Alice

Age at interview: 28

Brief Outline:

Alice was recently diagnosed with overactive bladder syndrome and urgency – diagnoses not made sooner because of focus on her other lifelong and complex medical conditions. She says good communication is key between healthcare professionals and patients.

Background:

Alice works part-time in a NHS Trust and is also completing a PhD. She is single and lives with her parents. Her ethnicity is White British.

Conditions: overactive bladder syndrome, urinary urgency

More about me...

Alice was recently diagnosed with overactive bladder syndrome and urgency. She needs to go to the toilet many times a day and throughout the night, which has meant disrupted sleep. Alice also has a craniofacial condition and is registered blind and hearing impaired. She thinks her urogynaecological conditions were not diagnosed before because focus was always on her other lifelong and complex medical conditions. It was during lockdown that Alice decided she wanted medical help with her overactive bladder and urgency. Working from home meant she could focus on her health more and she didn’t want to continue having the same worries after lockdown, “constantly thinking ‘where’s the next toilet?’ or restricting my fluid intake in case I needed to go and there wasn’t anywhere”.

Alice’s GP put in a referral to urogynaecology and, in the meantime, she began taking oxybutynin. This medication worked well, despite dry mouth as a side-effect. However, Alice found there were supply issues with the prescription and recently changed to mirabegron. Alice has a relative who is a nurse and recommended bladder training; through measuring urine input and output, Alice realised that “because of my hearing impairment, as a child …I’d misheard and I thought that you were supposed to drink eight litres of water a day, not six to eight glasses”. Since starting medication and bladder training, Alice has noticed “a big difference to my life” and it’s been “a really good turning point”. She is going to continue on medication for a few months and then have an appointment to discuss how it is going. Alice doesn’t want to take long-term medication, but also doesn’t want to “go back to square one again and having all the symptoms again”.

Following her referral to urogynaecology, Alice had a bladder and kidney ultrasound; she had to drink lots of water before the test and it became a medical emergency when she was retaining urine several days later: “I ended up in my local A&E department, which at the best of times is a pretty traumatic experience for anyone, and then in the middle of a pandemic when you’re shielding, it was even more traumatic”. On another occasion Alice went for a flow test but hadn’t been given any instructions before being separated from her parents whilst being told to drink more water; the clinic was also running late and, given her previous experiences, she was very worried about developing urine retention again.

Alice thinks urinary incontinence and urgency are often associated with older people. She thinks people of working age may not be coming forward for help with conditions like this: “why are we quiet about it? We shouldn’t”. Alice has sometimes had to remind her healthcare professionals that she is “a young woman living an active lifestyle” with “commitments to the university and sport”. For example, Covid-19 restrictions have meant many appointments have been over the phone; being called earlier than the scheduled time or having to wait all day for a GP call back, is not convenient when she’s at work.

Alice encourages urogynaecology healthcare professionals to recognise that patients may have multiple conditions, and to see the patient as a whole. Although Alice doesn’t recommend relying on ‘Doctor Google’, she says that people with complex medical needs may find it helpful to attend medical appointments with both questions and some suggestions for answers based on their own research. She highlights that communication is key: understanding the patients’ needs, conveying information in an accessible way, having two-way dialogue, and ensuring patients know how to get in touch if they’ve got any questions or problems. Her advice to other people affected by overactive bladder and urgency is “ask for help” and persevere until you are listened to.

Alice has always needed to know where the toilets are when out and about. Whilst working from home during the Covid lockdown, she realised she wanted help with her symptoms.

I’ve always had a urogynae condition, but I’ve never been diagnosed until recently. It was only when mid-lockdown last year it got to a point and I thought ‘This is taking over my life’, like every time I went out the front door I’m going to the toilet. I go out and I’m constantly looking for a toilet. So I have been diagnosed with, let me get it right, overactive bladder syndrome and urgency. Which kind of makes sense when, when we look at my symptoms and presentation initially. So, eventually I was going to the toilet probably about 15 times a day, constantly, was waking in the night, and I didn’t really get a decent night’s sleep and that’s the one thing I really like, is my sleep. So it was really frustrating.
 

 

Alice saw her GP after realising during Covid-19 lockdowns that she wanted more “independence” and “control over” her urinary symptoms.

I just wanted more independence, more than anything. I just wanted-, I know that we we’re in the middle of a pandemic, but it was the working from home, and, oh I hate to say it but it was the having the more time on my hands to keep caring for my health and from where, I suppose when I went out to work and whatever and all the rest of it, you know, you don’t always have that time to deal with your own health.
 
I guess working at home it was that, it was a relief in many ways, because I was next to a bathroom or, oh that’s great, I wasn’t worrying. But it was that I couldn’t control, I just, I thought, you know, when we’re let out, and then after lockdown and all the rest of it, I just want to be able to go out for the day or just go out to the shops or whatever, and not be constantly thinking about ‘Where’s the next toilet?’ Or restricting my fluid intake in case I needed to go and there wasn’t anywhere. I’ve not had any accidents but it was that ‘What if?’ Because it’s anxiety inducing. It is. And on top of everything else, it just- ah, if I can have some control over it, I’d rather have some control over it.

 

Alice thinks there are a few reasons why younger people may not seek medical help for urogynaecological symptoms.

You go to some clinics and the waiting room is full of old people. And I think ‘I know there’s younger people going to be affected by these conditions, but where are they? Where are the working age people?’ And it bothers me, it does bother me. Yeah. [laughs] I think a lot of the time incontinence and urogynae related conditions are associated with older populations. And that’s, that is terrible, okay, I guess they are maybe more affected but there are younger people out there, there are people of working age that have got conditions like that as well, and where are they? Why have we-, why are we quiet about it? We shouldn’t.
 
I know people of working age are so caught up in their own lives, getting on with their lives, that they don’t often seek the help they need when they need it. Because they haven’t got the time.

 

Alice attended hospital for a flow test. This was not a good experience, as she hadn’t been given any instructions beforehand, was separated from her parents, and the process was different to what she had expected.

I wasn’t given any instructions beforehand. So I drank a bit more than I’d normally drink in the morning, went to the appointment, appointment was then, you know, basically I’d taken the morning off work. My, one of my parents had also taken the morning off to come with me cos I couldn’t get there by myself. Got there having not been sent any instructions, and clinic was then running like 40 minutes to an hour wait. I was then taken in by a healthcare assistant who was like, “Have you drunk like eight glasses of water this morning yet?” I said, “Well I’m, you know I’m very sorry I haven’t, I haven’t been sent any instructions, I’ve drunk like four glasses of water.”
 
She then put me in a room on my own, away from my parents, and said, “You’re going to be here for an hour and a half at least, you’ve got to sit in this room and drink 8 glasses of water, one after the other. And then we’ll do the test and then you can go.” So obviously at that point, you know, I was really anxious because I’d been separated from my parents who came with me to support me, to be an advocate for me, because of my conditions, and yet they were put in a waiting room at one end of the corridor and I was at the other end of the department by myself and not really knowing what was going on. So I was obviously quite anxious. I physically couldn’t drink 8 glasses of water back-to-back, at that point I really needed a wee. And when you need to go, you need to go. I’d been, already been hanging on and I’d got up at half past seven, and this is now like 11 o’clock in the morning and I hadn’t been for a wee since I got out of bed. So I was pretty desperate, but, and they were having none of it, it was like, “Drink all this water, and then we’ll do the test.”
 
Eventually they came back for me, sent me to wee on a commode effectively, and basically, they made an appointment with the consultant. I was just completely horrified. I suppose, 1) you know, as I say, I hadn’t received any information in advance, and I thought a flow test was to measure the flow. Not like collecting your urine in effectively a bottle underneath a commode.

 

Alice had an ultrasound of her bladder and kidneys. Afterwards, she had some retained urine and was readmitted to hospital, which was frightening as she was shielding at the time.

It was the first time I’d actually been through a bladder and kidney ultrasound, it was something I wasn’t familiar with. So being the sort of person that follows instructions down to a T, I obviously followed the instructions and went for my scan and [afterwards] was unintentionally withholding. So I get a worried phone call from my doctor, my GP, about two days later to say, “Oh, we’re interested-, we’re following up from the, from the specialist because you are all like basically retaining far too much and, you know, this is like a medical emergency”. Then I ended up in my local A&E department, which at the best of times is a pretty traumatic experience for anyone, and then in the middle of a pandemic when you’re shielding, it was even more traumatic. And thankfully my mum was with me and was very, very supportive.
 
I got let out and was no major cause for concern. But again do a scan, did blood tests, monitored me, stuff like that. And then-, and then, yeah, waiting for results and stuff, and discharged me later that evening. I’d been seen by an on-call registrar, but it was a little bit-, how can I put it, surprised about my complex medical conditions and didn’t particularly understand, referred me back to my GP, to then onwards refer me to urogynae because they didn’t really know what to do with me.

 

For Alice, having a diagnosis of overactive bladder and urgency has helped her make sense of her symptoms she’s had for a long time and to access support.

I’ve always had an urogynae condition, but I’ve never been diagnosed until recently. [I’m a] craniofacial patient, which is anything to do with face, the jaw, the head, all that. So I’ve spent like my childhood and adulthood in and out of hospital, all over the country, having various medical procedures to enable me to stay alive. And I’m registered blind and I’ve got a hearing impairment as well. I suppose because of all my other conditions I didn’t really seek any help or support in relation to my urogynae condition. Having diagnoses are important for accessing help and support. I’m learning more and more now I’ve got a diagnosis, that it’s more common that we think.

 

Alice found oxybutynin, a medication for overactive bladder, made a “big difference” as it led to better sleep and overall quality of life.

I started oxybutynin in the new year, and that was life changing. I know it sounds really stupid, but as a woman of 28 it was just within a couple of weeks, I was getting a full night’s sleep, I wasn’t waking up and going to the toilet. In the daytime, I was, my capacity was much, much greater.
 
And okay, it’s not saving my life, but it’s life-changing, it’s making a big difference to my life. And yeah, so they changed it, my consultant changed it, I started that at the end of last week, so I’m just getting used to it.

 

Alice was offered tibial nerve stimulation, but she and her doctor felt that frequent appointments for the treatment wouldn’t be feasible.

So in my recent phone consultation she was like, “Look I, you know, I appreciate that you’re, you’re a younger woman, we wouldn’t want to do things that, you know, could, could have an sort of-, let’s not do things invasively and all the rest of it, if we don’t need to. But we are happy to explore different options.” And that’s why I’m on a different medication at the moment. And she did obviously give me another option of potential treatment, but because of my commitments to the university and sport, she recognised that I’m a young woman living an active lifestyle, and that attending hospital once a week for however many months for treatment was not going to be, realistically at the moment, be an option.
 

 

Alice isn’t sure that it’s safe to take medications for the rest of her life and worries about potential long-term side effects.

My biggest worry is like kidney problems or things like that, and the long-term effects of being on this medication. You know, it’s, it’s great that it’s solved a lot of problems associated with my condition, but it’s that ‘do I want to be on it for the rest of my life, until I am an old woman? What are the other options?’ I suppose. I suppose my one option would be to go back to how it was or not be on anything at all. But then I go back to square one again and having all the symptoms again.

 

Alice was pleased that her GP prescribed her medication to try whilst she waits for her secondary care appointment.

I spoke to my GP in the new year, because of Covid and hospital appointments, referrals being cancelled and delayed, I thought ‘oh, I just can’t’, like go from like November to mid-January, and I’ve not had a referral, it was put down as not urgent but sort of higher priority than a standard referral. I spoke to the hospital and they basically told me to just wait, because of Covid. And yes, then I was just, I was just frustrated I suppose. Spoke to my GP again and they said, “Okay we’ll try you on, you know, a month of oxybutynin while you wait.” And yeah, continued from there I suppose.

 

Alice found that complex medical conditions like the ones she experiences “don’t quite fit” into the model of adult health services.

It goes back to the whole transition thing. As someone that works in the NHS and has been through the system all my life, it’s that children’s services are very much geared to children, and unfortunately-, I live in a location where there is a world-renowned children’s hospital, and adult hospital is very different. So people with long term complex medical conditions don’t quite fit into the adult service. You go to some clinics and the waiting room is full of old people. And I think ‘I know there’s younger people going to be affected by these conditions, but where are they? Where are the working age people?’ And it bothers me, it does bother me. I think a lot of the time, you know, as I say, a lot of the time incontinence and urogynae related conditions are associated with older populations. And that is terrible, okay, I guess they are maybe more affected but there are younger people out there. There are people of working age that have got conditions like that as well, and where are they? Why have we-, why are we quiet about it?