Hi, my name is Millie, and I’m reaching out during one of the most difficult times in my life.

After over five years of unexplained and debilitating bladder issues, I finally have a diagnosis: Fowler's Syndrome — a rare and poorly understood condition that prevents the bladder from emptying properly, often leading to severe pain and urinary retention.

Recently, I received the devastating news that my bladder is now atonic, meaning it no longer functions on its own. As a result, my doctors have urgently recommended the placement of a suprapubic catheter — a surgical tube inserted through the abdomen to drain the bladder. It allows urine to drain from the bladder into a collection bag or a valve, bypassing the urethra.

Despite years of asking for help, my condition was only recently taken seriously. I’ve now been referred by East Kent medical services to a specialist team in London, as my case is considered too complex for local care. There, I’ll undergo further assessments and life-changing surgical treatments that could improve my quality of life.

Living with Fowler's is exhausting, both physically and emotionally. I now need help funding:

* Catheter-related supplies and hygiene products not fully covered by the NHS

* Travel costs for frequent appointments and surgery in London

* Temporary accommodation near the hospital during treatment and recovery

* Day-to-day living expenses while I’m unable to work full-time

Additionally I hope to be able to get

- Discreet and stylish catheter bag covers

- Comfortable support belts and clothing adaptations

- Skin-friendly adhesives and barrier wipes alongside other skin care/ cleaning equipment.

This will hopefully make living with the new device that slightly bit easier.

What makes all of this even harder is that Fowler’s is only one part of my health challenges. I’m also managing a long list of chronic conditions, including endometriosis, PCOS, adenomyosis, chronic UTIs, functional neurological disorder (FND), idiopathic intracranial hypertension, papilledema, bile acid malabsorption, and proctitis.

Every day is a battle — with pain, fatigue, infections, mobility struggles, and endless hospital visits. I’ve always tried to stay strong and push through on my own, but my health has taken so much from me — including my ability to work full-time — and the financial burden has become overwhelming. Trying to keep up with medical costs and travel to life-saving appointments in London has left me drained in every way.

I never imagined I’d have to ask for help like this, but I’ve reached a point where I simply can’t do it alone. Any amount you can give will go directly toward managing my condition and accessing the specialist care I urgently need. Your support could help relieve some of the pressure and bring me closer to a better quality of life.

If you’re not in a position to donate that is of course absolutely fine and I would never want anyone to feel they have to support but if you’re able to just consider sharing my story I would be very grateful.

Raising awareness is powerful too and even just reading my story I am extremely grateful.

Thank you, truly, for taking the time to read this.

With all my heart,

Millie xx

Update 23rd sept 2025!

Update

23rd September 2025 was meant to be the day I finally found some relief from Fowler’s Syndrome with a surgical tube… but instead I woke up to very different news.

The surgeon explained he had to stop the planned procedure, as going ahead would have caused a permanent bowel perforation and left me with a stoma that could never be reversed. He also told me the surgery I had just three months ago had already reversed itself, so for now he repeated that to keep things going.

What this really means is that it’s now an absolute must that I have major surgery. My bladder simply can’t cope with any tube or urine inside it, so my urine will need to be completely redirected through my bowel. This will leave me with an additional stoma – an “extra belly button” – to drain my urine.

Normally this is called the Mitrofanoff procedure. In this surgery, the appendix is usually used to create a little channel from the bladder to the skin, so you can pass a catheter through it and safely empty your bladder. But because my appendix burst last month and caused sepsis, the surgeons will instead use part of my intestines to create this channel.

For now, I recover from my 6th general anaesthetic, knowing it won’t be my last. Life ahead is going to look very different – a bridge we never wanted to cross – but I’m so thankful to the professor surgeon yesterday and the London teams for their care and for knowing what needs to happen next.

Surely this storm is going to end soon?

And breathe

March 2026 Update:

I’m now under the care of GOSH and am now being treated at a London hospital for neurology and urology. Recent tests, including a urethral EMG, showed that I have nerve damage affecting the area around my bladder. I’ve also been found to have weakness down the entire left side of my body, from head to toe. Which hasn’t been helped by having a previous history of Bell’s palsy.

Because of this, I’ve been referred for an urgent MRI of my head and spine, scheduled for April, before we plan the big surgery to ensure nothing sinister is going on alongside these conditions. The doctors have told me that surgery is now the only option, and my case is one of the most severe they’ve seen in a while.

Travelling back and forth to London for appointments has become physically exhausting and financially overwhelming, with costs continuing to rise. Any donations, no matter how small, would be deeply appreciated and would help ease some of this burden.

I’m doing my best to stay positive and keep doing the things I love, but it’s been incredibly hard facing so much difficult news, I have also had a recent diagnosis of PTSD which adds another layer of anxiety and worry, and different battles to face when attending all these hospitals and tests

Thank you so much for your support — it truly means everything to me.