Laura

Age at interview: 34

Brief Outline:

Laura has chronic urinary tract infection (UTI), after developing what seemed like a “quite typical” episode that didn’t respond to initial short-courses of antibiotics. She would like GPs to put “more emphasis on the symptoms” of UTI, rather than “on a flawed test coming back negative”.

Background:

Laura is a finance director, currently on leave due to ill health. She is in a relationship. She describes her ethnicity as White British.

Condition: chronic UTI

More about me...

Laura had repeat episodes of urinary tract infection (UTI) in her early 20s, and one or two episodes a year in her late 20s. She tried measures to prevent developing UTIs but feels some advice is largely unnecessary, like being told to “wipe from front to back which no woman ever needs to be told, but male doctors do seem to think that that’s where women seem to be going wrong”. Because of her past experiences with UTI, Laura recognised the symptoms when she developed a UTI five months ago: “it was quite typical …how every UTI I’ve ever had starts”. She saw her GP and took a three-day course of antibiotics. The antibiotics cleared the cloudiness from her urine but had limited effect on the “absolute desperate need to urinate”.

With little improvement, Laura realised “something wasn’t right” and called an out-of-hours GP service. She was prescribed another three-day course of antibiotics “which did absolutely nothing”. Laura then called 111 and saw a GP in urgent care. Getting to the appointment was physically very uncomfortable and the doctor was “very patronising, very dismissive of my symptoms”. She was told to take ibruprofen at a dose that Laura later learnt was dangerous, and that “it never hurts to be reminded” to take thrush medication which left Laura shocked as this was irrelevant. Laura was left “hugely disheartened”, in a lot of pain, unable to sleep, or undertake any usual daily tasks. She “didn’t really know where to turn”, and her named GP said it would be a 5 month wait to see a urologist on the NHS.

Laura arranged to see a private urologist and had lots of tests and scans. Ureaplasma (bacteria) showed up in one test and Laura had treatment; the next test came back clear but her symptoms remained. The urologist suggested a cystoscopy, but Laura felt this had more risks than benefits, so they “parted ways”. Laura then found a private urogynaecologist, but it was a huge struggle to get an appointment. She recalls a particularly low time when she felt suicidal from the constant pain and was pleading with the receptionist for a follow-up appointment. Laura says “the duty of care wasn’t high enough”. She thinks private clinicians are overstretched because there isn’t enough NHS provision and this leaves patients with chronic UTI having to piece together private care for themselves if they can afford to do so. Laura then contacted another private clinic, and this is where her ongoing treatment is based.

Laura’s illness has “had an impact on every part of my life – from relationships to work to general activities, seeing friends, all your kind of normal things”. She had to stop work: “I was feeling horrendous and there was a lot of guilt that I couldn’t do my job when people were asking me to do things”. Laura says her girlfriend has been supportive throughout but at times she’s felt “quite on the back foot in [the] relationship”. She explains that “you’re just not as relaxed about things”, including about intimacy and sex, and can become “very within your own head”.

Laura currently takes cephalexin (antibiotic), Hiprex (antibacterial) and dihydrocodeine (pain relief) which allows her to “live most days a relatively normal life and have a social life again”. Laura has previously tried alternative remedies like uva ursi and D-mannose, but isn’t sure “whether it’s helped or not”. She also tried changing her diet to cut out acidic and histamine foods but, as a vegetarian, this restricted her options a lot and left her unsure about what she could eat.

Some of the antibiotics Laura has tried have had side-effects, including thrush which is “more discomfort in relatively the same area” and “another kick while you’re already trying to deal with other things”. In addition, during one of the tests, Laura was given unexpected information that she might have endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes) which could affect her fertility: “I could only mentally deal with one issue at a time if I’m honest”. Laura would like to have children and has been considering IVF, but worries about what it would be like to go through pregnancy with chronic UTI, including how it might exacerbate her symptoms and medication risks.

Laura would like more GPs to take a different approach to UTI, and she thinks that Scottish GPs are leading the way in placing “more emphasis on the symptoms” than on a test result, whereas she says in the English NHS “if the test says negative then …the symptoms get ignored”. Laura also highlights the importance communication between HCPs and patients, and of “listening to what the patient’s actually saying”. Laura’s message to women with chronic UTI is one of hope: “that it does get better with the right treatment. It’s a slog, it has a huge impact on your life and it is costly [with private healthcare], but there is a way forwards”.

When Laura’s UTI didn’t get better, she felt she was no longer the same person that she had been in her relationship.

I couldn’t go out. I couldn’t go for a drink. I couldn’t go even for a walk with my partner. We, we went from having a fairly normal life to, I literally couldn’t do anything. I’d gone from playing sport with her, cycling, whatever and then I couldn’t. And I just felt like a- yeah, from someone who was sort of out and about and go getting and working and ambitious and all these things to suddenly being someone that was sick in bed, moaning all the time that they needed a wee that was, you feel very, very small and quite on the back foot in your relationship, for sure.

 

Laura talks about UTI being all-consuming. She went from being an active person to struggling to walk or hold down a conversation.

I had no quality of life. I was in bed, bed or on the toilet. I’d gone from being a very active, you know, I’d get up very early. I’d be out cycling. I’d be working. I’d be seeing friends, well limited with Covid [laughs]. But, you know, I, I had a normal social life to all intents and purposes. And it, it suddenly went overnight because I couldn’t do anything. I couldn’t even walk like half an hour because it was just- and I couldn’t have conversations with people because my brain was constantly telling me that I- or my body was constantly telling me that I needed to go for a wee. And it becomes, you become so insular and so in your head because you can’t, you just can’t focus. Like if you’re desperate for a wee, that’s all you can focus on. You can’t focus on the conversation or, you know, even my poor partner probably heard more about my bladder in within a week than she’s probably ever going to have to hear about for the rest of her life from anybody else. You know, it’s, you can’t talk about anything else. You become very selfish and very sort of within your own head.

 

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.

 

Laura was unexpectedly told at an ultrasound for UTI problems that she might also have cysts on her ovaries and possible endometriosis.

The ultrasound on my kidneys was fine. I did have a transvaginal ultrasound, which didn’t- again was, [laughs] aside from the, the joy of throwing into the mix that I had potentially cysts on my ovaries at that point as well. So there was kind of-, I’d sort of gone in for one thing and then the, the guy carrying it out said, “Oh and I think you might have cysts as well on your ovaries and potentially endometriosis, so you need to get that checked out as well.” So, it was sort of throwing all of it into the mix.
 
It wasn’t a massive surprise because sort of my mum had endom-, or yeah, has, had endometriosis, but at the same time, you know I’m, I was 33 at the time, I’m 34 now. And again it just felt like another kick. And it, and it was said so-, and again I don’t hold the guy who was doing the scan, he was all very professional, he was a very nice guy. Don’t find, I don’t- doesn’t, no grudge in the way he said it or any, anything like that. But it’s, it’s almost sort of said so flippantly when you’re, you know, you’re there because I know that it could have a very severe, potentially could have a severe impact on my possibility to have children, which I do want. And I to then being told, you know, you’re already in a lot of pain and dealing with one issue in that kind of area to then be told that actually there’s a fair chance that you’ve got endometriosis because you’ve got cysts on both my ovaries, and I need to get that checked out. And I was actually told to do, have a second scan six weeks later and I didn’t because I had swapped urologists by that point. And I thought, I could only mentally deal with one issue at a time if I’m honest.

 

Laura had a difficult time finding the right medications. She thinks she probably has a “long way to go” in finding the right approach but feels much better than before.

You’re sort of treating one part of your body but you’re concerned that other parts are getting damaged and, and not being looked at either. So, yeah, it, it’s a whole patchwork of trying to piece together, together your own health. And I think if you’re not able to do so, either ‘cos you don’t have the resources to be able to access online information or, or whatever it may be. I think you’re going-, you would end up lost very quickly in in amongst everything and would be quite despairing of it all, quite honestly.
 
I’m not certainly not perfect yet. I think, you know, my medication has probably got a long way to go. But I can live most days a relatively normal life and have a social life again and can start to do sport and can, you know, I have a quality of life that is, is okay it’s not as high as it was before all this started, but it’s [much better].

 

Laura worries about how long-term antibiotic use would impact a baby’s development.

I wouldn’t even know where to go to find out the reality of trying to have a, go through pregnancy with a chronic UTI. And, and the medication impacts on that because, you know, I don’t want to be, on the one hand I don’t want to limit the medication that I can take because I kind of feel that I need to throw everything that I can possible to get rid of this UTI. But, at the same time, there’s no way I’m going to be taking something that would harm any unborn child.
 

 

Laura felt the duty of care from her private specialist was lacking and she struggled to get a follow-up appointment because the service was so overstretched.

I kind of felt lost because I was under his care at this point but he, you know, I get it, he’s a very busy doctor. There’s a lot of, there’s a huge demand for urogynae appointments and care, and the NHS I don’t think is serving it. So people are forced to go privately and then the private ones that are addressing the issue are in huge demand. So I just couldn’t get hold of him.
 
And so, I, you know, it’s embarrassing to say it because it’s not-, you know, I’m not someone who begs for things. I’m, you know, it’s just not, I’m not a dramatic person. But I was literally sending emails because it was the only way I could hold of-, his secretary was saying, you know, essentially, “He’s busy, you know, you can get an appointment in three months”. I was literally, I was emailing saying, “To be honest, I’m suicidal. Like I can’t, I wake up, I dread waking up in the morning because I can’t face another day of every minute of that day being desperate for a wee”. It just feels like being tortured all day every day and, you know, you’re only sleeping, you know, getting sort of snapshots of sleep here and there as well.