Phyllis

Age at interview: 78
Brief Outline:

Phyllis has had recurrent and then chronic urinary tract infection (UTI) for over 20 years, during which time she has seen nine different specialists. Separately, she also had TVT-O surgery to treat urinary incontinence related to prolapse following a hysterectomy.

Background:

Phyllis is a retired interior and floral designer. She is married, and has three adult children and grandchildren. She describes her ethnicity as White British.

Conditions: recurrent UTI, chronic UTI, urinary incontinence

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Phyllis has lived with recurrent and then chronic UTI for over 20 years. She describes her experiences with UTI as an “awful long haul that I’m still battling now”. At her worst points, she was “in a desperate state of misery”. Phyllis says an illness like this changes your personality, “snapping at people and being mean, but it’s not your character normally”. She is “a fanatical exerciser” but her UTI has made this difficult, ruined holidays, and impacted on family and friends around her too. Her problems with UTI began with an episode of cystitis (inflammation of the bladder, usually caused by a bladder infection) that didn’t go away with antibiotics. Eventually, with more antibiotics, it “seemed to calm down a bit” but was “niggling on”. Although the main symptoms stopped, Phyllis was left with urethral pain. She is now taking long-term antibiotics and finds this has made a huge difference, although she still sometimes gets flare ups.

Phyllis has seen nine different specialists, mostly urologists by background, about her UTI problems. Some of these have been private doctors, but she is now under the care of an NHS tertiary clinic which she describes as a “brilliant service” with “a wonderful bunch of people” working there. She has also seen a homeopathic doctor and found that cantharis helped. However, she remains cautious that some alternative remedies for UTI are “just a waste of money”. Phyllis has had numerous dipstick/midstream urine sample tests which come back negative. Being told that there is no infection has left Phyllis feeling like healthcare professionals think “it’s in your head”, and at times this has made her question herself too. She thinks that she’s been seen as a “nuisance” and “heart sink patient” by some of her doctors. Some doctors have been “patronising” with a “cynical attitude”, but others have been “very supportive and helpful”. Some GPs she’s seen on multiple occasions have been both dismissive and understanding at different times.

Separately to her UTI experiences, Phyllis developed urinary incontinence related to prolapse about five years after having a hysterectomy for fibroids (non-cancerous growths that develop in or around the uterus). It started as the occasional “little incontinence spurt”, but then “got to be happening more often” with movement. This continued for many years, and Phyllis started wearing “large pads” when playing sport. She saw a physiotherapist for about 4 months, but her symptoms were worsening, and she was referred on to see a urogynaecologist. One of Phyllis’ friends had had TVT-O surgery, and so she asked the consultant about it. She was told that “most women usually just put up with that”; Phyllis was “appalled” and replied, “Well, I am not most women, and I don’t want to put up with it”.

Although Phyllis is very pleased with the outcome of her TVT-O surgery, it needed to be revised. The first surgery was done by a doctor who Phyllis had never met before the morning of the surgery. She experienced discharge for many months afterwards, before being told the mesh had been put in the wrong place. The surgery was re-done by the consultant that Phyllis had been referred to initially and she says this has been “extremely successful, it was brilliant actually”. Phyllis was worried when she heard in the media that some women had been injured by mesh but is grateful that she has not experienced any problems herself in the 10 years since having the procedure and thinks it’s because the surgeon who did the revision did “a good job”.

Phyllis has written to and visited her local MP to campaign about better support for women like herself with UTI problems, and she’s also challenged her local Clinical Commissioning Group about treatment provisions. She’s involved with a number of online support groups, which didn’t exist when she first had UTI. Phyllis says the guidelines around antibiotic prescribing for UTI are letting down women (and men), and leaving them reliant on only a very few private and NHS clinics that focus on recurrent and chronic UTI. She would like to see more specialist services for UTIs set up across the UK. She highlights that older women affected by urinary incontinence and recurrent UTI are sometimes overlooked, but should be offered support so that they can continue to be active and not slip into “an elderly mode”. She thinks there needs to be a shift in healthcare professionals’ attitudes so that women’s health concerns aren’t “brushed to one side so easily and quickly”.

Phyllis suspects a genetic factor is contributing to her repeated urinary tract infections. She hopes there will be greater support around women’s health for future generations.

Phyllis suspects a genetic factor is contributing to her repeated urinary tract infections. She hopes there will be greater support around women’s health for future generations.

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It’s so uplifting to think that, you know, something is happening, that, you know, that you’re, some, you know, people are on our side and, and trying to get things done. So, I’m really happy to do anything like this which is why I was determined to do it. I thought ‘I just do not want my own children, grandchildren, to deal with this when they get older’. Especially as we seem to be a bit susceptible in our family. So, you know, it’s I don’t, I mean, it must be something to do with hormones on the bladder lining or the, there’s a, they have, you have a layer apparently in your bladder, which is thick [coughs] whether or not there’s, you know, something to do with that or genetic thing, I don't know. But I thought, you know, if I’ve got my daughter and my granddaughter who have the same problem, despite all the precautions you brought up to follow, you know, hygiene wise, there’s still- and besides which the man in America said, “That’s nothing to do with it.” He said, you know, “Whether you wipe from front to back or not.” He said, “Otherwise everybody would have it, if that was a problem.” So, we’ve always been brought up to do the things properly, but they’ve still got it. So and I thought ‘well, it could be that the next one would be my lovely granddaughters, these lovely girls, you know, that might be faced with this and there might still be no help’. So, I’m very happy to do this.

 

Phyllis’ incontinence issues have made it difficult to do things she previously enjoyed, like exercising and going on holiday.

Phyllis’ incontinence issues have made it difficult to do things she previously enjoyed, like exercising and going on holiday.

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Well, they were stopping me from doing things I wanted to do, to start with. If I could dampen the symptoms down enough to go out and about, I was always in a miserable mood, you know, nothing was ever fun. I used-, and it stopped me from exercising. I’ve always been a fanatical exerciser. And I stopped doing it because, you know, if you can imagine running and every step you take you feel as though you are gonna, you’re going to wet your knickers because you feel a desperate urge to go to the loo all the time [laughs]. That was really unpleasant, I had to stop that. Any-, all the exercise that I used to do, I stopped. And, you know, it’s also because you've got this feeling of irritation all the time, it makes you, it does make you leak. You know, normally I don’t, but when I’ve got symptoms you can because it’s an irritation as if you’re going to go to the loo that minute, you know [laughs].