Urogynaecological conditions: prolapse, bladder and pelvic floor problems

Having tests and examinations

This section covers:

  • The different tests and examinations for urogynaecological symptoms
  • Pelvic examinations
  • Tests about urine flow and control (urodynamics)
  • Tests for urine infections
  • Scans and investigative procedures 

In this section we use the terms:
Pelvic organ prolapse (prolapse) is a condition in which pelvic organs, like the bladder and uterus (sometimes called the womb), move down or slip out of place and may bulge into the vagina.

Urinary incontinence is the unintentional loss of wee/urine. There are other bladder symptoms that do not involve incontinence, such as needing to urinate a lot, getting up at night a lot for a wee, or difficulties emptying the bladder.

UTIs (Urinary Tract Infections) are when bacteria infect the system that stores urine (such as the bladder). There are other types of conditions that can involve bladder irritation and pain, such as interstitial cystitis (also called bladder pain syndrome).

The different tests and examinations for urogynaecological symptoms

There are different types of tests and examinations for urogynaecological symptoms. These include pelvic examination, tests such as urodynamics or urinalysis (e.g. a dipstick urine test), and procedures such as ultrasound and surgical investigations like cystoscopy (where a camera is used to look inside the bladder). Many people we talked to had several different types of tests and examinations.

Kerry describes the process of attending the first appointment with her GP and finding out what her symptoms meant.

Kerry describes the process of attending the first appointment with her GP and finding out what her symptoms meant.

Age at interview: 61
Sex: Female
Condition: pelvic organ prolapse
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I really didn’t know what it was and when you go on the internet, you go on the NHS website it says, you know, sometimes these symptoms can be caused by vaginal atrophy, can be caused by vaginal dryness, can be, bl-, bl-, there’s a whole long list of things it can be so then I want, I want somebody to actually knows about stuff to tell me which one of those things it is.
 
Because we’re in the pandemic, so the first-, what they do first of all is they give you a telephone call and that was with a man, a male doctor and I found that quite difficult to talk to a man about it. And but he said, he was lovely, and he said, “Oh yes, come down to the surgery and we’ll get you booked in,” and they had booked me in with the female GP which was much better and she was lovely, she was just very matter of fact about it. She, you know, as soon as I lay down and you get into that sort of smear position, you know, with your legs apart and your ankles together and she said, “Oh yes I can see it.” Well, that’s not what you want to hear [laughs]. But yeah. And she did an internal examination and she said, “Yes” and she said, what sort of prolapse it was because at that point I had no idea and what stage it was so I think both of those things were helpful. But once you’ve got some information then you can go away and you can read things and you can look at things.

 


 
Some tests and examinations can be done by a GP or nurse at a GP clinic; others by a specialist, such as a urogynaecology doctor or nurse, or a pelvic floor physiotherapist. Some types of tests need particular equipment or facilities, or for a healthcare professional to have specialist training.
 
Examinations and tests for urogynaecological symptoms can lead to a diagnosis and give information, such as the severity or ‘grade’ of prolapse. The results of tests and examinations may be known and shared with the patient right away, or it may take a while to find out this information. Some people we talked to had not yet had any examinations or tests for urogynaecological symptoms. Others had several different types of tests.
 
Having tests and examinations to rule out other conditions or causes could be difficult, especially if the tests were unpleasant, invasive, or take a long time to be arranged and get results back. Penny described going through lots of “prodding and poking and testing… to try and find out what’s gone wrong”. The gynaecologist Vicky saw about bladder pain and urinary symptoms seemed to have “his own agenda that other things needed to be ruled out first”.
 

Dr. Sharon Dixon, a GP, describes the thought processes a GP might go through when they see a patient with bladder, urinary or pelvic symptoms, and why it’s important to rule out other causes.

Dr. Sharon Dixon, a GP, describes the thought processes a GP might go through when they see a patient with bladder, urinary or pelvic symptoms, and why it’s important to rule out other causes.

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So an example of that might be where someone’s come with pain and bladder frequency and you're thinking, ‘Well, this probably is bladder pain,’ but I need to just step back and make sure that I haven’t thought, could there be something else happening in the pelvis that might be pressing on the bladder, or that I need to be thinking about? So kind of any red flags. Is there any bloating in someone who’s gone through the menopause where I might want to just make sure that I've thought, could there be an ovarian cause? Have I done the blood test about-, that might look into that, if I need to? I think all-, you know, as an example of that, have I done everything I need to do?

I'm checking that there isn’t an infection when I did the urine, but actually is there non-visible haematuria? If there is, kind of has it persisted? Have I explained it? Have I done everything that needs to be done about that? You know, so those kind of red flags and the pathways that you also might need to be following. And you can often do it in parallel, and kind of-, then it’s just making sure that you've got that shared understanding that you are hearing about what symptoms they've come with and that are important to them, and that you're going to be able make a plan, hopefully, to help with those symptoms, but you're just taking that moment to take stock and make sure you've thought about all the other things, as a GP, that you need to think about, where they might be other things that you need to do to make sure that-, that things are cared for appropriately really and that it’s safe and all done in a timely manner.

And I guess that’s also true about that kind of intersection between what somebody’s coming in with now as their most difficult symptom, but, you know, sometimes it can be quite complicated when there are other illnesses, and other conditions, and you're balancing all of those things. You know, so for an example, if somebody’s got really significant bladder pain but they've also got endometriosis, it’s about making sure you've stopped and thought about how those intersect and how you can understand which one might be the kind of most important one to tackle first in order to relieve all of those difficulties. Or where you might be thinking about a difficult balance between medication, where someone’s got really significant kind of difficulties with the bladder and with the-, managing the urine and how that’s affecting their life, but where they might also have something like heart failure, or a heart condition, where they're needed to take diuretics or water tablets.


 
Because healthcare professionals often do lots of medical tests and examinations on patients as part of their job, it can feel very normal and ordinary to them. For patients though, it can feel overwhelming, embarrassing and confusing. Alice wished she had been given more information in advance about the tests she had at hospital, as they were different to what she had expected.
 

Phoebe felt that her specialists sometimes spoke about her like a “slab of meat”, and lost sight of explaining things that were unfamiliar to her.

Phoebe felt that her specialists sometimes spoke about her like a “slab of meat”, and lost sight of explaining things that were unfamiliar to her.

Age at interview: 36
Sex: Female
Condition: pelvic organ prolapse
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Then he called a nurse to come to be sort of like a a, I don’t know what you’d- a chaperone basically and I’m, I mean when he called her, he stuck his head out and just sort of shouted down to the nurses station, “I’ve got another one for you.” Which I just felt so like a slab of meat. And I know it’s their day-to-day, they must get it all the time but I mean it’s quite, you feel so self-conscious anyway especially postnatally because I was a mess and he, yeah, so he then-, he does an examination, wouldn’t tell me what grade of prolapse I have. Said-, used lots of completely- I’m sure it’s completely correct of medical language but without me understanding what it is. He said things like, you know, using this term lazy and laxi-, lax-, what’s it called when it’s l, my muscles were lax basically but not explaining what that meant in relation to the prolapse. Wouldn’t give me a grade and then he said, ‘Oh we’ll talk about your surgery options.”

 

 

Pelvic examinations

Pelvic (or internal) examinations are a physical check of the reproductive organs. The patient is usually lying down, or they may stand or turn on their side as part of the examination. A tool called a speculum may be used to open up the vagina walls to help see inside the vagina. As well as looking, the healthcare professional may touch the vulval area (the outer part of the female sex organs) and vagina as part of the examination. 

Sharon requested to be examined standing up, in addition to lying down, to get more information about her prolapses.

Sharon requested to be examined standing up, in addition to lying down, to get more information about her prolapses.

Age at interview: 40
Sex: Female
Conditions: pelvic organ prolapse, stress urinary incontinence
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I finally did see an NHS gynaecologist, I was examined lying down and I, it was part of a med student clinic so I didn’t mind having, a med student having a go too and the consultant gynaecologist was kind of in the background and when we had the chat after I said, “Oh I forgot to ask to be examined standing up,” and she said, “Oh we used to do that, we used to put women in to all kinds of standing positions and squats while we examine them but we felt it was undignified,” and I was so shocked that she said that but for me it was such a teachable moment because I had this med student in the room and there were, the session was being recorded for med students and I said, “Actually, what I think is undignified is having waited for months and months and months for this appointment and leaving here like I don’t have a full picture of what’s happening in my body?” and for some of us with prolapse, gravity has a big role to play so yes give women the option of being standing. Some of them won’t be comfortable with it but for me, yeah, I do wanna know does my, does my prolapse grade change if I’m examined when I’m lying down versus if I’m examined when I’m standing, that is useful information for me so I don’t feel it’s undignified, and I don’t think a health professional should be using that language. So yeah, I was pretty proud that I said, “Well undignified for who?” [laughs].

 


  
People can ask to have a chaperone in the room with them for a pelvic examination. Vickie appreciated the “camaraderie” of the chaperone when she had an internal examination at her GP surgery around 8 weeks after giving birth. The patient can ask the healthcare professional performing the pelvic examination to stop at any time.
 

Dr. Sharon Dixon, a GP, recognises that internal examinations can be difficult for some patients and how she might support someone who has concerns.

Dr. Sharon Dixon, a GP, recognises that internal examinations can be difficult for some patients and how she might support someone who has concerns.

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I would try and explain the importance of examinations. So why-, why it matters, how it can help, and how we might be a bit more limited in understanding what’s happening with their symptoms that are causing them trouble. You might want to explore what their worries are about examination, and whether there’s anything that you could do that might make that less worrisome, to work towards it. Sometimes it would be worries about things like a speculum and-, and thinking about the progress that you could make in understanding those symptoms without using a speculum, might for example sometimes help you get to that point. Sometimes it’s about feeling ready or prepared, and people will say, ‘I don't want to be examined today,’ but then being flexible about a time when you could examine them, sometimes the people might want a longer appointment or something with them. So I think it’s about trying to understand what the barriers are, and work with that person as much as you can to create a space where you can reduce or make those feel more manageable. But ultimately if someone doesn't want to be examined, then-, then-, then they're not going to be examined.


 
For most people we talked to, a few minutes of discomfort or embarrassment during a pelvic exam were seen as worthwhile in order to be properly checked over. Cynthia appreciated that her GP “had a quick look” and was “very straightforward” in confirming she had a prolapse. Sue Y saw it as “just one of those things you have to do” and that “it doesn’t really bother me”. Sue X says that, since having children, she feels “less precious” about pelvic examinations.
 

Jan encourages uptake of pelvic examinations to get answers.

Jan encourages uptake of pelvic examinations to get answers.

Age at interview: 66
Sex: Female
Conditions: pelvic organ prolapse, urinary urgency, urinary incontinence
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I would much sooner have somebody check down below and help me with the conditions. It only lasts for five or ten minutes. They’re so kind, they’re so thoughtful. I would, I like to be informed so for me it’s all about, please yes check me as much as you need because if that can help me have a better quality of life, it’s well worth that embarrassment for five or ten minutes.


 
A few people talked about insensitive or inappropriate comments during the examinations, which made them feel vulnerable. A physiotherapist asked Catherine if she needed a poo during a pelvic examination, which left her “really paranoid” about losing control of her bowels. Chloe said it was very important for healthcare professionals to help patients feel “comfortable and relaxed” before and during a pelvic examination.
 
Sometimes there were additional reasons why someone might find a pelvic exam particularly distressing, including past experiences of traumatic medical events or sexual abuse.
 

Jessy hasn’t seen a doctor about her urinary incontinence, as she expects she would need an internal examination. She had distressing previous experiences of internal examinations and having a coil fitted.

Jessy hasn’t seen a doctor about her urinary incontinence, as she expects she would need an internal examination. She had distressing previous experiences of internal examinations and having a coil fitted.

Age at interview: 46
Sex: Female
Conditions: urinary incontinence, urinary retention, UTI
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[In past internal examinations and coil fittings I’ve had] they move your parts inside or, or they pull things to, inside you but then I don’t know when are they going to finish so I need somebody to be talking to me and saying, “So listen, I’m doing this and it’s going to be this, it’s doing okay, it’s just be a few more minutes,” and then also to be truthful, because when they said uncomfortable, uncomfortable to me is that you give me a pinch. You pinch my cheek, that’s uncomfortable. Not, what they call uncomfortable is excruciating pain. So, the last time I had, not this time, the previous time I had my, my Mirena coil inserted I was in such an agony, and they said to me, “Oh if you’re feeling much pain we will stop.” And then they didn’t stop, I was sobbing.
 
I find it [internal examinations] very undignified, you know, you know, I have to take my pants and then they, of course they’re not seeing me naked, I know, of course they put a thing for, just the fact that you have to put your feet on those metal reins and open it up, and then pretend nothing is happening. And then they insert that thing that sometimes is very cold, uncomfortable.
 
And I’m terrified, I’m just like mm, nah, maybe another day, nah. No. So I’m avoiding it [seeing a doctor about urinary incontinence], I literally avoiding it, consciously avoiding it. 
 
And it’s really worrying because I know that at some point I can actually physically force myself to just to go the doctor, but then for some other people no, and then might not be the case, and then it can cause even more problems, because-, in the long term.
 

 

Jamie was sexually abused as a child, and this history has an impact on her when having pelvic examinations. She thinks it’s important to let healthcare professionals know, and for healthcare professionals to listen to patient preferences.

Jamie was sexually abused as a child, and this history has an impact on her when having pelvic examinations. She thinks it’s important to let healthcare professionals know, and for healthcare professionals to listen to patient preferences.

Age at interview: 48
Sex: Female
Conditions/symptoms: urinary incontinence, mesh complications
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I think the first thing is, I think it’s important for the patient to tell the healthcare person but I think like before a nurse does a smear, I think that they should ask the patient what they’re comfortable with. You see for a lot think ‘oh you need to go slow, explain every step and talk really calmly to them’ but for some people like me, I’d prefer them to get on with, get it done, just do it the quickest speed you can safely but just get it done. Some people would probably prefer it to be slow like that, but I think there needs to be a conversation before anything’s done to sort of try what is best for you kind of thing and that isn’t asked. I’ve never been asked what is best for me, I’ve had to tell them.
 
Mostly they [healthcare professionals], they respect what I’ve said and they just get on with it. Some of them talk to me because they realise that talking out, I tell them I talk, so if it’s possible for them to talk while they’re doing what they’re doing then do that and like when I was having the ultrasound, the internal ultrasound there was a female care assistant with him and she was brilliant and she just talked to me, asked questions about my kids that sort of thing. So which is a distract-, for me that works but like I said the con-, there needs to be a conversation before anything is done to accommodate the individual person because we’re all different. Everyone who’s been abused deals with it differently.
 

 


 
Vickie, Pauline, and Sharon, amongst others, had experienced times when healthcare professionals seemed reluctant to do a pelvic exam. Vicky felt that her consultant made assumptions: “I felt [that he thought] he was doing me a favour by saying he wouldn’t examine me, wouldn’t put me through an examination, whereas I actually wouldn’t have had any issue with being examined… [if] it might have helped diagnose my issues”. When women had directly asked for a pelvic examination but had not been given one, or instead, like Sharon, only a “cursory external exam” it felt the healthcare professional was not taking their health concerns seriously.
 

Vickie asked her GP to examine her at the 6-8 week postnatal check. Her GP seemed reluctant and she initially felt “a little bit guilty” about this, but then felt “cross” that she had needed to insist.

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Vickie asked her GP to examine her at the 6-8 week postnatal check. Her GP seemed reluctant and she initially felt “a little bit guilty” about this, but then felt “cross” that she had needed to insist.

Age at interview: 33
Sex: Female
Condition: pelvic organ prolapse
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So yeah I went in to do the check and straight away, as humans do, right, you gravitate to baby because they’re lovely and cute and they’ve got these cute chubby cheeks and whatever. And my son was asleep at the time so I said, “Actually while he’s sleeping, can I just talk to you about some of the difficulties that I’ve been having?” and he seemed quite surprised and again maybe it’s because I look younger or whatever but. So I explained that I had this dragging sensation, it doesn’t feel right and he, he qualified my situation, first kind of vaginal delivery, “No, it won’t be, I’ll have a look but-,” you know, and I think I asked three times, “I really-, would you look? Could you check for me? Because I don’t know what I’m looking for, you know, my episiotomy’s healed but has it healed? Is it that what’s causing the problem? I don’t know.” So, I went in completely ignorant, but I did have to ask him quite a few times. He then called for the chaperone, she was lovely and she was like, “Don’t worry, I had a nine and a half pound-“ you know, that kind of camaraderie, at that kind of awkward moment when people are staring down your vagina. You know, I get it, you kind of make the, the small talk. And then even, I was quite swollen at the time and I remember he didn’t, he didn’t want to perform a full, like get the speculum and he was very much, “Oh yeah okay, that’s enough,” and kind of sat down so I, I very much felt that he felt uncomfortable. And at first I felt embarrassed and a little bit guilty for making him feel uncomfortable and then I got a bit cross actually, having come away from the appointment and thought ‘You wanna be a GP mate, these are, you know, these are the things you need to do.’

 

Several years ago, Pauline went to her GP with suspected prolapse symptoms. She felt her GP was not interested in examining her, which she thought was to do with NHS funding cuts.

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Several years ago, Pauline went to her GP with suspected prolapse symptoms. She felt her GP was not interested in examining her, which she thought was to do with NHS funding cuts.

Age at interview: 83
Sex: Female
Condition: pelvic organ prolapse
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I used to go to this doctor years ago who was-, she didn’t seem to realise that people with prolapse should be treated.
 
I had to go and see the top man at the surgery to get him to examine me.
 
I think it was the time when the cuts started in the hospitals.
 
Things started to be-, and people, well it was the NHS because they only wanted people to go to the hospital with urgent, for urgent treatment.
 
I had to do it, if I wanted treatment. And then I was working, don’t forget. At the time and I had to do something about it.
 

 


  
A few people said they would rather have a female doctor or nurse do the pelvic exam. Jessy explained that she would “just feel really uncomfortable” with a male doctor. Jenny tended to see a female GP, but wondered if this meant they then get “fed up” of doing intimate examinations. Others, like Mary X, said they didn’t mind about the gender of the healthcare professional. Chloe felt that “expertise, experience, knowledge” was more reassuring than “lived experience or gender”. 

Tests about urine flow and control (urodynamics)

Urodynamics are tests usually done at hospital which measure urine flow, control, and retention. These tests were sometimes used to rule out other problems, for example Leah had urodynamics to check that “there’s nothing structurally wrong with you that could be meaning that you’d get increased UTIs”.
 
For a few days before having urodynamics, ‘bladder diaries’ were often completed, which involved measuring and recording fluid input (how much they drink) and output (how much they wee out) at home, as well as the types of liquids someone drinks.
 

Minnie had to measure her urine input and output in order to complete paperwork for incontinence pads. She found the process challenging, and it left her feeling “very, very tired and very, very down”.

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Minnie had to measure her urine input and output in order to complete paperwork for incontinence pads. She found the process challenging, and it left her feeling “very, very tired and very, very down”.

Sex: Female
Conditions: urinary incontinence, urinary urgency, urinary retention
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I later spent three days collecting all the data they wanted, blah blah blah, filling in forms they wanted. There are problems with that because they’ve used medical jargon that I certainly don’t understand it all, but looked up what I needed. Problems with the BMI. I did check with a friend of certain, age, who didn’t do algebra, so they don’t know what x2 relates to in the BMI equation. I looked it up, there’s also a different system that the Australians use, to what the British use. And I grew up with feet and inches, and pounds, ounces and stones. So, I did do a conversion but I would say not everybody of my age would be able to do that, or have conversion tables for reference. They might not have the equipment. Neither did I have a very clear measuring cylinder, so you could work off the cubic centimetres or millilitres or whatever you want to do it in. I had to make do with some plastic things I’d got and it was very, very difficult to read off the numbers. So instead of having to get up and nip to the bathroom three or four times at night, and then nipping back to bed, I went through all this data gathering for these days and nights. And it’s left me very, very tired and very, very down.
 

 


 
There are various urodynamic tests and techniques, and these can vary from place to place and over time. Some tests look at the amount and speed of urine released. Others look for urinary leaking with particular activities, like jumping or coughing. Devices like probes and catheters may also be used as part of these tests, as for Katy, Emma, Elizabeth, and Mary Y. Megan and Elizabeth had ultrasound as part of urodynamics to check for urine retention.
 

Vicky describes what happened when she went for urodynamics.

Vicky describes what happened when she went for urodynamics.

Age at interview: 61
Sex: Female
Conditions/symptoms: bladder tingling, urinary frequency
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To explain urodynamics, you’re tested for a UTI first, you give a, you have to give a urine sample then you are attached by a catheter and probes, one goes in the bum to a machine and your bladder is slowly filled with 500 millilitres of saline, I was then asked to stand on blue paper towelling, this was the funny bit right, well I thought it was funny, and asked to touch my toes, cough, and do jumping jacks. I didn’t have any issue with this, I offered to do star jumps but they didn’t, you know, didn’t find it funny. I was then left in peace to empty my bladder while the machine, you know, measured that I could empty it fully. I didn’t have a problem, didn’t lose a drop, a drop on the activities I was asked to do and, and that was that.


 
Looking back, some people had found the urodynamic tests unpleasant and embarrassing. Emma described the process as “just quite bizarre”, particularly because it was in the corner of a ward rather than a consulting room. Mary Y found it “mortifying” and Vicky said it was “quite undignified”.
 

Gwen had a “dreadful” experience of urodynamic testing.

Gwen had a “dreadful” experience of urodynamic testing.

Age at interview: 72
Sex: Female
Conditions: recurrent UTI, pelvic organ prolapse
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He sent me to another hospital for the uro-dynamics assessment prior to surgery, because he said he didn’t have that facility locally. And I think that the whole experience scarred me to be honest, because I got sent into a little room to change into one of the hospital gowns, you know that don’t fasten up at the back. And then I had to walk from the changing room in that across a busy corridor into this clinic. And there were two very young nurses there, doing this you know drinking this and jumping up and down and measuring how much you were wetting yourself. It was dreadful. And then at the end of it they decided, well what they said to me was that I really ought to accept that I was now incontinent and instead of using sanitary pads to cope with it, I should now go to a supermarket and buy some incontinence pads. I don’t know why they thought I was there; I don’t think they had the whole picture of me but this was part of an assessment. I was 43 years old. And I, I’m choking now thinking about it, and I came, came out of there and I just thought, ‘I don’t believe this.’

 

Megan felt “vulnerable” when she had urodynamics, but praised the healthcare professionals who were “very supportive” and put her “at ease”.

Megan felt “vulnerable” when she had urodynamics, but praised the healthcare professionals who were “very supportive” and put her “at ease”.

Age at interview: 28
Sex: Female
Conditions: chronic UTI, painful bladder syndrome
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And it is like, I know it’s got to be done, but you, it is quite embarrassing, cos you think like sitting on the commode and you’re going to the toilet, and stuff, and you’ve got to get your ultrasound, and you just think like I feel really like a bit vulnerable, because like with being young and stuff, you don’t expect to have like bladder problems so young, and things. So but all of the healthcare professionals that I have like come into contact with have been very supportive and they’re very good and put you at ease and stuff, and make sure you’re like, you don’t feel like your dignity has gone, like they make sure that’s there and stuff. And make you comfortable during it and like answer all your questions and everything, so that does make a huge difference as well.

 


 
Having information in advance about the tests and potential side-effects was important. Vicky had received a helpful booklet which highlighted that she should drink plenty of water afterwards and that there was a risk of UTI. But Alice felt that she hadn’t been told enough. 

Alice attended hospital for a flow test. This was not a good experience, as she hadn’t been given any instructions beforehand, was separated from her parents, and the process was different to what she had expected.

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Alice attended hospital for a flow test. This was not a good experience, as she hadn’t been given any instructions beforehand, was separated from her parents, and the process was different to what she had expected.

Age at interview: 28
Sex: Female
Conditions: overactive bladder syndrome, urinary urgency
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I wasn’t given any instructions beforehand. So I drank a bit more than I’d normally drink in the morning, went to the appointment, appointment was then, you know, basically I’d taken the morning off work. My, one of my parents had also taken the morning off to come with me cos I couldn’t get there by myself. Got there having not been sent any instructions, and clinic was then running like 40 minutes to an hour wait. I was then taken in by a healthcare assistant who was like, “Have you drunk like eight glasses of water this morning yet?” I said, “Well I’m, you know I’m very sorry I haven’t, I haven’t been sent any instructions, I’ve drunk like four glasses of water.”
 
She then put me in a room on my own, away from my parents, and said, “You’re going to be here for an hour and a half at least, you’ve got to sit in this room and drink 8 glasses of water, one after the other. And then we’ll do the test and then you can go.” So obviously at that point, you know, I was really anxious because I’d been separated from my parents who came with me to support me, to be an advocate for me, because of my conditions, and yet they were put in a waiting room at one end of the corridor and I was at the other end of the department by myself and not really knowing what was going on. So I was obviously quite anxious. I physically couldn’t drink 8 glasses of water back-to-back, at that point I really needed a wee. And when you need to go, you need to go. I’d been, already been hanging on and I’d got up at half past seven, and this is now like 11 o’clock in the morning and I hadn’t been for a wee since I got out of bed. So I was pretty desperate, but, and they were having none of it, it was like, “Drink all this water, and then we’ll do the test.”
 
Eventually they came back for me, sent me to wee on a commode effectively, and basically, they made an appointment with the consultant. I was just completely horrified. I suppose, 1) you know, as I say, I hadn’t received any information in advance, and I thought a flow test was to measure the flow. Not like collecting your urine in effectively a bottle underneath a commode.

 

 

Tests for urine infections

Tests which look at and analyse the contents of urine are used to diagnose urinary tract infections (UTIs). One of the most common urine analysis tests is a ‘dipstick test’, in which a paper strip changes colour if certain substances are present when dipped into a sample of urine. Other types involve sending a urine sample off to a laboratory to grow a culture to identify a particular bacteria causing the infection. Lab-based tests can give more information, for example, about the best antibiotics for a specific type of infection, but it does mean waiting for results. Gwen had also bought UTI test kits, which are sold online and in some shops, to use at home.
 
There were some practical issues raised about urine samples. Anita pointed out that it is not always very easy to produce a urine sample on demand, for example at a GP appointment, especially when you don’t have a full bladder. Clare found that getting access to drop off a urine sample at a GP clinic was difficult during the pandemic. Rebecca had a urine sample go missing because of a miscommunication when it was sent off to a lab.
 

Jasmine’s GPs managed her UTIs as one-offs and didn’t seem to be interested in the recurrence or underlying causes. She had just moved to the UK, and worried she might be seen as a “hypochondriac”.

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Jasmine’s GPs managed her UTIs as one-offs and didn’t seem to be interested in the recurrence or underlying causes. She had just moved to the UK, and worried she might be seen as a “hypochondriac”.

Age at interview: 34
Sex: Female
Conditions: UTI, urinary incontinence
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When I had the recurrent UTI, I think, I was new to this country so I feel if I’m now again having this problem I’ll like ask them to bloody investigate it, I think I’d just say I’d be more like assertive to say “No I have it like now three times, four times, I mean can you check what’s wrong with me or like check maybe, I don’t know my daily life for me I don’t know what I’m doing wrong?”
 
She was a bit hesitant and I felt like I think it’s always as a patient you don’t want to be looking like I think there is always the fear that you look like a hypochondriac, how you say, hypochondriac. [Laughs] Its’s just like you are too much pushing so I think I’m already into this like worried a bit and then, and I’m I think as a person I’d say yeah I don’t, I’m not like gonna go yeah I want this [laughs] but I was like, I think I was like no can you please just check it for me.

 


 
Urinary infection tests were an important topic for everyone diagnosed with recurrent, embedded or chronic UTI. Holly, Phyllis, Leah, Melanie, and others, described frustration and concern about the common use of midstream urine (MSU) samples and dipstick tests. They had been told that these test results were negative (indicating no infection) when they had ongoing symptoms, and felt the tests had been wrong. Leah described “a ‘computer says no’” situation: test results come back negative and, in her experience, most doctors won’t then prescribe antibiotic treatment.
 

Jane has read research about urinary infection tests. She would like healthcare professionals to treat symptoms and to place less value on current tests.

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Jane has read research about urinary infection tests. She would like healthcare professionals to treat symptoms and to place less value on current tests.

Age at interview: 54
Sex: Female
Condition: persistent UTI
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And, and as I understand it the model suggests that not only is the bladder not sterile, which means that dipsticks are kind of pointless anyway, but that culturing is much better but the culturing criteria are really inappropriate, and so the threshold that what looks like a problematic urine culture is, is, is way too high in fact and actually it needs to be set much lower. And this is culturing criteria based on you know a study done in 1950’s of pregnant women, inappropriate for today and for the full population.

Anyway most of us who feel strongly about this feel that those women who, who walk into a surgery today or do it at home, if they’re lucky enough to have a sample bottle, and the dipstick says no infection, should take that with a pinch of salt, and some of these clinicians treat on symptoms, like they did in the old days, before people had these technologies, if a woman seems like she has a urine infection, treat it as if she does.

 


 
Those people now diagnosed with embedded or chronic UTI felt that healthcare professionals had tried to ‘explain away’ their ongoing symptoms when they had a negative urine test result. Mehar’s GP suggested “therapy instead of doing further tests” and she started to think “maybe it is in my head”. Jane started doubting herself too: “I must be better because the dipstick said I was better”.
 
A few people had been told that there was a problem with their urine sample. Holly and Jane were told that their urine had ‘mixed growth’; they later learnt this meant that the lab thought their urine sample had been contaminated (for example, when the sample was collected or by bacteria from the outside of the container). Parminder and Jane had been told that blood in their urine samples must be menstrual blood, even though they knew this was not the case.
 

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.

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.

Age at interview: 34
Sex: Female
Conditions: recurrent UTI, chronic UTI
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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.

 


  
Some women who felt that the urine tests available from NHS GPs were not picking up infections had since gone to private clinics. Here, other types of urine tests, like the ‘broth test’, where a urine sample is incubated in a ‘broth’ and tested over time, were available. After being told repeatedly that she didn’t have a UTI based on dipstick tests, it was “really important” for Leah to “hear that validation” when a test at a specialist UTI clinic identified an infection. Laura has urine tests every few weeks at a private clinic, to track any improvements on the long-term antibiotics.

Scans and investigative procedures for urogynaecological symptoms

Other tests and investigations for urogynaecological symptoms include ultrasounds, MRI scans, and cystoscopy (a procedure which use a camera to look inside the bladder). Not all of these tests are routinely offered on the NHS, and some people we talked to had them privately. These tests were often suggested to patients after they had already had some tests and examinations. This was the case for Laura who first had urine analysis and flow tests, and then an ultrasound. She was also offered the option of having an MRI or cystoscopy, but she decided these probably wouldn’t be helpful and would be too costly as a private patient.
 
As with other tests and examinations, scans and investigative procedures can identify or rule out problems related to urogynaecological symptoms, and sometimes also identified other health issues.

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

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

Age at interview: 34
Sex: Female
Condition: chronic UTI
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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.

 


 
Georgina, Helen, Anna, and others had ultrasound scans of the bladder and/or kidneys. Helen also had an MRI to investigate bladder symptoms. Most people we talked to had found these scans okay, but urine retention is a possible complication after an ultrasound that Alice experienced.
 

Alice had an ultrasound of her bladder and kidneys. Afterwards, she had some retained urine and was readmitted to hospital, which was frightening as she was shielding at the time.

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Alice had an ultrasound of her bladder and kidneys. Afterwards, she had some retained urine and was readmitted to hospital, which was frightening as she was shielding at the time.

Age at interview: 28
Sex: Female
Conditions: overactive bladder syndrome, urinary urgency
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It was the first time I’d actually been through a bladder and kidney ultrasound, it was something I wasn’t familiar with. So being the sort of person that follows instructions down to a T, I obviously followed the instructions and went for my scan and [afterwards] was unintentionally withholding. So I get a worried phone call from my doctor, my GP, about two days later to say, “Oh, we’re interested-, we’re following up from the, from the specialist because you are all like basically retaining far too much and, you know, this is like a medical emergency”. Then I ended up in my local A&E department, which at the best of times is a pretty traumatic experience for anyone, and then in the middle of a pandemic when you’re shielding, it was even more traumatic. And thankfully my mum was with me and was very, very supportive.
 
I got let out and was no major cause for concern. But again do a scan, did blood tests, monitored me, stuff like that. And then-, and then, yeah, waiting for results and stuff, and discharged me later that evening. I’d been seen by an on-call registrar, but it was a little bit-, how can I put it, surprised about my complex medical conditions and didn’t particularly understand, referred me back to my GP, to then onwards refer me to urogynae because they didn’t really know what to do with me.

 


 
Helen, Vicky, Amy, Laura, and Mehar also had pelvic ultrasounds. Amy hadn’t been offered any tests until she saw a doctor privately. Vicky had an ultrasound which found uterine fibroids which initially she and her doctors thought might be causing her urinary symptoms, by pressing on her bladder. Amy’s ultrasound showed she had a levator avulsion (a birth injury in which the levator muscles are stretched or torn), which is associated with prolapse. She found it helpful to know about this, and thinks that all women with urogynaecological and pelvic floor problems should be offered these scans to get “a fuller assessment of what’s wrong”.
 
Cystoscopy is a procedure that inserts a tube with a camera to look inside the bladder and urethra. The images produced can help find the causes behind frequent UTIs, bladder pain, or urinary incontinence. Georgina, Holly, Leah, and others had cystoscopies.
 

Holly has had several cystoscopies (a procedure to look inside the bladder) for UTIs. She describes two types of cystoscopy, and the outcomes she’s had from these investigations.

Holly has had several cystoscopies (a procedure to look inside the bladder) for UTIs. She describes two types of cystoscopy, and the outcomes she’s had from these investigations.

Age at interview: 57
Sex: Female
Condition: chronic UTI
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Okay well there are two types of cystoscopy that you can have. There’s one called a flexible cystoscopy where they put a very narrow tube with a camera in, into your bladder, and they can have a good look round and see if they can see any lesions or any sort of abnormal growth, but what they can’t see with those, and I suppose what you can’t see with the naked eye is infection. You would just be able to see sites of inflammation where there is infection. And that’s done as a day case procedure under local anaesthetic in hospital. And it’s pretty quick. And then you can have something called a rigid cystoscopy where they might give you a general anaesthetic, and they, that’s also got a, it’s a, it’s an instrument with a camera in the end and they insert it through your urethra up into your bladder and have a good look round and see whether they can see anything that might be causing your issues. The only problem that I’ve found with having cystoscopies is that they can stir up an infection so you might go into hospital feeling well, and then after the cystoscopy, the infection, you might get a urinary tract infection because of the procedure, which you know then might take a few weeks to settle down. So, I think the cystoscopies that I’ve had have never actually shown anything apart from a little bit of inflammation in the trigone area of my bladder, which is the neck of your bladder. I’ve sort of looked back with hind, you know with hindsight and think, ‘Oh well I’m not really sure that that was worth the, the hassle and the effort.’
 

 


  
For some people, these procedures could be painful or invasive. Leah was in quite a lot of pain afterwards, and several people like Rebecca talked about weighing up the risks of side-effects like new UTIs and flare-ups. Phyllis developed a UTI after one of her cystoscopies. Sue X also underwent bladder imaging, which she didn’t find troublesome at all.
 

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

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

Age at interview: 41
Sex: Female
Condition: persistent UTI
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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.

 

Sue X didn’t feel affected emotionally by her bladder imaging. She thinks this may be related to having children, which she found “changes your perception” of invasiveness.

Sue X didn’t feel affected emotionally by her bladder imaging. She thinks this may be related to having children, which she found “changes your perception” of invasiveness.

Age at interview: 72
Sex: Female
Condition: overactive bladder
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When I first went I had to go for a wee and I had to make sure that I had completely emptied my bladder, and the doctor didn’t feel that he, there was still some teaspoon full left, but you know whatever, but I don’t, he must’ve then recommended the hysteroscopy.
 
It didn’t, it didn’t particularly affect me going to the hospital for tests and having invasive investigations.
 
Well if you’ve had children, I think it changes your perception of these things, don’t you? You know.
 
You’re less precious about your-, maybe it’s just me, you’re less precious about your body somehow, and I had the first caesarean was under anaesthetic, but the second two were elective, you know because my pelvis was too narrow, so I was conscious, that I had them with epidurals, and you know when you’ve got people messing around in your insides, you know you, yeah, I don’t know.

 


 
Procedures like cystoscopy can be investigative, but they are also part of the process in some surgical treatment procedures. This was the case for Mehar, who also had Botox injections into her pelvic floor muscles, and Megan and Phyllis, who had bladder instillations.
 
Some people we talked to also had investigations into their bowels. Elly had had a sigmoidoscopy (an imaging procedure looking inside the colon and rectum). Holly had a gastroscopy and colonoscopy (imaging procedures to look at the upper part of the digestive system and colon) to rule out other causes for UTI problems. Elly and Sophie had both had MRI proctograms, which look at the way the rectum empties and how the pelvic muscles and bladder work when pooing. This procedure helped diagnose Elly’s rectocele (when the rectum protrudes into the uterus), and Sophie’s rectal prolapse (when the rectum protrudes down or through the anal opening). Sophie praised the healthcare professionals she saw, saying that, “as invasive as they [MRI proctograms] are and how undignified, …I was always treated with the utmost care and dignity… it’s not as horrific as it sounds”.

 

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