Holly
Holly has a chronic UTI that has become worse over time. She first had a UTI when she was 18; she then had a hysterectomy when 53, and her UTI problems have worsened over past five years. She’s had multiple cystoscopies and urethral dilations and a bladder fulguration; none of these worked for her. She’s been on antibiotics for the past 6 months as part of a long-term treatment plan.
Holly is living with chronic urinary tract infection (UTI); complications from the condition have caused her to stop working as a teacher. She is married and has two children. Her ethnicity is White British.
Condition: chronic UTI
More about me...
Holly had her first urinary tract infection (UTI) when she was 18 and would get recurrent UTIs through the next few decades. She would have blood in her urine, burning, and stinging sensations. Holly remembers when healthcare providers would prescribe antibiotics lasting one to two weeks to treat UTIs. Now she says most providers will only give antibiotics for a few days at time; this does not help her fight her chronic UTI.
Holly has had continual pelvic pain over the years. She saw several different healthcare providers and eventually found out she had adenomyosis (where tissue that normally lines the uterus, called endometrial tissue, grows into the muscular wall of the uterus) and uterine fibroids (non-cancerous growths that develop in or around the uterus). Both of these are uterine conditions that can cause cramping and heavy menstrual periods. She managed her heavy periods with the help of Mirena coils for 15 years and then decided to have a hysterectomy when she was 53.
Holly believes that her chronic UTI has become worse since she became menopausal. About 18 months ago she had a flare up. Her symptoms are much worse than they used to be. Now Holly has severe bladder pain, back aches, nausea, and hot sweats. She’s lost approximately three stones and has had to stop her work as a teacher because she’s been so unwell.
Over the years, Holly has had three cystoscopies and three urethral dilations. She does not believe these procedures were worthwhile because they made her sore, stirred up her UTI, and did not make things better. Less than a year ago, Holly tried a newer procedure called a bladder fulguration in an attempt to get some relief from her pain. She recalled that the procedure led to bleeding, pain, and another UTI flare that took months to subside. She regrets having the procedure and does not recommend it for others.
Holly is now receiving treatment from a chronic UTI specialist clinic. She has been taking a heavy load of antibiotics for six months and is just starting to feel better. Holly also takes probiotics and multivitamins and uses magnesium oil to help balance out the antibiotics. She imagines she will need to stay on the antibiotics for at least another six months but is happy to keep doing it if it treats her chronic UTI.
Holly wants other people living with chronic UTI to know they are not alone. She wishes that healthcare providers stopped relying on urine tests and instead focused on listening to patients and treating symptoms. She hopes that more research will be done about chronic UTIs.
Holly describes how, compared to “classic” UTI symptoms, she now has different symptoms for an embedded UTI.
Holly describes how, compared to “classic” UTI symptoms, she now has different symptoms for an embedded UTI.
That has varied and has actually changed over the course of my, my career with urinary tract infections. When I first got them they presented as classic UTI’s with blood in my urine, burning and stinging and constantly needing to go to the toilet, but they’ve changed and now I get a lot more pain. I get a lot of back ache, I get a lot of bladder pain, and I also have nausea and hot sweats to a point where I, this current flare up I’ve been suffering since last February. So, we’re sort of 15 months into it now, and over the course, between February and July last year, I lost nearly three stone in weight because I just could not eat, I was feeling so sick with the, with the infection. It was I suppose, felt a little bit like the beginnings of, of a sepsis type of infection.
Holly describes the uncertainty of UTI symptoms, which makes it difficult to plan ahead.
Holly describes the uncertainty of UTI symptoms, which makes it difficult to plan ahead.
It’s just so unpredictable. You don’t know from, on a day-to-day basis how you’re going to be and how you wake up feeling in the morning isn’t necessarily indicative of the sort of day you’re going to have. So, I might wake up and think, ‘Oh I’m having a better day today,’ and then by lunchtime I’m crippled. Or I might wake up in the morning and think, ‘Oh I’ve had a really bad night, and I’m in a lot of pain,” and then all of a sudden it seems to ease and then I feel almost normal. It’s just really difficult to predict.
Holly has had several cystoscopies (a procedure to look inside the bladder) for UTIs. She describes two types of cystoscopy, and the outcomes she’s had from these investigations.
Holly has had several cystoscopies (a procedure to look inside the bladder) for UTIs. She describes two types of cystoscopy, and the outcomes she’s had from these investigations.
Okay well there are two types of cystoscopy that you can have. There’s one called a flexible cystoscopy where they put a very narrow tube with a camera in, into your bladder, and they can have a good look round and see if they can see any lesions or any sort of abnormal growth, but what they can’t see with those, and I suppose what you can’t see with the naked eye is infection. You would just be able to see sites of inflammation where there is infection. And that’s done as a day case procedure under local anaesthetic in hospital. And it’s pretty quick. And then you can have something called a rigid cystoscopy where they might give you a general anaesthetic, and they, that’s also got a, it’s a, it’s an instrument with a camera in the end and they insert it through your urethra up into your bladder and have a good look round and see whether they can see anything that might be causing your issues. The only problem that I’ve found with having cystoscopies is that they can stir up an infection so you might go into hospital feeling well, and then after the cystoscopy, the infection, you might get a urinary tract infection because of the procedure, which you know then might take a few weeks to settle down. So, I think the cystoscopies that I’ve had have never actually shown anything apart from a little bit of inflammation in the trigone area of my bladder, which is the neck of your bladder. I’ve sort of looked back with hind, you know with hindsight and think, ‘Oh well I’m not really sure that that was worth the, the hassle and the effort.’
Holly’s pelvic discomfort has improved after her physiotherapy treatment for overactive pelvic floor.
Holly’s pelvic discomfort has improved after her physiotherapy treatment for overactive pelvic floor.
And so I’ve had a hypertonic pelvic floor can cause issues with urinary retention, so I went along, I had a lot of pelvic pain, and so I went along to a women’s health physio, which was something else that I had to finance privately, and she’s been working on trying to release the tissues with internal massage basically, it’s fairly, fairly invasive, it’s not particularly pleasant either. So, she’s been doing some internal massage with me and some, I’ve had some acupuncture with her, and also, I’ve had she recommended I buy a therapy wand, so I can do a little bit of some massage myself in between sessions, just to try and free up the tissues, and soften them so that my bladder sits in a better position. And it isn’t, you know it isn’t quite so, the flow is better, my urethral flow is better.
You said that’s a little bit uncomfortable?
Yes, it’s uncomfortable because, and also, it’s, you have to have trust in the therapist because obviously they’re working internally, they’re massaging internally, so it’s, it can be a bit painful, and also it’s embarrassing I suppose.
Holly now wishes she had asked more questions before having bladder fulguration (a procedure which burns the bladder lining).
Holly now wishes she had asked more questions before having bladder fulguration (a procedure which burns the bladder lining).
It’s a fairly new procedure and I don’t think I, that was explained to me particularly carefully, and I think because we were in the middle of the Covid pandemic, and, and I was, I had been so poorly for so long I was just desperate to feel better and was willing to try anything. But actually, I think I should have asked some different questions about it. I should have asked how many times the consultant had done it. I should have asked more about the sort of evidence of you know how receptive it was, you know what sort of trials had been done, clinical trials, and I didn’t really ask any of those things because things were, consultations were being done remotely, and over the phone, and I didn’t find it very easy to ask questions. And looking back now I wished I hadn’t had it done.