When “Stop” Doesn’t Mean Stop: A Hospital Experience I Should Never Have Had

If there is one thing that living with Fowler’s Syndrome has taught me, it’s that you become fluent in your own body in a way you never wanted to be. You learn its language, its warning signs, it’s quiet panic. The difference between this language and learning French or German, it’s variable everyday. It changes without warning and doesn’t have accents to get muddled up between. And you also learn to advocate for yourself because sometimes the healthcare system you are relying on is creaking under pressure, misunderstanding or simple disbelief.

I can’t lie, my Fowlers journey has been humbling to the say the least. If I look back to my ME/Peripheral neuropathy days I spent EVERY appointment trying to prove to senior that I was battling horrific painful, and life-changing symptoms to more than adequate neurologists. Yet Fowlers, I’ve been believed and heard every step of the way. I know, that I am a minority, because lots of women I speak to are slipping through the cracks with several trusts writing urinary retention and bladder issues as anxiety or panic attacks. Excusing the Dr, I describe as Mr iPhone following the use of his iPhone torch to find my urethra. At one stage it dawned on me that my labia might be online on a place Ed Gein might have lingered on. Is a Urology fetish a thing?

I know that ‘consent’ is a very loaded word, it carries so much weight in light of the Me Too movement but this is my story and one that has been shared with appropriate individuals and is being investigated.

The morning everything unravelled

It started with a split catheter valve and the familiar creeping burn of a urinary tract infection. Those two things together are never a fun combination, so I did what I always do: reached out to Urgent Care. I have 2 nurses who can change my catheters without it getting stuck, they’re fabulous and lead by my direction. Both of them know my history, my body, and she usually manages catheter changes without issue. “Tell me how I should be pulling”, “you know your body better than I do”. As the procedure begun, with her deflating the water that keeps the balloon in my bladder nothing was draining – already I think, what the heck? After two tugs she makes the decision that she cannot remove the catheter without causing significant distress and damage to my urinary tract and that it would be preferable and advisable to seek A&E guidance because it was paired with an infection. I ended up in our Urological A&E. A place I spent 96 hours in last year and as of yesterday, another 48 hours this year.

I expected the usual. Quick observations, a registrar who knew the drill, a tidy swap of catheters and home again. This has been my reality for nearly two years.

Instead, I walked into one of the most distressing medical experiences I have ever had.

When pain is visible only to the person in it

I told the nurse on arrival that I was in 10/10 pain. Not “a bit sore”. Not “uncomfortable”. Ten out of ten. The kind of pain that makes your vision sparkle at the edges. My urethra hd it’s own pulse, my bladder had a dull ache, it was aggy as arseholes. She took me seriously, the nurses in this urgent centre have never invalidated my experience, they’ve always believed and advocated.

But when the doctor arrived, everything shifted. My observations were dismissed. My pain was dismissed. I was told I “did not look like someone in pain” because I was well presented. I think it’s really important to stress that as a self-employed PR Consultant I must always look presentable and I will always dress appropriately for any outing. Heck, I could meet my true love. My pain should not be measured on my appearance but my experience. The nurse asked if bloods should be done, and he rejected them because ‘this will be a quicky’. According to the General Medical Council, a patient’s own report of pain is subjective, individual and must be taken seriously regardless of appearance.

This is not a rare story for women. In a survey of 5,100 UK adults, 56 % of women said their pain had been ignored or dismissed by healthcare professionals. Another recent review noted that women are systematically more likely than men to have their pain underestimated or undertreated even when reporting similar pain levels.

Consent is not a suggestion

After justifing my pain, I expressed that before any catheter could be removed I needed adequate pain relief due to the nature of my pain. The Doctor began to examine and sneakily decided to tug the catheter. I yelped with pain, I said no. I said stop. I asked for pain relief before anything was attempted. These are basic rights – not luxuries, not requests, not niceties. Consent is not a one-off tick box. It is ongoing. I’ve even consulted the General Medical Council who have also confirmed that consent is an on-going matter, not just a one-off. It’s not implied, it’s not passive and it’s not an assumption. It can be withdrawn at any moment. And when it is withdrawn, the procedure stops. Full stop. This is not patient preference. It is medical ethics.

But that is not what happened.

Despite saying no, despite physically flinching away, despite being visibly distressed, attempts continued. More than once. Long enough that time lost its shape and the pain became something else entirely. At one point I had to physically tap a hand away from my lady garden. No patient should ever have to defend their own body in a clinical room. The Foundation Doctor and Nurses had to pull him away and ask him to leave while I regained my strength and received the pain relief. I was shaking.

Pain relief is not optional

I have had more than twenty catheter changes. I’ve have met multiple clinicians, some are better than others. Generally, male health care professionals are better at placing catheters – but this man, jesus mary and the wee bloody donkey. Every single one has involved numbing gel. Sometimes enough that I have had to change underwear afterwards. That is fine. The more, the better. Lube me up. That is how you make an already intrusive procedure bearable, especially when you have scar tissue and a history of painful catheter trauma. ‘I’m going to administer some numbing jelly’ he said, I said, ‘you will not be adminstering anything. I know how to inject numbing jelly into the open wound I’ve had for 12 months. ‘You’re doing it wrong’. Hun, you don’t need to give me lessons in syringing my minge. I’m a seasoned professional, if PR doesn’t work out I might retrain as a Urology nurse. As I applied a generous amount of numbing jelly, he said “we do not normally use numbing gel” and “you do not need it” while already in agony felt like a dismissal of everything I had lived through. NICE guidance is clear: avoid trauma, minimise pain, preserve dignity. None of that was honoured in the room that day. I recorded the audio from this appointment and in the transcription that I have listened to, I hear ‘do me a kindness and get your hands off me‘ is repeated on several occasions.

The moment everything snapped

There was a moment, somewhere around the ninety-minute mark, when pain tipped into fear. The kind of fear that sits low and heavy because you realise you are trapped in a vulnerable position with someone who is not listening to you. He dismissed the observations read by the nurse, he ignored my context and even got my medical notes wrong. Someone who is continuing despite you saying no. Someone who is pulling at a part of your body you cannot protect. It took a camera being inserted up into my urethra and another guide wire and needle in my catheter site, to find the catheter and pop the balloon that had wedged itself in. I was told today, that by the third attempt I should’ve been taken down and been sedated to reduce the emotional distress that I was in, yet he said ‘we can’t do that because we’re busier and it’s unnecessary. I’d have chopped a toe off to be out of this scary and quite harrowing environment.

When the catheter finally came free, not gently but under traction, the clinician walked out of the room without acknowledging the distress they had caused. No debrief. No apology. Nothing.

And yet, there were people who saw me. There was a nurse who advocated for me at every point. There was an SHO who stepped in when things escalated. There were staff who cared. Who understood. Who recognised trauma when they saw it. I sit here with mixed feelings, I’m due to have sacral nerve modulation in two weeks with the hope of allowing me to pass urine naturally again – it’s still at risk of being cancelled due to the ongoing Doctors Strikes, and I find myself thinking I witnessed a ‘Junior Doctor’ being told to essentially be quiet and offering a maturer and dignified patient experience being told by her senior and who is paid much more. I’d be striking.

Why I am writing this

I did not want to write this. I hate writing complaints. But, I am very good at writing complaints and believe that complaints, while unpleasant allow feedback to be given in these situations to prevent another patient experiencing what I have. I hate adding to the pressures of a system that is already stretched thin. But the truth is that silence helps nobody. Not me, not the next patient, and not the clinicians who genuinely want to provide good care.

As I type, I’ve learnt that this doctor is now under a formal investigation because not only was my account enough, but all three witnesses came forward after I was discharged to speak. I was asked, ‘what would you like to happen?’ and I said, ‘Your Senior Reg needs to learn that this was not acceptable, and one that I cannot simply forget. It can’t be undone but he can learn from this. He must be investigated, because I do not believe that this is an isolated incident. If this were isolated, my claims wouldn’t have been taken so seriously is my belief.

What happened cannot be undone, but it can be learnt from. It must be.

The real takeaway

This is not about anger, although I would be lying if I said I was not angry and frankly traumatised. This is article is about autonomy. About pain. About being believed. About remembering that patients are not clinical objects. We are humans with histories, trauma, fear, and bodies that respond in ways only we can feel.

Fowler’s Syndrome has already taken so much control from me. Medical trauma should not take the rest.

Gratitude where it is due

I want to end with the people who did get it right. The consultants and nurses who have supported me over the last two years. The staff in the emergency urological department who saw me, who validated my distress, who advocated for me when I could not advocate for myself.

Their care is the reason I am brave enough to speak up when things go wrong.

And things went very wrong.

I hope sharing this helps ensure it does not happen to anyone else.