Rebecca

Age at interview: 26

Brief Outline:

Rebecca lives with painful and persistent urinary tract infections (UTIs). She takes regular short courses of antibiotics and has had to learn to manage her symptoms with other non-antibiotic medication and relaxation.

Background:

Rebecca is a PhD student who lives with her fellow students in a rented home. She describes herself as White British.

Condition: persistent UTI

More about me...

Rebecca noticed that she started getting UTIs when she first had sex. The pain was excruciating, and she had no idea what it was. She was treated with antibiotics and yet has suffered regularly with UTIs since. UTI has a major impact on Rebecca’s life: on top of the excruciating pain and spasm, she describes embarrassing occasions where she lost control of her bladder. She says that her overriding memory of university is sitting on the toilet. She has to plan her life around her UTIs and is constantly aware of her bladder and urethra. Rebecca’s symptoms have continued to get worse, and she wonders how she is going to continue to cope.

Although doctors have treated each UTI as if it was a different infection, Rebecca feels that it is more likely to be a single chronic infection with intermittent severe flare-ups. Although Rebecca’s tests have always indicated an infection, she feels that the medical “obsession” with diagnostic testing is not useful. Rebecca does not want to be taking so many antibiotics and does not always take a full course. However, she feels there is no other effective treatment. She would like to be able to talk to a health professional with expertise in this area. Self-start antibiotics have made a massive difference to her life because she knows that they are there if she needs them, and she can therefore live her life and be a “functioning person”.

Rebecca has felt patronised and dismissed by health professionals, pharmacists and receptionists, who she feels have treated her like a “silly girl”. Rebecca even feels embarrassed to call the surgery. However, she says that she has an “amazing GP” who always listens to her. As such, Rebecca wonders why she has not yet been able to discuss the possibility that she has a chronic UTI with her GP and feels that this remains a barrier. Although her GP wants her to go back to see a urologist for further tests, Rebecca does not think that a urologist is the right specialist to deal with a chronic infection. She also feels that the tests are invasive and given for no good reason.

Rebecca has deep concerns about the long term effects of having a persistent UTI and worries deeply about her female family members and their children.  She says that no one every talks about UTI or teaches you about it in school. She feels that this is because it is embarrassing and has an association with being dirty. She feels that women with persistent UTI have had to be pioneers and hopes that future research will help women with UTI.

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.

Rebecca takes D-mannose as a preventative measure after having sex. She finds it frustrating that women have to be “like pioneers” to figure out what works for them.

I’ll, I take, if, like before I have sex I’ll take D-mannose which is really expensive by the way, like extremely expensive. And so I’ll take that, and then afterwards I’ll carry on dosing it like, I’ll take four during the day because I think your body can only like absorb so much, so it’s like, and this is the thing you have to work out for yourself, right, cos although D-mannose isn’t, is in the NICE guidelines, it says women may want to try it. Most GPs won’t have heard of it, mine have never heard of it. So all the dosing you have to work out, and if you overdose on D-mannose you’ve got really big problems. It, with your stomach, like it, so it’s all these things. It’s like women are having to be like, almost like pioneers like working it out for themselves because there’s just no help there available.