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