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]

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).

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”.

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.

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.

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.

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.

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.

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).

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 medicationspessaries, 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.

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.

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.

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.

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.

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.

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”.