Urogynaecological conditions: prolapse, bladder and pelvic floor problems
Family and friends
The people we talked to told us about the ways that their urogynaecological conditions had had an impact on their children, wider family and friends.
This section covers:
- Impacts on children
- Impacts on extended family
- Impacts on friendships
You can also read about impacts of urogynaecological conditions on relationships with partners, sex and intimacy here.
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).
Impact on children
A key impact for the women we talked to with children was missing out on doing various activities together. Chelsea couldn’t watch her son when he plays in the marching brass band because of the “unpredictability of toilets nearby”. Leeanne, Phoebe, and others, were not able to play, run, jump, or dance with their young children felt sad about the impact on them. Jo isn’t able to go skiing with her family. Julie noted that the time she spent in and out of hospital for treatments was time missed with her children. Vickie thought that her time in hospital had been unsettling for her daughter.
Melanie gave up swimming because she thinks it is a trigger for her urinary infections. As a result, she feels she misses out on spending time with her son on holidays.
Melanie gave up swimming because she thinks it is a trigger for her urinary infections. As a result, she feels she misses out on spending time with her son on holidays.
So whereby I’d go on holiday with my son and for me that would be quite a lot of money and, you know, we, we’ve only sort of been, I’ve been trying to do one of those and things for the last few years because he’s growing up so quickly, he’s nearly thirteen so but then I wasn’t being able to go in the pool with him and I felt so sad about that because, you know, these are special moments. So, I remember a couple of times having to sit outside the pool throw the ball to him or just sort of engage with him and not be able to get in the pool. If we go to the sea, you know, I’d just splash my feet and that was it and I love water, I think water is therapy, baths I love, I can’t do it anymore. So for me that’s a real source of sadness.
Sharon says she has tried to “let go” of those feelings and feels her son has now adapted to her saying, “I’m not strong enough for that today or just yet.” Now that Sian’s children are older, she can listen to them even though she can’t always physically do things for them, and she told us, “I think they more appreciate the fact that I’m a listener”.
People tried to find ways to minimise the impact on their children. Elly and her five-year-old daughter make a game of finding the toilets together when they go out. Sabrina’s sister will “step in” and play football with her son if he wants to play and she can’t.
Some felt they couldn’t parent in the way they wanted to. Elly told us that she had less energy, patience, and ability to cope with sleepless nights after her prolapse. Freia once shouted at her grown-up daughter to get out of her bedroom, which she had never done before, because she was embarrassed about her urinary incontinence.
For Mary Y, Sian, and others, there had been a negative impact on their relationship with their children. Sian feels that their relationship was “broken beyond repair” after her mesh surgery.
Mary Y explains how her teenage sons reacted to her urinary incontinence and subsequent surgery.
Mary Y explains how her teenage sons reacted to her urinary incontinence and subsequent surgery.
Well one issue is, you know, if one is incontinent and has got a very obviously wet backside, all down the legs as well and your children see it it’s learning how to deal with this. You know, they are mortified too, they don’t want to discuss it and, and I didn’t feel like it, at the time I didn’t want to discuss it either. Once I started to use pads that meant that I had to hide them because I, you know, we have a shared bathroom and you know, boys, teenage boys do not want to, to accept that their mother is totally incontinent because that’s what old people do. You know, it’s something that, incontinence it’s something that people make quite a lot of jokes about, I don’t find it funny at all as you can imagine but, you know, you can always hear those people saying, “I wet myself laughing,” or words to that effect. Well, you know, I bet they didn’t, and they wouldn’t like it if they did. So that sort of thing gets me annoyed actually but I can accept that people want to laugh about it but it’s no laughing matter when it’s your own problem.
Absolutely.
So my boys, well eventually, you know, they, the eldest went off to university and that was that and then and then the youngest one went to uni too so I didn’t have to deal with that anymore but once I started having surgery, I think the youngest one had returned home and he just didn’t wanna know, you know. You know, I was sitting there, you know, with a catheter bag or a suprapubic catheter, you know, for months on end and he didn’t want to have anything to do with it [upset] so he, that had to be dealt with.
Janet and Elizabeth said that because their children had seen themselves the impact of urogynaecological conditions, they had grown in wisdom and empathy. Elizabeth’s daughter understood why her mum had to go back to their holiday cabin and couldn’t walk on the beach with them. Janet’s adult children are very supportive and “prepared to listen to me ranting on when things have been bad.” Chelsea’s teenage children have become more understanding as they’ve got older, and will point out a toilet when they’re out and about. Jan thinks it’s important that her daughter, who is her twenties, knows about prolapse.
Impact on extended family
Some people felt that their relationships with family members became strained or complicated because of their urogynaecological problems. Sharon, who has prolapse, finds it frustrating when her family say things like, “Why aren’t you getting fixed?” or “Of course you can play tennis”. Freia had lost the closeness with her sister who had moved away, and she now felt unable to visit because of the impact her urinary incontinence would have on her stay.
Helen finds it frustrating that her family members don’t understand the impact of diet as a trigger for her UTIs.
Helen finds it frustrating that her family members don’t understand the impact of diet as a trigger for her UTIs.
When it can be quite upsetting, y'know, silly things like if family members y'know, they know everything that’s been going on and you go round there and they sort of present you with a spicy curry or something. And you are like, how have you not understood that this has been going on for the last, y'know or they’ll make you, there’ll be a lovely dessert and you’ll tuck into it and eat it and then they’ll say, “Oh, we did have an orange in it and an orange on the top. That’s okay isn’t it?” And you’re like ‘Well what, no. You know about this.’ Then that makes you feel rubbish, ‘cos you don’t wanna be y'know, you feel upset that they haven't listened enough to know what you’re going through. And you also don’t wanna whinge on at people all the time.
Liz struggles with navigating her own health limits from prolapse and fibromyalgia with being a carer for two relatives.
Liz struggles with navigating her own health limits from prolapse and fibromyalgia with being a carer for two relatives.
Some days I’m really depressed about it, you know it does limit, although I’ve got physical disabilities I’m also sandwiched, I’m a carer for two people. Then my daughter is disabled, and fortunately she’s just about a ten-minute walk from me, but she needs a lot of attention and that impacts. I take her out and that impacts on that. My mother lives in another city, she’s 89, so I don’t go and see her as much, by the time I get to where I’m going you know I just, I’m there, in that door and [laughs], so it does impact and it does impact on my social, well not that there has been much in the last couple of years anyway, but what little there is it does impact, you know and wanting to go be you know, I have to think about the distance and, between toilet stops and everything like that.
Others we talked to described having closer relationships with their mum, aunt or sister through shared experiences and understanding of urogynaecological conditions. Chloe developed prolapse after childbirth and has become closer to her mum, whereas before they had been a bit distanced: “I could just talk about anything, and she’d be okay and she understand it because she was my mum and she’d been though it as well”. Sabrina’s mum told her, “I’ve got two kids, I get it,” when she explained that she couldn’t play with her children in the garden because of urinary incontinence.
Some people, like Elly, were unaware at first that their mothers or other family members had been living with prolapse for many years. Sue Y and Rebecca had shared experiences with their sisters which had brought them closer.
Katy’s dad has incontinence due to prostate cancer which she said had “given us a sort of neutral ground where we can talk about it”.
Impact on friendships
Friendships were often affected in some way by urogynaecological conditions. Although Jan says she’s quite “an open person” and finds that it helps to talk to others, some friends “literally sort of cut me off’ and say, “let’s talk about something else”. Georgina and Jeannie had also found that very few friends kept this conversation going to find out how they were coping.
Some people we talked to, like Helen and Beth, said that they put on a pretence of being okay. However, Amy explained “It’s hard to be super upbeat when you’re actually a bit depressed”.
When friends did not really understand what it was like to have urogynaecological problems this could have a negative impact on friendships. Mary Y has gradually dropped out of her social set because she couldn’t take part in activities, or was always in and out of hospital. She felt that “people get bored with it” and that their understanding was often short-lived. Rowan’s friend didn’t understand why she couldn’t go walking during a urinary tract flare. Holly has problems with UTIs and says that, because she sometimes appears to be “functioning quite well”, people often assume she’s fully better when she’s not.
For several years, Elisabeth, who had mesh surgery for incontinence, was really pleased to have her life “back on track”.
For several years, Elisabeth, who had mesh surgery for incontinence, was really pleased to have her life “back on track”.
And then the next thing I remember of course is waking up and somebody talking to me saying we’ve done it, we’ve done the tape we’ve also done the hysterectomy, we’ve left your ovaries and that was that. I think you sort of, they come and see you and you’re still groggy under anaesthetic and things but that was brilliant, so I came round and it was like alright okay here we go start my life, fantastic. I was discharged from hospital and then I had an awful urinary infection or infection where I had to go to the GP and go on antibiotics but that all soon sorted itself out and then that was wonderful. I felt absolutely amazing within, I mean there was the weeks of recovery and everything else but just felt amazing and suddenly my life was back on track, no awful periods, no incontinence it was great, I could dance, I could run, I could cough, I could play with the kids it was just unbelievable and to all intents and purposes an absolutely brilliant success.
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.
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.
Talking with friends about urogynaecological issues had been a bonding experience for some people. Vicky goes walking with a friend once a week and they talk about “absolutely anything”. Some had friends with similar issues, and Anita says that she and her friends “sympathised greatly with each other”. When Phoebe started talking to friends about prolapse, she found others had also had various issues after childbirth. Hope, who is in her seventies, mentioned her recent prolapse to a friend and found that she too shared this experience but hadn’t told anyone.
Having urogynaecological conditions had also provided opportunities to develop new friendships with people who shared the same experience. Sharon has made new friends through social media groups about prolapse. Jessy had joined a women’s circle which had provided a safe space to talk about her experiences. You can also read more about experiences of information and support here.
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