Prof Jennifer Rohn 00:06 I would describe it as constant discomfort at best and constant pain at worst. Its like a constant burning tingling sensation. Its always needing to go for a wee,

Lily 00:22 I don't know if it was a UTI, that's the thing. I just had to pee a lot all the time. It kind of feels like someone's shoving a knife up your vagina. You can't get comfortable in any position, and it keeps you awake. And then you sit down on the toilet, and nothing comes out. And then you get up and you feel like you need to wee again.

Prof Jennifer Rohn 00:48 And I also got like pain in my lower abdomen.

Lily 00:51 and it's a kind of constant Groundhog Day of like, pure hell...

Prof Jennifer Rohn 01:01 One time I ignored it and it spread to my kidneys. So all you can do is lie motionless with heat back on your back and take lots of painkillers.

Narrator 01:15 Many of you will know first hand exactly what having a urinary tract infection, also known as a UTI, feels like. After all, around half of all women in the UK will suffer at least one UTI at some point in their lives. The symptoms can be bed bound and be extremely disruptive to your life. But for others, you might be able to go about your day in mild discomfort. Whatever the symptoms for the majority of women, and it is mainly women who suffer. It's thankfully a short lived experience. But what if those symptoms didn't go away?

Anna 02:04 It started to get really scary. It was sort of like I'm in pain constantly.

Narrator 02:09 Week after week.

Caroline Sampson 02:11 I went back numerous times. I said I don't feel right. This is not right, please, can I have some more antibiotics.

Narrator 02:17 Month, after month...year after year... You see, this series isn't about UTIs. Not exactly. It's about chronic UTIs or CUTI.

Anna 02:37 That's what everyone calls it. I just hate that it's got the word cute in it, but I'll probably refer to it as CUTI.

Narrator 02:42 and unlike short term or acute UTIs, these didn't officially exist until very recently.

Lily 02:50 So I said I have a chronic UTI an embedded UTI infection and he was just so stumped. He was like... that's not real.

Narrator 03:00 I'm Verit de Cala Podcast Producer. And in this episode of CUTI, we're looking at the stories of patients are the first stages of the illness. We'll find out how misconceptions misogyny and a lack of research have not only shaped the science, but also the patient's experiences making it almost impossible to get a diagnosis Episode One- tests misogyny and misconceptions.

Anna 03:35 Listen, you're the professional...

Narrator 03:39 This is Anna.

Anna 03:40 If you say we have to go in a cupboard and I accept that

Narrator 03:43 I've put her in a cupbord becuase that was the only way that audio would sound remotely professional...I wanted to begin with Anna's story because she's the reason I know anything about CUTI and about four years ago when we lived together she got a UTI that just didn't go away.

Anna 04:00 I slept with a guy one time got a UTI first time I've ever had a UTI went to the doctors and then it kind of went away but I still had lingering feelings of sort of urethral burning and stuff like that and I remember going back and they tested my urine and they were like you're clear you're fine there's nothing wrong and then basically maybe 70% of the time after that that I slept with somebody okay UTI ....so I remember one time I went on a run and then I got a UTI and I was like that's really weird. Went to the doctor they tested me they'll let you dive UTI. But I'm thinking you know I'm having these symptoms. I'm staying up I'm having to drink so much water. It really hurts when I pee or classic UTI symptoms. And it got to the point that I was living in consistent pain was crying to the NHS being like...Please can you help me like I'd been to a&e at that point. And again, just all these different health professionals were just telling me there's nothing wrong. It's not coming up on the tests have an ibuprofen. But that was kind of how it went for maybe a year to the point that I was in pain all the time.

Narrator 05:21 The cycle of waiting for a GP appointment, getting a short dose of antibiotics or getting no medication at all, is something everyone with CUTI has gone through, no matter their age or circumstance.

Caroline Sampson 05:32 So I'm Caroline Sampson. I'm 60 years old I live in Hartfordshire. In March 2016, I was sent to a specialist menopause GP because I was on oestrogen patches but couldn't tolerate the progesterone. And she told me I would need a Mirena coil fitted to pump out progesterone.

Narrator 05:51 Progesterone is a hormone that is often used to treat symptoms of menopause. High numbers of Peri menopausal women suffer from CUTI. And we'll get into why later. But after Caroline had her coil removed, her pain persisted, and she was having increasingly difficult encounters with doctors, the more she went back.

Caroline Sampson 06:10 I was becoming really anxious by this stage thinking what you know what's going on here? You know, I know I'm not right. But I'm being told by these results, that all is well. So in the August of that year, I asked to go and see a urologist which I did. And he said to me, Look, these results have all come back negative, you don't have a UTI, you haven't had one since March, I suggest you go and get psychiatric help. That's what he said to me.

Narrator 06:39 When confronted with women in pain, the suggestion of emotional instability as the cause is always lurking just around the corner. From being told you're stressed to being told to see a therapist, this is a theme that comes up even more frequently for CUTI patients off the back of these negative test results.

Dr Raj 06:59 The narrative changes very quickly from the you have an organic disease, like you know, you've got a UTI or you've got bladder pain syndrome, whatever, too, you have a psychological problem that flips really quickly. From I don't know what's wrong with you, therefore, it must be something psychological. And that's just what patients are telling me.

Anna 07:27 I think in that year, before I had a diagnosis, I probably did speak to at least 20 Different doctors, nurses and emergency room professionals, whatever the word is, and no one at any point was like, right? This this is bad that it's happening to you. And I'm going to follow up and I'm going to look into it. I just don't understand how they couldn't have at least found out about the concept of a chronic urinary tract infection.

Narrator 07:58 This is a question CUTI sufferers are constantly left asking, Why wasn't the inflammation there for doctors? And why was the desire to look further stifled again and again. I mentioned previously that the term chronic UTI was not added to the NHS guidelines until very recently, in March 2022 to be exact. I wanted to find out why these tests were coming back negative and how long the information had been out there.

Dr Raj 08:28 My name is Raj Khasriya. I'm a consultant gynaecologist at the Whittington hospital, I'm the lead for the Chronic UTI at the LUTTS clinic at the Whittington.

Narrator 08:40 Back in 2008. Dr. Raj started a PhD with the late Professor James Malone Lee. He was a pioneer in the field and sadly passed away in 2022. What the professor Dr. Raj and the team of researchers found completely broke with assumptions that have been made about UTIs for the last 70 years.

Dr Raj 09:01 One of the first things I did when I started my research was to listen to these patients and think, okay, they keep on telling us they've got an infection, the tests don't always pick it up. Okay, well, why would that be?

Narrator 09:13 If you've been to the doctor with a UTI, you'll know that often the first thing they do is a dipstick test. Then depending on the result of that test, you might have a second called a midstream urine culture, or MSU.

Dr Raj 09:27 When you compare the dipstick, which is this little strip that you put in wee actually when you compare it to the urine culture is actually not very good. It's not good at picking up an infection. But the problem is, that's the first thing that happens when you go to any doctor. And if it's got some signs in it of an infection, then you might get treated or that urine might be sent off to a laboratory for further testing. So what patients were facing was was that this dipstick would be negative. And so people would say, Well, you haven't got an infection. We don't care what symptoms you've got. The dipstick says no And then we looked at urine culture. And we realised something astounding again. And that's about our own prejudices, and about our own biassed. So we trust tests a lot. And once we started to look at this test, and even test healthy volunteers, we realise that there's a lot of flaws in the urine culture. And it starts with how that sample is taken, and how long it even takes to get to a lab. It

Narrator 10:29 It can take days for urine to get to a lab, and they realise that during this time, in certain conditions, the bacteria causing a UTI simply won't survive, and therefore won't be detected. And once they started digging, they realised the problems with urine cultures were more historic than previously thought. In 1957, the scientists Edward Kass gathered urine samples from a small group of pregnant women who had severe kidney infection. His work was never representative of women with UTIs. Yet, it's this research that has set the threshold for urine culture tests for the last 60 years. Their research showed that the dipstick tests Miss 60% of chronic and recurring infection, while the urine cultures miss a staggering 90%. In 2015, some guidelines did change stating that women can get antibiotics without a test if showing two signs of a UTI. But very often the test is still relied on. As with many women's health issues, it seems the research was never properly done in the first place.

Dr Raj 11:41 We also then realise that healthy people also have bacteria in their urine. And it was actually became really difficult to understand the difference between healthy people and people with an infection if you just look at a urine culture because everybody's got bacteria there. So just the presence of bacteria in your urine can't prove that you've got an infection, it can prove that that bacteria is there, but we don't know what it's doing. It could be in the background doing nothing. And so we began to understand that and unpick some of the problems of why we are not successfully treating people with these bladder symptoms.

Lily 12:18 So I went to the female doctor, and she was like, quite nice. She just gave me a three day course of antibiotics and basically said this is the usual protocol, drink cranberry juice, wipe after sex, blardy blah...And wee after sex, all of the usual things, which to now to me have become like problematic stereotypes.

Narrator 12:50 The language and the myths surrounding UTI shed light on the reasons why all this science and all this research hasn't trickled down into the medical sphere...

Lily 12:59 You're told, you know, you've got your first UTI from having sex and you get it, you get it because you don't go to the toilet properly after sex where you're or, or the other one, which is really horrible is a hygiene thing. So like, there's this idea that like you're more prone to UTIs if you're not hygienic, and you don't clean down there properly, and things like that, which is wild, because the vagina and bladder area are self cleaning anyway. So it can't really be it's bacteria that comes from other things. And obviously sex can be a trigger, but it's not the cause...

Narrator 13:30 The language and the myths surrounding this disease create the idea that this is something women can prevent that UTIs aren't that serious. And if you get them, it's in some way, your fault.

Lily 13:42 There's definitely a lot of guilt attached to it all. And I think that is also massively like related to the perceptions of it. And I think probably because of how I was treated by medical professionals. It was kind of like it's put on you. It is like this, you made to feel like it's kind of your fault, you have this. So that then embeds itself that thought embeds itself within you. And you've very much internalised this idea of like, this is kind of my fault. And like, I'm slowly working out that it isn't but there's, there's there's layers to it on that on that level as well.

Narrator 14:17 The perfect example of these persistent attitudes cropped up recently in an article by documentary maker and women's health campaigner Kate Muir. It perfectly demonstrated how science is continually being ignored, while more pressure was put on women to change their behaviours. She pointed out a recent NHS press release that aims to raise awareness on how to prevent UTIs in the older population. Here she is talking about the press release on women's hour.

Kate Muir 14:46 Then this NHS press release came out in the autumn and it said we must stop these UTIs It had three big experts including a gerontologist on the press release, and women must clean themselves better and drink more water and we must be on the lookout for this and I thought, wait a minute, what is missing here? Vaginal oestrogen.

Narrator 15:09 UTI rates go up drastically when women hit 45 and are Peri menopausal. And we know now that this is because of the loss of the hormone oestrogen. This press release from last October advise women to wash themselves more stay hydrated, but failed to mention vaginal oestrogen at all.

Prof Jennifer Rohn 15:28 When you want to study something, as a scientist, you need to get funding. And the way you get funding is you write grants. And when you write grants, you often get commentary from people who, especially when they're rejecting your grant, they'll tell you exactly why in a very long list. This is Jennifer Rhon, who runs a research lab on UTIs that are difficult to treat. I wanted to find out more about this disconnect between science and perception, and why the research that is there keeps being left out of the healthcare system. In this long list of rejections that I initially got, when I was starting out, was were statements like, you know, well, we don't need a new drug, or we already have antibiotics. And it's no big deal. It's just some, you know, small infection. It's not it's not earth shattering. And I think that there's there are increasing numbers of labs working on it, which is great. But still compared with, you know, if you just think about 400 million people a year get this disease. And there's probably about what 20 to 30 laboratories in the world studying it, the disconnect between the number of patients, and the number of scientists studying it is really eye opening. And this fascinates me, because I think it is it's sort of to do with the fact that it's been seen as a women's disease, women's pain is traditionally dismissed, that we have a higher threshold for people taking us seriously as patients. I think it's all tied into that. And I think it's changing. But we still need a lot more work. And we need a lot more research funding to get to the bottom of it.

Narrator 16:53 Now that there is more research, what's changed basically in the understanding of what a UTI is from your research.

Prof Jennifer Rohn 16:58 Well, in the old days, people thought that UTI was a simple infection. And by that, I mean, you get some bacteria, they get up into the bladder, as they do, it's open to the environment, anything can get up there. And then it would maybe stick to the surface of the bladder and cause a bit of irritation. And that would translate his pain and that that's a UTI. That's what basically the sum total of what people thought about UTI, it was only in more recent years that people realise it was much more complicated. So the bacteria yes, they come in, yes, they stick. But they also do really crazy things like invade the cells of the bladder and burrow into the wall of your bladder and they hide out in these. Sorry, you look horrified, they go into these things that are known in the field as pods, which are basically like Alien, and then they can burst open later and reinitiate your infection. So for example, if you have a UTI, the bug might get up there, burrow into your bladder wall multiply and make millions of copies of itself. And it's all quiescent. So it's hiding in there and you don't know you have a UTI. Maybe you think you had a UTI and it's gone now. But deep inside your bladder, you still have these seeds are these reservoirs. And then later, they can erupt basically and reinitiate, a new round of infection. And this is something that nobody appreciated until about until about the early 2000s. And that's just the tip of the iceberg of the interesting things we're discovering about UTI. That's just one example. There's all sorts of other ways that the bugs can subvert your immune system, they can hide from the immune system. And really, none of that was known about 20 years ago. And I think it's really fascinating how the field has moved on.

Narrator 18:32 I was looking horrified. But I was also fascinated at the complexity of these bugs. It's clear that the deeply entrenched medical bias that surrounds Women's Health has shaped the way we understand UTIs.

Prof Jennifer Rohn 18:47 I teach medical students every year, and I talk about UTI. And I talk about some of these issues, and they have absolutely no idea. They never learned in their courses about chronic UTI, they never learned that diagnostic test didn't work very well. They never even learned that the bladder contains bacteria, that it's not sterile. And the fact that in the 21st century, we can have medical schools at top universities not being taught these basic facts, things that have changed. I know maybe over the last 20 years, I mean, you should be able to incorporate this into the curriculum, right.

Narrator 19:22 If young doctors could be taught that for a large number of people, UTI is not just a one off and it's not a trivial simple infection. It could make a huge difference. But where do you go if the doctors can't give you answers? With nowhere else to turn, women created online community groups which have gathered huge followings, and are still often the first places people will come across the term chronic UTI. I posted this desperate post being like I don't know what to do. Is anyone else just like crippled by constant UTIs there were hundreds of posts of these 1000s of posts are, I think 10s of 1000s of members now. So I'm just poring through all of this information and reading all of these things to being like holy shit, I'm, I haven't been making all of this up, I knew I wasn't making it up, it was a huge relief to just see myself in all of these women's stories, and to have them say, there's language for this. But then you've got the other side of it, which is that the support group can be really overwhelming. You've got women being like, I've been in treatment for six years, I'm not cured. I've had this illness since I was 14. And now I'm in my 40s.

Caroline Sampson 20:43 It is affirming to know that there's a lot of other people with the same issue. But it can be quite depressing. It can be quite depressing. And particularly if you see that someone is in a really bad way, and will say there's no way out of this, I'm going to end my life. You know, that's, that's really upsetting for the rest of us, because we could all be in that position couldn't we.

Anna 21:08 The thing that, that I can't even really bear to think about is the fact that if I've been treated properly, in the proper instance, if they'd listened to me when I said my symptoms hadn't gone away, I wouldn't have been in this situation, none of these women would have been in this situation, it's completely avoidable.

Narrator 21:24 Does that make you angry?

Anna 21:26 It makes me want to scream and cry and shake people.

Caroline Sampson 21:34 So I think it's made me more angry than anything else. The only way I can deal with this is to think that I'm actually doing something about it. That might make a difference. That is the only way I can get through each day. But yeah, it's been really hard. Yeah. And as I say, I've got my daughter's wedding coming up, and I'll, I'll get there, I will get there and I'll enjoy the day as best I can. But I'm living the best life I can. I think at the moment.

Anna 22:01 The phrase chronic urinary tract infection has very recently been recognised by the NHS, which the sort of chronic UTI community is obviously seeing as a really big win. And it is...

Narrator 22:15 How do you see it?

Anna 22:17 I don't know, it sounds really selfish, but like, that doesn't help me. Great, great. You've woken up and you've opened your eyes, but like I'm four years into treatment. Now. My savings have all gone down the bin, I can't drink a sip of wine without crying myself to sleep like woohoo, you've recognised the term. Obviously, it's great for the future. And obviously, I want to minimise this happening to anyone else, which is why I'm so big on. Yeah, if anyone asked me about it, well, if any woman is ever like I have recurring UTIs I'm like you sit down and you listen to me, because you will not get the information from your doctor.

Narrator 23:00 There are now a handful of charities and key websites that help people manage these first stages. I've linked a few in the description of this episode. In Episode two of CUTI, we'll be looking at the next stages of the journey. For those lucky enough to get there. That means treatment.

Carolyn 23:30 He said my day you have a raging chronic infection. And I just looked at him and I thought I knew I was ill.

Narrator 23:37 Why is it so difficult to find?

Lily 23:39 How have we not come to this early I can almost couldn't believe I've missed it.

Narrator 23:44 And what have we been getting wrong?

Caroline Sampson 23:46 Men get seven to 10 days cats get seven to 10 days. Why do we get three days worth of antibiotics?

Narrator 23:56 Huge thanks to Anna Caroline and Lily for sharing their stories on this episode. And thanks to Dr Raj Khasriya and Professor Jennifer Rohn for sharing their expertise. The art for CUTI was created by Edie Medley, and you can have a look at her comic IT BURNS all about her own experience with CUTI. Her Instagram is also linked in this description. This podcast is powered by transmission roundhouse.

Transcribed by https://otter.ai