Two and a half years. Thirty months. One hundred and thirty weeks. Nine hundred and thirteen days. More than one million minutes. Nearly seventy nine million seconds. Forty plus catheters, fifty five UTIs, two hospital admissions and three surgeries with another on the horizon. That’s been my life. Yup, my life. Is it normal to have both anger and sadness at the same time? I’m angry that this has just become normal and medical professionals look at me frustrated but also emotional on my behalf yet they can’t seem to speed anything up.
My oxymoronic state of mind was heightened when I read a recent Mail Plus article by Elle Adams. Elle, is an Ambassador for Fowlers Syndrome UK and I met her at this year’s conference whereby we had a lovely conversation and was the first person who I saw talking about Fowler Syndrome; the most striking thing was that when I lay in an A&E cubicle having just had my first catheter fitted her video popped up on my social media feed leaving me feeling seen and heard. So, this piece isn’t one fuelled on hatred or spite it’s constructive feedback that is needed and should provide guidance and advice for telling your story to any journalist. In the piece, Elle paints the picture that most women living with Fowlers experience. This is, a healthy young woman suddenly going into complete urinary retention without warning, often being told her symptoms were a product of anxiety thus not receiving adequate intervention. This article did a good job for SEO, ie the mention of sacral nerve modulation/stimulation and fowler syndrome but nothing more. The article could have done so much more, this isn’t an Elle problem this is a journalist problem, but let’s unpack what it glazed over.
Catheterisation became part of her normal life
Elle learnt to intermittently self catheterise to empty her bladder. She has previously described this as frightening initially, although she later found that self catheterisation gave her considerably more independence than relying on an indwelling catheter. I spent a combined total, 12 hours learning to self catheterize through my urethra, it was one of the most humbling, traumatic and horrendous medical episodes in my life. I then spent every hospital appointment and admission being lectured on why it would be better for my quality of life and how it’s easy to do with lots of time spent fiddling with my flaps. I can’t lie, but having a man telling you it’s easy to self-catheterise makes my piss boil. A man can see their pee hole, a woman can’t. It took seeing two urologists specialising in womens urology to be told that this isn’t a clear cut option for women living with fowlers due to the urethral sensitivity. It’s described as your urethra clamping down onto the self catheter making it difficult to insert and withdraw. For women whose bladder stops emptying, learning to catheterise yourself is often presented as the practical solution. But it is not necessarily simple. Research has found that around one in four women taught intermittent self catheterisation were not successfully performing it independently six weeks later. More recent research found that almost half of women reported difficulty with the procedure and more than half reported pain. For women with chronic urinary retention, including Fowler’s syndrome, clinical guidance acknowledges that urethral and pelvic floor spasm can make catheterisation frightening and unpleasant enough that longer teaching appointments may be required. This was an area that the article glossed over and left me frustrated. I’ve often said to friends, family and clinicians that if I could’ve I would’ve. I wouldn’t have wanted to spend nearly three years having to have a permanent catheter inserted into either my lady garden that would win the gold prize at an RHS event or permanently inserted into my urethra. Elle’s experience with self-catheterisation is one that many women like me, can’t share resonate. Elle’s experience of self-catheterisation is one that unfortunately only seems to resemble the same guide that sits on a google search as opposed to legit human insight driven content. We cannot hide the fact that the NHS would love for women living with Fowler Syndrome to live with intermittent self-catheters and crack on but if TikTok and Instagram are to be heard and seen, this isn’t the case. Research will tell you that 59% can self-catheterise, and I’m aware of two who can and the first is Elle and the other is a wonderful content creator named HannahandherHealth. Research will want to point to women self-managing because it makes living with this condition bearable which couldn’t be further from the truth.
If I take my experience as a starting point, it’s not been harmonious. I’ve had an iPhone torch used to locate my urethra while my feet were in stirrups, I’ve been assaulted by a urology registrar, I’ve been refused catheter support due to my age, I’ve been asked if my UTI was all in my head which later resulted in sepsis, I’ve had male nurses come into my bedroom without chaperones, I’ve had catheter changes in my bed oh and countless challenging catheter changes. That’s been nearly three years.
A major theme is medical dismissal
Elle says that when she sought specialist help, she was characterised as an anxious young woman and advised to relax, practise yoga and focus on wellness. I found this topic particularly necessary given her experience isn’t an isolated one, but I can’t help but feel frustrated in that we have so much of women’s health being spoken about with this undertone of medical dismissal. I can’t help but nearly health condition that affects only women has this undertone. It should not be our normal, but unfortunately we have no option. I’ve been grateful that the two Consultants I have had, have believed me which has made that side easier to accept. BUT, I’ve found Registrars particularly difficult to digest. Often, I’ve been refused anti-biotics for symptomatic UTIs and been told to just accept that stuck catheters are painful. I’ve even undergone formal proceedings over an assault in an A&E facility. This dismissal that Elle speaks of was very gentle, and I don’t feel investigated why, so I have. Female urinary retention has historically been difficult to characterise. Older literature divided causes into categories including so called “psychogenic” urinary retention. Modern reviews emphasise that Fowler’s and other functional disorders can produce genuine physiological abnormalities, including abnormal external urethral sphincter activity. That gives you an important historical and cultural thread. Women with unexplained urinary symptoms have existed at the intersection of urology, gynaecology, neurology, pelvic floor medicine and sometimes psychology. When nobody can immediately identify a structural cause, there has historically been room for those symptoms to become interpreted through psychological explanations. That makes Elle’s reported experience of being described as anxious much more significant than an unfortunate comment made to one woman. It connects with a much older problem in how unexplained female urinary dysfunction has been conceptualised.
She has also undergone sacral nerve stimulation
When my local consultant made the referral to the specialist facility he told me that my ‘old’ life could be restored via sacral nerve stimulation. This operation is a two stage. It’s seen as the golden bullet for Fowlers and women spend ages on waiting lists to be considered for the surgery. I spent two years being told this is the thing you need and I put alot of my energy questioning and worrying that I wouldn’t be eligible for the procedure. Later down the line, it turned out that it wasn’t going to be suitable and it wasn’t even going to work. I had the procedure in December 2025, Sacral nerve stimulation involves surgery to place a thin electrical lead near the sacral nerves in the lower back, usually followed by implantation of a small pulse generator under the skin of the buttock, which sends mild electrical impulses intended to improve communication between the nerves controlling the bladder and urinary sphincter. Stage one, saw the surgeon putting a temporary lead is placed through my lower back near the sacral nerves and connected to an external stimulator, allowing doctors to test whether electrical stimulation improves bladder emptying. It failed in my case. It flared up my sciatica and failed to get my bladder to release urine. So, the device was removed. Had it been successful, I would’ve had a second operation to implant the permanent pulse generated under my skin providing me with the ability to urinate again. For Fowler’s syndrome, sacral neuromodulation can restore spontaneous urination in around seven in ten women, but it is not a cure all. Some women continue to catheterise, some lose effectiveness over time and revision surgery is common.
