Quality of life with urogynaecological conditions

Urogynaecological conditions affected different aspects of people’s lives – from daily activities, to socialising, hobbies and special events.

The section covers:

  • Impacts of symptoms on daily life
  • Planning around symptoms and symptom management
  • Giving up or no longer enjoying activities
  • Refusing to let symptoms stop activities

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).

Impacts of symptoms on daily life

Many of the people we talked to said that everyday activities had become more difficult because of their conditions. Impacts were constant for some people while others said their symptoms fluctuated, affecting their ability to plan ahead.

For Helen, UTIs had impacted on various aspects of her life, including work, childcare, socialising and exercise.

Urinary incontinence didn’t stop Iris from doing the things she wanted to, but it was a consideration she took into account.

The impacts could be broad and all-encompassing, as Sue Y said of her prolapse and urinary incontinence: “I suppose I have to be careful most of the time about what I’m doing”. It could feel like urogynaecological conditions had taken away opportunities to be adventurous or ‘easy going’. Elly, who has prolapse, described it as losing her “get up and go”.

Fiona was left “quite bedridden at times” by her urinary infections, and needed her children’s help to get routine housework done.

Even when there were not many physical impacts of symptoms, there could still be emotional impacts, as was the case for Jenny and Vicky. Although Kerry’s prolapse does not currently cause her a lot of discomfort or difficulties, she fears it getting worse over time and having more of an impact.

Laura talks about UTI being all-consuming. She went from being an active person to struggling to walk or hold down a conversation.

For some people, particularly those who suffered with problems from UTI or mesh complications, pain limited what they could do. Holly said there were times when she simply couldn’t “function properly”.

Fiona has been bedridden with UTI. Leah also described times when “I couldn’t do anything other than just lie flat”. Laura had felt her quality of life was so bad at one point that she questioned if she could keep going and “face another day”. Elizabeth recalled how awful it is when “you can’t do anything… you can’t live your normal life. You just want to curl up in a ball and die really”. When she does feel well, Holly tries to “seize the opportunity” to do things like go out for dinner.

Being unable to sleep and get enough rest left people exhausted, which could make daily life even more challenging. This was the case for Holly, Clare, Rowan, and Laura, who had problems with UTIs. Alice and Vicky would wake many times throughout the night needing to go for a wee, causing interrupted sleep every night. Leah now takes pain medication for her bladder discomfort, so she is often drowsy in the mornings.

Vicky sometimes found it hard to get back to sleep after waking in the night to go to the toilet, and it could set her off thinking and worrying about other things.

Some of the people we spoke to had come across advice to stop particular activities in order to reduce the chances of their urogynaecological problem becoming worse. Phoebe, Kezia, Sharon, and others who developed prolapses after having babies, felt that this advice was unrealistic and incompatible with caring for young children. Kerry found it tricky too when she wanted to lift her grandchildren but knew she needed to be cautious.

Since being diagnosed with prolapse, Vickie has been cautious about lifting anything heavy. This has impacted on everyday childcare and household activities.

Amy, who has prolapse, was advised not to lift anything heavy. This impacts on everyday decisions, like what to pack in her bag, and bigger things like the type of mum she can be.

Alaina found the advice on what to avoid doing when you have prolapse very restrictive in her daily life.

Planning around symptoms and symptom management

Urinary symptoms like incontinence, frequency and urgency could require a lot of planning and thinking – for example, about timings of going to the toilet, knowing where there are toilets, and the worry about not getting to a toilet in time. Holly, Fiona, Chelsea, and Alice found this very limiting. Jessy felt that “everything seems to be organised around toilet breaks”. The feeling of being restricted by planning around and being nearby a toilet is sometimes called ‘the urinary leash’.

Freia fears losing control of her bladder when she is with others and away from home, and it stops her visiting family.

Planning around toilets was a way for some people to try to reduce the risk of having an accident, or their fears about it happening. For Kerry, it was important to empty her bowels before going out and she worried if she hadn’t been able to.

Having to “always be thinking where’s the next toilet”, as Janet said, or how long before symptoms like heaviness and pain would get too much, impacted on everyday things like going food shopping and on special events like holidays.

Chelsea talks about difficulties with toilet access and waiting, for example, for a medical appointment or for a Covid-19 vaccine.

Alice and Minnie both had RADAR keys (sometimes known as National Key Scheme or NKS keys) which gives them access to locked public toilets. However, Minnie, who was interviewed during pandemic restrictions, has found that “there are very few doors to put it in.” Sharon and Pauline, who have prolapse, bought special trolleys to help them carry groceries, and Pauline’s includes a seat so she can sit and rest if she needs to.

For those with UTI, another factor that took up a lot of energy planning and thinking about was the unpredictability about when a new episode or flare-up of symptoms might happen. Anita described UTI as “a sword of Damocles hanging over me”.

Holly describes the uncertainty of UTI symptoms, which makes it difficult to plan ahead.

Giving up or no longer enjoying activities

There were some activities that people had stopped doing, or that they did less often, because of their urogynaecological symptoms or for fear that they might make their conditions worse. Sharon described there being “a grief process” for some activities she can no longer manage.

Exercise was often impacted. For the people we talked to, this included walking, running, skiing, and horse riding. Some, like Jeannie, found that they could do these activities only for short periods of time before symptoms became too troublesome or they needed to go to the toilet.

Finding types of exercise that are comfortable and deemed ‘safe’ was important for Catherine, Kezia, and Kerry. Leah is now glad to be well enough that she can sometimes swim again, even though she has to manage it carefully: “I flare, I have to stop, I rest”.

Mary X stopped jogging but finds cycling is okay and thinks that sitting on a saddle stops her from having urinary leaks.

Kerry has stopped some types of exercise activities, but she continues with others and has found using Nordic walking sticks helpful at times.

The change from being very active to struggling or worrying about activities was upsetting and frustrating. Elly says that being unable to exercise left her feeling like “a bit of a couch potato”. Jessy and Liz wore long tops and pads when they exercised, to hide any leaks that might otherwise show. Liz and Fiona eventually stopped doing sports they had previously enjoyed because of their urogynaecological symptoms in combination with other health issues.

For Rose, Catherine, and Iris, being told by healthcare professionals to stop running was a huge loss. All three women are now working on running again, and finding ways to feel more confident and safer about the impacts or risks. Rose expects she will eventually need prolapse repair surgery and will stop running then, so “it’s almost like I’m running while I still can”. Pauline felt it was important not to let prolapse stop you from exercising for the benefit of wider health, saying that “you must try and keep your life normal”.

Running is important to Catherine so being told to stop was devastating.

Iris appreciates that her personal trainer recognised how important running is to her, and has helped her find ways to get back to it.

Some people we talked to avoided seeing friends and socialising, or worried when they did go. Minnie was concerned about having an accident: “I don’t want to go and make a mess of somebody’s armchair”. Elly says she has lost the “joy” of going out. Megan doesn’t like to be around other people when in pain, and so sometimes isolates herself.

This could affect special events too. Mehar has missed out on friends’ birthdays. Helen finds going out for dinner stressful as she avoids menu items with acidic or spicy foods which might irritate her bladder or cause UTI flare ups. Eve recalled being “so mortified” when she had a leak on the dancefloor at a friend’s wedding: “I just felt really sad that I just can’t just have a couple of Proseccos and go on the dance floor”.

Having to cancel or go home early from a social event left some people feeling deflated and lonely. Holly and Megan said they often made excuses to avoid going out of fear that they would be unwell; the unpredictability of their bladder pain made it difficult to plan ahead and accept social invitations. Mehar and Holly thought it was hard for their friends to understand how their urogynaecological problems affected them.

Since having problems with UTIs, Megan finds planning ahead is difficult. She worries about being in pain and the impact on social events, explaining that “you just don’t want to spoil it for other people.”

The restrictions on socialising during the Covid-19 pandemic had some upsides for a few people we spoke to. For Elizabeth and Rosie, lockdowns had reduced their need to make excuses or worry about going out. For Alice, working from home in the pandemic gave her more time to think about her health and what she hoped to change.

But for Minnie, being unable to get her bladder Botox treatment and her supply of incontinence pads being stopped during the pandemic meant that her urinary incontinence affects her more than ever before. She feared what would happen if she tried to leave the house after pandemic restrictions lifted: “I’m not going to be able to go anywhere… I’m stuck. Really stuck”.

Sometimes hobbies and activities for fun or relaxation were given up, or became a source of worry and stress. Jeannie and Rowan wouldn’t go camping or to festivals; as Jeannie said, “I’m just really worried about the loo queues in the morning”. Holly has stopped having singing lessons.

Jeannie likes to be out in nature. She can walk for a few miles before her prolapse becomes too uncomfortable. She enjoys gardening too, but has to be careful.

Travel and holidays were also impacted, including worry about getting to the toilet in time on trains, coaches and planes, and being able to take treatments and catheters in luggage. Whilst on holiday, urogynaecological symptoms could impact on what people felt comfortable doing. Jessy avoids going in water and worries about her pad showing when she wears a bikini. Elizabeth doesn’t like being “the one who walks down to the beach and walks straight back … because I know that I’ll need the loo within an hour”. Jenny mentioned the difficulties of getting hold of antibiotics while abroad.

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.

Refusing to let symptoms stop activities

Jenni, Phoebe and Jo said they have tried to adopt a mind-set of not ‘allowing’ their conditions to limit them in their activities. For them, leaking some wee occasionally was a small price to pay to enjoy themselves and live as they wanted – rather than missing out. Jenni explained, “I’m not going to hide in a corner and not do something, I’m just going to make sure I have a thicker protection and several to change into”. Phoebe felt it was a “very old” and “unnecessary” joke that mums can’t go on trampolines: “I don’t really believe that there’s activities you could stop doing because you have some of pelvic floor dysfunction”.

Jo doesn’t let prolapse and urinary incontinence stop her enjoying time with her kids. If she has an accident whilst on the trampoline, she gets changed and carries on.

Sharon, and others, recognised that the right balance could be hard to find – and that not ‘letting’ symptoms stop or worry you was easier said than done.

Sharon thinks it’s important to not rush or pressure yourself into doing anything you’re not comfortable with. This doesn’t mean that you have given up forever, instead it’s about saying “not right now”.

Not everyone felt their urogynaecological conditions had big impacts on their quality of life. Sue X said that her urinary incontinence “doesn’t stop me doing anything”. A few people, like Jacqueline, who had prolapse, said that it did not affect their everyday lives much now that they have found treatments that work. Rosie found there were fewer impacts on her life when her stress incontinence symptoms improved with effective treatment and when she became more knowledgeable about how to prevent leaks. You can read more here about managing through lifestyle changesmedicationspessariesphysiotherapy, and surgeries.

Rosie is still aware of her urinary incontinence and chooses particular clothes for exercise, but things have improved overall and it has less impact on her.