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.

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).

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.

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.

Liz struggles with navigating her own health limits from prolapse and fibromyalgia with being a carer for two relatives.

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.

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”.

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.

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.