Jane

Age at interview: 54

Brief Outline:

Jane has had persistent urinary tract infections since the age of 17. She is also peri-menopausal which creates additional symptoms for her to manage.

Background:

Jane is 54 university lecturer and researcher. She is married and has three children. She describes herself as White British.

Condition: persistent UTI

More about me...

Jane has lived with 40 years of exhaustion as a result of persistent urinary tract infections (UTI). UTIs have “blighted” her life since her first sexual encounter as a teenager. This first experience was not only debilitating, but also very frightening, particularly as Jane was travelling abroad and had no idea what to do. She described pain like a twisting knife, and even after several years, she still describes times that she would gladly “rip your own bladder out” to get rid of the pain.

In between severe episodes, Jane is constantly aware of her bladder and urethra. She knows when she has an acute infection because she sees debris and blood in her urine. However, Jane has been told that she does not have an infection and has been sent home to cope alone. She wonders whether the under treatment of UTI has caused the infection to become embedded. Jane remains hopeful that research will help us to understand UTI and how to treat it effectively.

Jane sometimes wonders whether she has a structural problem that is making her more prone to infection but does not want to see a urologist because she worries that the invasive tests might make her worse: she is also concerned that this might put her on a healthcare pathway that she cannot control. Jane feels that we need to humanise healthcare. However, she feels lucky to have a “brilliant GP” who listens, and who has given her self-start antibiotics. She would like all health professionals to listen, to take patients seriously, and to believe what they are saying. Being part of a social internet group has made Jane realise that what she has accepted as normal, is not normal. The group has also given her the knowledge to communicate more effectively with healthcare professionals.

Jane feels there is a lot of shame experienced by women with UTI which has not been helped by suggestions that UTI is caused by poor personal hygiene: she feels it is shaming to suggest that women are “dirty” and at times she has felt “chastened” and “humiliated”. Jane feels that the general public minimise the impact of UTI and think that it is just “a bit of a twinge down there”. In contrast, her symptoms have had a big impact on her sexual life, relationships and emotional wellbeing. She strongly feels that UTIs are “almost certainly killing older women” who might fall as a result of UTI and that something must be done.

Jane gets UTIs which come back time and time again. She experiences a progression of pain, difficulties and discomfort weeing, and visible changes to her urine.

That knife it’s, it’s twisted, and your bladder is squeezed at the same time, that’s exactly the perfect description of what the pain feels like. So it’s, a, it’s an almost pleasurable twinge in the early stages, and then it ramps up very quickly to kind of real pressure and agony, agonising feeling. Now that’s combined with being unable to pass any urine. And what it feels like then is that the bladder is completely swollen or inflamed or, and it just feels like everything is hot, right, and, and nothing’s going anywhere. So there’s this incredible downward urge and squeezing going on, and nothing happening. So then you feel like your bladder tissues are all grating against each other almost, so that that’s another kind of pain. And then I think at the end of the whole spasming I guess it is, there’s like a kind of, it’s just like a neurological pain, I don’t know how to describe it better than like toothache, it just can feel nerves going, Eergh, like that. So there’s that. And then you pass one drip, you know of wee, and it’s boiling hot wee and you know all of your external tissues feel sore and inflamed at that point as well. So I, so that was it, and then often your, your, your urine becomes very cloudy, and you kind of know that you’ve got an infection, you can literally see the bits of stuff.

 

Jane is aware of a variety of factors that may influence her having urinary infections, but hasn’t been able to identify a “particular causal factor”.

And I think as my, as I get older and I think pregnancy, I had three caesarean sections I don’t know whether that’s had an impact. I don’t know whether, I’ve never had any internal investigations relating to this, I don’t know. I mean I’m very conscious that that’s one thing I don’t know, is whether my structural stuff could be improved. I’ve had, you know obviously pelvic floor you know exercises and thinking about that, but I’ve never examined my own pelvic floor from a, you know a kind of diagnostic perspective, and it does, I do sometimes wonder whether that’s you know maybe not helping, made things worse, might be my own fitness or lack of rather, weight, you know pfhhh. Has everything just collapsed down a bit more and have I got prolapses, and would I know if I did have a bladder prolapse? I don’t think I would really. I don’t know what that’s like. So I do, there is more to know, as I get older and, and enter the menopause fully, I think. But is that a cause of it being worse? And I think the, yeah, so and I don’t know whether the C sections affected it, I mean I’m assuming it all goes nowhere near the bladder, but you know, who knows.
 
I’ve had a few periods where it’s abated, and again I’ve often got no idea why, and there seems to be no particular causal factor, whether it’s a particular partner, or a particular practice, or a particular you know set of things on my part, or you know I often speculate whether there’s something structural, you know that’s, that’s an issue.

 

Jane has read research about urinary infection tests. She would like healthcare professionals to treat symptoms and to place less value on current tests.

And, and as I understand it the model suggests that not only is the bladder not sterile, which means that dipsticks are kind of pointless anyway, but that culturing is much better but the culturing criteria are really inappropriate, and so the threshold that what looks like a problematic urine culture is, is, is way too high in fact and actually it needs to be set much lower. And this is culturing criteria based on you know a study done in 1950’s of pregnant women, inappropriate for today and for the full population.

Anyway most of us who feel strongly about this feel that those women who, who walk into a surgery today or do it at home, if they’re lucky enough to have a sample bottle, and the dipstick says no infection, should take that with a pinch of salt, and some of these clinicians treat on symptoms, like they did in the old days, before people had these technologies, if a woman seems like she has a urine infection, treat it as if she does.

 

Jane manages her UTI symptoms with over-the-counter UTI sachets and D-mannose.

I do think drinking a pint of water after sex really helps and, and then making sure you’re hydrated the next day. I do have some of those little sachets of alkalising like Cystopurin and, and the other one, Cystemme, I think it’s called, in the house when I can, because I think if you’ve got minor symptoms and it hasn’t gone to the full blown acute one that I mentioned at the start of the interview, that can, it tones down the acidity of the urine, and I think it just reduces pain, and it, it means it’s more manageable so I would have those in the house, although some GP’s don’t like them.
 
I’ll, I take, if, like before I have sex I’ll take D-mannose, which I buy from Amazon, beforehand, which is really expensive by the way, like extremely expensive. And so I’ll take that, and then afterwards I’ll carry on dosing it like, I’ll take four during the day because I think your body can only like absorb so much, so it’s like, and this is the thing you have to work out for yourself, right, cos although D-mannose isn’t, is in the NICE guidelines, it says women may want to try it. Most GPs won’t have heard of it, mine have never heard of it.
 
It’s like women are having to be like, almost like pioneers like working it out for themselves because there’s just no help there available.

 

Although Jane feels a bit uncomfortable about going private, it has been important to build trust and have time to talk about her concerns.

I have to say I’ve got some very, very good NHS practitioners in my arsenal as well, my current practice nurse, one of them any way and the, the current, the GP who I’ve mentioned, I’ve got a decent enough relationship to be able to speak very frankly to them, and that, that helps. But I feel that having to go private, and I feel like it’s a having to go, and I hate it, because I feel it’s really hypocritical of me to go private when many people can’t afford it, and I believe strongly that this should, this kind of service should be available on the NHS, it’s really difficult to talk about your bladder and your vagina and your sex life, and your cleanliness down there, with people you don’t know and you don’t trust. And it’s really difficult to talk about those things with people who don’t give you enough time, like I have had today, you know to kind of burble on and finally get to the point.

 

As a student, Jane felt that she was being “told off” for being sexually active. She feels that linking UTI, sex, and hygiene is not helpful and will stop people getting help.

I was studying for my degree then, and I went to a GP in the college and I think it was a man again, and I think that was the first time anybody said to me, “Well you’re obviously wiping the wrong way,” or, “You’re obviously not washing properly,” or you know, and I thought, okay, perhaps that’s right, I ought to be cleaner. And I felt a lot of shame about that, and it was very, very hard hearing that ‘cos I thought oh my God, it’s ‘cos I, you know I, I knew that the cause of a bladder infection was by that point almost certainly you know faecal material that had managed to get itself in the wrong place. And of course, you know, I guess like many women, I assumed it must be mine and not some partner’s faecal matter. So I, I took it, you know and I went, “Oh God, I must be responsible for this.” Right, so that was very hard. Took the antibiotics, felt chastened, felt bad about once again having to own up to having had sex to a middle-aged man. And was quite humiliated and in a lot of pain and agony.
 
So, but I think that, I think that’s one of the issues young sexually active women, you know they’re not, not talked to very generously, I don’t think by a lot of healthcare professionals. So the, and, and I guess we also embody that shame ourselves, you know, as, as women. You know nobody did raise their eyebrows about my cleanliness, but I just knew I should feel it somehow, I guess, that’s just general gendered culture. But, but certainly you know, feeling ashamed by your sexual activity and this, and then having to feel shame about defending what’s really going on in your symptoms, that’s pretty hard when you are 23.

 

Jane asks healthcare professionals to join patients in what can be a “dark, shaming space” of living with an urogynaecological condition. [spoken by an actor]

It’s about humanisation. That’s what we need from healthcare professionals, you know, recognise that this is an intimate, dark, shaming space and that’s not our fault, you know it’s society’s fault, cultures fault, and therefore cross that boundary, come in with us, you know be in that space where, where women want to be talking about difficult stuff, you know.

 

Jane wants her healthcare professional to get to know her as a person and not treat her as a “machine”.

I don’t want someone who doesn’t know me or doesn’t, is completely depersonalised and treats my body like a machine. I know, and I know that’s how surgeons have to think, how could you possibly cut into people all the time without seeing it as a thing, you know. So it’s not about sexualisation, it’s not about mechanisation. It’s about humanisation. That’s what we need from healthcare professionals, you know, recognise that this is an intimate, dark, shaming space and that’s not our fault, you know it’s society’s fault, culture’s fault, and therefore cross that boundary, come in with us, you know be in that space where women want to be talking about difficult stuff.