Signs and symptoms of urogynaecological conditions

There are different symptoms associated with particular urogynaecological conditions.

This section covers:

  • Early signs and realising that something is not ‘right’
  • Pelvic organ prolapse symptoms
  • Bladder function problems and urinary incontinence symptoms
  • Bladder pain and urinary tract infection (UTI) symptoms
  • Changing symptoms

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).

Although pelvic organ prolapses, urinary incontinence, bladder pain and problems with UTIs are all different conditions, people told us that there was sometimes overlap in the symptoms. Also, many of the people we spoke to had more than one urogynaecological condition and experienced a combination of symptoms. For these reasons, the people we talked to found that it was not always easy to know which condition or diagnosis related to which symptoms.

Vicky had a range of urinary symptoms, including tingling, feeling she needed to wee all the time, and difficulty knowing when her bladder was full.

About four years ago, starting off with bladder issues, related to the bladder so more or less permanent tingling, feeling I needed to wee all the time, it was almost worse after I’d just wee’d and I was sitting there, I’d get up and then I’d need to wee again. So it was really quite frustration getting up a few times in the night to go to the loo. I could, I drive a car and the vibrations from the foot pedals seemed to have a direct connection to my bladder and make it tingle more which was really weird. I lost the ability to know when my bladder was full unless I was bursting to go and when I did go I often didn’t know beforehand whether it would be a teaspoon full or a pint that would come out.

 

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Not everyone we spoke to with a particular condition had the same symptoms or experienced them in the same way as other people. For example, Jan knows that other women with prolapses describe feeling a “heavy weight down below” but this was not something she had particularly felt.

Eve talks about the constant presence of her prolapse and urinary incontinence symptoms, and how they affect things like going for a walk with her son.

The heaviness really is hard I think, like just that dragging and heaviness inside, because it’s, it means you can’t ever really forget about it. It’s just always kind of like there in the mind when you pick something up or you’re walking, ‘How far can I walk?’ before I feel like I’m not going to be able to go much further or, you know, when I’m out with my son and he’s running around and I really need the toilet, like I can’t really run, I feel like I can’t run after him, I mean I have to run after him because he might be just about to jump in the river so, you know, but little accidents I mean here and there when that happens, so yeah.

 

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Sometimes symptoms were mostly or only noticeable at particular times and during activities, like exercise or having sexual intercourse. For example, most of the people we spoke to who had urinary incontinence without prolapse didn’t describe their symptoms as painful, but Rosie found that having sex could be very uncomfortable.

Early signs and recognising that something is not ‘right’

Many people we talked to described having early feelings, sensations, and signs that something was not ‘right’. Feeling like something was ‘off’ could be difficult to pinpoint and put into words.

An area of the body (like the lower tummy) might feel more sensitive, heavy, achy, or painful than usual, or everyday activities might be affected (for example, needing to go to the toilet more often or urgently). Before developing recognisable symptoms of UTI, Jane recalled first being “a little bit too aware” of her urethra (the tube linking the bladder to the outside of the body).

Those who had grown up with urinary incontinence sometimes thought this was ‘normal’. Others had a gradual realisation that other people did not have the same symptoms and concerns, such as needing to be able to get to a toilet very quickly or regularly leaking urine.

Alice has always needed to know where the toilets are when out and about. Whilst working from home during the Covid lockdown, she realised she wanted help with her symptoms.

I’ve always had a urogynae condition, but I’ve never been diagnosed until recently. It was only when mid-lockdown last year it got to a point and I thought ‘This is taking over my life’, like every time I went out the front door I’m going to the toilet. I go out and I’m constantly looking for a toilet. So I have been diagnosed with, let me get it right, overactive bladder syndrome and urgency. Which kind of makes sense when, when we look at my symptoms and presentation initially. So, eventually I was going to the toilet probably about 15 times a day, constantly, was waking in the night, and I didn’t really get a decent night’s sleep and that’s the one thing I really like, is my sleep. So it was really frustrating.
 

 

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María had stress urinary incontinence for nearly 10 years but initially didn’t recognise it as such. It took several years before she was “ready” to see herself as having symptoms of a condition. For others, like Amy, it was immediately apparent that something had changed about their body with the arrival of clear and sudden symptoms of prolapse, like seeing or feeling tissue bulging out of the vagina.

Pelvic organ prolapse symptoms

Prolapse symptoms could vary, depending on type and severity.

Often prolapses were described as feeling like there is “a bulge” or “lump”. People used different comparisons to explain this, like sitting on a “melon”, “sponge”, “cushion”, or “dislodged tampon”. Some had a sense of something “dropping down” or “falling out”, often with feelings of “heaviness”, “dragging”, “aching”, or “pressure” in the pelvic area. This could cause a lot of discomfort. For Jo and Phoebe, it was intensely painful. For Elly, the severe pain went down to the top of her legs. Catherine said that, after standing for a long time, her hips had a dull ache.

Jenny describes how her rectocele prolapse feels like having a “lump there that shouldn’t be there”.

The physical sensation of the prolapse, particularly the rectocele, which is the one that mainly causes me problems, is very much a, it’s very difficult to describe, an awareness that this, there’s a lump there that shouldn’t be there, you are very much aware of it, all the time – well except for when you’re lying down. Usually that, then it’s fine. But you are aware that there’s something there, that you know that something is not quite right. But I mean it’s not, you know I have to stress that it’s not dangerous, you know all the doctors, many doctors who aren’t terribly sympathetic will say, “Well it’s not life threatening,” which it isn’t, not life threatening, but it is life changing for a lot of women.

 

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We talked to women who had a sense of the uterus (sometimes called the womb) and nearby anatomy not being in the ‘right’ place, looking different, or being lax (looser). Kezia described thinking of her body as having “a huge kind of empty cavernous space where things can fall out of and you can’t close”, adding “I don’t feel like I know where anything is down there anymore”.

Since giving birth, Beth has become aware of different and changing sensations in terms of prolapse.

After giving birth I initially just had lots of pain and swelling around the episiotomy scar which I think kind of meant that I wasn’t feeling other things in the area. And so, I think maybe that’s why it wasn’t until about three weeks post-partum that I started to feel these other sensations. The main sensation I had was it felt like there was a tampon that had kind of slipped down from my vagina and there was something still there like there was something poking out. And for probably about a week and a half, because I was still wearing maternity pads, I just thought that they bunched up and were just, you know, and I was constantly sort of like pulling them out and thinking they were kind of stuck. And so that was the main feeling. And then, my, but then after I would say that sensation took a while as to go. That was like a few months of like pelvic floor exercises. But then the sensation changed and it kind of felt like just being open and slightly unsupported and it didn't ever feel like my vagina sort of came back together properly is the only way I can describe it. It just felt like it was kind of a bit open all the time. But then now it makes sense with the diagnosis of the avulsion because there just isn’t that muscle that supports the pelvic floor in the same way and bringing it closer together. So, I think that is just that is a symptom of the, of the partial avulsion*.
 
*Note: A levator avulsion is when some muscle fibres become detached from the pubic bone, and it is a risk for prolapse.

 

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Amy, Vickie, and Phoebe didn’t have any urinary incontinence symptoms, but many others with prolapse did. For Sharon, urinary incontinence was the main symptom of prolapse. There were also symptoms related to the bowel and pooing, especially for those with rectoceles (where part of the rectum walls bulges into the vagina).

Chloe had had some urine leaks, and Sharon and Liz had experienced times where larger quantities of wee had accidentally come out. Other bladder and bowel symptoms included: frequency (needing to go to the toilet often); urgency (needing to go quickly); struggling to tell how full the bladder was, and difficulty telling the difference between trapped wind and the need to poo; and feeling that the bladder or bowel wasn’t fully emptied after going to the toilet.

With her prolapse, Chloe says it is never "just a quick trip to the loo anymore".

The other issue is a sense of I will pass urine as usual, empty my bladder, and then there’ll be a little bit more that’s kind of stuck, have to change position quite a bit, I have to try and pass urine again. I have to do some pelvic floor squeezes to try and fully empty my bladder so a trip to the loo is not just a quick trip to the loo anymore. It’s like going through the motions of trying to fully empty my bladder properly, otherwise it just what I sometimes still do just leak a little bit of urine. But thankfully that is slowly improving as well, and the hope is that will get better so.

 

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Jessy, Jo, Chloe and Vicky said that they sometimes had to move into different positions to find an angle to get all the wee out. Some women we talked to used a technique called splinting, where the hand is used to push on the vaginal wall to help physically manoeuvre poo out.

Vickie was grateful that she didn’t experience any urinary symptoms with her prolapse, but she had lower back pain and a dragging sensation, and needed to splint (a technique to help move poo out).

I was fortunate because I didn’t-, I didn’t experience incontinence and I think that would have been a bit too much for me at the time. You know, I I really feel for women who are in that, so I didn’t have that. I had lower back pain in the kind of my tail bone, top of my bottom, quite a lot of pressure dragging, aching, heaviness all of the time and then difficulty-, sorry this is too much information but I think we, really important we talk about this, difficulty being able to pass stools so having to kind of splint to get to a place where I could relive myself, that was pretty awful.

 

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Bladder function problems and urinary incontinence symptoms

Urinary incontinence is the unintentional loss of wee/urine. Some had more than one type of urinary incontinence, such as stress incontinence or urge incontinence or overactive bladder, others had mixed urinary incontinence which could include symptoms of leaking urine, urgency and frequency.

There are many other forms of bladder symptoms that can bother people that do not involve incontinence, such as needing to wee/urinate a lot, getting up to wee at night, or difficulties emptying the bladder.

Stress incontinence is when urine leaks out in response to activities like sneezing, coughing, laughing, lifting heavy things, and exercising. It does not usually involve physical pain, but women told us that it was embarrassing and limited their actions.

Jan talks about stress urinary incontinence and the shock she felt when she began to have accidental urine leaks.

It was really four years ago, I started to play a lot of table tennis again, having not played for many years and it was really only table tennis when I was batting and suddenly realising actually the embarrassment of, I had lost some urine and I hadn’t, I wasn’t wearing pads and the total anxiety about trying to get to the loo very, very quickly but actually not particularly needing the loo. I’d been to the loo before I went to the activity and the shock of it really. ‘Oh my gosh what’s going on?’ and similarly perhaps I used to go for walks with my husband about and suddenly I needed to have a quick cough or a sneeze and the same thing beginning to happen and realising without any control over it at all, you’d, you’d lost some urine and had to rush home and change your clothes and the reality of going out to the supermarket for the first time and buying some pads as a way of coping with that. That was a big a big feeling of, ‘Oh my gosh, I’m getting old. Is this what life is going to be about now from now on?’ and not really knowing so I don’t, I think I managed to keep going for about six months and thinking, ‘Well perhaps I’ll just not drink any water before I go’ but it didn’t make any difference. It wasn’t about the water intake at all. It was all about just not being able to hang onto to the, the urine.

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The amount of urine leaked varied from person to person. For Mehar, panty liners were enough to absorb any leaks. Emma had used menstrual pads for protection, whilst others like Jessy and Cynthia wore daily pads. Sue Y, Freia, and Mary Y used thicker incontinence pads all the time or particularly at nighttime.

For some, quite a lot of urine came out when they lost bladder control. Minnie said that urine sometimes “dribbles down my legs” if she can’t make it to the toilet in time.

Minnie sometimes feels that she hasn’t fully emptied her bladder and she finds that going for a wee can be very “stop start”. At other times, urine leaks out unintentionally.

And even if it’s a small amount you still have that feeling, well I do anyway [laughs]. That you haven’t been properly. I mean when I first noticed this some years ago, I’d go to the loo and you’d go and then nothing happened, but you knew it hadn’t stopped. So, you had to wait a bit longer and you’d go again. And you’d sit on the loo for ages, stop start, stop start, stop start. And when I went there they said, “Oh yes, this is part and parcel of the problem.” And that’s a little bit what happens now. I get this urge I’ve got to go quickly, and sometimes it dribbles down my legs. Sometimes I get there in time.

 

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Sharon and Iris had only one experience of total urinary incontinence (loss of a lot of urine). For others, this happened often or most of the time. Mary Y described how “now it [urine] just leaks out constantly, it’s like a slow dripping tap”. Sabrina has an accident most weeks and, although normally it is not her whole bladder that empties, it is enough to mean that she has to take a shower and change her clothes. Julie and Freia said they had woken up soaked in urine after accidents during the night. Freia has also had some urgency to get to the toilet to poo in time and is worried about this getting worse.

Freia’s urinary incontinence has got worse and she now sometimes wakes up soaked in urine after 3 hours. She worries about having accidents when visiting other people.

I thought it was just a temporary thing, but it hasn’t been. What, what I’ve been finding in the last six months really is that I’ve got the problem during the night that before I never had to get up in the night. I’d go to my bed, I would wake up go to the loo, that was fine but now I wake up after three hours and I’m soaking wet and it’s really embarrassing. I’m a single, I’m a single woman and I can see myself being that for the rest of my life because of this problem but it’s so embarrassing and so I feel just like a young kid again and it’s so out of my control and I can’t really think I’ve been trying to reduce the amount of liquid and I don’t have an in-, I don’t have a an infection. I’m running to the loo more often during the day now. It could be every hour and sometimes I’m having accidents. It’s horrible, when I’m out that I’m scared I’m gonna have an accident like in a shop or at a function or even if I’m out visiting people if I spill when I get up from my chair. I’d be really embarrassed, I don’t want to stain anybody’s furniture.

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As well as the embarrassment and inconvenience of changing clothes, and potentially bedsheets and cleaning carpets, María says smelling of urine “is always in my mind, like am I stinky?”

Iris has symptoms of stress urinary incontinence and urgency. She mostly has urine leaks but once had a fuller accidental loss of her toilet functions, which was very distressing for her.

Stress incontinence, it can happen when-, the way I have it in my head is that it’s something that we put extra stress on the bladder, so coughing, sneezing like for example, I’ve got a cold at the moment and if I forget to pull my pelvic floor up before I sneeze then it feels like I might have a little accident. Things like being sick or anything basically that yeah, that would cause an extra, an extra stress to make you weak. That’s how I understand it. Urge I would say, so for example, one of the biggest problems I was having is when I was getting into the house, it’s like my brain knew there was a toilet in the house and I would leak just as I was walking into the front door because it’s kind of like the urge is there or I know for some people it isn’t that they’re not aware they need the toilet. But for me I am aware that I need it, but I can’t always hold it quite as long as I would like to.
 
I was leaking from my bladder, but also I was having small-, and it was never, it was never a lot, it was never like a full wee. I think I’ve only done that once. But it was a small amount from my bladder and sometimes a small amount from my bowel. And the sensation of that is something- [exhales] I don’t really know how to separate the physical and the emotional to be honest on that front because it’s, it’s really hard [laughs]. But it’s, it’s a feeling of sort of sticky discomfort would probably be the best way.

 

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Urge incontinence and overactive bladder involve having frequent and sudden urges to wee. While they had not had urinary leaks, Parminder and Minnie described urgency (needing to rush to the toilet quickly) and Alice and Sue X reported frequency (needing to go wee more often).

Minnie found that she often did not feel empty after going for a wee, and so she regularly self-inserts a catheter (a tube used to remove urine from the bladder) to reduce urinary leaks.

Bladder pain and urinary tract infection (UTI) symptoms

Whilst bladder pain, interstitial cystitis, and various types of UTI (recurrent, embedded, chronic) are different diagnoses, the people we talked to often described having some similar symptoms. These included discomfort or pain in the pelvic area (lower tummy), the bladder or urethra, and a strong sense of needing to wee urgently or often. A high temperature, feeling unwell and nausea were also common.

The urine could also be different, especially at the start of a new episode of UTI or a flare-up of ongoing UTI symptoms. Jenny and Jessy said their UTIs often involved smelly and cloudy urine. Jane, Leah, Clare, and Sarah told us that they have had blood and clots in their urine.

Jane gets UTIs which come back time and time again. She experiences a progression of pain, difficulties and discomfort weeing, and visible changes to her urine.

That knife it’s, it’s twisted, and your bladder is squeezed at the same time, that’s exactly the perfect description of what the pain feels like. So it’s, a, it’s an almost pleasurable twinge in the early stages, and then it ramps up very quickly to kind of real pressure and agony, agonising feeling. Now that’s combined with being unable to pass any urine. And what it feels like then is that the bladder is completely swollen or inflamed or, and it just feels like everything is hot, right, and, and nothing’s going anywhere. So there’s this incredible downward urge and squeezing going on, and nothing happening. So then you feel like your bladder tissues are all grating against each other almost, so that that’s another kind of pain. And then I think at the end of the whole spasming I guess it is, there’s like a kind of, it’s just like a neurological pain, I don’t know how to describe it better than like toothache, it just can feel nerves going, Eergh, like that. So there’s that. And then you pass one drip, you know of wee, and it’s boiling hot wee and you know all of your external tissues feel sore and inflamed at that point as well. So I, so that was it, and then often your, your, your urine becomes very cloudy, and you kind of know that you’ve got an infection, you can literally see the bits of stuff.

 

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For Anita and Rowan, bladder and urinary symptoms left them worried about being far away from a toilet. Chelsea, Phyllis, Megan, and others found they felt they needed to wee more often, while Jordan and Laura both described the urge to wee as “constant”. Rebecca, Anna, Clare and others also had a desperate urge to wee but then found little to no urine came out; as Sarah explained: “you get a feeling like you probably want to wee and you know you’ve only just been”. Phyllis described getting out of bed up to 15 times a night to go for a wee. Jane told us about times when “I literally could not leave the bathroom. So, all night I would be in the bathroom, trying not to fall asleep on the loo, so I’d end up lying on the floor”.

At times, Mehar, Jane, and Rebecca had urinary leaks because of UTIs. Felicity wore pads at nighttime because she leaked first thing in the morning.

Discomfort and pain were key symptoms. Some had “burning”, “stinging”, or stabbing pains when they needed to wee, after they had been for a wee, or almost constantly during a ‘flare up’. Holly said her pain came in waves, while Jane and others described spasms. Chelsea said it was “an ache almost constantly”. Helen described it as a constant balance act of going to the toilet: “I can’t wee too often because if I wee too often that makes the pain worse. But if I don’t wee enough that makes the pain worse”.

Sarah gets a “bit of an ache” when a UTI is setting in.

You sort of get a feeling like you probably want to wee and you know you’ve only just been that’s, that’s the most, that’s the strongest feeling, you sort of, and actually sometimes in the night if I get up and go to the loo and I go back to bed and about half an, and I don’t sleep terribly well, about half an hour later I think ‘I want to go again’ and if I can actually go and have a good wee I feel so relieved because I’m thinking if it’s just a few dribbles I think ‘Oh it’s started.’ It’s a sort of, you know, it’s a sort of funny sensation like a, just, it is just like you, you’re pretty sure you’re going to want to go to the loo and it’s a bit of an ache as well, and then when I go to the loo if I, if it doesn’t have a good pour then I know it’s starting to, to come.

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Bladder pain is Megan’s main ongoing symptom. She takes medication which helps with the urgency and frequency of needing to wee.

So the painful bladder syndrome and the interstitial cystitis that they diagnose you with, it’s like kind of like inflammation in your bladder they say, so it’s kind of like having a UTI all the time. Like obviously you like have the pain, the frequency, the urgency, but it’s a bit more extreme than it normally is when you have a UTI. And it’s constant, so it’s just like having to go to the toilet a lot, but my pain has been my main symptom, like I can’t seem to control it very well. That’s what the main problem’s been, and the frequency and urgency helps with medication, but it just seems to be the pain we can’t get like on top of.

 

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The pain could be relentless, and difficult to manage and relieve. Phyllis described her pain as like “a burning hot wire up the urethra”. To Jane it felt like a twisting knife, and she added that, if it would give some relief, “you’d gladly rip your own bladder out rather than go this agony”. Holly and Leah think they have developed overly tense pelvic floors as a result of being in constant pain.

Megan, Leah, and Laura found that bladder pain could be made worse by everyday things, like travelling on a train or bus, or sitting on a hard seat. Laura described the agony of a long car journey and counting down “the seconds to get through it”. Leah found it more comfortable to stand at times because of severe bladder pain which went up her thighs and back, and Rowan could not lie or sit because of the pain.

Having ongoing, persistent or recurring UTI symptoms could be quite different from one-off episodes of UTI. When Anna first had a UTI, she would get a “nebulous pain” in her abdomen whereas this pain has changed as her UTIs continued as she had “extreme spasms” in her bladder.

Rebecca finds that her UTI pain fluctuates from “low-level symptoms” to “huge flare ups”.

And then in my final year I had an instance where I totally lost control of my bladder in the middle of college, so that was like really bad, and also things were just confusing, like it was never like, I never felt like the way doctors talk about it, it’s as if you get a UTI and you go to the doctor and they give you the pills. Or as if like you go in pain and they say to you, “Oh you have a UTI,” or, “You don’t have a UTI.” And they give you the pills, but that isn’t what it was like for me at all. Like I would have these, they spoke about it, the way I describe it is they spoke about it, like it was vertical, like this, UTI, another UTI, whereas for me it was like horizontal, it was like low-level symptoms with then these huge like flare ups. And like they didn’t make sense.

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Several people had more body-wide symptoms as bladder pain and problems with UTIs continued. This included a general sense of feeling very unwell, hot-cold flushes, headaches, and aches in other parts of the body, bloating, diarrhoea, vomiting, and tiredness. Felicity at first feared that her bladder pain might indicate something “sinister”. The unpredictability of these symptoms could have a major impact.

Changing symptoms

The symptoms and severity of urogynaecological conditions could change – for better or worse – and for a range of reasons (see also section on causes and contributing factors). Those who had complications from mesh surgery sometimes found that they had developed additional or different symptoms.

Compared to the problems Leeanne has had since mesh surgery in 2016, she wishes she could “turn the clock back to having that and having only that” in terms of her stress urinary incontinence and prolapse symptoms.

So, initially the impact is it’s inconvenient. But if you cough or sneeze you have to have a big, ugly granny pad [laughs]. It’s not very pleasant. But, with hindsight I would in a heartbeat turn the clock back to having that and having only that, because at least when I was incontinent then it didn’t smell, it didn’t-, you know, whereas now, just this awful smell all the time. It smells like, I don't know you’d describe it like wet hay. It’s a terrible smell. But you just can’t do anything to get rid of.
 
But sometimes if it, if it flares up, if I’ve drunk coffee or something like that then obviously it can get a lot worse. Or if I’ve been gardening or exercising but it, it’s a very deep cramping pain. The bladder just roars after it’s been emptied and they can find no explanation for that. But it’s something that’s existed since I had the TVT put in.

 

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Symptoms could have many impacts – on various aspects of life like socialising, work and finances, sex and relationships, and emotions and wellbeing. After having symptoms, most people we talked to then went to see a healthcare professional for more information and to see what sources of treatment and support were available.