Emma

Age at interview: 60

Brief Outline:

Emma has had experiences of urinary incontinence (stress, urge) and recurrent episodes of cystitis (inflammation of the bladder, usually caused by a bladder infection). She had TVT surgery which improved, but did not entirely resolve, her symptoms of urinary leaking.

Background:

Emma is a retired dentist. She is married and has two adult children. She identifies as White Scottish.

Conditions: urinary incontinence, recurrent cystitis

More about me...

Emma started having stress urinary incontinence following the birth of her first child. Her labour had been difficult and her baby had low Apgar scores (an assessment of the baby’s physical health immediately after birth), which was frightening. In the months afterwards, she struggled with depression and making sense of her traumatic experience of giving birth. Emma first noticed that she was leaking urine when she started re-attending fitness classes. She tried to do pelvic floor exercises and let herself heal but found that her recovery “kind of plateaued”.

Around eight years after having her first baby, Emma went to the GP to discuss the problems. She was referred to a gynaecologist and had urodynamic tests but found these “quite kind of humiliating” and especially because of the lack of privacy in the ward. Whilst Emma considered her incontinence to not have had a “massively negative impact” on daily life, it “wasn’t great” and surgery seemed “sensible”. She was recommended surgery using tension-free vaginal tape. In the consultation, she felt she wasn’t “really taken account of as a person particularly” and was instead treated like “this body that the [the surgeon] would be doing the operation on”. Emma found the outcome of the surgery was “not absolutely perfect but an awful lot, sort of better”. She found the recovery to be “quite good really” and hasn’t had complications.

In more recent years, Emma has had problems with urge incontinence, which she thinks may be associated with age and menopause. She likes to run but finds that when she really pushes herself physically, it triggers urinary incontinence. Emma hasn’t seen her GP about this yet because she finds it is “inconvenient” but “not having a devastating impact on my quality of life”. She knows that there is medication available but that it’s about weighing up the risks of potential side effects.

Emma has also had recurrent episodes of cystitis (inflammation of the bladder, usually caused by a bladder infection) for much of her adult life. She gets a few episodes of cystitis each year. Emma takes shop-bought sachets of cystitis relief and D-Mannose when she feels a cystitis infection coming on, although she is “not altogether sure” if this helps. She sometimes needs antibiotics from her GP. Emma worries about how to cope with cystitis at work and her job makes it very difficult to take any sick leave. It can also impact on things like going on holiday, because it’s difficult to predict when the cystitis will set in.

When seeking out treatment or medical advice, Emma has sometimes felt concerned about being overheard by other patients or customers in a pharmacy. She would like health professionals to recognise that conversations about urinary incontinence and cystitis can be difficult conversations to broach, and to consider the privacy and dignity of their patients. Emma encourages women with similar conditions to go to their GPs and not let embarrassment keep them from getting the care they need. She also thinks that doing research about your own health and treatment options can help people have “a little bit more control over it”.

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.

 

Emma hasn’t seen her doctor about urinary incontinence. Based on what happened to her mum, she expects she would be prescribed medication and she knows she doesn’t want to take this.

It’s not something I’ve been to see the GP about, but I mean I suppose partly I mean GP’s are really hard to kind of access just now, and I kind of know from my mother’s sort of experience with the same thing, you know. She was put on medication for it, but sort of side effects of it, you, so and as with any medication, it’s about weighing up, you know, the kind of risks and benefits. And I suppose really I’m not sure I would want to go on that medication until I kind of felt as if, you know, the sort of the benefit I would get with sort of weigh out the risks in terms of like sort of side effects of it.

 

Emma doesn’t feel the balance between the pros and cons of a medication for urinary incontinence are worth it for her at the moment.

But yeah I mean in terms of the side effects of the medicine for the urge incontinence, I mean just the memory I think is sort of dry mouth and kind of dizziness are maybe, a couple of them and, I mean for me I’d got a dry mouth anyway so the thought of going on anything like that that would make, sort of potentially make things worse and it isn’t as if, you know, it’s not like a maybe an antibiotic or something like that you would go on for a short period of time and that might resolve the problem, I mean my understanding is that these drugs are ones that you would be on nearly for, you know, forevermore so I, you know, I kind of felt for me I’m not, not quite ready to go down that route yet.

 

Emma says that you wouldn’t tell people your personal problems in a supermarket queue, so staff should be aware of privacy in an open hospital ward.

It was a four bedded ward which I, you know, I didn’t really like as a sort of you kind of feel that nothing’s really confidential, you know, sort of when the ward rounds come round they maybe pull the curtains round but sound travels through sort of through the curtains and, you know everybody’s sort of listening to, sort of, the conversations that are kind of going on and I, it just always seems quite this sort of strange concept to me that you, you wouldn’t necessarily share a hotel room, you know, with a stranger but you’re expected in hospital when you’re at your most kind of vulnerable you’re expected to share with strangers and have your medical history sort of really discussed quite kind of openly and I mean there is obviously there’s a lot around about sort of patient confidentiality and not sharing patients notes and, you know, just what you’ve talked about before we started the interview, sort of underlines that it’s all kind of, there’s a lot of legislation around about it.
 
But I mean I did kind of feel that it’s the kind of nonsense when they’re standing in, you know a ward and having conversations about your operation etc. and there could be sort of five or six other people in the vicinity.
 
So yeah I suppose things like, like that it’s kind of hard going in for some of these sort of gynaecological type things that, you’re feeling quite vulnerable anyway and you know, sometimes the NHS settings it doesn’t really, it doesn’t lend itself to much in the way of kind of privacy or kind of dignity, as you know, as such.

 

Please listen and respect people’s privacy and dignity, says Emma.

The key messages for the health professionals would be to listen, listen to patients and to I suppose respect their privacy and their dignity as well that this is, these are hard conversations to have and there’ll be other, lots of other women out there like me who’ve never had a conversation, a full conversation with their friend or their family and are maybe been asked to have conversations in quite sort of public, sort of public place. And it probably contributes almost to people are slow to present to care because they do feel, they do feel embarrassed and embarrassed by it. So yeah in terms of kind of health professionals I would say sort of empathy and kind of listening to, listening to, you know, to patients.