Anna
Anna suffers with persistent urinary tract infection (UTI) and migraines that can cause her substantial difficulty with day to day living.
Anna is married and lives with her husband and two children aged 1 and 3. She is a self-employed researcher but is not currently in paid employment.
Condition: persistent UTI.
More about me...
Anna had her first urinary tract infection (UTI) at university and had “no idea” what it was. It started as a “nebulous pain” in her abdomen accompanied by an urgent need to urinate. Since then, Anna has developed extremely painful bladder spasms. At its worse, Anna is unable to leave the house, she can lose control of her bladder, and she cannot sleep or “do anything”. At times, she feels as if she is constantly sitting on the toilet. More recently, Anna has started an anti-bacterial medication called Hiprex that she feels is a “total game changer” but feels frustrated that she did not know about this sooner. Anna is prescribed self-start antibiotics which help her to feel more in control. She has also become aware of a ‘link’ between “my own panic and my own expectation of the symptoms and the symptoms themselves” and tries to remain calm. It has been suggested that she has a “bladder pain syndrome” and she feels this is “a fobbing-off diagnosis”.
Anna is concerned that people with persistent UTIs are given the same medical treatment as someone who has a ‘simple case’. She strongly feels that it should be ‘flagged’ up if someone is prescribed multiple courses of antibiotics. Anna realises that “antibiotic resistance is really on everybody’s minds” and knows that antibiotics can have harmful effects. However, at the same time she cannot afford to get so ill that she is unable to look after her children. The lack of understanding about the cause of her symptoms makes Anna feel embarrassed and alone: at times she feels like she is “going mad”. Doing her own research and discussing it with her sister has made Anna feel “much more empowered to deal with it”. She feels that it would help if other people acknowledged this uncertainty.
Anna feels that the connection between sex and UTIs can be a barrier to care. As a student she described how health professionals implied that her UTIs were ‘from having too much sex’ and this made her feel that she was to blame. She says that she is treated very differently now she is a mother of two. Anna acknowledges “received understandings” linking sex and shame and wonders how these might contribute to her experience: she acknowledges fleeting moments when she has felt like she is “being punished”. Anna describes a vicious cycle of pain and anxiety related to sex and has considered seeking help. However, because of “bad experiences” of health professionals “dismissing” her pain, she feels nervous about routine smear tests and internal examinations.
Anna feels “ashamed” of having a chronic condition and tends to “downplay” her symptoms: it does not make sense to her that she is “being completely knocked down” by something that other people think is a mild condition. At times, she feels that she is letting her family down because she is “constantly ill”. She would like UTIs to be taken more seriously: “it’s just not a joke”. Anna feels concerned about others who navigate healthcare with certain “disadvantages”, for example those whose first language is not English. She worries about the long-term effects of living with untreated bladder inflammations, and about passing it on to her own daughter. She thinks that teenagers should be taught about how to prevent and treat UTIs in school.
Anna thinks that UTIs are usually seen as “simple" problems and that some healthcare professionals have had little interest in questioning the underlying causes of her recurrent UTI.
Anna thinks that UTIs are usually seen as “simple" problems and that some healthcare professionals have had little interest in questioning the underlying causes of her recurrent UTI.
So I think it just, it’s just the dissonance between the, you, when, the thing is when you walk into a GP practice and you say that you’ve got a UTI, you can hear it going through the head, they’re like, ‘Simple case, I’ll prescribe 3 days of Nitrofurantoin.’ And it’s only when I said to doctors, “But have you seen how many UTIs I’ve had in the past six months” and then they’re next port of call is to arrange cystoscopy because I think they want to rule out anything sinister, you know, I can understand why that’s their priority but I also just feel like there is no interest or curiosity into why I would be constantly having UTIs. I think there, there’s no mechanism for understanding what might be causing that, and I feel like I’m just treated the exact same as somebody who goes in every two years with a UTI, you know it’s just not a simple case of UTI, yeah.
Anna says there is a lot of uncertainty around diagnosis for persistent UTI symptoms. She thinks keeping in mind different possible diagnoses is helpful, but that it can be confusing and lonely without a community of others with a shared diagnosis.
Anna says there is a lot of uncertainty around diagnosis for persistent UTI symptoms. She thinks keeping in mind different possible diagnoses is helpful, but that it can be confusing and lonely without a community of others with a shared diagnosis.
I know some people are really wedded, you know, there’s this big debate between interstitial cystitis and embedded infection. I, I don’t feel wedded to either, to either theory really although it’s very helpful to have a theory. I think when there’s really no explanation that’s very stressful, that was really stressful before I had any information at all. The uncertainty really, you know, because when I see urologists, I’ve seen three urologists and all three had the exact same line to me and they said to me, “It’s just one of those things that that young women have.”
They-, he said, “It’s just a honeymoon cystitis,” that’s their line, you know, there’s no, yeah there’s no explanation for what’s going on. The only thing I imagine going on is, it is persistent. It’s not reinfection. I’m not prone to being reinfected with bacteria, that wouldn’t make any sense because of the way that they’ve really congregated round two times whereas they’re constantly coming back but as a patient I can’t, you know, these, these theories about biofilm and things like that. I’ve got no way of perceiving that, I wouldn’t know.
I don’t mind the confusion, I don’t mind, you know, because I know some people go down different routes of explaining what these symptoms are. Some people think it’s caused by yeast. Some people think it’s an embedded UTI, some think it’s IC [interstitial cystitis] but at least, you know, then there are different avenues to explore. If you’re made to, you know, I suppose the diagnosis means that other people have it. If there’s no diagnosis only you have it and that’s, you know, really confusing.
Anna decided to ask her doctor about prophylactic antibiotics when it got “ridiculous” to be taking nitrofurantoin so often.
Anna decided to ask her doctor about prophylactic antibiotics when it got “ridiculous” to be taking nitrofurantoin so often.
I would have a UTI, they’d give me antibiotic. It would grow back, it would come back a week later, terrible. So I was constantly taking antibiotics and I can remember thinking ‘This is ridiculous.’ I’d researched online that some people take a prophylactic and I wanted to try it so I went to the doctor, and I knew how I should approach this with the doctor. I even said, “If you look at my record here, you can see that I’ve basically been taking high dose of nitrofurantoin for six months so I think it would be a good idea to try just taking every day, never coming off the antibiotics for six months and I think, yeah the doctors really respond to that. I’ve also had the same thing with I now take Hiprex which I also found from research and I also framed it the same way to the doctor, I said, “I’m worried about how I’m using antibiotics,” and they really respond to that, even though he’d never heard of the drug he was willing to prescribe it I think because I knew to frame it in that way, the worry of antibiotic use.
Anna thinks there is a stigma about having to regularly use health services for recurrent UTIs and that many people see UTIs as “mild problems”.
Anna thinks there is a stigma about having to regularly use health services for recurrent UTIs and that many people see UTIs as “mild problems”.
I think it’s also, also something very big culturally, you know, where it really feels like a weakness to be ill and just, you know, I’ve just got a lot of shame about having such a constant seemingly mild problem that causes me so many problems. Yeah, because there’s definitely a lot of culture, you know, my family, things like that people think I haven’t seen a GP for thirty years or, you know, things like that and it’s very unhelpful that kind of, that kind of way of looking at our bodies I suppose. I think that that really has an effect on people who, where that’s just not their reality where they can go around as if they don’t have a body, you know, yeah. That definitely played into my relationship with my husband I think as a as a man who doesn’t have any health problems, I think he definitely has this where he just sort of thinks, ‘How can it be such a constant thing in your life?’ you know, I think he just doesn’t, doesn’t understand.
Anna describes the challenges she faced recently when trying to get treatment from her GPs and was told to call 111 instead.
Anna describes the challenges she faced recently when trying to get treatment from her GPs and was told to call 111 instead.
But, for example, the last time I had to get antibiotics before I had my self-start I, my GP practice you can’t call in to book an appointment, you have to fill in this e-consult thing.
So, I filled a e-consult one night and I said, “I’ve got a UTI,” and I explained to them, “I’ve got this long history of UTIs I need some antibiotics.” And I didn’t hear anything from them, so I rang, I rang someone the next day and I said, “it an urgent thing, do you want me to ring 111.” I said, “Well I don’t need to ring 111. I’ve got a UTI. Like I don’t-,” because to me I think maybe 111 is being used differently but to me that would be if it was more serious, so I said, “No I don’t, I just, I just need antibiotics, it’s not, you know, I don’t need to seek any further treatment.” They said, “No you will need to go because we don’t have any availability anyway for today.” So, I rang them, and they said, “Yeah you’ll need to be seen within two hours. Ring your GP back and ask them, you know, to arrange something for you.” So, I said that to them, and they said, “Okay the doctor will call you.” The doctor didn’t call me all that day. The next day and I called 111 and said, “I never heard anything back from them the day before.” and they said, “Okay, we’ll call your GP practice. You don’t need do anything, you’ll hear back from them.” So, the GP practice later that day eventually calls me back. Three days after I initially tried to seek treatment and they said, “Yeah you need to come in and provide a sample.” And I said, “I can’t come in and provide a sample, you know, I’ve got, I’ve got my children here. I don’t drive it’s very difficult for me to do that,” and they said, “No our doctors will not, will not prescribe any antibiotics without a sample.”
Anna has felt that there is a barrier when she tries to share what she knows about UTI with a healthcare professional. She would like them to acknowledge where there is no medical certainty.
Anna has felt that there is a barrier when she tries to share what she knows about UTI with a healthcare professional. She would like them to acknowledge where there is no medical certainty.
Yeah so I just, you know, the way that you can be treated can be very paternalistic and it actually frustrates me more when I feel like they’re not being paternalistic with me because I sometimes feel with primary care if you, if you reveal that you have really any level of knowledge of the situation, if you really, you know, even if you know the name of the antibiotics you want to be prescribed, they’ll say to you, “Oh are you are you medical, do you have a medical background?” and I see that as quite [sighs] you know, like quite a harmful idea, you know, I really feel like there’s this idea that this is a big barrier between any knowledge, you know, I understand, I can understand GPs have a negative impression of people using the internet, patients come to them saying, “Oh I think I’ve got XXX” or something but I really feel like they want, you know, to me I perceive that comment that I have all the time to be they want to have an explanation of why you want to have any real knowledge about your situation.
I say, “Well, no I don’t have a medical background.” I can just read and I’m obviously going to try and research this because, you know, the thing is I wouldn’t, you know, I think there’s a group of women who’ve been driven quite crazy by this, you know, they’re there’s qui-, there’s no explanation for what’s going on with them and so they’re very, very invested in this embedded infection idea and they feel really emotional about it and I can understand it but I think it’s probably quite negative that’s happened to them but that’s what’s going to happen if the received wisdom about what’s happening doesn’t make any sense. So I really feel like an acknowledgement of the uncertainty would be, would be helpful.
Anna, who has problems with UTIs, feels that the strong link between sex and shame in society means that at times she feels that pain during sex is a “punishment”.
Anna, who has problems with UTIs, feels that the strong link between sex and shame in society means that at times she feels that pain during sex is a “punishment”.
I also am very aware of my bladder when I’m having sex, I can feel that it’s tender and also the fact that it would, the UTIs are so triggered by sex and then I think obviously there are all different received understandings of sex and shame and things like that so if you also get struck by, you know, what I kind of visualised my mind is kind of like, I feel like I’m going quite wayward now but just these demonic spasms in my bladder, you know, I think these really they all start tying together and you kind of feels like, would it be extreme to say that I am being punished but, you know, it really feels like something abnormal is happening.