Leah

Age at interview: 34

Brief Outline:

Leah has seen both NHS and private specialists for recurrent and then chronic urinary tract infections (UTIs). She takes long term antibiotics and amitriptyline for pain, and this “really helps me to be able to live and not just exist, which I was previously”.

Background:

Leah is 34 and works in NHS management. She is in a relationship. Her ethnicity is White British.

Conditions: recurrent UTI, chronic UTI

More about me...

During her 20s, Leah experienced a few episodes of urinary tract infection (UTI). They became more regular, painful and had visible blood clots, so she was referred to see a urologist. Leah had lots of tests to assess things like bladder function. She was initially given self-starter antibiotics to take whenever she felt a UTI developing, and then prophylactic antibiotics to take every time she had sex to prevent a UTI. Because this seemed to be working, Leah continued with this approach. However, on one occasion she took the usual prophylactic antibiotic after sex but developed “what felt like the start of a relatively normal acute UTI”. The symptoms became worse and changed in nature compared to her previous UTI episodes. For example, in addition to urinary symptoms, she experienced a heaviness and ache in her whole pelvic area, felt bloated, and found any type of movement or even sitting down very painful.

Leah says that chronic UTI “changes your life overnight”. She went from being “a very outgoing person” with a busy and active lifestyle, to being in too much pain to take part in the social and sporting activities she had enjoyed. She couldn’t sleep, which made it difficult to function in day-to-day life. After about six months of this, Leah was signed off work and was off for 10 months in total. Having chronic UTI has also had a big impact on sex and intimacy with her partner. She feels a lot of anxiety around sex and highlights that masturbation as well as intercourse can cause pain and flare ups.

Leah currently takes long term antibiotics and amitriptyline for pain. When she has experienced side effects from antibiotics, she has either been able to change to a different type or accepted relatively minor ones as “worth it” for the overall improvement in her health and wellbeing. She explains, “[the medication] really helps me to be able to live and not just exist, which I was previously”. At first, Leah was very resistant to taking amitriptyline; one side-effect is weight gain, and this provoked a lot of anxiety for her, as Leah had a history of anorexia. She also felt that taking pain medication would mask the situation so she wouldn’t be able to tell if her health was improving or not. She slowly increased the pain medication and has found this has helped her resume some activities, including swimming when she is not having a flare up.

Leah says that “sometimes the mental side of this condition is harder than the physical side”. She describes how “demoralising” it is to get to an appointment or assessment and “think ‘right I’m finally here’ …and [then] they say, “Yeah, you definitely do need help. I’m just really sorry, we can’t give you it for however long,” because it’s underfunded”. She’s found a lack of mental health support throughout and has tried to piece this together but faced long waits and limited provision. She is currently on a waiting list for individual therapy before starting in a group session for people with chronic pain. She previously had some talking therapy, but the focus was on “accepting that this is my life …and that I’ll have this condition for forever”; Leah wasn’t comfortable with this approach and instead says that she accepts this is her situation for now. She thinks that the prospect of UTI returning will be a constant worry.

Leah feels that she has been fortunate in some ways, but that this is not the case for everyone. For example, she was signed off work without needing to worry about her mortgage and is “in a lucky position where I can navigate [healthcare systems], I know what to say, I know what to say to healthcare professionals to get the treatment that I need”. She quickly found a specialist clinic and was not given other diagnoses that she says might have stopped or delayed her “exploring the possibility of it being chronic [UTI]”. She described how reading about interstitial cystitis and painful bladder syndrome “scared the hell out of me” and left a lasting fear that her illness was incurable.

Leah has had both NHS and private healthcare for UTI, with different specialists and clinics, including urology, urogynaecology, pelvic floor physiotherapy, and pain services. She says that good healthcare is “about giving time and the space to the patient to be able to tell their story and ask questions”. Whilst she doesn’t blame healthcare professionals who have not had any training or previous experience with chronic UTI, she asks that they listen to patients rather than dismissing them and telling them “There’s nothing wrong with you”. She feels strongly about raising awareness, and to hopefully improve the experiences of future patients.

The symptoms Leah experienced were different for acute UTI (one-off episodes) compared to embedded and chronic UTI.

So, when I first started getting UTIs, even in my early 20s actually, it was really acute. Like it would come on very, very quickly, that it would almost be instantaneous that it would, I would get blood clotting and start not to feel well, like a bit of a temperature and not feel well. And that I suppose the pain at that point I suppose is for me, was most severe when I was actually peeing, you know, it’s excruciating. And I suppose for me the diff-, and it would be like that when I then was having recurrent UTIs, it would be the same apart from when I was taking the prophylactic antibiotic; as soon as I’d get a niggle it would just, it would just stop anything further coming on so I’d stop it in its tracks or it felt like that anyway. And then with the chronic UTI, so I started with the, the symptoms, the urethral symptoms of it being really painful but what it quite quickly turned into was a hea-, kind of a heaviness and then an ache in the whole of the pelvic area. And it changes the symptoms so currently I’m in a, in a place where urethral symptoms don’t really bother me so I have sli-, my urine feels slightly hot but it isn’t, it isn’t burning and excruciating, it doesn’t feel like I’m peeing glass. I have had, I have had episodes like that while I’ve had a chronic UTI where it hasn’t been under control. And I, but on a, on a day to day basis it’s much more now that it’s a like, it’s a dull ache, a heaviness, you feel-, you feel bloated, and when you-, when you flare, the-, well for me anyway, and it’s very different, you’ll speak to different women and they’ll have different symptoms, but when I flare, it will go up into my back so it’ll feel like it’s in my kidneys and it will go down into my thighs. And I think what happens is, is that the pain that you’re in, the surrounding areas of your body become so tense and I can often, when I suddenly, you know, have a moment and reflect on which bits of my body are tense, I can feel that I’m very tense in those areas because I’m holding-, I almost feel like I’m holding my bladder in because it feels so heavy, it feels if you let go, it’s gonna drop. Obviously, it’s not going to but that’s I suppose the way to describe what the sensation of what it feels like.

 

Leah thinks that sex is a trigger for her UTIs. She finds that having problems with UTIs puts a “massive strain on your relationship”, even when your partner is supportive.

Obviously even at the start when I was having the recurrent UTIs, sex was always a bit of a worrisome thing because I’d have to take the prophylactic low dose antibiotic so there was always a little bit of anxiety around it. And then once I got it chronic, really, God for the first, how long, so February 2019 and then so February 2019 and then it was January 2021 where we first were able to have sex without an immediate flare and without an immediate exacerbation of symptoms. So, two years of being really scared to have sex. If we did have sex, being in pain after. My partner feeling incredibly guilty because he didn’t want to bring on pain. And it was often him that would say, “No, no, let’s not, let’s not, you know, let’s not, I don’t wanna make things worse for you.” I’m very lucky like, well, no lucky, I’m, rightly so I’ve never felt any pressure but I am lucky to have a boyfriend that has supported me in that.

 

Leah has a diagnosis of chronic UTI. She would like the NHS website section on interstitial cystitis to say more about the limits of dipstick urine tests.

And there are alternative tests, diagnostic tools that can be used which aren’t dipstick, which isn’t a culture, which is a microscopy where they look at fresh unspun urine under a microscope and look at the level of your white blood cell count and the level of shedding so when you look in into the, into your urine sample, you can see it. You can see all of the lining of your, your bladder, coming off because your innate immune is trying it’s best to shed. And it really only does that if you’ve got an infection or if you’re pregnant because your, when your body is trying to make sure when you’re pregnant that you’ve kept safe so it sheds the lining. And yeah, they just don’t mention about the alternative test that you can use and they don’t mention about the possibility of the tests that are being used being inaccurate and so it really kind of, stops any exploration, you know. If you’re a patient and you’re looking at that website, you think ‘ah, well there’s nowhere else for me to go.’ Whereas at least if the website said, “We acknowledge that there are problems with testing. We acknowledge that there are, that there is a diversity in opinion around what these symptoms could be and what the condition is”. I think that would really help people that that look for help on the NHS website and currently aren’t getting it.

 

Leah had previously been diagnosed with recurrent UTI and then, when a UTI didn’t go away with antibiotics, she looked online and came across information about interstitial cystitis. A private consultant diagnosed her with chronic UTI.

So, I’d heard of recurrent UTIs, I was told that I had recurrent UTIs, that was a kind of diagnosis that I was given. And I, as soon as it didn’t disappear after my antibiotics, I immediately started Googling as everyone does and the first page that I came across was the NHS interstitial cystitis page which scared the hell out of me and I really think actually scarred me for even a year, a year and a half post diagnosis of chronic UTI. And so the, the interstitial cystitis page describes the exact symptoms that I have, so it’s UTI-like symptoms, you know, it says it’s called interstitial cystitis or bladder pain syndrome, and it says that you have UTI-like symptoms but that when you go to a GP-, when you go to the GP and you have your dipstick or you have your culture done, it won’t show that there’s an infection, therefore there is no infection and you have this painful bladder syndrome which is incurable. I was terrified, absolutely terrified. I went, as soon as I read that, you know, a couple of days into my UTI not settling, I felt panicked, hysterical really, actually. I was like well the NHS website’s telling me this is what I have, like this must, this must be it. And then I was quite lucky, so I was, I’ve been really lucky actually, which is, so the, the first urologist, the private urologist that I saw that I had known from previously, he said, he knew my history and knew my history of UTIs, and he said to me, explained that there’s thing called interstitial-, there is this diagnosis of interstitial cystitis. And he said to me, “Look, given your history of UTIs, I’m fairly sure you have a chronic UTI.” So that was on my first appointment with him and so that was really, really, really reassuring to hear.
 

 

Leah thinks that using antibiotics to prevent the chance of getting a UTI for so long may have been a “mistake”.

And I think now when I, when I look back at the letter I think he had said to me as well, when I’ve looked at the letter as well in the past that, that if it carried on happening, if I-, to do that five times and then for it, if it then carried on after that then I should go back to him but he hoped that it would settle. And I think I was at a stage of my life where I was like ‘Oh well it’s working,’ and so I kept-, you know, I would, I had sex and then it’d work and then I got into a long, a kind of a long-term relationship and it seemed okay. I would have sex, I’d take the tablet and I thought ‘Okay well there’s no, it’s working for me, there’s no reason for me to do anything differently, I don’t need to go back’. And I had in my head, I thought, ‘Okay well once I’d been with this partner for a while it will settle down and I won’t get them anymore.’
 
So, I sort of self-medicated looking back on it which is a regret I think really but at the time I never even knew that chronic UTI existed, so I never knew that it was possible for something to turn from a recurrent UTI to chronic UTI. And I suppose, I don’t know if it would have been managed any differently if I’d have gone back at the time because I’m not sure whether he would have been able to manage the condition differently or prescribe what I needed on the NHS at that point. And I don’t like to beat myself up about it, but yeah I think it probably was a mistake to just carry on using the medication in that way but I was just so happy it was enabling me to have sex without getting the UTIs that I just carried on with it at the time.
 

 

Leah worried about amitriptyline’s side effects like weight gain, but found that her body balanced out after being on it for a while.

I think first and foremost it was, it was around weight gain so I read amitriptyline can make you put weight on, it has lots of not very [nice] side effects, makes you have a dry mouth. It makes you drowsy, so it kind of, you know, limits you in the evening in terms of what you can do and it makes you groggy in the morning. All of those symptoms though, the longer you’re on it, they do improve. And actually, sorry I’m jumping around a bit, but actually getting to the point where I’d taken enough amitriptyline that I had been able to start walking, start swimming, I’ve actually then been able to manage the weight gain better. So, the fears that I had to start, yeah, I mean I have put, I did put weight on definitely, I put quite a lot of weight on. But I suppose over the last year since I’ve been able to start walking and then more recently start swimming, I’ve been able to manage that a lot more and have very healthily, very slowly been, been able to lose some weight in a safe way. So yeah I suppose no-, no one really kind of really talked me through it, I just had, I kind of came to that realisation.

 

Leah is aware of the risks of antibiotic resistance, but thinks that women with UTIs are unfairly affected.

You acknowledge that there is a, there is a very, we’re in a dangerous position in society about antibiotic resistance but you don’t want to be the one to sacrifice your treatment that you should be getting when you’re in that much pain for the wider good when there are so many other things that we could do to reduce antibiotic usage, whether that’s in ani-, like how we use it in animals, in, for the meat that we end up eating, with, you know, with all of the antibiotics that get put in to pigs or chickens or whatever. They’re, I just, yeah, so you’re very much aware that there is this, there is this bigger picture but when you’ve got the condition yourself, you don’t want to be the sacrificial lamb that is not properly treated by the NHS because of this worry about the wider picture. And you do feel, and I only have limited knowledge on this but from talking to some other people around, there are male conditions, predominantly male conditions, where there isn’t the anxiety around prescribing those long-term antibiotics. And yet UTIs is a predominately female issue and it seems to be the condition where we try and reduce and reduce and reduce the antibiotics.

 

Leah feels that it required a “journey” to go through the different levels of care before she reached a specialist chronic UTI clinic.

I can’t really emphasise like the journey that I’ve been on and how I’ve been able to access different appointments is because of my ability to be able to navigate the system and to be persistent and say the right things. And I just know that it’s not the same for-. And also to be able to afford it for the first year, I was in a position where I could afford that private treatment. And what do you do if you don’t, you just suffer. There isn’t, there isn’t, you’ve got to wait. You know, to get, even to get referred to the NHS clinic, you have to get referred by a urologist. So, you have to get from your GP, you, you’ve got to get past your GP telling you that you’ve got nothing wrong with you because there’s a dipstick and a culture, and them saying to you, “It’s in your head.” You’ve got to get them to agree to refer you to a urologist. Urologist will then say, “Well before we do anything, we’ve got to do a cystoscopy and take you through a load of tests.” You’ve got to get through all of that, potentially they’re telling you “Well there’s nothing wrong with you.” Then you’ve got to get to the point with the urologist where you can persuade them to refer you into a specialist chronic UTI clinic. Then because there’s no funding for it and it’s such a tiny clinic in the country that you then have to wait nine months to get there.

 

Leah says that having problems with UTI is not because you are dirty or because you have multiple sexual partners. She emphasises that there’s no need to be ashamed and embarrassed about it.

Just try not to be embarrassed. Like this illness is no fault of our own, you know, there’s nothing that we could have done differently. Although I did say right at the start, around potentially it could have been different around the, if I had stopped with the prophylactic but I don’t believe I’d have got the right treatment at the time anyway so I, I don’t beat myself up about it. But don’t blame yourself, don’t think it’s anything that you’ve done. Don’t think it’s because you’re dirty, don’t think that it’s because you’ve had multiple sexual partners. Our, the woman’s anatomy is unfortunately made so that for some women in particular is just quite likely you’re going to end up with a UTI. And if you’re unlucky and your antibiotics don’t kill it and it embeds, there’s nothing that you could have done to, to stop that apart from taking longer treatment which isn’t being prescribed to you. So it’s out of your, you know, it’s out of your gift to make, to make that decision. You’re at the, at the mercy of what gets prescribed to you and if you don’t get prescribed a long enough course that doesn’t properly kill it and it gets embedded, there’s nothing that you could have done differently so don’t feel embarrassed by it.
 
I’m not embarrassed at all actually so I even have on my work email address that, I want to raise awareness so I have, I have something that says that I have a chronic urine-, chronic urinary tract infection and here’s a link to find out more about it. Because actually the more we keep silent about it, the longer it will take for us to get to where we need to with the recognition of the condition and the treatment that we need and we need to shout about it and we need to get people to listen and only then will we get, yeah, only then will we get what we need and help women that are coming up behind us that are inevitably, and there will be a lot of them, lot of people in the UK and around the world that, that end up with the same symptoms that I had. And I hope that we’ve moved on to a place where they are diagnosed properly and treated properly.

 

Leah appreciates that it is difficult to ‘unlearn’ what has been taught, but would like healthcare professionals to be open to the possibility that tests for UTI are not always accurate.

Just open your eyes and open your ears and stop just doing like a ‘Computer says no’, you know, like. Just to, rather than just literally just following an algorithm and saying, “Okay, the tests say no,” just think, just look at the patient like-. I think it’s about respecting the patient as well because, you know, we know what symptoms we’re experiencing. We know what they feel like, we know if they felt exactly the same as a UTI in the past, so listen to us. We’re telling you that we think that we have a chronic urinary tract infection, don’t just dismiss us and say that we’re mad and that of course that can’t be the case. And it, it just baffles me. I cannot understand how medical professionals don’t want to learn and grow, and I get that they’ve spent how many years being told one thing and it’s difficult to unlearn something. We’re talking about people’s lives and the difference that they could make if they just listened to that woman in front of them saying that they think that they have got a UTI and how is it that their dipstick isn’t showing that they have.