Family and friends when experiencing urogynaecological conditions

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 for 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.

 

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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.

Vickie had surgery for her prolapse. She tries to find ways around lifting her children, such as asking her son to climb into the “pirate ship” (car seat).

So, in terms of working around the guidance, my physio was hugely important but then also other women, definitely, you know, “This is what I do. I try not to carry the baby on the walker, you know, I’ll try pushing the stroller. If they’re, you know, if they’re feeling a bit whingy and a bit upset and they want cuddles, it has to be my husband and we’ll hold hands. I guide my son into the car and, you know, make it a game and he’s climbing the pirate ship,” and all of those silly little things that just make-, inject a little bit of fun and normalise it for the children because prolapse doesn’t just affect you, it affects your wider family [and] existence.

 

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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.

Sian, who is in a wheelchair following mesh surgery, says her daughter “suffered greatly” because she could not be the mum she wanted to be for her when she was a teenager.

But my relationship with my eldest daughter, it was just broken beyond repair. I think it just suffered greatly. We’re no longer in contact. I think it was because you know like when children have their friends over, ‘cos I mean she was a teenager then. When they have friends over for food, you know, and there’s normally the mother that’s making the food or you know, you’re taking them to a concert or they go for a picnic in the park, you know, and you do, you’re shopping for clothes with them; she couldn't do that with me. And I’ll always remember she used to get on the school bus and pretend to live in my friend’s house opposite because she didn't want-, no, I’ll say it, she was having, she was ashamed of having a disabled mam like me. And I think it just grew into resentment on her part, you know. What can you do? You know, there was a lot of times I was in bed because of the pain, you know, I can’t blame her. And she went down a route of acting out. I can’t blame her for that either because I wasn’t really present. I tried to be as much as I possibly could, but my health wouldn't allow because it’d deteriorated.
 
Well, I have to have CBT counselling for about three years I was, when people use the term heart-broken I think they use it too casually. And because for the first time in my life, even though I had gone through a divorce, but for the first time in my life I knew what the word meant.

 

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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.

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.

 

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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.

 

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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”.

Beth is avoiding seeing friends who have had recent straightforward births so that she doesn’t have to compare stories.

Loads of my friends have been having children in the last year, like so many of them at home. And you know, none of them have-, well one has has a prolapse that I know of and all of the others had fairly straightforward births, either-, well they said that they did, and you know, normal vaginal delivery with no issues or they ended up having C-sections and I have found that quite difficult, my friends have had C-Sections. Because with my delivery, my daughter’s heart rate was going up and down and it was all over the place. And they could’ve given me a C-Section, but they didn't. And I felt like the risks of forceps delivery weren’t ever discussed, no one ever mentioned the risk to my pelvic floor at any point and I didn't feel like I was consulted for it. It happened and it, they just kind of did it to me.
 
And so I found it particularly difficult with friends who have had C-Sections. I haven't-, you know, I’ve never said anything, but internally I kind of found it quite difficult to deal with. And I’ve definitely shied away from conversations about childbirth and you know, it’s all our first time being pregnant, and it’s something that lots of people want to talk about and everyone wants to ask you about and I’ve kind of got to the point where, so we have a family friend whose just had a baby and I don’t really want to go and see them just yet because I don’t want to hear about their birth experience and I don’t want them to ask me about mine.
 
So, part of me wants to wait another few months, you know, until that’s maybe perhaps not so fresh in their memory. So yes, I think it impacted in that way. And then also lots of my friends want to-, so where I’m from there’s lots of countryside and my friends have-, lots of friends have moved back there now, and they live out in the sticks and they go walking with their babies and carriers, rather than a pram. I don’t feel like I can do that because of the impact on my pelvic floor and you know, so I sort of have tried to avoid certain things because I don’t want to physically exert myself in that way, but also don’t want to explain it either.

 

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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”.

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.

 

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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.

 

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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.