Iris

Age at interview: 32

Brief Outline:

Iris began experiencing urinary and faecal incontinence after a procedure to remove abnormal cells on her cervix. She has found pelvic floor physiotherapy to be “absolutely brilliant” in helping her manage both incontinence and recurrent urinary tract infections (UTIs).

Background:

Iris is working while also pursuing an advanced degree. She enjoys running in her spare time. Iris identifies as bisexual and is currently living with a male partner. Iris is White British. 

Conditions: urinary incontinence, recurrent UTI

More about me...

Iris started experiencing incontinence following a procedure to remove abnormal cells on her cervix in her late 20s. She got an infection after her operation. Once she recovered, Iris noticed her bladder and bowels were leaking slightly. She described the sensation as a “sticky discomfort” and struggled with feeling “ashamed”.

Iris initially met with her GP, who referred her to a local hospital’s incontinence nurse. She was given a device to tighten the pelvic floor through electrical stimulation, which she suspects was “probably not doing anything”. Iris was eager to return to running, an activity that helped her mental health, but was told that she should “never run again”. The nurse gave Iris the impression that her condition was unlikely to improve, leaving her feeling “a bit disillusioned”. Iris was also disappointed that the nurse “outright dismissed” a potential connection between her incontinence and cervical procedure.

Iris sought advice from a personal trainer on getting back to running. The nurse’s guidance to stop running had been “very, very difficult to deal with”, as Iris heavily valued the “independence that running gives”. Iris’s trainer guided her on adjusting her running stride and helped her confidence in her ability to run.

During the Covid-19 lockdown, Iris noticed that her continence was getting worse. She self-referred to a pelvic floor physiotherapist. The physiotherapist examined her and informed Iris that her pelvic floor was hypertonic; this meant that Kegels were ineffective to manage incontinence. Instead, the physiotherapist taught her breathing exercises to relax her pelvic floor and extra exercises to help with running. The physiotherapist also discussed the potential relationship between Iris’s previous sexual trauma, IBS, heavy periods, and polycystic ovaries, which may “all contribute at the same time”. She found her time with the physiotherapist to be “absolutely amazing” and valued how the physiotherapist took the time to explain everything.

After around five years of getting help and learning about her condition, Iris is now “pretty much leak free”. She found exercise and physiotherapy to be the central treatments to making her incontinence manageable. Iris had previously dealt with recurrent UTIs but found that these also cleared up once she had the tools to manage her incontinence. Previously, Iris worried that having a child may make her incontinence worse. While Iris doesn’t see herself having children at this point, she finds comfort in knowing that she would be able to self-refer to her previous physiotherapist for a pregnancy.

Iris has communicated effectively about her incontinence to her partner and in her workplace. She chose to tell her current partner about her incontinence issues early on in the relationship. This helped avoid awkward talks later on, and she feels that “he’s just been absolutely brilliant with it”. At her  workplace, Iris decided that she needed to talk to management about taking more frequent bathroom breaks. Her job sometimes involved long shifts without breaks, but she was able to get more flexibility after being open about her needs.

During her struggles with incontinence, Iris felt disempowered that she wasn’t living “the life that I wanted for myself in my late 20s”. She found that healthcare professionals giving her the proper tools to fix her symptoms was “incredibly powerful”. Iris advises patients that they have the right to seek out healthcare and get a second opinion. She also emphasises that “there are people out there who believe you”, even if they may be difficult to find. In the future, Iris hopes that medical professionals will be more open to filling gaps in their knowledge and supporting patients' agency.

Iris has symptoms of stress urinary incontinence and urgency. She mostly has urine leaks but once had a fuller accidental loss of her toilet functions, which was very distressing for her.

Stress incontinence, it can happen when-, the way I have it in my head is that it’s something that we put extra stress on the bladder, so coughing, sneezing like for example, I’ve got a cold at the moment and if I forget to pull my pelvic floor up before I sneeze then it feels like I might have a little accident. Things like being sick or anything basically that yeah, that would cause an extra, an extra stress to make you weak. That’s how I understand it. Urge I would say, so for example, one of the biggest problems I was having is when I was getting into the house, it’s like my brain knew there was a toilet in the house and I would leak just as I was walking into the front door because it’s kind of like the urge is there or I know for some people it isn’t that they’re not aware they need the toilet. But for me I am aware that I need it, but I can’t always hold it quite as long as I would like to.
 
I was leaking from my bladder, but also I was having small-, and it was never, it was never a lot, it was never like a full wee. I think I’ve only done that once. But it was a small amount from my bladder and sometimes a small amount from my bowel. And the sensation of that is something- [exhales] I don’t really know how to separate the physical and the emotional to be honest on that front because it’s, it’s really hard [laughs]. But it’s, it’s a feeling of sort of sticky discomfort would probably be the best way.

 

Iris noticed stress and urge incontinence started after an operation to remove abnormal cervical tissue and thought they were connected. She explains how she felt when a healthcare professional believed her.

I guess just there are people out there who believe you. It’s just, who believe everything you’re going through. It’s just not always easy to find them.
 
…Do you encounter people that didn't believe you?
 
I think it was more that I’d been dismissed like with the continence nurse saying that my cervix thing had had nothing to do with it. I was like, but I know it did. It’s about how can I be basically fully continent before that and then not after? How can it not be connected? And for ages, I can internalise that and for or if she didn't think it was connected, maybe it’s not. But the moment that I sat down with the physiotherapist and said, this is when it started, she was like, okay and she just, I felt like she believed what I was saying immediately. And in itself, that’s very powerful.

 

Iris finds it difficult to emotionally process her urinary incontinence symptoms as they are so “intimately bound” with other aspects of her life.

And rationally, I know that, okay, I’ve had a little leak. If I’m out the house I’m gonna go home and change my pants and my trousers if I need to and that’s fine. But sort of on a more feelings level it’s I think it’s upsetting.
 
I wouldn't say to somebody else if they’d done that that they should feel ashamed of it. But I’ve, you know, if I have the odd accident now which is rare thankfully, but I do feel ashamed and there’s I don’t know why I feel ashamed because you know, it’s just an accident [laughs]. But I do. And I think that those things are so intimately bound and also because I’m relatively young. I, it’s kind of bound with that well what if I want children and this is happening now. What if I have a child and it gets even worse. And that’s quite hard to sort of unpick from just the simple act of having a bit of a leak if that makes sense.
 

 

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.

 

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.

 

Iris appreciates that her physiotherapist made suggestions but reinforced it was ultimately her choice.

So, yeah, I think, I think openness really and the agency that I felt like I had when I was with the physiotherapist was super important or just to, just for her to say, this is what I think, but actually it’s up to you. That was really good. You know, I can’t even, it gets me a bit emotional talking about it actually because all of, you know, like I went for a walk in the park and I desperately needed to go to the toilet and I like peed in my new shoes and stuff like that that isn’t how I want to live, you know. That’s not the life that I wanted for myself in my late 20s. And for her to just say, “Here, this is what I think you’ve got. This is what we can do to fix it. But you don’t have to because you’re in charge.” There was something incredibly powerful in that.

 

Iris thinks that sometimes women’s health problems are dismissed by healthcare professionals.

But I do think that perhaps being a woman with something that’s down there that you can’t obviously see and treat that perhaps contributes to the difficulties that I’ve had finding the appropriate care for me, which was the physiotherapist in the end. And also, I’ve been treated for things like ear infections at the GP or I cut my foot open once and the way that that seen because it’s like, oh yeah, we can look inside your ear and look, isn’t it infected. I think the experience I’ve had of that kind of problem has been overall quite different to the experience I’ve had of this problem because some GPs have been brilliant and some GPs haven't, but also it’s not, I don’t think it’s just about the GPs, it’s about kind of the continence nurses or physios and [sighs] yeah. I think, I can’t imagine my partner going to the doctors for like for repeated UTIs and like being sighed at in the consultation. I can’t imagine that. And that, you know, that this isn’t based on reality, this is purely me imagining. But, I think, I feel that in the past, not so much anymore, but in the past, there is a certain element of well, women get UTIs, you know, or lots of women have had mental health problems.

 

Although Iris would never judge anyone else for it, she still feels ashamed and upset about leaking.

I see myself as quite a rational, you know, I like to over-think [laughs]. I like to sort of rationalise things to an end. You know, so they can’t be rationalised anymore. And rationally, I know that, okay, I’ve had a little leak. If I’m out the house, I’m gonna go home and change my pants and my trousers if I need to and that’s fine. But sort of on a, on a more feelings level it’s I think it’s upsetting. I wouldn't say to somebody else if they’d done that that they should feel ashamed of it. But I’ve, you know, if I have the odd accident now which is rare thankfully, but I do feel ashamed and there’s, I don’t know why I feel ashamed because you know, it’s just an accident [laughs]. But I do. And I think that those things are so intimately bound and also because I’m relatively young. I, it’s kind of bound with that well what if I want children and this is happening now. What if I have a child and it gets even worse. And that’s, that’s quite hard to sort of unpick from just the simple act of having a bit of a leak if that makes sense.