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.

I see myself as quite a rational, you know, I like to over-think [laughs]. I like to sort of rationalise things to an end. You know, so they can’t be rationalised anymore. And rationally, I know that, okay, I’ve had a little leak. If I’m out the house, I’m gonna go home and change my pants and my trousers if I need to and that’s fine. But sort of on a, on a more feelings level it’s I think it’s upsetting. I wouldn't say to somebody else if they’d done that that they should feel ashamed of it. But I’ve, you know, if I have the odd accident now which is rare thankfully, but I do feel ashamed and there’s, I don’t know why I feel ashamed because you know, it’s just an accident [laughs]. But I do. And I think that those things are so intimately bound and also because I’m relatively young. I, it’s kind of bound with that well what if I want children and this is happening now. What if I have a child and it gets even worse. And that’s, that’s quite hard to sort of unpick from just the simple act of having a bit of a leak if that makes sense.

 

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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.

I think language is huge. I think, I think it’s okay to say, “It’s unusual to see someone younger, however it’s likely to be these reasons”. I think there is definitely a requirement to call out this is no-one’s fault, okay, this just happens. Because I think people will just default, ‘It’s something I did wrong,’ because you’ve grown the baby, you delivered, it’s all on you isn’t it. I think there is a piece that’s says to really call out-, almost make it clinical rather than personal. So, “This is an injury that you have incurred from birth”. You wouldn’t go running, twist your ankle and beat yourself up and punish yourself for getting a broken ankle, unless you were doing something a bit silly, showing off and skipping or whatever. But with birth, it’s very different, it feels personal, it feels like you did something wrong.

 

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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.

Like any sort of incontinence, you know, harks back to being a child and I’m sure everyone’s got a story of when, you know, they wet themselves as a child and that was really embarrassing for them or like in some way a bit traumatic, and to think that you’ve sort of regressed to being there makes it hard to talk about. And people don’t really talk about poos and wees that much just in general. There’s an idea, you know, in the culture, like ‘Oh like it’s disgusting if a woman does a poo.’ Like women don’t fart, and if you do then you’re not sexy, so you don’t necessarily talk about those things. I mean I have always farted in front of my partner so probably that’s okay for me, but I know that lots of women will still go to the toilet to do a fart and if that is where you are then it’s very unlikely you’re going to openly say, “Oh by the way, actually I did a fart and then a little bit of poo came out,” because, you know, that would be horrifying for you. And yeah so I suppose people don’t wanna, people think that other people don’t wanna hear it and lots of people also don’t wanna hear it. And they just-, like the injury the core is, your core is literally the kind of innermost, not innermost but like a real fundamental kind of internal part of how you function mechanically but also I think emotionally. And if you don’t feel like you’re functioning in your innermost self, that’s very hard to talk about. In the same way that any kind of mental health problem or physical disability would be very difficult to talk about in a room full of strangers or outside of your immediate support circle or people that you feel comfortable talking with. Because you don’t just go out in life opening yourself up to the world and all of your vulnerabilities. It’s not really how we’re designed to do, so I think that yeah, it’s hard for women to talk about it.

 

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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”.

Everyone is more than happy to tell you all about labour and pregnancy and, you know, how horrific it is and everything and you hear every detail of everyone’s labour but nobody talks about the after bit at all and it really, I just found it really strange actually, you know, being quite an open person, I’m really happy to talk about things. I found it really odd that I know everything about everyone’s labour and then it’s only when you mention something about the af-, you know, post labour and people are like, ‘Oh yeah that happened to me’ and I’m like why don’t people talk about that part of it as well? It just, I just find it really interesting that that’s the kind of, you know, you think people just walk out of hospital and everything’s fine which is, you know, my experience so not the case. But that seems to be a kind of un-talked about taboo subject which yeah, seems odd.

 

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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”.

And I think, I think the big thing about it is we don’t talk about it. Y'know, I think I’ve only told one of my closest friends, apart from my family. And I think, I don't know, I think, I think we’re all a bit embarrassed about telling people you’ve got something like that. I don’t think stress incontinence is quite so bad. Although I don’t think people talk about that as much, either. But I think there’s not a stigma exactly, but it’s it makes it, makes you look as though you are or getting old and you’re getting old person’s problems.
 
Embarrassment, I think. And I’m not, I’m not a person who gets easily embarrassed. So, I was really quite surprised to find myself not talking about it. I can’t, I don’t know what it is it’s, I think it’s a mixture of an embarrassment and feeling that people might think about you differently. And I know that’s silly because I’m sure they don’t. Perhaps if I talked about it more then, more people would talk to me that maybe they’ve got it and haven’t managed to talk about it. So, perhaps I ought to be an advocate and go out and spread the word, but I’m still a bit reluctant [laughs]. I don't know.

 

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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.

I just suppose we, as a society, we sort of have such a kind of privacy but in a way, it’s sort of more than privacy, it’s almost shame around something that’s associated with your genital tract or reproductive organs and I don’t know if that’s specific to being female. I think it might be a bit worse for women than it is for men. But I expect men suffer that as well. Y'know, anything affecting your genital tract is kind of a bit of a taboo topic. For me, it was definite like the whole, the whole kind of difficulty around talking around it was definitely that I’d been made to feel ashamed and responsible. I mean that was really actively portrayed to me. And someone examining me and saying it was disgusting is, I mean, I kind of can’t really believe that a colleague and a consultant would talk to any patient like that. But we’d, we’d yeah. And so I think I, y'know, I was very much left feeling like that was the case. And I’m sure that sort of still has an influence on how I see myself and how I think about sex and how I think about whether I would go forward with an operation and how I think about whether I would talk to anyone else about it. I feel like, y'know, for him it was just a flippant comment wasn’t it like one word that he said and it’s kind of had that really profound influence on me. But I think then, y'know, I’ve just been sort of chastised by people all the way along for the fact that I had bleeding complications, for wanting my catheter to be taken out, for taking my own analgesia when I shouldn’t have, but y'know it’s like a almost a string of things where I feel that I’ve been sort of rebuked and reprimanded by healthcare workers and so that sort of adds up to feeling ashamed about something and that, y'know I’m in the wrong in some way as well.

 

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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”.

I also am very aware of my bladder when I’m having sex, I can feel that it’s tender and also the fact that it would, the UTIs are so triggered by sex and then I think obviously there are all different received understandings of sex and shame and things like that so if you also get struck by, you know, what I kind of visualised my mind is kind of like, I feel like I’m going quite wayward now but just these demonic spasms in my bladder, you know, I think these really they all start tying together and you kind of feels like, would it be extreme to say that I am being punished but, you know, it really feels like something abnormal is happening.

 

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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.

I was studying for my degree then, and I went to a GP in the college and I think it was a man again, and I think that was the first time anybody said to me, “Well you’re obviously wiping the wrong way,” or, “You’re obviously not washing properly,” or you know, and I thought, okay, perhaps that’s right, I ought to be cleaner. And I felt a lot of shame about that, and it was very, very hard hearing that ‘cos I thought oh my God, it’s ‘cos I, you know I, I knew that the cause of a bladder infection was by that point almost certainly you know faecal material that had managed to get itself in the wrong place. And of course, you know, I guess like many women, I assumed it must be mine and not some partner’s faecal matter. So I, I took it, you know and I went, “Oh God, I must be responsible for this.” Right, so that was very hard. Took the antibiotics, felt chastened, felt bad about once again having to own up to having had sex to a middle-aged man. And was quite humiliated and in a lot of pain and agony.
 
So, but I think that, I think that’s one of the issues young sexually active women, you know they’re not, not talked to very generously, I don’t think by a lot of healthcare professionals. So the, and, and I guess we also embody that shame ourselves, you know, as, as women. You know nobody did raise their eyebrows about my cleanliness, but I just knew I should feel it somehow, I guess, that’s just general gendered culture. But, but certainly you know, feeling ashamed by your sexual activity and this, and then having to feel shame about defending what’s really going on in your symptoms, that’s pretty hard when you are 23.

 

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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”.

Well I think it affects me a bit of being like being self-aware, you know, in how being self-aware on, on how my pants look. You know like I feel like very uncomfortable every time I, because it happens throughout the day I don’t notice, but it happens you know. And then in the end of the day I come home and I am smelling horribly and, I mean I would say like it doesn’t have an impact in like, I don’t know I’m walking and I have no, you know it’s not like, it’s not disabling you know. Well maybe it’s coming from thinking of my research, it’s not that it does disable me, but it makes me feel ashamed most of the time, you know. 
 
I think like between 8 and noon, 8 in the, 8am and noon I am fine, but after that if I, if I have to stay in the office I am feeling dreadful. Like I stay sometimes because I have to work, but I, I am not comfortable to be there. And I tend to take, to shower twice a day if this is really hard if it’s been a day that I have been like doing a lot of things. So yeah I think it makes me feel ashamed you know, more most of the time I’m aware of me, I’m aware of my body, fluids of my body, smells. Yeah, so I would say that.
 
Well I think I don’t know, we don’t like, I think we don’t like bad things or smelly things; you know. Like I think it’s a general self-awareness that things that are smelly or bad are not nice, and things that are beautiful and smell like roses are nice and you know. I think it’s very genderish, or gender, a gender thing. Because I remember when I met my boyfriend he would be a bit smelly you know, and I was like “Have you noticed you’re smelly?” And he was like, “No.” And I was like, “How you cannot notice?” You know. I notice like, even if it’s like minimum, I notice what, how I am smelling you know. And I mean it’s a silly example, but my whole point is like I recognise me being really aware of my smells and I’ve had conversations with my friends, like, about like, I don’t know you think some type of deodorant or whatever, you know. So I think it, it goes in that direction. In my case I, I feel like since they, since I was very, oh since I was a child actually, I remember in the school not wanting to, when I was a child I remember not wanting to take a shower. I don’t know why, or how it happened, and then my mum told me like, “Oh but you’re smelly, you know.” And I was like, and then I would be aware of that, since I was like six or seven, and since then I’ve been always aware of like smells. And it’s like a big deal for me.

 

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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.

You feel dirty, you feel dirty as well, that’s what, you know, you feel really dirty. You’re scared in case you might be smelly, and, you know, I feel embarrassed about my bedroom. I don’t want my kids to know and yet, you know, it’s only, we’ve all got the same type of bodies and all that that I need, I need my daughter to, I know my daughter does kinda know but we had an incident. It was actually, I think it was like Christmas Day of all days and our relationship has been a bit fragile at times for various other reasons I will not go into but she’d come into my room but I felt exposed because I was in disarray because of the bedsheets and everything and she wouldn’t get out of my room and that’s really bad and normally there wouldn’t have been and later and I know she was hurt but I just needed her out of the room because I was embarrassed but later when I told her she said, “Ah that explains, that explains, oh that explains it” and I said, “What?” and I said, you know, “Christmas?” and she said, “Yeah.” And so yeah, it’s just you don’t want to, people generally don’t want to share that but I am blabbing it but then to just certain people but then I find that they’re agreeing and it’s almost a bit like you’re in a different club that it’s all, “Yeah, yeah we’re having this, do this, do that.” 

 

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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.

Yeah, I think it was women born in the 50s, we weren’t encouraged to talk about that sort of thing I feel. Certainly, my mother didn’t like talking about things like that. She was highly embarrassed when I got my first one at 17 and she was talking to her, her sister who had been a nurse, she was a retired nurse and then I got all this rubbish about what was going to happen to me, about, you know, “Oh, you’ll have to have this, and you’ll have to have that.” They had no clue what they were talking about, but they didn’t want be, talk about it anyway because it was embarrassing, it was a female thing because they’d been born in the 20s so they really didn’t talk about things like that.

 

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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.

Yeah, they, one of the things that I found was that it took me a long time to openly talk about actually even having a urinary incontinence problem to begin with anybody outside of the medical profession I suppose to begin with, and even with my husband to a certain degree, to how bad it was, something like that. So that when there was a complication and I was in a lot of problems, I actually tried to cover it up that I had actually had transvaginal tape, I suppose, because I didn’t want people to know that you know maybe I, maybe I could wet myself or something like that, and so it took me a long time to be able to talk about it and, because it is a personal area, you know, it is your vagina, so you don’t normally talk about it. Well I never did put it that way in public conversations, in friendship even. You know, it wasn’t, it was only when I felt confident and built a relationship with one particular person which is my friend that had it done as well, had the TVT fitted as well, that–and I didn’t know, it was just that I just opened up one day that I had a complication from the surgery in the past and then I said that it was something that they had done, with, I just used the word mesh then, and then she opened up and told me about herself. But I didn’t talk about that for a long time, a really long time, because it’s a personal area, you know, you don’t talk about this, you know, you don’t talk about it, and to talk about, even with my husband, you know, difficulties with, being in a lot of pain in a sexual intimate situation that was very difficult too, it wasn’t easy, you know, trying to cope with not being able to, you know deal with pain, especially after pain in an orgasm say, because damage that has been done down there, increases the pain after an orgasm because that whole area is inflamed, and so it is not pleasurable anymore. You are not comfortable. And you are in a lot of real discomfort afterwards. And, trying to talk about that. And even things to do with, you know, I told you about my hands and the nerves and things like that. I, kind of like really hurts, you know, really hurts, but then it all stems from this one thing that started in your vagina. Really hard, you know. How do you start conversations like that? It limits your ability to converse with anybody about where is your pain, where did it stem from. You know, everybody wants to know, “Well how did it happen?”, you know.

 

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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”.

In kind of the first year postpartum but I just wanted help and I just didn’t get, understand why would nobody, the health professionals look at my vagina. Why would I say I think someone’s wrong, I couldn’t get help and I just kept thinking if I had tore my calf muscle, if I had ACL knee injury, I would get help so, you know, I didn’t mind having those conversations about prolapse and saying on the, on the phone, you know, “I don’t, I don’t mind if it’s a male or female health practitioner, I just want someone who’s really knowledgeable about women’s health to please look at my vagina.”
 
So early on I got quite used to being like, “This is just so ridiculous.” You know, I personally had lots of conversations with friends about their own rehab with knee injuries, calf muscle injuries, stood in coffee queues hearing all about it so I don’t mind dropping the P bomb into conversations. If someone has said you know, “Wow, you really snapped back from pregnancy,” I say, “Oh thank you, but I actually have a pelvic organ prolapse so I actually haven’t snapped back, you know, but I’m managing it okay,” and that often just leads to really interesting conversations whether it’s men or women.
 
It is a more common issue, you know, you’re not alone, it can feel like you’re really alone and you know, you don’t need to be open about it. It’s your body, it’s up to you, how you feel about it but I think you do need to find ways of letting people know what your needs are now so yeah I felt, I just think it’s another part of my body and I don’t mind, I don’t mind talking about it but I know, I know some women struggle talking about it and it is private, it is personal.
 

 

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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.

It’s a taboo subject, isn’t it, talking about genitalia, you know, there’s so many things we don’t want to talk about, piles, haemorrhoids for example there’s another one, that can, menopause affects vaginal atrophy, vaginal atrophy it affects, oh it affects the vulva, the vagina, the clitoris, the anus, the bladder, there you go I’ve said all those words [laughs]. But many women don’t want to. I once said to my GP, and this was probably about three years ago, for some reason I find the clitoris really cringey, you know, to talk about and she said you know, she’s a younger, younger woman, she said I don’t see why, it’s just a name for a part of your anatomy. So yeah fair enough, we need to talk about them more.

 

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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.

It’s like a taboo and maybe the message to the public needs to be that actually, as a society, we need to be much more open to talking about women’s health and things that may feel uncomfortable and embarrassing, but we don’t want it to be uncomfortable and embarrassing for the next generation. So as parents, carers, teachers, we should actually all, as women, stand together and talk about these issues however hard and embarrassing we find it so that our kids and their kids don’t have to feel the shame that we have lived with. I don’t want my daughters to grow up and this happen to them and them feel ashamed and embarrassed like they’ve got a black cloud over their heads that nobody knows about. So maybe, as a society, we should stand together and all women, and men as well, should, you know, husbands deal with it with their wives. We should all stand together and not be ashamed of what we’re going through and make it less of a taboo.
 

 

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