Guess Who’s Back…

After procrastinating over this blog post, there’s nothing like a global pandemic to get the creative juices flowing. Living alone during lockdown, there’s only so many times I can deep clean the kitchen (just kidding, I’m watching Tiger King on repeat).

Here’s a little recap – In 2016, I was diagnosed with Interstitial Cystitis and went through various treatments including bladder instillations and medication. After an undoubtedly tough year, I went into remission and despite developing a real taste for Gin, my bladder barely flinched for two years. 

That came to an abrupt halt in December 2019, when I woke with all too familiar symptoms and was diagnosed with a UTI. I responded well to a 3 day course of antibiotics but my relief didn’t last long.

I always vowed if my symptoms returned, I would take a trip to Harley Street and seek the advice of Professor James Malone-Lee. I had been fascinated with his work in treating Chronic UTIs and success stories from patients were hard to ignore. 

Now for the science but with a disclaimer: I have no medical expertise, unless you count expired First Aid Training, so I’ll keep this simple.

 

Urine dipsticks and cultures used by the NHS
miss 70% of infections 

 

That’s a scandal deserving of it’s own blog post.

These missed infections mean patients are often handed the diagnosis of Interstitial Cystitis, an incurable bladder condition with limited treatment options.

 

What if I said your bladder could be cured?

 

When a UTI goes untreated or fails to improve with the short course of antibiotics GP’s can prescribe, bacteria moves from the urine into the bladder wall making it much harder to treat.  

Professor James Malone-Lee and his team, test urine in a different way to the NHS.

A fresh urine sample is looked at under a microscope and a diagnosis is made based on white blood cell and epithetical cell counts.

The treatment is long term, high dose antibiotics. 

Unfortunately, the National Institute for Health and Care Excellence (NICE) guidelines do not recognise the existence of Chronic UTIs and many in the NHS are unwilling to accept it as a diagnosis. Most patients are forced to fund treatment privately, although there is one NHS clinic open in London which the Professor headed before he retired. 

 

Harley Street

 

In February 2020, I toddled off to 10 Harley Street feeling desperate and anxious. In the two months since my bladder ignited, my eyes had grown sore from crying myself to sleep in pain. 

I opted to see one of the Professor’s team, Dr Swamy, as she had appointments much quicker than the Professor.  

Without knowing anything about my symptoms, Dr. Swamy was able to say, within a matter of minutes, that I had a Chronic UTI. All she had to do was look at my urine under a microscope. It really was that simple. I sat there holding back tears of relief and anger. 

 

Five NHS tests had missed my infection

 

Interstitial Cystitis is a diagnosis of exclusion and one of those exclusions is an infection. So, because I have an infection, I don’t have Interstitial Cystitis.

Mind. Blown. 

Two months into treatment and it’s been far from easy. The first antibiotic triggered debilitating ear problems and three antibiotics later, I still haven’t found one I can tolerate for longer than 10 days. High dose antibiotics can cause an array of side effects, although many patients have no issues. I’m not one bit jealous…

 

Within a year of starting treatment,
70% of patients are better and
have stopped taking antibiotics

 

The wonderful people at CUTIC (Chronic Urinary Tract Infection Campaign) have a website full of information about Chronic UTIs, including a list of all medical professionals who treat them in the UK and US.  You can find their website at end of this post. 

 

There is no easy fix with a Chronic UTI,
but there is hope

 

If this is the first time you have heard of a Chronic UTI, I understand it can be overwhelming. Please take some time to look through the links below which I hope will answer any questions you have. 

CUTIC Website

Chronic UTI Explained

Guardian Newspaper article about Chronic UTIs 

Mail Online article about Chronic UTIs

Professor James Malone-Lee’s Twitter Page

CUTIC Campaign for Better Testing

There are a couple of fantastic Facebook Support Groups, but you must be in treatment or awaiting an appointment with a Chronic UTI specialist to join. If this applies to you, please contact me and I will pass on the details.

As always, my email is open for anything you want to chat about – brokenbladder@gmail.com

Take care of yourselves,
Emma x

 

2 thoughts on “Guess Who’s Back…

  1. ReneeLomen says:

    Hi Emma,

    I wanted to say thank you for this blog. I think this is what I have, too! I’m so thankful to know I’m not alone.

    Since Christmas 2019 I’ve been in emergency 4x with a UTI what was originally thought to be ICS. I’ve not been diagnosed or anything like that but your post has me thinking this must be the deal with my broken bladder lol. I was referred to a urologist but than covid happened so who knows when that will happen.

    So thank you, thank you for bringing this to light and sharing your story and the resource information. Wishing you well!

    Renee

    Sent from my iPhone

    >

    Like

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