Elizabeth

Age at interview: 64

Brief Outline:

Elizabeth has seen many NHS and private health professionals for chronic urinary tract infections (UTIs), urinary urgency and frequency over the last 12 years. Her symptoms began soon after having a hysterectomy for endometriosis and became worse after radiotherapy for breast cancer.

Background:

Elizabeth is a retired project leader. She is married and has three adult children. She describes her ethnicity as White British.

Conditions: chronic UTI, urinary urgency, urinary frequency

More about me...

Elizabeth was diagnosed with endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes) in her 40’s. Following a hysterectomy, she began to experience urinary urgency and frequency as well as bowel problems (frequency, cramping). However, she “felt well” because finally the painful and heavy periods had stopped and the bladder issues “didn’t seem that much of a problem” at first. As time went on, she was needing to go to the loo more frequently and was feeling quite poorly. She saw a gynaecologist who ruled out a cystocele (prolapse of the bladder into the vagina) and referred her to a urologist. It was around this point that Elizabeth experienced a UTI whilst on holiday; it went away but then returned and prescribed courses of antibiotics did not clear it.

Elizabeth was diagnosed with breast cancer and had surgery and radiotherapy in 2018. Her urinary urgency and UTI symptoms became worse, and she felt constantly like she had “a really bad stomach bug coming on”, with sickness, retching and sometimes diarrhoea, as well as kidney pain and a burning sensation in her bladder and urethra. Elizabeth continued trying different types of antibiotics for three day courses but these didn’t make a lasting difference. She felt very unwell and, in 2019, was admitted twice to hospital for two weeks in total. At her lowest, Elizabeth questioned “if life’s worth living” but “battled through” for her family. When she was discharged from hospital the second time, Elizabeth looked online for help. She saw a specialist in UTIs privately in early 2020 and has been on long-term antibiotics since, which she says has “given me my life back”. She thinks though that “until I get rid of the [UTI] infection, I’m not going to get rid of the [urinary] frequency and the urgency”. Elizabeth feels there needs to be more recognition of patients like her in conversations about antibiotic prescribing and resistance.

Elizabeth’s health experiences have had a huge impact on her life. She thinks that “if I’d have been with someone who was less sympathetic, our marriage wouldn’t have stood it”. There has also been a big impact on her “career choices, the fact that I had to cut down to part-time”, salary, pension situation, and sense of professional self: “there was this shame in my head about not being able to do my job as I wanted to do it”. Although paying for private healthcare “doesn’t sit right with me”, Elizabeth has felt she’s had little choice but to draw on private treatment to get the help that she’s needed, and this has been a significant financial cost too.

At times, Elizabeth’s felt like she’s “fighting a battle with doctors”. She thinks that ‘women’s health problems’ are not taken seriously by some medical professionals. Although she has met some arrogant, dismissive or otherwise unhelpful doctors, she has also met some who have shown that they really want to help. Elizabeth remembers one doctor who she saw for treatment of her breast cancer who wanted to learn from her in order to help other patients in the future who might have urinary problems too. Elizabeth highlights that it’s important to listen to patients and take them seriously: “I know my body better than any doctor or nurse or consultant”. She encourages healthcare professionals to “think outside the box”, and would like to see more research and awareness about UTIs alongside funding for dedicated healthcare services.

Elizabeth has felt dismissed in doctor’s appointments, which has added to the emotional toll of experiencing UTI symptom flare ups.

It does impact on me. It gets me, I’m not a person who gets depressed, never have been, but it does, you know, when, if you’re having a flare and I mean I do have little-, you know, since I’ve been on the four a day antibiotics I haven’t had such bad flares, but before I was on the three a day or two a day sometimes, I was having quite bad flares. And, you know, you lie awake at night time thinking when is this ever going to end? Am I ever going to go back to how I used to be? You know, what, what’s going to happen to me? What if I get sepsis? You know, what if it gets so bad and I go to A&E and I’m fobbed off again like. And it does impact on you mentally.

 

Because of problems with her bladder and UTIs, Elizabeth made changes to her work situation – like going part-time, changing jobs, and taking retirement early – which has impacted her financially.

Well there was the salary impact, impact. I decided to take my pension early, so at a much-reduced rate. So I took it when I was 55. Had I been able to work a bit longer or to manage without taking it, it would have accrued more, so I probably lost about £5,000 a year or-, by taking it early. So had I left it till I was 60 I would have definitely been getting £5,000 more just by the very nature of how it works with the investments. I mean I couldn’t have done it had my husband not had a good job, I wouldn’t have been able to give up work. I suppose I would have had to have thrown the towel in and gone on long term sick, and applied for some kind of I don’t know, payment from the state.

 

Elizabeth struggled to get access to antibiotics when her dipstick tests didn’t show signs of infection.

But I never had any problem with them prescribing on symptoms for three-day courses, it’s just you go back and you’d say, “It’s not gone.” “Really? Not gone? There’s nothing-, you know, the dipsticks coming back clear, you don’t need anything.” And certainly when I came out of hospital with the sickness, the GP then was so reluctant to give me any antibiotics for months because he said, “The dipsticks clear. So you might have symptoms but you haven’t got an infection,” he said. So and that was also when I went to A&E and they quoted me interstitial cystitis, you know, and they said, “No, we can’t give you anything, and there’s no cure for it, you just have to take paracetamol,” which didn’t do anything, you know.