Wednesday, 27 Sep 2023

I peed blood – but still doctors wouldn't take my pain seriously enough

I am at my best friend’s hen do, or rather I’m not.

Leaving the hens steaming in Harrogate’s Turkish Baths, I run into a hospital walk-in centre and slam a bottle of bloody urine down on the counter.

Taking it upon myself to do this DIY sample is something I’ve done before, and it shocks people. It also means that, just sometimes, I am seen sooner and taken more seriously than I would be without it. 

As the receptionist takes my details, I pace up and down. The millisecond she finishes, I sprint to the toilet, worried I won’t make it in time.

A tiny trickle laced with pink is all I can produce, but the urge to push and the accompanying agony – sharp and all-consuming – is huge. The whole experience is worse than childbirth, and I’ve done that three times.

This, of course, is cystitis and I’ve had it, on and off since I was 16. With September being Interstitial Cystitis Awareness Month, I want to shine a light on how intrusive this condition is and why it should never be seen as a normal part of being a woman.

Typically triggered by sex, cystitis can also emerge if I’m dehydrated from drinking vodka shots with 20 hens. Bath salts, bombs or bubbles are not my friend, nor are thongs, waxing, or careless wiping.

I’ve managed it for nearly 30 years through a strict regime of regular hydration, peeing after sex, and a technique called ‘bottle washing’ if there’s no shower nearby.

When prevention doesn’t work, antibiotics do and the relief they bring is overwhelming.

I’m one of the lucky ones. My bouts are acute – they only surface once or twice a year now. But for many women with chronic urinary tract infections (CUTIs) or interstitial cystitis (also known as painful bladder syndrome), this misery never really stops.

UTIs are among the most common bacterial infections. As many as 50% of women in the UK will get cystitis at least once, 20-30% experience a recurrence and around 1.6million suffer from chronic UTIs.

In the UK, there is only one NHS clinic dedicated to treating recurrent UTIs.

Poor understanding means advice can be dubious. I was regularly told to pee before sex and glug cranberry juice – recommendations that are now viewed more as myth than science.

I felt patronised and doubted. Didn’t they know how bad it was? Why wouldn’t they trust me?

But it’s the flawed testing regime, based on outdated research that is most alarming.

Evidence shows that standard urine tests miss up to 90% of chronic UTIs. As a result, some women are denied the treatment they need.

Back in Harrogate, I was sent to the hospital’s on-site GP who took one look at my bloody bottle and prescribed antibiotics.

He didn’t express any alarm about my DIY sample and there wasn’t much chat about previous incidents or how I’m going to manage any recurrences. Shuffling out to rejoin the hens, I felt shocked by his acceptance of what is a miserable condition for me.

He did, however, prescribe antibiotics the first time I asked, like most of the GPs I’ve seen.

But the type of treatment I’ve been handed over the years hasn’t always helped.

Some doctors gave me a three-day course that didn’t always shift the infection – maybe why I had so many recurrences. At the time I didn’t question these short prescriptions and just assumed that return infections were common, and I was susceptible.

I’d often request a spare dose for holidays in case I found myself crippled by cystitis abroad, with no easy access to treatment. But the response from GPs (all male) was always a flat no.

I felt patronised and doubted. Didn’t they know how bad it was? Why wouldn’t they trust me?

At the peak of my infections, there was no one who understood the symptoms of cystitis better than me. From the first twinges, I knew the UTI clock was ticking, and it would have made sense to have preventative pills in my bag.

I still don’t have this proactive dose.

Misogyny has a lot to answer for here. Not only has it made UTIs one of the most neglected and under-researched areas of women’s health, but it’s also led to many women like me feeling mistrusted and shamed.

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Platform is the home of Metro.co.uk’s first-person and opinion pieces, devoted to giving a platform to underheard and underrepresented voices in the media.

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Often referred to as ‘honeymoon cystitis’, the sex-association gives the condition an added dimension.

A friend told me about a woman in her late fifties with a new partner. Her recurrent UTIs were met with eye rolls from friends who felt it was the cross she must bear if she would insist on having a passionate relationship again.

I’ve also felt ashamed for having a condition connected to sex. Could this be another reason we’re not taken seriously by male GPs in an industry plagued by sexism?

When I told some people I wanted to write about cystitis there was an awkward silence.

It’s still viewed by many as a slightly embarrassing everyday ‘women’s problem’, caused by our anatomy and, often, what we get up to. Do we really need to say any more?

Charity CUTIC (Chronic Urinary Tract Infection Campaign) thinks we do, and they’re working hard to shift this harmful normalisation.

They’ve increased the profile of the disease through media coverage and by creating information sheets for people to share with their medical professionals. NHS web pages have been updated with more information on chronic UTIs.

And, earlier this year, the National Institute for Health and Care Excellence (NICE) advised doctors that diagnosis of UTI can be made for women under 65 when two or more symptoms are present, without the need for a test.

For me, tests felt unnecessary anyway. It was quite obvious from my symptoms that I had an infection. Why did the GP need a positive dipstick to confirm things?

Importantly, women with cystitis will soon be able to access antibiotics from pharmacies – meaning they won’t have to wait around to see their GP. 

This breakthrough is a big one for me. No longer will I have to wait for a doctor to decide whether or not I have an infection, when I already know the answer.

Having access to medication will allow me to control my health and hopefully I’ll never again need a bloody bottle of urine to be believed.

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