Urogynaecological conditions: prolapse, bladder and pelvic floor problems

Emotional wellbeing

For many of the women we talked to, having an urogynaecological condition had an impact on their emotional wellbeing. For some, this impact was significant.
 
This section covers:

  • Feeling upset and worried
  • No longer being the same person
  • No longer being able to do things
  • Effect on relationships
  • Feeling cross not to have known
  • Feeling more in control 

In this section we use the terms:
Pelvic organ prolapse (prolapse) is a condition in which pelvic organs, like the bladder and uterus (sometimes called the womb), move down or slip out of place and may bulge into the vagina.

Urinary incontinence is the unintentional loss of wee/urine. There are other bladder symptoms that do not involve incontinence, such as needing to urinate a lot, getting up at night a lot for a wee, or difficulties emptying the bladder.

UTIs (Urinary Tract Infections) are when bacteria infect the system that stores urine (such as the bladder). There are other types of conditions that can involve bladder irritation and pain, such as interstitial cystitis (also called bladder pain syndrome).

Elly feels that the emotional side of living with prolapse is important and often overlooked.

Elly feels that the emotional side of living with prolapse is important and often overlooked.

Age at interview: 28
Sex: Female
Conditions: pelvic organ prolapse, stress urinary incontinence
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I find that there’s not any emotional support whatsoever. It’s like you’re given this massive blow and then you’re left to think about it on your own. It affects me every aspect of your life. Your day to day living at home. Physically, how you feel. What you can do. It affects your relationships, all of that is going to eventually have a knock on effect on you emotionally. I don’t know if I feel like I’m not the person I used to be. I think that’s one of the big things. I don’t feel attractive any more. I feel like I’ve lost myself quite a lot since being diagnosed with my prolapses. I think just I’ve felt quite lost. I’ve felt quite alone and no one really to talk to about that. It feels like, it feels like a life sentence. I’ve been told that I’m going to struggle for the rest of my life with pelvic problems, surgery or no surgery, I will still have problems in the future. It is a big thing to be told that you’re going to live the rest of your life struggling with a problem to have no other emotional support there.

 

Kezia felt mental health support was not forthcoming on the NHS, so she opted to access it via a work scheme.

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Kezia felt mental health support was not forthcoming on the NHS, so she opted to access it via a work scheme.

Age at interview: 29
Sex: Female
Conditions: pelvic organ prolapse
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And with the mental health offerings, I found it quite frustrating. I have, in my work had a like employee assistance programme which means that I had, have been able to have like six sessions of talking therapy which I’ve used for this and for like to process the birth, birth trauma and the kind of trauma of having an injury following birth. And I feel a bit aggrieved at the NHS because I know they ask the right questions, and they talk a lot about how they ask the right questions and how the support services are there if you need them. But, firstly, I kind of lost trust in the system following the birth so I didn’t necessarily trust those services that they would provide, and secondly, I just felt like I shouldn’t have to ask for them. I felt like it’s on my notes, it’s on my notes that during pregnancy or like it’s a pre-existing condition for me that I have mild anxiety, that’s on my notes. It’s on my notes that I found my birth traumatic, I told you. And it’s on my notes that I reported these symptoms which are like in line with having a prolapse. All of those three factors together should mean that you prescribe me with some well-being support and some mental health support.
 
You know, like I’ve told the nurse practitioner that I’m crying every day. Like you should just say, “You don’t have to do this, it is your choice but my medical recommendation is you take us up on this offer of talking to someone or going to, you know, speak to this person about what we can do for you, for your emotional and mental wellbeing,” and that, because that was, it was always just, “Are you okay? Are you coping?” I was like, “Well yeah I am,” like I’ve got myself the support that I need. I have a very supportive partner. I have got access like the lucky with the childcare support bubble, I’ve been able to see my parents and talk to my friends, and I’ve been very open with talking about it. Like I’m not at risk of anything really serious but I’m still struggling but I can’t be struggling because I’ve got this tiny baby to look after so, if you ask me if I’m okay, like I’ll tell you, “No but yes,” I’m fundamentally I am okay but it still doesn’t mean that I don’t need support, and so I found that quite frustrating.

 

 

Feeling upset and worried

Many of the people we spoke to said they had been hard hit emotionally. Leah, who has been diagnosed with a chronic urinary tract infection (UTI), said mentally she “was just a mess” after her lifestyle changed dramatically with symptoms. Alaina had been in “such a dark place” when she first discovered she had prolapse. At the start of another UTI flare, Elizabeth lay awake at night and thought “when is this ever going to end?” For Jane, chronic UTIs have been “isolating” and “lonely” experiences.
 

Catherine felt shocked, tearful and daunted when she was told she had a pelvic organ prolapse.

Catherine felt shocked, tearful and daunted when she was told she had a pelvic organ prolapse.

Age at interview: 41
Sex: Female
Condition: pelvic organ prolapse
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So then the appointment came and I guess I was quite shocked when she said it because when you think of prolapses-, I think the first thing I thought that my vagina was gonna fall out and you only really associate them with old people. You know, I’ve heard of old people having prolapses but no-one kind of like my age and within my friendship circle as well, I don’t know anybody else who’s had a prolapse either. So it was all kind of quite daunting really. I admit I did-, once I came home, I did like, I felt quite teary because again I just, it was just the unknown really and I didn’t really know what I was going into.
 
I think mentally it hit me more. It hit me more mentally than it did physically if I’m honest and I would kind of put myself down as quite a resilient person and I just didn’t know how because obviously because they took away the running side of it I had no escapism.
 
I felt really lost so I didn’t really know where to turn.

 


  
There were a few people we talked to, including Hope, who did not feel that they had been affected emotionally by their urogynaecological conditions. Rosie, who developed urinary incontinence after a traumatic birth in her mid-30s, felt that being well supported had helped to reduce the emotional impact. Cynthia, who had a pelvic organ prolapse following childbirth, said she coped by trying to ignore her emotions.
 
Urogynaecological problems could become all consuming. This was the case for Eve and Rose who had multiple pelvic organ prolapses, as well as Leah and Jane who had experienced years of problems with UTIs. For these people, and others, the pelvic and bladder symptoms became the central focus of daily life, and it was emotionally exhausting constantly thinking about and managing their symptoms. Difficulties in accessing care or feeling dismissed by doctors could add a further emotional burden, as was the case for Sian and Elizabeth.
 

Elizabeth has felt dismissed in doctor’s appointments, which has added to the emotional toll of experiencing UTI symptom flare ups.

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Elizabeth has felt dismissed in doctor’s appointments, which has added to the emotional toll of experiencing UTI symptom flare ups.

Age at interview: 64
Sex: Female
Conditions: chronic UTI, urinary urgency, urinary frequency
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It does impact on me. It gets me, I’m not a person who gets depressed, never have been, but it does, you know, when, if you’re having a flare and I mean I do have little-, you know, since I’ve been on the four a day antibiotics I haven’t had such bad flares, but before I was on the three a day or two a day sometimes, I was having quite bad flares. And, you know, you lie awake at night time thinking when is this ever going to end? Am I ever going to go back to how I used to be? You know, what, what’s going to happen to me? What if I get sepsis? You know, what if it gets so bad and I go to A&E and I’m fobbed off again like. And it does impact on you mentally.

 

Dr. Sharon Dixon, a GP, discusses supports that might help when people are struggling with the emotional impact of living with urogynaecological conditions.

Dr. Sharon Dixon, a GP, discusses supports that might help when people are struggling with the emotional impact of living with urogynaecological conditions.

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I'm always really glad when somebody has come to ask for support with this because there’s the hope that that’s a first step towards accessing all sorts of help, and I think that does include emotional and psychological support. Being able to talk about it. Learning strategies to manage it practically. Having the opportunity to develop an understanding that it’s not something that’s somebody’s fault. That it’s a-, something that can affect lots and lots of people, not to in anyway diminish that individual experience. But people can sometimes feel quite isolated and quite lonely, where they've kept something inside and secret and hidden. And so that’s where support groups and those and-, and in, you know, physical and online communities and fora can be incredibly supportive and nurturing for people who kind of have that gift of understanding that it isn’t a secret, that it is something that can happen to lots of people. And I think things like support and services through physiotherapy are part of that because that gives people some things that they can do themselves, that kind of control and it-, where-, where it works, that can be really helpful. Where it interfaces with self-esteem, self-confidence, again, sometimes those practical steps like medication, like access to pads, helping people understand what products are available, including kind of reusable, and well-, you know, pants and things that can help. That can, in itself, give enormous emotional and psychological support where people start being able to do things, and connect with people, and places, and activities again. If it was having an-, and, you know, if despite all of that there’s ongoing kind of emotional and psychological distress, and interfacing with a sense of self or self-belief and self-esteem, then I think supporting somebody to access counselling or psychological support through IAPT [Improving Access to Psychological Therapies, also known as NHS Talking Therapies], would be a really useful thing to do, and something that we would be really happy to support people with in primary care.

Worrying about the future was common for the people we spoke to. Megan, who lives with bladder pain and recurrent UTIs, started thinking “have I got to live like this forever?”. Those with prolapse, such as Eve, Beth and Kezia, lived in fear of their organs “falling out”. Kezia got to the point that she was in a ‘fear cycle’ about her pelvic organ prolapse, and had “dark teary moments” when considering whether she could have another child. You can read more here about thinking about the future

Iris finds it difficult to emotionally process her urinary incontinence symptoms as they are so “intimately bound” with other aspects of her life.

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Iris finds it difficult to emotionally process her urinary incontinence symptoms as they are so “intimately bound” with other aspects of her life.

Age at interview: 32
Sex: Female
Conditions: urinary incontinence, recurrent UTI
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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 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 quite hard to sort of unpick from just the simple act of having a bit of a leak if that makes sense.
 

 

 

No longer being the same person

A lot of the women we talked to told us that they felt emotional and ‘tearful’ because they no longer felt like the same person. Beth said that she “felt a bit like a stranger in my body”. Others, like Eve, Sharon, Kezia, Catherine, and Sabrina, felt like their bodies were ‘broken’.
 

Jessy feels that her life revolves around the toilet, and she no longer feels ‘invincible’ like she used to.

Jessy feels that her life revolves around the toilet, and she no longer feels ‘invincible’ like she used to.

Age at interview: 46
Sex: Female
Conditions: urinary incontinence, urinary retention, UTI
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So yeah because it changed me from being kind of like invincible to be more vulnerable, like a, like I’m feeling, feeling invincible, like yeah I can drink and I can do whatever I want and a sense of freedom and like ah, I can do everything, to now I feel I’m feeling vulnerable like Oh God, and this bladder is doing what it wants, I have, I have a little self-control so it’s kind of like my bladder and me. And everything is, my life is kind of like a, rotating around, we just go around the bladder and the toilet breaks.

 


 
When Kerry, María, and Elly first started to experience urogynaecological condition, they felt like they had “failed” and had somehow brought it on themselves. Freia, who lived alone, and Elisabeth, who is in severe pain from her mesh surgery, spoke about how they used to be “upbeat”, “positive”, and not usually the ‘type’ to be affected emotionally – but had found themselves struggling emotionally. For Melanie, Sophie, and Helen, living with urogynaecological symptoms had made it more difficult to be confident. Liz and Catherine were surprised by the emotional toll of their conditions, as they had previously considered their mental wellbeing to be “strong”.
 

Cynthia’s sense of self has changed as she’s become more inactive and aware of her body’s vulnerability.

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Cynthia’s sense of self has changed as she’s become more inactive and aware of her body’s vulnerability.

Age at interview: 45
Sex: Female
Condition: pelvic organ prolapse
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I was always very kind of fit, active, didn’t have any medical problems. And so I think my perception of myself has changed, really. And I suppose just kind of being. I mean, it’s interesting as well isn’t it cos post-partum you have that in a way you sort of have this like realisation of your own mortality just going through that experience. And then, y'know, suddenly from being kind of fit and well to being anaemic and on painkillers and on laxatives and, you know, just like suddenly this stack of medication and that, I think that does have an impact on the way you view yourself. And I mean, yeah, after the first baby being discharged home, I was having to go up the stairs on my hands and knees and I just remember thinking, I’d like gone from being, y'know really well in my early 30s to sort of being completely unable to even walk up the stairs. And that, that’s like the acute aftermath of childbirth. But I, it did, that went on for quite a long time and yeah, part of me again just having insomniac baby. But then I do think sort of having to go to these clinics and sort of feeling like I’ve got a chronic condition. ‘Cos, yeah, it does change my self-perception definitely, yeah.

 


 
Kerry, who has always tried to look after her body and health, was really shocked to develop prolapse in her early 60s. Sue Y used to think that only “old ladies get prolapse”. Several people, like Elly and María, said that they no longer felt they fitted in with the ideal of a “perfect” woman.

María feels ashamed because she feels that she is “not perfect” or “not enough” anymore.

María feels ashamed because she feels that she is “not perfect” or “not enough” anymore.

Age at interview: 33
Sex: Female
Condition: urinary incontinence
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Shame, you know, like I think like it’s a tag of shame I have in my poor head, you know. It makes me feel, it has an impact in making, making me feel kind of, how to say? …Kind of not perfect, you know and again, it’s something we discussed, you know like yeah, I’m not perfect, I’m aware of that. But it’s still I think there is some voice deep inside that is saying like you are not right, you know, and I think that’s the, the, the conversation that is very subtle because again I don’t research about this, I don’t, I prefer not to know. But I think the conversation in the back of my mind is like you are not right, you are not perfect, you are not enough, you are not , and it’s such a small thing you know because it’s not, again it’s not something that disables me where like I cannot walk anymore, but it’s, it has such an important impact, you know in, I consciously don’t give a space, don’t give it a space, but unconsciously of course I’m giving it a space. Like there is something going on, there is some conversation there that is, bah.


 
Elly, who has a two-year-old child, finds it difficult living with the expectation that the experience for new mums is that “it’s all pretty and perfect, and everything is rainbows and butterflies”, when this isn’t the reality for her and other women. Rose says she sometimes feels jealous of people who can still go running, and jokingly says that she sometimes wants to “trip them up”. Anna struggles with identifying as someone with a chronic illness, as part of her thinks that “if I succumb to it, it makes it worse”. 

No longer being able to do things

Of those we interviewed, many said that they no longer felt free to do the things they did before, or to relax and have fun in the same way. For Phyllis, Kezia, and Leah, amongst others, sport and exercise had always been really important so it was upsetting to be less active. Catherine runs a fitness class and running had been her “escape”. Sharon feels sad because she is not the “active mum” that she wanted to be and feels that her child deserves someone who can jump on the trampoline with them.

Phyllis’ incontinence issues have made it difficult to do things she previously enjoyed, like exercising and going on holiday.

Phyllis’ incontinence issues have made it difficult to do things she previously enjoyed, like exercising and going on holiday.

Age at interview: 78
Sex: Female
Conditions: recurrent UTI, chronic UTI, urinary incontinence
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Well, they were stopping me from doing things I wanted to do, to start with. If I could dampen the symptoms down enough to go out and about, I was always in a miserable mood, you know, nothing was ever fun. I used-, and it stopped me from exercising. I’ve always been a fanatical exerciser. And I stopped doing it because, you know, if you can imagine running and every step you take you feel as though you are gonna, you’re going to wet your knickers because you feel a desperate urge to go to the loo all the time [laughs]. That was really unpleasant, I had to stop that. Any-, all the exercise that I used to do, I stopped. And, you know, it’s also because you've got this feeling of irritation all the time, it makes you, it does make you leak. You know, normally I don’t, but when I’ve got symptoms you can because it’s an irritation as if you’re going to go to the loo that minute, you know [laughs].

 


  
Many people, including Mehar, Sue and Elly, said that they felt they had lost their freedom because they now had to live life around being near to a loo. Kerry missed a festival because she didn’t feel up to using festival toilets with her bowel problems. Jenny, Sue Y, Iris, Jan, and others told us about embarrassing bowel and bladder accidents. Jan no longer feels like booking a holiday because of fear of urine leaks and being too far away from a toilet. 

Eve finds it sad that she cannot just go out and have “couple of Proseccos” and dance with her friends without worrying about her bladder.

Eve finds it sad that she cannot just go out and have “couple of Proseccos” and dance with her friends without worrying about her bladder.

Age at interview: 39
Sex: Female
Conditions: pelvic organ prolapse, urinary incontinence, urinary frequency
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I’ve actually really cut back on my drinking, I mean I don’t drink loads anyway, but like, you know with kids and stuff, but I’ve actually since January pretty much stopped drinking alcohol, you know, just to see if that helps, see if that has an effect. I had quite a  little bit of embarrassing experience at a wedding that I went to where I had like a few Proseccos and was dancing and then leaked quite badly which was just yeah it wasn’t just embarrassing, I just felt so mortified like I just felt really sad that I just can’t just have a couple of Proseccos and go on the dance floor, like I I just think, I’d just forgotten, I I just wanted to feel normal like I’m at a wedding and I just wanna dance and, you know, and so that was yeah, so then luckily one of my friends there, spoke to receptionist and got me some pads, oh it was just like, you know, yeah but that’s quite, yeah that’s quite embarrassing. Like yeah, it’s just being out and about and not knowing what’s going to happen and really like not being able to run after my kids or lift my kids is just like, it’s really hard, like the physio on Friday said that I needed to really try and not lift so much in the next couple of weeks whilst I’m sort of starting from scratch again. It’s, you know, and she did show me how to do it, like safe-, not safely but, you know, support yourself more when you’re doing it but it’s really hard like when my, you know, they want to dance around [upset] sorry just difficult when you’ve got little ones.

 

 

Effect on relationships

Of those we talked to, many said that their relationships and friendships had changed. Mehar and Jane said that they sometimes felt completely alone. 

Mehar has bladder problems and feels “a bit of a burden” when she is out with friends. She finds her friends don’t always understand why a UTI is causing her so many problems.

Mehar has bladder problems and feels “a bit of a burden” when she is out with friends. She finds her friends don’t always understand why a UTI is causing her so many problems.

Age at interview: 22
Sex: Female
Conditions: recurrent UTI, urinary incontinence
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Again it’s isolating, I have to miss out on going out with friends and then I feel quite lonely because my friends go and do things and I can’t do it and then when I am out with my friends I feel like, a little bit of a burden because, you know, I don’t want to keep complaining that, “Oh I’m in pain and I need to sit down or I need to go find a toilet,” when I went five minutes ago, and I feel it’s just not something that because sometimes when you say to people oh you have a UTI, it’s just like, ‘it’s just a UTI, people, women get them quite often and why is it a big deal?’ and I don’t think there’s enough information over the recurrent UTIs and how bad UTIs can get and how painful they can be when they get, you know, when they become severe and I don’t think people realise that it can make you a bit bound, but, you know, you just can’t move and it’s not your problem, it’s just the way your body’s reacting. I’ve had quite a bit of issues with that, like trying to explain it to my non-chronically ill friends. I have some that are really understanding and then there’s some who just don’t understand why a UTI is causing problems like that when people get UTIs on a daily basis, yeah.

 


 
Phoebe, Sian, and others, felt sad, upset and frustrated that their condition has prevented them from being the type of mum (or grandma) that they wanted to be. Melanie was upset that she was unable to go swimming with her child. Sabrina wants “to be the mum that’s playing” rather than the “mum that just sits there and watches”. Jo misses the physical contact and just wants to be able to pick her grandchild up. You can read more about the impact of urogynaecological conditions and treatments on relationships with children and wider family.
 
People talked to us about the impact on relationships with their partners. Alaina had become reliant on her husband, and Helen’s husband had to take over household and caring roles. Many, including Jasmine, Leah, and Catherine, talked about the impact on their intimate relationships, and some were worried about going through future pregnancies. Several avoided sex because they were frightened, found it painful or embarrassing, or just did not feel like it, and they worried it would affect their relationships with their partners. Eve feels that her prolapse had affected her intimate relationship with her partner and this has been emotionally very hard.

Feeling cross not to have known

Jenny, Elly, and Jan, amongst others, felt cross and annoyed that nobody had told them earlier that prolapses and urinary incontinence can happen. They felt that, had there been more information and awareness, they could have done something about it before developing a problem or it getting worse. Phoebe had never even heard of prolapse before she was told she had one and felt “totally in the dark”.
 

Jeannie is worried about her incontinence and feels angry that no one gave her the information that she needed earlier.

Jeannie is worried about her incontinence and feels angry that no one gave her the information that she needed earlier.

Age at interview: 62
Sex: Female
Condition: pelvic organ prolapse
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I was scared of becoming incontinent, and I was scared of sort of ending up being one of those sort of smelly old women on the bus, that everyone moves away from because I can’t manage my incontinence and I just didn’t know what was gonna happen with that. And I just felt, you know it, fear of the operation and fear that it wouldn’t go well and then you know I’d end up being in a worse position.
 
So, I spent a lot of time crying at that time. And then I think I got quite, I felt quite angry and I just felt of all the times that I’ve been to the doctors and had smears and you know after I’d had my second child, and going for sort of contraceptive advice, and everything, all the times that people had you know been looking, and no-one had said, no-one had said, ‘You know like there’s a problem here, and especially after menopause it might get a lot worse, so in a, be careful what you’re doing in your job, be careful about lifting, be careful, you know what you’re doing in your general life. You know go now to a physiotherapist and get the exercises, and, and get regular check-ups.’ Nobody says it, nobody said a word. I felt really, I still, still feeling tearful now because I feel so annoyed that you know that there was nothing, nobody mentioned anything. But I just, it’s just unbelievable really.

 

  

Feeling more in control 

Several of the people we talked to had found ways to feel more in control. Anna had started to notice that her painful bladder symptoms were linked to her “state of mind” and this had helped her to take control back. Going to therapy had helped Holly, Beth and Catherine, although some, like Leah, told us that counselling could be difficult to access. Mehar found that keeping a workbook journaling her problems helped to manage her emotions.
 
Melanie, Alaina and Sharon said that they had started to “look after” themselves more and, as Sharon said, focus on “healing” rather than “fixing”. Rose used her anger to become proactive about getting help for herself. Vickie, who initially had “days where I just didn’t wanna be here,” now felt her prolapse is “something that you kind of manage but it doesn’t have to define your life and who you are”. Some, like Janet and Jenni, felt they need to be kinder to themselves.
 

Sharon has found a more accepting way of living with prolapse which focuses on healing, rather than fixing, herself.

Sharon has found a more accepting way of living with prolapse which focuses on healing, rather than fixing, herself.

Age at interview: 40
Sex: Female
Conditions: pelvic organ prolapse, stress urinary incontinence
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You know, I’m not gonna be fixed in the sense that I thought I was for when I was first diagnosed I was thinking, ‘I need to be fixed’ and now I’m thinking, ‘I’m not fixed but I feel healed and I feel whole again but that’s’ that’s thanks to finding a more holistic approach which is pelvic health exercises, Kegels, movement, the right kind of movement, strengthening the muscles around my pelvic floor, knowing how to safely move and stand and lift things and squat, not being afraid when I get a cough or a cold, you know, I was told, ‘Don’t get a cough or a cold’ which is terrible advice because we live in the world, we are going to get coughs and colds. I was told, ‘Don’t lift your baby,’ awful advice because you have to lift things and so I know, I have developed the tools and I and I’m stronger now but it’s taken a long time, I’ve cob-, cobbled that together from, from different people I’ve found mainly virtually because and I’ve finally found a really fabulous in-person physio but it’s taken some time.

 


  
Finding ways to help other people in a similar position, or doing things that they enjoyed, helped Mehar, Jane, Jamie, and others, to feel more positive about the future. Several, like Fiona, told us that their experiences had made them more able to stand up for themselves. You can read more here about experiences of challenging stigma and embarrassment, and messages for other people with urogynaecological conditions.

 

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