Vicky

Age at interview: 61

Brief Outline:

Four years ago, Vicky started getting bladder tingling and needing to urinate frequently. It was a “lightbulb moment” when she saw a social media post about vaginal atrophy and the effect low oestrogen can have on the bladder. Her symptoms are now well-managed with oestrogen vaginal tablets and cream.

Background:

Conditions/symptoms: bladder tingling, urinary frequency

More about me...

Vicky began getting a tingling feeling in her bladder and a constant need to urinate about four years ago. She would often wake up at night needing the toilet. Eventually, she lost the ability to tell how full her bladder was. The tingling sensation was very irritating and distracting. Shortly before developing bladder problems, Vicky had been diagnosed with vaginal atrophy and HIV at a sexual health clinic and started treatment for both. Vicky booked an appointment with a locum GP when she first had bladder symptoms. She had an ultrasound scan which showed she had multiple fibroids (non-cancerous growths that develop in or around the uterus). She was told that the fibroids might be pressing against her bladder, causing the symptoms, and was referred on to a urogynaecologist.

However, Vicky felt “very dismissed” at the urogynaecology appointment. The consultant said fibroids probably weren’t the cause and that more tests were needed. The consultant suggested that he was doing Vicky “a favour” by saying he wouldn’t carry out an examination. He asked her to keep a bladder diary for a few days, measuring liquid in and urine out. She then had urodynamic tests, which were “quite undignified” but she tried to maintain a sense of humour. The tests didn’t show any issues with urinary leaking or retention. Vicky then spent 18 months on a waiting list for her next appointment; she felt “cast adrift” and called a few times at regular intervals to check she was still on the waiting list.

At her second appointment, she saw a different urogynaecologist who thought fibroids might explain her symptoms after all. The consultant said that some drinks and foods might be adding to bladder issues. She was prescribed an anticholinergic, although Vicky didn’t really want to take another medication and saw it as a “sticking plaster” which wouldn’t treat the underlying cause. The prescription was sent to her GPs but, in the meantime, Vicky happened to see a social media post about vaginal atrophy and its full name ‘Genitourinary Syndrome of Menopause’ (GSM), and how it can affect the bladder too, which was a “lightbulb moment”. She got “amazingly better, literally within a week” when she increased the frequency of oestrogen vaginal tablets.

Vicky’s bladder symptoms are now well-managed by continuing to use oestrogen tablets inserted into the vagina plus a vulval oestrogen cream and emollient. Looking back, Vicky is disappointed that healthcare professionals missed the link with her bladder symptoms, menopause and vaginal atrophy, despite knowing she had the diagnosis of vaginal atrophy. She thinks it was a “mistake” that she was referred to urogynaecology and wishes she had instead seen her current GP who is knowledgeable and supportive about menopause. She values “joint decision making and discussion” in healthcare and finds this is often the case with her GP.

Vicky tries to be open about topics like menopause and bladder issues when talking to her friends and her two daughters. She encourages women with bladder issues, especially those of menopausal age, to consider the potential factor of low oestrogen levels. She recommends joining a peer support group and to “just always ask why” in medical appointments. Vicky would like for all healthcare professionals, particularly those working in gynaecology, to be educated about menopause and symptoms, including vaginal atrophy and bladder issues.

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.

 

Vicky hopes that women will be able to learn more about the relationship between bladder issues and menopause in the future.

Just become more aware of the symptoms of genitourinary syndrome of menopause how they might affect the bladder and the pelvic floor which can be another thing that’s related. There’s so much work being done in this area that, that we’re often when, when mentioning vaginal atrophy the bladder gets left out, so that’s a genitourinary syndrome of menopause is such a mouthful, so who wants to be saying that every time. So always ask, I would always say to any menopausal women who’s got bladder issues and they’re being linked in or referred into healthcare, ask whether there might be a relationship between low oestrogen and their bladder issues and that is so, so important. You know, whether it might be frequency, getting up in the night-time to wee irritation, painful bladder and just generally any sort of irritation and inflammation UTI’s if they’re getting recurrent UTI’s, ask if they might be, if they’re being treated and they’re not going away ask, what the reason, ask if it’s related to low oestrogen, ask whether it might be an embedded UTI for which different tests would be done, you know, not all healthcare practitioners are knowledgeable about that. Just, oh I don’t know, just always ask why, become informed.

 

Vicky sometimes found it hard to get back to sleep after waking in the night to go to the toilet, and it could set her off thinking and worrying about other things.

Going to the loo, I found that the, the bladder issues were in a way simpler at night, sometimes I could get back to sleep straight way but at other times I would lie awake because then I’d start thinking I would get up go to the loo and then I’d think about other things that I was anxious about. So I would have a time between, quite often between 4 and 6 o’clock in the morning and then as a result I’d be getting up later because I’d be going back to sleep and waking up. So yes, broken sleep, not as bad as daytime I would say. Because when I wasn’t working, I was able to sleep in more.

 

Vicky describes what happened when she went for urodynamics.

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.

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.

 

Vicky didn’t want to leave an appointment empty handed. She was prescribed a medication that wasn’t really right for her symptoms, and ultimately found an alternative treatment that works for her.

He discussed two different types. Went into detail and sort of threw me a bit and I just thought well, whatever he thinks will help me most. You know, you rely on the best decision making of your practitioner really so that’s what, you know what I went, you know, just what I went with. Because especially when it all gets a bit beyond you, I mean was he trying to blind me with science perhaps, you know, I thought in hindsight and at that point this was just my perception, you know, of course, all of this is my perception, he might have a different perception a little but I just felt I’d overstayed my welcome in there, I had, I’d had a longer than normal consultation but this is more out of frustration because it had taken so long, so many months to get it and that I didn’t want to leave without something at least and so being offered a medication was getting me out of the door.
 

 

Vicky finds that certain body parts are ‘taboo’ and thinks we need to talk about them more.

It’s a taboo subject, isn’t it, talking about genitalia, you know, there’s so many things we don’t want to talk about, piles, haemorrhoids for example there’s another one, that can, menopause affects vaginal atrophy, vaginal atrophy it affects, oh it affects the vulva, the vagina, the clitoris, the anus, the bladder, there you go I’ve said all those words [laughs]. But many women don’t want to. I once said to my GP, and this was probably about three years ago, for some reason I find the clitoris really cringey, you know, to talk about and she said you know, she’s a younger, younger woman, she said I don’t see why, it’s just a name for a part of your anatomy. So yeah fair enough, we need to talk about them more.

 

Vicky describes some of the ways she finds information online. She says that finding reliable sources is key.

Oh the best way to find out is to look at, it’s a two-pronged approach, look at reliable sources online, so wherever you live in the world look at your, in the case of if you’ve got something similar to me, look at your local, you know, your country’s menopause guidelines, the most recent version of, not the older ones, because guidelines do change as research studies show more generally so that’s really important. If you look at any research studies you have to learn how to read them a bit it’s not something that’s very easy to do, quite often the summary is the best thing to look at, but also look at the date of the research study, look whether it’s peer reviewed yeah. Sometimes it’s better to look on a reliable website that will give its own summary version, you know, of research studies. I mean in the UK it’s the NICE menopause guidelines, you know, it gives the basics.
 
But being given the support online from strangers can really, really help and it can help us to be more knowledgeable and know what questions to ask when we go and see our GP or gynaecologist or whoever we see.