Getting a diagnosis of a urogynaecological conditions

This section covers:

  • Different urogynaecological diagnoses
  • The process of getting a diagnosis
  • Impacts and emotional responses to diagnosis
  • Urinary tract infection (UTI), bladder pain, and disagreements about diagnosis
  • Other uncertainties around diagnosis

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).

A diagnosis is a name or label for a medical condition. A healthcare professional can make a formal diagnosis or suggest possible diagnoses (meaning that they are suspected but not confirmed). For prolapse, diagnosis often also includes identifying a ‘grade’ or ‘stage’, which describes how far the pelvic organs have slipped down.

Kezia’s osteopath (an allied health professional focused on joints and bones) first suggested she might have a prolapse when she saw him for back problems and described some other symptoms. [Spoken by an actor]

And, you know, I sort of I said, “I can’t control-, I don’t feel like I can close my anal sphincter. I don’t feel like I know where anything is down there anymore,” and I was obviously very worried about that. And I hadn’t really suffered from urinary incontinence at all, but I had had an episode where I very, very urgently needed to move my bowels, and I did manage to make it to the toilet, but I sort of ran downstairs, you know, it was a, it was a close call and that obviously was quite worrying. Anyway, so I explained all this to the osteopath and he said, “Oh it sounds like this might be prolapse,” which I’d never really heard of. And he sort of said, you know, “Perhaps your uterus is kind of fallen down a bit,” and he, from the outside did quite a lot of lifting stuff up and stretching muscles out, and after he’d done that I sort of went to the toilet and I was able actually to kind of locate my pelvic floor a little bit more and also had a bit of sense of relief from the heavy feeling of heaviness.
 

 

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Getting a diagnosis was important to most people we talked to. Having a name for a condition helped some to make sense of symptoms and experiences, connect with other people with the same medical condition, and get access to suitable treatments and other types of support. Some people went in to see their doctors with possible diagnoses in mind. For others, symptom control was more important than having a label to describe their symptoms, or they felt a self-diagnosis was enough.

A diagnosis may be reinforced or revised and changed over time by different healthcare professionals and as more information comes from tests or in response to treatments.

Sophie had bowel symptoms which were originally diagnosed as irritable bowel syndrome, but she later discovered were related to having a rectocele (rectum prolapse into the vagina).

Because yeah, I would go to the loo, I’d have to strain and then wipe and never just felt like I’d emptied my bowels, and when I went to see the colorectal surgeon, he didn’t even examine me. He listened to me saying that I never felt I could empty my bowels and was, you know I’d have to go to the loo like multiple times in the morning to try and empty, and he diagnosed me, me with irritable bowel syndrome. 
 
Now in hindsight, I, it was, it never was, and it was never irritable bowel, it was, I’d had an obstructed you know what is called obstructed defecation because of the rectocele and it was because there was, you know the stool was trapped in the rectum and then just it was really hard to just physically eliminate it, so it was just always there. It wasn’t that I had this, you know sort of irritable bowel that was, you know just going to the loo multiple times a day. It was, you know I know now that it was definitely this sort of combination of sort of chronic constipation and obstructive defecation that I had.

 

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Different urogynaecological diagnoses

Those who had been diagnosed with prolapse sometimes knew they had a particular type, such as cystocele (prolapse of the bladder into the vagina), cystourethrocele (combined prolapse of the urinary tubes, known as the urethra, and bladder into the vagina), rectocele (prolapse of the rectum into the vagina), and/or uterine prolapse (when the uterus slips down into or out of the vagina).

We also talked to people who had been diagnosed with a particular type of urinary incontinence, such as stress incontinence (urine leakage when coughing, sneezing, or exercising), an overactive bladder, or urgency. Rosie had various urine flow tests, which included measuring urine input and output, and was diagnosed with stress incontinence. Others talked more broadly about having urinary incontinence.

Amongst those who had problems with bladder pain and UTIs, some described having frequent UTIs, recurrent UTI, embedded UTI (infection within the bladder wall), or chronic UTI. Others had been diagnosed with bladder pain syndrome (sometimes called interstitial cystitis). Diagnosis for these symptoms and conditions was an important topic, and you can read more below in this section about uncertainty and contested diagnoses (meaning that not all healthcare professionals and patients agree on it).

Megan saw interstitial cystitis as a diagnosis given when healthcare professionals “can’t find anything else that’s wrong”.

But when I was diagnosed with the painful bladder syndrome, and the interstitial cystitis, they didn’t know what caused that, cos they’re saying there’s no cause for that. You just get diagnosed with that when like they’ve checked all the other tests and they’ve come back negative, and that’s kind of just like, well that’s like your diagnosis because we can’t find anything else that’s wrong.

 

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A few people had never been given a particular diagnosis by a healthcare professional; this was the case for Jasmine, whose recurrent UTIs had always been treated as one-offs. Jessy knew she had urinary incontinence but was “avoiding” seeing her GP. She worried that getting a diagnosis or treatment might involve a pelvic examination, which she had previously found “traumatising”. Emma hasn’t seen her doctor about urinary incontinence. Based on what happened to her mum, she expects she would be prescribed medication and she knows she doesn’t want to take this.

María self-diagnosed her urinary incontinence. She doesn’t feel the need to see a doctor for the diagnosis and doesn’t think she would be offered any further help in terms of treatment or referrals.

I think also I started going to the gym before the pandemic, so I had, I was having more movements, more fluids coming on, so I would say like it’s been a process of working with myself you know, but also like getting to, to know me more. I think so. I think so, I mean like I don’t remember the day like I said, “Like oh yeah, it’s this.” But I remember that there was this process of saying like, “Yeah, it’s this.” And as I said I didn’t go to a doctor or anything because I don’t need a doctor to have a diagnosis.

 

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Some said that they did not have a definitive diagnosis, or that they said they would like further confirmation. After having had a rectocele repair 30 years ago, Georgina’s GP more recently told her she has “a bulge on your [uterus] back wall”, referring to prolapse. She “would like a proper diagnosis. …I would prefer to have investigations, I know many of them aren’t very pleasant, but I’d rather really try and know what’s going on”.

The process of getting a diagnosis

Diagnosis for urogynaecological conditions usually involves recognising symptoms and signs of a problem and having tests or examinations.

For some, getting a diagnosis can be a quick, one-time event. This was the case for Amy, Kerry, Mary X and Cynthia who had prolapses diagnosed when they had a pelvic examination by a GP. Jordan, who has recurrent UTIs that have always shown up positive in dipstick tests, has found it “quite clear-cut” getting UTI diagnosed.

For others, getting a diagnosis took a long time. This was the case for Vickie, Phoebe and Elly with their prolapses. Many, like Elizabeth and Leah, who had concerns that dipstick urine tests were missing UTIs when they had ongoing symptoms, found the process of getting an acceptable diagnosis challenging and exhausting, both physically and emotionally.

The uncertainty about Vickie’s symptoms had been distressing, and she felt healthcare professionals had dismissed it as normal. She had a “sense of relief” when she got a diagnosis of prolapse.

And then there’s all of the emotional, the emotional kind of impact and that anxiety around the ‘What if?’ I think early stage of diagnosis or awaiting diagnosis is really hard, really hard because you just don’t know what it is and you don’t, you don’t understand what your body’s doing from my experience of healthcare workers which is, “You’re too young, you’ve only delivered one baby. No, you’re wrong, it’s in your head, you’re just recovering.” And you know, you feel like an idiot and you feel like you’re wasting their time. And I think when I finally got to a gynaecologist and he confirmed, I just felt this sense of relief because I wasn’t making it up and I know my body and I know that it’s not right, and I think trusting women and empowering women to say, “No, you know, I need some help here,” earlier on would have had a, had a big difference both physically and kind of mentally and emotionally, I think that would have been huge. And I don’t want to criticise anyone directly because I don’t think anyone’s doing it to be difficult, I just don’t think they consider the wider kind of ripple effect of some of those stage gates being missed, I think that’s, that’s huge.

 

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Some people we talked to had been diagnosed with more urogynaecological conditions over time. Sharon and Alaina were diagnosed with additional prolapses when they were seen by another healthcare professional. Fiona was diagnosed with stress incontinence after previous prolapses had already been diagnosed.

Alaina had seen a gynaecologist who diagnosed her with a uterine prolapse and rectocele. Months later, she noticed new symptoms and was then also diagnosed with a cystocele.

I came away and even just over that weekend, I like could see something changed again down below and it felt different and so I thought like I had some kind of cyst or something and I went to the GP again and was really tearful and the GP was just very matter of fact, and he was like, “Yes, you’ve got a cystocele as well.” Went kind of down on this big spiral because I thought I must’ve done something to kind of cause that because the gynaecologist hadn’t mentioned that to me at all. And I spoke to the physio that I’d seen like just before the weekend and she said, “Oh yeah, I could feel that.” But she hadn’t told me. And then went just down like a huge kind of spiral really. In the end, I saw about five different physios. Life felt very, very bleak. I suffered like lots of symptoms for quite a while and it was really quite difficult. 

 

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A few had been living with an underlying condition or symptoms all their life. This was the case for Minnie, whose urinary incontinence is related to a nerve problem, and Alice, who has other health conditions, and had always had urinary symptoms.

Impacts and emotional responses to diagnosis

A diagnosis could give a sense of reassurance and relief. Jan described feeling “informed” and “at last I feel I can move forward and take control of my life again”. Being told she had additional prolapses was “hard news to get” for Sharon, but she was also “quite thankful” to “finally” get it confirmed. Chelsea said, “There’s something nice about having a word for something, just that simple thing of ‘this is what I’ve got’ was just quite refreshing” when she was diagnosed with interstitial cystitis as “a final ‘yes, this is definitely what’s wrong’ and I’m not imagining it”.

For Alice, having a diagnosis of overactive bladder and urgency has helped her make sense of her symptoms she’s had for a long time and to access support.

I’ve always had an urogynae condition, but I’ve never been diagnosed until recently. [I’m a] craniofacial patient, which is anything to do with face, the jaw, the head, all that. So I’ve spent like my childhood and adulthood in and out of hospital, all over the country, having various medical procedures to enable me to stay alive. And I’m registered blind and I’ve got a hearing impairment as well. I suppose because of all my other conditions I didn’t really seek any help or support in relation to my urogynae condition. Having diagnoses are important for accessing help and support. I’m learning more and more now I’ve got a diagnosis, that it’s more common that we think.

 

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Sometimes a diagnosis came as a shock. Catherine struggled to take in information after being diagnosed: “I switched off in the appointment because all I could think of is like, ‘Oh my God everything’s gonna fall out, I’m gonna now start weeing myself. …Oh my God, am I old? Am I broken?’” Alaina’s reaction to a diagnosis of prolapse was “grief… [for] a future that’s just kind of disappeared down the plughole”.

Catherine was “shocked” when she was told that she had prolapse.

Then the appointment came and I guess I was quite shocked when she said it because when you think of prolapses, I think the first thing I thought that my vagina was gonna fall out and you only really associate them with old people. You know, I’ve heard of old people having prolapses but no-one kind of like my age and within my friendship circle as well, I don’t know anybody else who’s had a prolapse either. So it was all kind of quite daunting really and I admit I did, once I came home, I did like, I felt quite teary because again I just, it was just the unknown really and I didn’t really know what I was going into.

 

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Emotional reactions to a diagnosis can change over time. Cynthia was relieved at first because she knew there was something wrong but “then what I went through over the next weeks and indeed months was much more complicated, …having to digest ‘actually, this is gonna be a long-term problem’”. Sharon’s “first instinct was to be fixed” when diagnosed with urinary incontinence and prolapse, but over time she’s come to think differently about treatment and recovery.

Sue Y’s GP told her she had prolapse, but it came as a surprise when a urogynaecologist confirmed multiple types: a cystourethrocele (combined urethra and bladder prolapse into the vagina) and rectocele (rectum prolapse into the vagina).

Well, I think because the GP when I first went to the GP she said, “Oh, it’s just a little, it’s just a little prolapse. No need to worry about it.” She didn’t say that I’d got both. So, y'know, as I say, I went away and thought oh well, y'know this is nothing, really. And when it and when the consultant told me that I’d got both then yes I was little surprised A) that the GP hadn’t specifically told me. And B) that I didn’t think I’d got both. I thought it was just more the urethrocele I’d got. So, yeah, so I was, I was a bit surprised and I suppose a bit upset. ‘Cos as I say, I don’t think of myself as an old person [laughs]. Even though I now know that it happens to lots of younger people.

 

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Along with the name of the medical condition, other information usually comes with a diagnosis. This might include the severity, suggestions about the causes or triggers, and available treatments such as medications, pessaries, and physiotherapy. There were different views about whether looking online for more information after a diagnosis was a good idea or not.

‘Prolapse’ – and specific types like ‘cystocele’ and ‘rectocele’ – were often unfamiliar terms. Sometimes a healthcare professional had explained what these meant, but others, like Phoebe, felt they were left to find out for themselves. Elly had seen the word ‘cystocele’ in a medical letter, but it took a long time before a healthcare professional talked her through what this diagnosis meant.

After being diagnosed with a rectocele, Jenny had some information from a physiotherapist but mostly has learnt about the condition looking online.

I had no idea until somebody, the doctor said to me, “You’ve got a rectocele,” and I said, “Oh, what’s that?” ‘Cos, I didn’t have any symptoms. I went to her for something else, and she told me and she said, “I’m going to refer you to the physio,” which she did, very nice physio who then explained to me a bit more and got me to do certain exercises and sent me away to practice them. But at that time I had no symptoms at all, so I don’t think it really went home. And I did do some pelvic floor exercises, probably not enough, but then gradually the symptoms did start and this feeling of something sort of falling down, pulling down, and then I looked into it more, through the internet mainly, and realised just exactly what it involved. And then it was, it was like a big emotional shock, it really was. Not, not that I felt any less a woman or anything like that, it wasn’t that, it’s just, “Oh my god, I’ve got to live with this, it’s not going to go away.”

 

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Most people we talked to who had been told they had a prolapse or urinary incontinence accepted these diagnoses. There was sometimes uncertainty though about the grade of prolapse, for example, as for Eve and Phoebe, or how symptoms were related to one another.

Eve asked about the severity of her prolapse when she was diagnosed. This has been confusing, and she’s since asked two different physiotherapists.

So the, my physio, NHS physio, she graded me as like a grade 2 my prolapse and then when I went to see the consultant I actually had to ask him because he didn’t tell me, he was like, “Oh yes you’ve got a prolapse,” and I had to ask, you know like, “What grade do you think it is?” and he said it was like a 1 to 2. I know there’s a 2 in both of those, but I was a bit kind of like, oh so is it, so in my head I’m thinking, ‘Is it a bit better than I think it is or-?’ and I spoke to the private physio about it and said, “Do you know if it’s, like-? Because you know what her view was, and she said like I’m a 2. She said, “There isn’t really like such a thing as a 1 to 2. You can’t really have this in between thing with the way the definitions work,” or something, so and then the consultant had said my uterus was fine but then the private physio said that actually it has descended a little bit so it, yes that can be quite confusing as to like sort of how or good or bad is it.

 

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Vicky had seen two consultants who had given her slightly different diagnoses related to urinary incontinence. She felt both overlooked the symptom of bladder tingling.

A letter back to my GP: “You referred this lady to the clinic because of her bladder problems, but she was under the impression that it is, it is mainly due to fibroids, her main problems are frequency, urgency and nocturia. She admits to possibly not drinking enough fluid and possibly goes to pass urine at the first sign.”
 
Because he asked me was I drinking enough fluid and, until I kept a bladder diary, I had no idea, so I just said, “Well I don’t know” and so that’s why he responded like that [in the letter]. If I’d been able to keep a bladder diary first and I’d been told perhaps before the first appointment then yeah, I’d have been able to say, “Yes, I do drink enough, you know, I go to the gym regularly I drink quite a lot of water and it’s predominantly water, I don’t drink fizzy drinks or anything like that.”
 
Yeah. The second consultant seemed to think I’d changed how I was feeling and my diagnosis was slightly different but I, they can, they can put labels on it all they want and which is frequency, urgency and nocturia, nocturia getting up several times during the night, but to me it was the bladder tingling and wanting to go to the loo all the time and how they want to translate that and say whether my symptoms have changed or not is, it’s up to them really.

 

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Urinary tract infection (UTI), bladder pain, and disagreement about diagnosis

Healthcare professionals and patients do not always agree on the same diagnosis, and this was an important topic for the people we talked to in relation to bladder pain and UTI problems. Jane, Helen, Rebecca, and Anna talked about tensions between different groups of patients and healthcare professionals concerning diagnoses of painful bladder syndrome/interstitial cystitis (IC) and embedded or chronic UTI.

There were different views about the labels of interstitial cystitis/painful bladder syndrome. For some, these were seen as a dismissive and unhelpful diagnosis, which blocked other routes of investigation and treatment options. Laura saw ‘bladder pain’ as a description, not a diagnosis or explanation: “if you go in and you have a sore arm, they’ll try and look for what’s causing the pain in that arm. They wouldn’t just say, “Oh, you’ve got a sore arm””.

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

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

 

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Others, like Chelsea, agreed with their diagnosis of interstitial cystitis / painful bladder syndrome. Melanie was unsure and had received different diagnoses from different specialists. Anna personally feels that it’s helpful to keep an open mind and to have “different avenues to explore” based on possible diagnoses like interstitial cystitis as well as embedded UTI.

Melanie was first diagnosed with embedded UTI by a private specialist, then with interstitial cystitis by her NHS urogynaecologist. She feels unsettled about the uncertainty, and thinks the best approach is to accept both sets of help.

So [sighs] he said, “So what we’re gonna do is we’re going to-, I’m going to refer you to my registrar and she will have a chat with you at another time but I think it’s interstitial cystitis,” so I was very polite and respectful and thought ‘Well do you know what, maybe what I do is let the private and their theory and practice run along with the NHS and their theory and practice. Maybe I just accept all the help and see what works rather than say you’re contradicting each other.’
 
I think the answer is I feel very unsettled because, I think I find it very unsettling because I think, you’ve got two camps and they’re both specialists and they’re both very sort of esteemed, you know, they’ve done all their years of study and they know what they’re talking about and yet they’re saying two different things so that is unsettling as a I say, you know, I respect them both and I don’t wanna create waves but [sigh] I’m just in the middle of trying to get well so I just thought I’ll take all the help I can get as long as one camp’s work doesn’t contradict another other camp’s work, I will take all the help.

 

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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. 

 

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Some of the people we talked to felt that chronic and embedded UTI were contested diagnoses, and that not all healthcare professionals or patients agree these conditions exist. Some people we talked to had been to private specialist clinics where they were diagnosed with chronic UTI. Laura, Megan, and Leah, amongst others, described the relief they felt when they were diagnosed with chronic UTI; it felt validating and gave them hope about recovery. However, they felt that most healthcare professionals in the NHS were not on the same page as them about this diagnosis.

Other uncertainties around diagnosis

Jordan and Mehar were among those whose other health conditions and concerns added to their sense of uncertainty around diagnosis for urogynaecological problems.

Jordan has chronic pelvic pain associated with pelvic inflammatory disease. Some symptoms are similar to that of UTIs, which sometimes made it difficult “trying to tease apart the symptoms”.

So that’s, that’s sort of certainly been sort of an aspect of it and I think, you know, in terms of when I had the infection the kind of trying to tease apart the symptoms that were more associated with that and the rationale for treating it as an infection versus the fact that I experience pain kind of as an ongoing thing anyway.
 
[I had] a different clinician at one point who was saying that although I was treated for the infection, that pelvic inflammatory disease as a kind of diagnostic label itself is associated with a, you know, just a bit of vagueness and I think, I dunno, the impression I got is that’s it’s not necessarily a clinically helpful label when people are trying to offer treatment and assess and I think the impression I got is that that is particularly the case when there’s kind of ongoing chronic pain and that I think his preference was, you know, we use the term in a kind of descriptive way in terms of how it was treated but not to place too much importance on the label itself and focus rather on, you know, kind of managing the ongoing kind of side of things and investigating for things like endometriosis so, you know, I’m kind of, kind of aware that all these things interact with one another and in some context they can complicate things.

 

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