Helen

Age at interview: 41

Brief Outline:

Helen has a persistent urinary tract infection (UTI) which started in 2020. She has had a full range of urological tests and tried several short courses of antibiotics. She is now being treated with long-term antibiotics at a specialist centre.

Background:

Helen is a 41 year old lawyer. She lives with her husband and two children. She describes herself as White British.

Condition: persistent UTI

More about me...

Helen tested positive for a urinary tract infection (UTI) in 2020 and was treated quite quickly with antibiotics. However, after several courses of treatment she still felt terribly unwell despite negative tests. Helen described how her GP refused to examine her, suggesting that she was suffering with a prolapse. At this point, Helen decided to see a private doctor. From there, Helen felt like she was on a treadmill of undignified tests that seemed to have no logic or purpose. Eventually she was referred to a tertiary centre for UTI where she is now being treated with long-term antibiotics. Although Helen does not want to take antibiotics, these have allowed her to start living her life again.

Helen went from being a fit and active person to not being able to get out of bed. She couldn’t work; she couldn’t look after her children; she couldn’t exercise; she stopped socialising; she couldn’t enjoy anything. She describes the relief of going to bed at night knowing that you have “made it through the day”. Helen’s mental health was hit hard. Although her husband continues to be an incredible support, at times, Helen admits wondering whether he would be better off with someone else, or if her family would be better off without her.

Helen feels that UTIs need to be hit hard and fast with antibiotics before they become rooted. She has found some doctors to be dismissive of the idea that UTI can become chronic and has experienced unhelpful disagreement between medical camps. She would like doctors to listen and be open minded to change: “If we didn’t listen to medical ideas, we would all still be being treated with leeches”.

Helen feels that, because UTI “doesn’t kill you”, it is easy to dismiss it. She feels that she is “one of the lucky ones” who have the personal and financial resources to push forward and not take no for an answer. However, she still feels that she has been dismissed, and feels desperate for women who do not have her resources. She also feels deep concern for older women in residential care who live silently with untreated UTIs. Helen has found it really helpful to be part of a group on social media with other women who understand what she has been going through. She feels that if people don’t feel free to talk about UTI, then no improvements will be made.

Helen finds it frustrating that her family members don’t understand the impact of diet as a trigger for her UTIs.

When it can be quite upsetting, y'know, silly things like if family members y'know, they know everything that’s been going on and you go round there and they sort of present you with a spicy curry or something. And you are like, how have you not understood that this has been going on for the last, y'know or they’ll make you, there’ll be a lovely dessert and you’ll tuck into it and eat it and then they’ll say, “Oh, we did have an orange in it and an orange on the top. That’s okay isn’t it?” And you’re like ‘Well what, no. You know about this.’ Then that makes you feel rubbish, ‘cos you don’t wanna be y'know, you feel upset that they haven't listened enough to know what you’re going through. And you also don’t wanna whinge on at people all the time.

 

For Helen, UTIs had impacted on various aspects of her life, including work, childcare, socialising and exercise.

Yeah, at the very worst of it, I basically couldn’t work, couldn’t look after my kids. I was probably in bed for at least half a day, every single day and that went on for quite a few months. I’m-, you know, I wasn’t really socialising or doing anything at all because I was just in so much pain. I mean, as things have improved slowly, it’s been a sort of gradual build up, really. I think about six months after it started I braved going back to some of my exercise and I was lucky there was some really supportive people where I go to the gym. So, they’ve really helped me. But then, you know, even then you never really knew if you would go back for a week and then you’d be off for weeks again. So, you know, I think it’s really only been in the last month maybe that I actually feel reasonably confident that I can go and do my normal exercise and I really, really enjoy that so that’s fantastic. But, I still can’t do anything with any high impact. I mean, I used to run loads. I used to cycle loads. I can’t do any of that.

 

After having a cystoscopy, Helen found the recovery afterwards difficult. She thinks it was helpful to have biopsies taken and cancer ruled out.

Then the cystoscopy, that was less fine because you, they put you under general, general anaesthetic for that and they go in and actually take a load of biopsies and everything [laughs]. So, you know, that was quite an experience and I, I don’t-, the general anaesthetic just seemed to knock me out totally. I just couldn’t really wake up for about three or four days, I don’t know why. And that’s not very nice because then you, you know, you go to the loo and there’s bleeding and, you know, that’s not very pleasant, but [exhales] and I’m not sure even necessarily what the real benefit of that is. I mean, they, it’s helpful insomuch as they take biopsies, so you know it’s not a cancer, which is obviously very important. But then aside from that, it just seems to tell you that you’ve got inflammation, well, I mean, you’re going to have inflammation if you’ve had a load of infection and a load of other stuff. So, I have heard anecdotally of women being put through sort of five or six cystoscopies and you think well, I’m not really sure why like once you’ve established that it’s not cancerous, which seems the key aim, you know, they’re going to be inflamed and probably more so after you’ve been prodded around with the tubes [laughs]. So yeah, that wasn’t very nice. But, you know, at least it wasn’t anything nasty.

 

Helen finds it very difficult to relax and enjoy an evening out because she has to be careful about what she eats and drinks.

Y'know, dietary stuff. I don’t massively limit my diet but even if you try and exclude the obvious things like spicy foods and y'know, acidic foods and anything with any caffeine or y'know, even just doing that it’s still quite restrictive and y'know, you can go out for a meal and y'know, want to have a nice time. But you feel that you’ve gotta be that person whose y'know, going through the menu, asking exactly what’s in something or if you don’t you get presented with something and then you can’t eat it. And y'know, that’s not me at all. I eat absolutely anything you put in front of me, normally. You know and you can’t really drink. I mean, I find the odd glass doesn’t make any difference. But certainly you couldn’t sort of just relax and enjoy an evening, y'know, with a few drinks with friends or anything.

 

Helen takes high dose antibiotics prescribed by a specialist NHS unit. She hopes to come off antibiotics at some point, but worries about her quality of life.

They obviously are a very specialist unit and they’re operating slightly outside of standard procedures because the concept of you having, y'know, an embedded or chronic infection is not that widely accepted. I mean, for me, I feel really comfortable that it, I am being treated on the NHS because I know, you know, sometimes I worry with some of the private doctors, there, it’s in their interest to carry on treating you. I know that sounds bad. But you do pay them. So, but with this, I know that it’s on the NHS it must be, y'know, they’re not going to do it if it’s wildly different. But they, they, they are following different protocol because they, they keep you on high dose antibiotics pretty long term until all your symptoms have gone. So I am on, I don’t want to be, but I am on antibiotics that I’ve been on for nine months and y'know, I desperately hope that I can get off them at some point, but y'know, when I started this, I y'know, I was struggling to live any form of daily life and now, whilst I’m uncomfortable a lot of the time, y'know, I’m working, looking after the kids and exercising every, most days. So, the difference is enormous.

 

Helen feels that everyone gets put on a ‘standard path’ in healthcare and would like care to be individualised.

It seems to me that they just, there’s a standard path and everyone gets put on it. And possibly slightly regardless of how their symptoms differ. I mean, I think the massive issue is the, the testing because now, y'know, I’ve read a lot about it. I understand that the, the basic testing is so sub-standard that it’s missing an awful lot of cases. I think if, if the testing was improved then it’d be a lot easier, y'know, very, very early on to understand what the actual issue with it is. What’s happening, unfortunately, is that people are put on this sort of long pathway of tests. Now, I mean, for me, even privately this long pathway test took, y'know, eight months or something. If you were getting this done on the NHS, I imagine it could easily take years because there’ll be at least three months between an appointment and then you’ll have to wait till your next appointment, y'know. But if the testing was better and they actually realised that these women, a lot of these women still had an infection, what they really should be doing is just, y'know, early doors, hitting it hard and fast with the right antibiotics, probably none of this would be necessary. But by the time you’ve sort of delayed for y'know, eight months, a year, two years, whatever infection is there has got itself so established and rooted, it’s really hard to get rid of.
 
So I think, in a way the, the big problem is right at the very beginning. But then with fixation of y'know, having to put women, it’s almost like y'know, if you don’t submit to these tests, you’re not going to come out the other end and have the treatment that you actually need. But you could, you could’ve lost two years in that process and then, of course, y'know, then you might be facing years and years of treatment at the end whereas possibly, had you been given three months of a high dose antibiotic on day one because they knew that that’s what the issue was, probably would have come out of it, y'know. That’s what’s so frustrating. It, it feels like a tick box exercise like oh, this lady hasn’t had urodynamics, she must have that, y'know. Well, does she need it? I mean, if there’s a good reason, absolutely. But if there isn’t don’t just, it shouldn’t just be like a number’s game with putting every woman into, I say women, I know it is men as well, but it’s predominantly women. And through this set list, this set process, just because that’s what’s done, y'know.
 

 

Helen chose to see a private urogynaecologist but found her experience no better than the NHS.

I had a really bad experience with one GP. You know, I mean, I was desperately upset over the phone ‘cos I was still in y'know a lot of discomfort, you know really not kind of getting out of bed a lot of days. 
 
So I kind of got a bit fed up with being told that they weren’t gonna do any more for me and of course, it was in the beginning of the pandemic, so I mean the chances of being seen by anyone else were really slim. But at that point, I had some health insurance, so I went privately to see a urogynae but to be honest it wasn’t much better. I got put through every single test. 
 
I had cystoscopies. I had internal and external scans. I had MRIs. I had urodynamics. I had, you know, they tried to give me drugs for overactive bladder, which I don’t have. They gave me like bladder installations which did absolutely nothing. But you know, the response was well, you can’t have an infection ‘cos you had quite a few antibiotics, so it must have gone, no like actual ability to test anything further. And although it was private, it was the consultants that are with the NHS ones. So, it was the same protocol, you know, that they were following. 
 
So, very dismissive and it, it felt like they were just rolling out different, y'know, just to try just to see what happened without necessarily any real logic to it

 

Helen says she’s learnt a lot from other people in the Facebook group for chronic UTIs that she wouldn’t have known otherwise.

I there’s a Facebook group, basically just for people who are under treatment from one or other version of the chronic UTIs specialist. And it’s got thousands of members, thousands and thousands. And it’s quite helpful. I mean, it’s a mixed blessing because of course, what tends to happen is people go on there when they’re having really a bad time and then people move on when they get better. So, it gives you a slightly skewed perspective that no-one ever gets better which is not the case. But provided you sort of go into it with that awareness. I mean, it’s brilliantly helpful because y'know, you’ve got this whole pool of people who understand what you’re going through. And y'know, can, I mean there’s a rule that you’re not allowed to talk about medical dosages or anything like that, but y'know they can talk about other lines of enquiry they followed or they can talk about y'know, things that help them with their symptoms, y'know, not antibiotics but and yeah, so I think that’s a really positive thing. I think I’ve learned a lot through that as well that I wouldn’t otherwise have known.

 

Helen shares her experiences with persistent UTIs with friends that live nearby. She hopes that being open about it will help keep other women from “suffering in silence.”

My close friends that I see locally are amazing. They always, whenever they see me they always ask, y'know, we have a little running joke with one of them, ‘cos she knows that I, as part of the treatment I, I write down at the end of every day a score out of ten. I know that sounds a bit barking, but because the rate of progress is so slow, it can be really useful to see that even though you have, y'know, ups and downs, that actually your general level is sort of getting better. So, whenever I see her, she, she’ll ask me what score out of ten we’re on for the day. I mean, I will talk about it, we’ll have a sort of five minute talk about that and then we’ll move on and talk about other things. But yeah, my friends who see me a lot are really are really supportive, so I’m really lucky. And I have, there’s a couple of ladies, locally that have similar conditions. In fact, I find it’s amazing, ‘cos I’m quite open and I, I do talk about it because I don’t want other women to be suffering in silence, basically. So, I’ve, and anyway, y'know I go to a gym where there’s maybe 70 members. I’ve already found five women who that have, in fact more than that who had some version of the same thing. And you think, well this is crazy like and most of them have just been dismissed or sort of got to a point where they can sort of manage, but haven't really been treated properly [laughs]. Yeah. But I think, ‘Well gosh, if that’s you know representative then this is a much bigger problem than people are talking about.’

 

Helen, who is being treated with long term antibiotics for UTI, says if we didn’t listen to new medical ideas we’d all still be being treated with leeches.

They need to listen and they need to be open minded to changes and new, you know, different ways of looking at things, they need to listen to their patients and listen to their experience and they need to not dismiss other people’s you know academic ideas on things just because it doesn't fit with what they think, not learnt or taught. I mean, you know, if we didn’t listen to new medical ideas we’d all still be you know, being treated with leeches and you know whatever else. So, you know, don’t, don’t do your medical school and then that’s it. You know, you need to keep learning. We all need to keep learning. I have to keep learning. I have to read know-how all the time on my job. So should they be and they need to keep track of, you know, all the changes and just listen to patients and to other doctors and not just dismiss, you know, not dismiss patients and not dismiss other clinician’s point of views as well.