Work and money with urogynaecological conditions

Leaving employment, changing jobs, reducing hours, or going on long-term sick leave could all have major financial impacts. There could also be other costs related to urogynaecological conditions.

This section covers:

  • Leaving paid work or taking sick leave
  • The challenges of particular jobs and work settings
  • Telling employers and work colleagues
  • Impacts on money

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).

Leaving paid work or taking sick leave

Urogynaecological symptoms could have an impact on work life and money. Struggling to work because of symptoms was upsetting and demoralising, especially for people like Helen, Megan, and Jan, whose jobs were an important part of their identities.

Jan loved being a teacher. She’s retired now and wants to go back as a supply teacher, but worry about toilet access is holding her back.

I’m still a primary school teacher that, although I’ve retired, I have gone back into primary teaching as a supply and I actually registered last a year ago and I’ve still not started to teach in a primary school because of my anxiety over the toilet issue and so they ring me up regularly, “Are you ready to work yet?” and I’m just in a dilemma. The time I drove to a school, and I didn’t know where the toilet was, and I’ve got to sit in the classroom with lots of children and then I’m not sure how long before I can get a break. It has totally stopped me from continuing work as a teacher.

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A few people we talked to, like Holly and Mehar, who both had problems with urinary tract infection (UTI) and bladder pain symptoms, had needed to leave work. Sophie, Julie, and Fran have been unable to work since having mesh complications. Katy worried that she might lose her job if her manager knew she was “constantly struggling”. Julie had experienced employers who weren’t sympathetic about her needing to take sick leave and eventually had to give up work.

Leah, Laura, and Megan, who have problems with UTIs, have taken long-term sick leave with a view to returning to work. Likewise, Jane has taken several short periods of sick leave before. Holly and Laura described feeling guilty about ‘letting down’ their colleagues when they couldn’t do their jobs.

Megan is a nurse currently on a “career break”, but she hopes to return to work soon. She appreciated that her manager changed her duties and encouraged her to take care of herself.

Oh yeah like ever, ever since it really started, like she used to like make sure that I was having enough to drink. I could go and have breaks when I needed them, because obviously it’s very hard, like nursing, like finding time to go to the toilet and stuff, and your breaks, cos you’re always so busy, and on your feet all day. And obviously as time went on, it was starting to get harder for us to be on me feet, so she used to put us in different areas of the department which kind of made it a bit easier for us. So if I was like checking in patients or in recovery, cos you can sit down for a little bit while you’re looking after patients and things, so I kind of like alternated what I’d done and things. Some, some of the procedures I couldn’t do anymore cos it involved wearing a lead apron all day, and standing in a procedure room, so she’s kept us out of that room for about a couple of years now, cos I couldn’t stand with the apron on and stuff. But she’s always there if I need to talk to anyone, and it’s just been really helpful. Everyone has at work.
 

 

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Others felt unable to take leave, or felt it was not right for them. Jo explained: “I’m not a shirker, I enjoy my job, and you know, work, my job is part of who I am. So I wanted to go to work, and you know yes, I could have been signed off but that to me just wasn’t the answer”. Clare, who struggled to sleep because of her urinary symptoms, had to reduce her hours but didn’t stop work completely. Pauline had to reduce her hours and take on lighter duties because of prolapse, but she knew she needed treatment quickly because she couldn’t risk losing her job and income: “my life was geared around working and trying to pay rent and pay for everything. That was my life”.

Emma rarely takes any sick leave from work and tries to “soldier on”, but she thinks there have been times when she has gone back to work too soon.

And I suppose with kind of staying off work when you’re feeling really unwell with it and you need to kind of to and fro to the toilet all the time, you can definitely justify and I absolutely couldn’t be at work, but then once you start to recover a bit, you know, in the next day or so then there’s maybe this element of kind of guilt, you know, that maybe I could be at work but you kind of know that your bladder’s still a bit unstable sort of, you know, as such and that’s I suppose quite difficult because I mean I certainly know I’ve been off work, the impact of that, all the kind of, you know, the patient appointments that need to be changed.
 
And I probably have gone back, I mean how many times that would have been off with it but it did happen a couple of times that I’ve gone back a bit, you know, maybe been off for a day or so and I’ve thought I really should get back to work and then when I’ve been at work I’ve sort of thought this isn’t, this isn’t really a good idea, you know, it’s, because I’ve kind of known that I wasn’t right I was, I was kind of running the risk of, just a total embarrassment, so I mean that’s, I suppose that’s a really sort of stressful, you know, side of it and it maybe doesn’t look as if there’s anything wrong with you either, you sort of look, you look okay sort of thing but it’s yourself that, you might just have a sudden, a turn you know, uncontrollable urge to urinate and it might just happen there and then kind of thing.

 

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The challenges of particular jobs and work settings

Specific requirements of a particular job could also be a problem. This includes those in very physical jobs, like Elly and Jeannie, who both have a prolapse and have been advised not to do heavy lifting. Iris, Chelsea, Freia, and Rowan, were in teaching and customer facing occupations, and were concerned about restrictions on when they could stop to take toilet breaks. Elizabeth retrained and changed her job, which had involved a lot of driving and customer contact, because of the impacts of her bladder problems.

Freia has worked in jobs where she is entitled to only a short break each shift, which is not enough time for a toilet break amongst everything else.

Now this is a, this is law so you can check into that, so this they’re going by the law so if you work five hours, yeah, you get a break that’s quarter of an hour, that’s all and that’s from the time you log off your, your till getting through to an accessible bathroom, you might need a cup of tea or something and then get back to your till, that has, that time all has to be within fifteen. Now for me you had to go upstairs as well and I’m thinking, ‘Oh’ my hip was starting to be sore then, so I had to get to the loo, get upstairs, get yourself drink of water, get back and hope that no customer stops you on the way.

 

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While working as a teacher, Sue X sometimes found it troublesome to need to use the toilet often.

I was known, when I was teaching I was known as the person who knew, if you went on a residential trip, I knew where all the loos were. Which is useful for children, but just as much for me. So, you know and when you’re teaching you cannot leave a class of 30 children to keep going to the loo, which I often had to do, you know, so it’s, it’s silly things like that, I mean I don’t think it stopped me from doing anything, but I was aware that I seemed to, needed to go far more than most people.

 

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Iris talked to her employer about needing to take toilet breaks and she was able to continue doing her job. When diagnosed with prolapse, Sharon recalls being asked what she did for work and that she needed to limit how much standing and walking she did, which was “quite a blow”. In meetings, she has explained to her colleagues why she might need to leave to use the toilet and that she may not be able to take part in a ‘walking meeting’.

Elly’s job involves heavy lifting. Her GP will only write short-term light duties notes, and so her approach has been to “just crack on”. Her colleagues sometimes make comments about how often she goes to the toilet.

My job involves quite a lot of heavy lifting. When you say you work in a supermarket, most people think you just sit on a till for the majority of the day. That’s not the case where I work. We’re quite a target driven environment. We have to work to a speed and get things done so it does involve a lot of pulling pallets along with jacks, lifting heavy trays and crates up, which I found very difficult to do and I shouldn’t really be doing and it’s very uncomfortable. If I am on my feet all day, it makes my symptoms a lot worse but that actually also comes up to the fact of my GP has refused to write me a long term light duties note. So I have to go back every four weeks to have a light duties note from the GP but it’s incredibly difficult to one, get an appointment at the GP. Speak to the GP, which in turn has left me thinking, do you know what? I’ll just crack on and get on with it. I mean with the fact that I go to the toilet a lot at work, it’s kind of become a little long running joke like, “Ooh, Ellie’s off to the toilet again.” “Oh, there she goes again.” Which I’m okay with because I feel like at least it normalises it a bit. Like it’s a joke that, “Oh there she goes. Another loo trip.” I don’t feel like there’s any malice in us making a joke about it. But it is very difficult with your workplace to discuss those kind of, it’s talking about your woman’s areas that you wouldn’t really discuss with many people normally let along your male bosses. It makes it very difficult to have that open conversation.

 

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The work setting was important. María works in an office setting but often feels uncomfortable and worries that her colleagues can smell when she has had a urinary leak. Losing bladder control at work could be particularly embarrassing, and Sarah worried about this too. Some said that wearing dark coloured clothing and having a spare set of clothes and incontinence pads at work was a way of managing this. For those who knew they might need to rush to a toilet quickly, wearing a skirt at work, rather than trousers with fiddly buttons and zips, could make it easier.

Rebecca, who has problems with UTIs, thinks that working from home is manageable, but it might be different if she was in a job where she was on her feet all day. María and Leah also appreciated being able to work from home during the pandemic. Melanie works outside and worries about finding a toilet but thinks it is easier to manage her symptoms than if she was working in an office.

Sarah was in “total agony” when she had a UTI flare up while taking her students on a field trip.

I mean you just, you just make sure that you take, I’ve got my antibiotics with me all the time, I mean I have them in my handbag and I have them in my bag that I take when I go away another set, so I’ve got two sets, just so that I know I’ve always got them and I know immediately if it’s starting to come and, and if I can take them quickly I’m fine, if it goes on, once I was on a field course with some kids, because I’ve obviously been a teacher I was with a load of sixth formers and I didn’t have my, any tablets with me and I was away for seven days and it started about day three, well by day seven I was in total agony it was really, really bad and you couldn’t look after the kids, I had to but it was just unbelievably difficult, and you can’t, don’t feel you can talk to people, because they were male staff so you don’t want to say well actually, you know I can’t, can’t be doing this I just want to go to bed, you can’t do that when you’ve 20, you know, 16/17 year olds rampaging about. So that, that wasn’t good.
 

 

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Telling employers and work colleagues

People made different decisions about telling employers and colleagues about their urogynaecological conditions. Rowan, who works with an all woman management team, felt that her colleagues understood and recalled one person in particular who she “bonded [with] a bit on that”.

Anita has called in sick for UTI before but finds that male colleagues are unsupportive: “they don’t understand, they think it’s a trivial matter”. Katy, who is a firefighter, said she could never talk about her urinary incontinence in her male-dominated work environment. Jeannie, who also has a bad back, found this provided an easier explanation for why she had to be careful with lifting. Elly talked only briefly to her male management team about her condition. Others were more open; to raise awareness of the condition, Leah has a signature on her emails that says she has chronic UTI.

Parminder, who has urinary incontinence, is looking to change her job. Her employer was not very supportive about another gynaecological condition.

So I said to him [my employer], “It’s looking it, like the stage four for endometriosis,” and literally he said to me, “Oh well you know it’s not stage four cancer.” Is what he said.
 
And I just thought that was really insensitive comment to say, so obviously not for one second did I assume it was cancer, and I’ve only spoke, it’s not as if I had a lengthy conversation with him about it, I literally had a two-minute conversation with him about this and I just felt like he just constantly belittles my health problems, and so I’m looking to apply for jobs elsewhere as well because yeah, I’m just, and also I think it’s a bit of a problem having a small, kind of when you work for a smaller company it’s not really, it’s all, everything is done in house and it’s not a proper HR system, so I just feel like also when I do change jobs I want to be looking for a much bigger sort of more of a corporate environment, because I actually feel like it actually would be safer for me because comments like that you could then refer back to, let HR know about it. And it’s just like I can’t really let anyone know, you know, so, cos there’s no system for like behaving in that way.
 

 

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There were some examples of helpful adjustments in the workplace. Leah uses a standing desk for portions of her working day. Catherine still teaches fitness classes but makes adaptions. Sharon encourages others to think about what might help them at work, such as having a locker for spare clothes and incontinence pads.

Impacts on money

Leaving employment, changing jobs, or going on long-term sick leave could all have major financial impacts. Sian was unable to work after complications from mesh surgery; her partner then had a major health event, so they lost both incomes as well as their careers, and have since been on benefits. She also has the cost of carers to consider. Leah and Laura felt fortunate that they could manage for a few months without pay when they needed to take medical leave, but highlighted that many others are not in this financial situation.

Because of problems with her bladder and UTIs, Elizabeth made changes to her work situation – like going part-time, changing jobs, and taking retirement early – which has impacted her financially.

Well there was the salary impact, impact. I decided to take my pension early, so at a much-reduced rate. So I took it when I was 55. Had I been able to work a bit longer or to manage without taking it, it would have accrued more, so I probably lost about £5,000 a year or-, by taking it early. So had I left it till I was 60 I would have definitely been getting £5,000 more just by the very nature of how it works with the investments. I mean I couldn’t have done it had my husband not had a good job, I wouldn’t have been able to give up work. I suppose I would have had to have thrown the towel in and gone on long term sick, and applied for some kind of I don’t know, payment from the state.

 

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Julie, who is mesh injured, has had difficulty providing a home for herself and her daughter as a result of being unable to work and separating from her husband.

So, we had to sell, I was gonna be homeless with my daughter. So, we went into private rented. And I was there for five years then the landlord was selling up. Gonna be homeless again. And I was on the council waiting list and then I got the place where I am now. So, it has been quite tough, notwithstanding I’ve got my daughter as well, obviously and her my mum and dad split up and then she loses the only home she knows. So, yeah, it has been tough.

 

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In addition, some of the people we talked to highlighted additional costs they had because of their urogynaecological condition(s). This included private healthcare (appointments, treatments, travel and accommodation), including private counselling, and incontinence pads. Resources like books, trying alternative therapies, and buying pessaries or biofeedback devices added up too.

Mehar thinks there is often an assumption that private healthcare patients can easily afford it, but this is not necessarily true. She tries to find ways to reduce costs, such as by getting some tests via the NHS.

I think people will think and I’ve seen it on my like chronic illness community on Instagram I think people think that if you see private doctors, you’re loaded with money but that’s not the case.
 
I didn’t have a choice, it wasn’t a matter of, ‘Can I afford it?’ It was, ‘we have to afford it, one way or the other. We have to pay for it,’ and that’s what, you know, that’s what my parents said, they were like, “if we were to put money first, there’s no way we can afford it but we have to put you first, you know, and we have to, we just have to figure a way around it and we just pay for these things and it has to be done,” and that’s what we did. Just went on from one to the other and I tried to space it out as well, like appointments and tests weren’t happening all at once. It was, I tried to space it out as much as I could to give some time.
 
I also feel like, you know, like because I can’t work and it just makes me feel bad that my parents are having to pay for it when they can’t really afford it because it’s a lot of money, like I don’t think in this day and age anybody can really afford full private care without insurance and without, you know, out of their pocket completely. It’s a lot of money, especially when you’re starting out and you have to have all the tests to figure out where, you know, where you stand and things. Yeah, and I just feel really like I feel bad, you know, that my parents are having to pay for this and I can’t do anything about it but then I did try to, sometimes when my private doctor would give me a list of bloods to do, I would call my GP first and I would say, “What out of this can the NHS do? What do you think I can get done?” and then my GP would, you know, give me some tests on the NHS which would help because bloods are really expensive privately.
 

 

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Laura says private treatment for UTIs is “hugely prohibitive”. The costs include travel, medication as well as the appointments themselves.

From a sort of medication point of view and appointments and that side of things, it’s very expensive and I think it’s hugely prohibited to people who are not on a very good salary. You know, you’ve got the travel from wherever you are to come to these, these clinics, these specialists who’re typically who’re in [City]. And you, the medication I say roughly was £100+, plus you’re taking supplements, you know, as well. And then you’ve got the appointments which are, I mean they vary, but they’re in the region of £250 to £350 to see a, you know, for each appointment. So, you know, when you sort of, okay, you’ve not, you might not have an appointment every month, but you’re probably looking at easily a few hundred pounds if not more every month for medication and appointments and travel, maybe three or four hundred pounds a month. It’s a huge, a huge cost.

 

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Some, like Amy, anticipated that the cost of private healthcare would be ongoing: “I feel like I have no financial security anymore”. You can read more here about people’s expectations for the future and their approaches to treatment decision-making.