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.

Yeah, at the very worst of it, I basically couldn’t work, couldn’t look after my kids. I was probably in bed for at least half a day, every single day and that went on for quite a few months. I’m-, you know, I wasn’t really socialising or doing anything at all because I was just in so much pain. I mean, as things have improved slowly, it’s been a sort of gradual build up, really. I think about six months after it started I braved going back to some of my exercise and I was lucky there was some really supportive people where I go to the gym. So, they’ve really helped me. But then, you know, even then you never really knew if you would go back for a week and then you’d be off for weeks again. So, you know, I think it’s really only been in the last month maybe that I actually feel reasonably confident that I can go and do my normal exercise and I really, really enjoy that so that’s fantastic. But, I still can’t do anything with any high impact. I mean, I used to run loads. I used to cycle loads. I can’t do any of that.

 

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

I think to begin with, when it wasn’t really managed, it was much harder than it is now. So, I wouldn't say that it stopped me doing things or it stopped me seeing my friends or anything like that. But it would, you know, if I was going out for a walk, for example, in the countryside, I would have to know there was somewhere that I could go to the toilet within an hour. So, I don’t, you know, I’m from like a place where it’s not badly seen to go in a bush [laughs]. I’m quite comfortable doing that. But, you know, that, that sort of thing would have to be taken into consideration because I knew that I couldn't hold it for so many minutes, some people can’t hold it for more than an hour full stop and even now I don’t hold it for much longer than that. But it, it would sort of it would be at the top of my list of things to consider.

 

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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.

Basically, you lose a lot, for me, I lost a lot of weight because I just couldn’t eat. I couldn’t, because it affects, because I’m in pain anyway it was just another additional pain on top of that so I was quite bedridden at times couldn’t go to work. Luckily, my children are all grown up or older so they would do the housework. I couldn’t do housework, I couldn’t do, you know, even change my bed, you know, needed help sort of to the bathroom all those types of things, it completely affected my life. It took all my strength basically I was sort of, you would think I would have a real chronic illness and was recovering from it but all it was a water infection. I don’t think people realise how serious they can become if you don’t get the right treatment.

 

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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.

I had no quality of life. I was in bed, bed or on the toilet. I’d gone from being a very active, you know, I’d get up very early. I’d be out cycling. I’d be working. I’d be seeing friends, well limited with Covid [laughs]. But, you know, I, I had a normal social life to all intents and purposes. And it, it suddenly went overnight because I couldn’t do anything. I couldn’t even walk like half an hour because it was just- and I couldn’t have conversations with people because my brain was constantly telling me that I- or my body was constantly telling me that I needed to go for a wee. And it becomes, you become so insular and so in your head because you can’t, you just can’t focus. Like if you’re desperate for a wee, that’s all you can focus on. You can’t focus on the conversation or, you know, even my poor partner probably heard more about my bladder in within a week than she’s probably ever going to have to hear about for the rest of her life from anybody else. You know, it’s, you can’t talk about anything else. You become very selfish and very sort of within your own head.

 

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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.

Going to the loo, I found that the, the bladder issues were in a way simpler at night, sometimes I could get back to sleep straight way but at other times I would lie awake because then I’d start thinking I would get up go to the loo and then I’d think about other things that I was anxious about. So I would have a time between, quite often between 4 and 6 o’clock in the morning and then as a result I’d be getting up later because I’d be going back to sleep and waking up. So yes, broken sleep, not as bad as daytime I would say. Because when I wasn’t working, I was able to sleep in more.

 

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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.

It’s not realistic to say to women, “Don’t lift anything heavy, don’t bend.” If you are a younger person or even an older person responsible for looking after people – grandparents, family members, partners, you’re, you’re in, you know, you have a form of employment that is linked to care, that’s not good enough. And I think that was really hard because you then feel redundant, you’re kind of like ‘How do I, you know, you know, how do I look after my kids? How do I physically do that?’ And I was very fortunate that I had, you know, an extended support network that could, you know, really roll their sleeves up and help in the kind of run up to surgery, to not make things worse and then were really critically post-surgery, you know, and even going to collect my children from nursery, I can’t do that because I can’t lift my son from the carer and pop him in the car which is such a simple 30 second little job but that could really risk all of the good work that’s been done.
 
With my little girl, it’s different, she’s three. She climbs up guided and she wants to do it all herself anyway because she’s Miss Independent. But with my son, it’s a very different situation and so that’s hard, you know, you drop something and you think ‘Oh I cant-,’ you know. And I never thought I’d want to do housework, I never in a million years thought ‘Oh I wish I could just load that dishwasher or get that washing out’, and not be, “Could you just do this, could you just do that?”
 

 

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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.

To be told immediately, “Well you need to stop breastfeeding, and you can’t pick up, don’t pick up your son,” that you can’t pick him up. “Or sit with him, play with him on your lap.” And you can’t carry anything either, like, in the end I had to speak to work because I can’t pick up anything, so it’s been, and not being able to really, or even to go to, if I go into the shops I have to really seriously think about what like, if I want to take a bottle of water in my bag, that means I can’t carry something else. You know, it’s really, there’s a lot of consideration. And it’s, and I can’t get like, I can’t really run around. I can’t jump up and down. You know, I can’t go crazy, I can’t do a lot of things. I can’t like and how I see my future of being, I was very active, and I still, I do a lot of walking now, but I can’t be the ‘run around, busy, active, carrying loads of stuff, playing loads of games person that I was, because it’s just, the long-term consequences of a small trip up are too big.
 

 

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

Yeah, so it’s been quite, initially it was quite limiting cause as I said like I googled and I read like the NHS website and it’s like don’t lift heavy, don’t do any high impact exercise. So, my little boy was like, maybe two, nearly three and I just stopped picking him up. I you know like I read stories about people that had had surgery and they were told not to lift a kettle. I would lift a frying pan. I remember one day saying to my husband like, it’s got worse. It’s got worse. I stopped like doing household stuff. I wouldn't take the bins out. I wouldn't lift anything. I stopped running and so I would just, I just basically sat on my sofa and didn't move, really.
 
So, I went from a very physically active person who would not think twice about kind of you know, like lifting her children or lifting a bag of shopping or to being somebody who would kind of google everything. Who would be kind of checking the weight of things. Who would be thinking like a frying pan was too heavy to lift or I shouldn’t lift a kettle or anything like tipping water out of the saucepan so that it was above a certain limit. Should lift the milk out of the fridge, was that too heavy?

 

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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.

I fret getting up off a bus seat it’s affect-, I mean there’s me fretting I’m in somebody’s house about and I know different settees, it’s like my daughter, the flat she’s in, the settee that’s there, I think ‘Oh god I can’t get out of it.’ I can’t get out because it’s so painful but I’m also going to maybe wet myself just with the exertion so ‘Is that the hip again?’ you know, this is all my-, [sighs]. It’s really difficult to say to people, I’ll go back to that one, why you can’t go away with them that you finally have to say, the only, the only thing my sister wanted to take, my sister, I know she cares a lot about me and she wanted to take, wanted me to go and stay with her for a month and I thought, ‘Oh my God,’ I thought, so I thought, ‘God I couldn’t even handle the incontinence thing on its own and I thought ‘Well I can’t’ because she’s so-, she’s got a pristine house and everything, how can I say that “You’ll need to wash my, I’ll need to wash the sheets, you know, twice a night”?

 

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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.

There’s been times when the kids were small when I’ve taken them for appointments and things and you’re left waiting and obviously if I’m turning up for an appointment for something I need the appointment to be on time because if I’ve sat there for a bit and then I need the toilet and I’m waiting to take the kids to a doctor’s appointment it’s, you know, what do I do, I can’t suddenly dash to the toilet while we’re waiting to be called.
 
The other challenge I’ve had with my bladder in the last year is, of course, during the Covid jab, I had real difficulty trying somewhere that I could guarantee there was a toilet to go to get my Covid jab. It wasn’t something that on any of the stuff where you were looking for, you know, tick a box for this, this and this and facilities you would like at the place, nothing which said I need to go where there’s a toilet because I have a medical condition.

 

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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.

It’s just so unpredictable. You don’t know from, on a day-to-day basis how you’re going to be and how you wake up feeling in the morning isn’t necessarily indicative of the sort of day you’re going to have. So, I might wake up and think, ‘Oh I’m having a better day today,’ and then by lunchtime I’m crippled. Or I might wake up in the morning and think, ‘Oh I’ve had a really bad night, and I’m in a lot of pain,” and then all of a sudden it seems to ease and then I feel almost normal. It’s just really difficult to predict.

 

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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.

The only this is, I suppose it stopped me jogging because I found that if I jogged then I would wet myself. So that, not a big deal, I wasn’t that keen on jogging in the first place. And all it does is mess up your knees anyway, doesn’t it? So yeah, I mean running I suppose, on, on a full bladder is a bit of problem sometimes. But then it doesn’t really matter because if I’m going to do, run, like when I run on my running machine, then I just empty my bladder first and I suppose it makes cycling easier ‘cos you know you’re okay on a bike. It sort of seals it off as long as you sit on the saddle fairly tightly.

 

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

I did, I was using a rebounder, I don’t know if you know what a rebounder is, so like a little trampoline that you exercise on because that’s very joint friendly and it’s very good for the lymph system and I’ve had to stop that completely which I’m sad about but again I can’t risk making things worse so yeah. But everything else, we walk a lot, it hasn’t stopped me walking. I think very early on I was I used the Nordic walking sticks sometimes and they, they provided quite a lot of support because they lift you through the core when you walk that push with sticks and again I’ve pretty well stopped that but I know they’re there if I have a bad day and I want to go for a walk, I can use the sticks. We cycle a lot; the cycling seems to help. Swimming is fine. So, there’s plenty of exercise that I can do.

 

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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.

So I’m a runner and I teach quite a lot of fitness classes and the first physio was like, “You’ve got to stop running,” but to take that away from me is massive and I don’t think she realised like the impact that had on my life because all of a sudden I can’t do what I love and I don’t know what else to do to kind of you know, for fitness so again I did put on weight during and that kind of worried me as well because of taking away something that is my release to life I suppose. And I take classes so I had to reduce my and I understand that I had reduce my weight classes as well. I didn’t stop teaching because I don’t, financially, I needed to. Obviously, I just made adaptations and then obviously people in class were asking and I was quite, I didn’t really, initially I didn’t say, I just said, “Oh I’ve got a bad back, I’ve just got to be careful. I’m having physio” because again you don’t really know, no-one really speaks about it as though all of a sudden it’s very kind of, puts in a little bit of a different world I suppose.
 

 

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

It was, “Okay, well you can run and maybe you will like have a little accident sometimes and maybe you will need to do a few extra exercises and stretches when you finish. If running helps you de-stress then and you’re comfortable with like having the occasional leak that’s aligned to it, then why not run?” But, taking away that running and taking away that, the continence nurse had said to me that basically I should never run again. Taking that away didn't just take away the sort of oh, I can run, it also took away the, it took away the idea of the independence that running gives me. And I remember that being very, very difficult to deal with. I worked with a personal trainer because they were offering like reduced sessions. He was absolutely amazing. Like I was very up front with him and said, “I’ve got this and I would really like to do some more running. But I would really like you to help me do it in a way that’s sort of minimises leaks, basically.” And he was brilliant like he went away and did a pile of research and he like he really helped me kind of get my stride right and it wasn’t really until I worked with the, the physiotherapist more recently that I feel like I’ve got more full control over it. But he sort of gave me that back and gave me this idea of running back and the confidence that came with that was amazing because it wasn’t this you know, “You can’t run ever again.” It was, “Okay, well you can run and maybe you will like have a little accident sometimes and maybe you will need to do a few extra exercises and stretches when you finish.” But something the physiotherapist said to me was, well, if running helps you de-stress then and you know, you’re comfortable with like having the occasional leak that’s lined to it, then why not run, you know.

 

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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.”

So I just kind of, I never plan anything, so each day I just see how I am to see what I can do. But the furthest I do is probably go like around the shop, for food shopping or just for like a little shop. That’s all really. Or go ‘round to see like family and just sit in their house and stuff. But a lot of the time I just stay at home, but like I fill the week, my partner’s at work so I do try and go down to me parents’ house, so I’m not on me own all day, and they come and see me and stuff, so I’m not sitting around all day.
 
So I try and do that every day when I can, but sometimes when I’m there the pain gets so bad that I get stuck there. So sometimes I can’t get back home ‘cos I can’t get in the car. So I just like sometimes get stuck there for like five days to a week, and one time it was like two months I was there, ‘cos I just really couldn’t get out of the house at all, ‘cos it went into like to a horrendous flare up. So I just couldn’t do anything at all. I’m scared to go out for meals or anything, I don’t go out for meals or nothing like that now because I don’t know what the chair situation is like or anything like that, and I, it’s silly but when you go out with people, like if you went out for someone’s birthday or something like that, or, you just don’t want to spoil it for other people because you think like if it starts, like I’m going to be in pain and then like obviously someone’ll come with us when I leave and stuff, and I don’t want to like spoil their day and stuff, so I kind of just say “Oh I’ll like not really come today.”
 

 

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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.

I’ve never been like a really sporty person but I do like going for walks in the countryside and birdwatching and that kind of thing, but I can’t walk now as far as I used to be able, maybe I can do two or three miles, no, three or four miles comfortably. Anything more than that and it starts to get quite uncomfortable and I feel like I need to, you know at least have a long rest or lie down for a bit, or something like that. So it’s changed what I’m able to do and what I’m able to enjoy.
 
Things like gardening I find quite difficult, which is really frustrating ‘cos I love gardening but every time I…you know like at times when I feel that I’ve made things worse it’s always been when I’ve just been trying to move a flowerpot or something like that, so I have to be really, really careful with anything that involves any lifting.

 

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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.

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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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.

And the impact, I just, I just got on with it, I just got on with it. But even at the start, before I had children, with, you know before I had the first surgery, it would just become something you laughed about. Oh, oh I’ve got to go and change, and actually I did you know, having four kids, I’ve been on the trampoline, I’ve, I’ve done all the things, you know, active, “Oh God, I’ve got to go in, I’ve wet myself.” Do you know what I mean? And I’d just, go, or, or if I, if I was able to, that’s if I was at home. You know so you just go and change. It just become the norm. I’ve even been known to actually, to take my underwear off, and just put my trousers back on.

 

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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”.

So there is that and then as you kind of get better there’s a lot of people saying, you know family might say, “of course, of course you can play tennis or do this activity and you just have to know your boundaries and just say, you know, “Maybe in future but right now I don’t feel, like I’m not gonna do that right now but thanks,” [laughs]. You know, because people I think with any kind of, they don’t really realise it’s a, it’s a kind of a chronic condition you’ll have if you’re not a candidate for surgery. It’s a condition you have to be mindful of, it’s a lifestyle, you know, and you can get back to those activities you love but there might be times when you’re doing rehab and recovery and getting stronger and you don’t wanna get back to things you used to do right now and you probably do have to just keep telling people, “Yeah maybe next season I’ll get back to that but not right now.”

 

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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 changes, medications, pessaries, physiotherapy, 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.

I’m now in a place that I wouldn’t, you know, to begin with I was kind of like, ‘Oh gosh, like do I, do I-?’ stupid things like if I went for a run, I’d make sure I had black leggings on, you know, like little things like that or if I was going to the gym, I’d make sure I had a long top on in case, you know, there was, you know, in case I did leak or anything and I guess that’s, I do still think about it but not as much if that makes sense. And I guess I’m kind of more aware of, I guess I’m more aware of what I can and can’t do and ways to prevent leakage if it does happen but, as I say, I know that it’s definitely not where it needs to be still. So I’m still kind of working on, on those exercises and making sure that I’m kind of consistent with them. I guess, I mean obviously I’m not in any pain or anything like that anymore so that’s had a huge impact because life has gone back to, you know, how it was before and I think the kind of, the confidence, I think to begin with when you’re not sure, you know, if you cough and what’s gonna happen, you kind of are very aware of where you are and who you’re with and, you know, are you gonna be able to go to a toilet, you know, like that kind of thing. Whereas, I don’t even think about that at all anymore so I guess that’s had a huge impact but I’m also aware that my issues were nowhere near as bad as some peoples are so I guess in a way I was quite lucky with that as well.

 

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