyone else for it, she still feels ashamed and upset about leaking.

Being ill and having a chronic health problem was a source of embarrassment for some. Anna, who has problems with urinary tract infections (UTIs), described feeling embarrassed for being so ill for a “seemingly mild problem”.
Catherine, Katy, Mary Y, and others felt that needing to show a healthcare professional your “nether regions” was the “ultimate embarrassment”. Phoebe told us that you are at your “most vulnerable”: “you have no underwear on and someone’s talking to you about something that they know a lot about”. Vickie said that, even though you know that the healthcare professional is not judging you, it does not stop you feeling embarrassed.
Some of the people that we talked to, including María, Vickie, and Kerry, felt ashamed that their body had ‘failed’. Catherine thinks that there is a social stigma about admitting “something’s wrong”. Katy found it so “sad” that many people are worried they will be seen as “weaker” if they admit they have health problems or concerns.

Vickie, who developed a prolapse after giving birth, says that you should not feel like you have failed and that you would not “beat yourself up” if you broke your ankle.

Vickie and Phoebe felt “criticism” and blame for developing prolapse after birth. Anna, who has problems with UTIs, feels “ashamed” for struggling and wonders if this feeling is deeply rooted in society. It makes her feel even worse when people say things like “I haven’t seen a GP for 30 years”, as not everyone can “go around as if they don’t have a body”.

Kezia thinks that taboo about talking about bodily fluids contributes to the isolation of having urogynaecological conditions.

Eve, Catherine and others felt there were social pressures on women to “bounce back” after giving birth, or to get back to sex and have more children. Kezia talks about the social “idea” that “women don’t fart”. María says she feels extra pressure for women to smell nice.

Stigma and taboo

People talked to us about some of the reasons for feeling so embarrassed. Many, including Jessy, Sophie, Sabrina and Eve, felt that certain body parts and functions, like the vagina, pelvic floor, bladder, and bowel, were “taboo” or had a “stigma” in society. Even though some of the people we talked to, including Jan and Sabrina, were not embarrassed and talked openly about their bladder problems, they sometimes felt that the people they talked to seemed embarrassed or changed the subject. Phoebe and Georgina thought that humour was sometimes used to hide embarrassment.

Rosie found it strange that people will talk about their labour, but no-one talks about bladders, bowels and bodily fluids after childbirth because it is “taboo”.

Sabrina, Jenni, Sue X and others told us that it is difficult to talk about bodily functions in “polite society”. Minnie and Elisabeth said they were from a generation that didn’t talk openly about urogynaecological problems, and Minnie thought “conditioning as children” about “topics you didn’t discuss” was a big factor. Katy felt her generation “had been brought up to be embarrassed about our bodies”. Several people, including Kerry, preferred not to discuss their symptoms in front of men, although Kerry recognised that this might be her “hang up”. Helen joked that talking about ‘gynae issues’ might “clear a room full of men”.
Several people that we talked to, including Jan, Mary X, Elly and Jacqueline, were concerned that urinary and pelvic floor symptoms were ‘stigmatised’ as “a sign of old age”. For those women in their 50s and 60s, they didn’t want to feel they had “an old lady” condition, or for others to see them this way. When Sophie confided in someone about her prolapse, she was told, “Ha, ha, that’s something only middle-aged women have after they’ve had babies”, which put her off telling other people.

Sue Y felt embarrassed to tell other people about her prolapse because they may associate it with her getting old. She doesn’t think this is fair, and wants to get out and “spread the word”.

At the same time as highlighting that urogynaecological conditions can affect someone at any age and that young women have them too, some people added that it was important that older women’s situations were not just ‘accepted’ as normal and inevitable. Melanie and Helen wondered if “older lady issues” were dismissed because they were no longer seen as being ‘beautiful’, ‘sexual’, and ‘fertile’.

Sex, hygiene and feeling ‘dirty’

Some of the people we talked to, including Rowan and Jasmine, found it difficult to talk to healthcare professionals about sex. Vicky agreed that it was hard to discuss “your genitalia”. Rebecca and Carole suggested that struggling to talk about the impact of urogynaecological problems on sex might stop people getting the help that they need.

Cynthia, who has multiple prolapses following childbirth, had felt “rebuked”, “chastised” and “reprimanded” by healthcare professionals, which has made her feel ashamed.

Anna, who has problems with UTIs, feels that the strong link between sex and shame in society means that at times she feels that pain during sex is a “punishment”.

María and Anna thought that students and young people in general might be particularly reluctant to talk to a doctor about their sex lives, for fear of judgement or assumptions being made. When Anna was a student and went to the doctor with a urinary tract infection, she said the doctor made her feel embarrassed for having sex and that the UTI was her “fault”. Similarly, when diagnosed with pelvic inflammatory disease (an infection in the female reproductive system), Sian felt that the doctor passed judgement about her sex life and “did nothing short of painting a scarlet letter on my chest”.

As a student, Jane felt that she was being “told off” for being sexually active. She feels that linking UTI, sex, and hygiene is not helpful and will stop people getting help.

A few people we talked to thought that, in society generally, there was often an assumption that older people were no longer sexually active. This could make it hard to raise the topic of the impact on sex, and some worried about the response they might get from a healthcare professional.
Several people we talked to, including Laura, Rebecca, Mehar, and Sophie, thought that some people linked bladder and bowel conditions with being ‘dirty’. As Fiona and others highlighted, it did not help if anyone suggested they were “not wiping yourself properly”.

María, who has urinary incontinence, has been very aware of what she smells like since she was a child and feels ashamed if she smells “bad”.

The assumption that urogynaecological problems were linked with poor hygiene made people feel guilty, ashamed, and less likely to seek help from healthcare professionals or loved ones. Sophie, who has prolapse and urinary incontinence, felt “unattractive” and “dirty”. Several, including Freia and María had become very self-conscious of ‘body-fluids’ and smells.

Freia worries about letting her daughter into her bedroom because she is embarrassed about the smell of urine.

Refusing to be silent and choosing to be open with others

There were some people we talked to, like Emma and Vicky, who said that having a urogynaecological condition could be a “lonely experience”. Sarah, Beth, Elisabeth, and others told us that people were more likely to keep these personal things quiet in the past. Several, including Jessy and Vicky, wondered if other people felt “uncomfortable” because they “overshare”.

It was difficult for Rowan to tell her mum, who was born in the 1920s, about her first UTI.

Fran found it so difficult to talk about her complications after vaginal mesh surgery and tried to cover it up because she didn’t want to be judged.

Sian and others felt that it could make a “difference to somebody else’s life” by speaking out. Eve has decided to be open because she does not want anyone to feel ashamed about having a prolapse. Jessy, Iris, Felicity and Vicky have found it helpful to share their experiences with other people, often on the internet and through social media.
Many of those that we talked to, including Chloe, Melanie, Phyllis, and Clare, felt a duty to not let the “next generation” of women “suffer in silence”, and they wanted to “break the taboo” by talking about it. For some, like Chloe and Elly, this was part of their motivation for talking to us about their experiences.

Although Sharon used to shy away from talking about her prolapses, she now doesn’t mind “dropping the P bomb into conversations”.

Several of those that we talked to, including Mary X, Jenny, Vickie, and Melanie wanted people to be able to talk openly about body parts and not be “afraid” to use the words “vulva” and “vagina”. Vicky, Kerry, and others wanted healthcare professionals to be “matter of fact” and to “use the right word for the right part” as “it helps to normalise it”.

Vicky finds that certain body parts are ‘taboo’ and thinks we need to talk about them more.

Chloe, Jasmine, and others said that it can be difficult to communicate health needs if you do not know or are not taught the correct words. Jeannie had “never heard about” prolapse before she had one. Several people we talked to, including Sophie, Elisabeth, and Sharon, felt that pelvic health and female anatomy should be on the school curriculum. Although Eve says there is “this whole thing” about “we don’t want to scare women before they have kids”, she thinks it would be helpful to teach about women’s health more fully in schools. Phyllis and Elly, amongst others, thought it was important to be open with children and to use the right words to describe body parts.

Elly does not want her daughter to grow up being ashamed of her female body.