Fowler's Syndrome UK

Fowler's Syndrome UK https://linktr.ee/Fowlerssyndrome

Fowler’s Syndrome UK is a registered charity (1196903) that works to raise awareness, promote education and increase research into Fowler’s Syndrome, with the aim of reducing diagnosis time and improving patient care nationwide.

Psychological support for self-cath💚As part of our upcoming webinar, Psychologist Caroline Selai will be discussing conf...
26/05/2026

Psychological support for self-cath💚

As part of our upcoming webinar, Psychologist Caroline Selai will be discussing confidence, anxiety, trauma informed care, emotional wellbeing, and the psychological impact of managing long term bladder conditions.

Many people living with Fowler’s Syndrome struggle not only physically, but emotionally too. This webinar aims to create a supportive and informative space where these conversations can happen openly and compassionately.

The session is free to attend and open to anyone wanting more support, understanding, and practical guidance.

📅 27 May
🕖 7pm UK time
💻 Free via Eventbrite

Register here:
https://www.eventbrite.co.uk/e/making-self-catheterisation-easier-practical-tips-support-tickets-1988829831564?aff=oddtdtcreator&keep_tld=true

You’re invited to the Fowler’s Syndrome UK London Meet-Up 💚Join us for a relaxed and welcoming afternoon/evening for wom...
21/05/2026

You’re invited to the Fowler’s Syndrome UK London Meet-Up 💚

Join us for a relaxed and welcoming afternoon/evening for women living with Fowler’s Syndrome, urinary retention and related bladder conditions.

🗓 8th June 2026
📍Voluntary Action Islington, London
☕ Tea, cake & good company
💬 Open conversations, support and shared experiences
📸 Plus our Fowler’s Fox photo corner!

Whether you’re newly diagnosed, still searching for answers, or have been living with symptoms for years, you are very welcome.

We’d love to see you there💚

Book your free place here: https://www.eventbrite.com/e/fowlers-syndrome-uk-london-meet-up-tickets-1989834935858?aff=oddtdtcreator&keep_tld=true”>https://www.eventbrite.com/e/fowlers-syndrome-uk-london-meet-up-tickets-1989834935858?aff=oddtdtcreator&keep_tld=true

📣 SAVE THE DATE! 📣We’re so excited to share three upcoming FSUK community events designed to support, educate, and conne...
20/05/2026

📣 SAVE THE DATE! 📣

We’re so excited to share three upcoming FSUK community events designed to support, educate, and connect people living with Fowler’s Syndrome and related bladder conditions 💚

Whether you’re looking for practical advice, expert-led education, or simply a chance to connect with others who understand, we’d love to have you join us.

🗓️ 27 MAY
Making Self-Catheterisation Easier: Practical Tips & Support
An informative online session with expert speakers covering confidence building, practical guidance, accessibility, pelvic floor function, and psychological wellbeing.

🗓️ 8 JUNE
FSUK London Meet-Up
A welcoming in-person evening to connect, share experiences, and build community in a safe and supportive environment. Limited spaces available!

🗓️ 18 JUNE
Living Well with Fowler’s Syndrome: The Role of Pelvic Floor Physiotherapy
An expert-led discussion exploring the role of pelvic floor physiotherapy within multidisciplinary symptom management.

All links to purchase your spot are in our bio.

We’re hosting a free online webinar all about improving confidence and support around self catheterisation 💚As part of t...
19/05/2026

We’re hosting a free online webinar all about improving confidence and support around self catheterisation 💚

As part of the session, Occupational Therapist Clare Nicholson will be discussing accessibility, devices, aids, adapting techniques, and practical ways to make self catheterisation more manageable day to day.

We know that everyone’s experience is different, and sometimes small changes can make a huge difference to comfort, independence, and confidence.

This webinar is designed for anyone living with Fowler’s Syndrome, urinary retention, or long term catheterisation who wants more support, information, and practical advice from experienced professionals.

📅 27 May
🕖 7pm UK time
💻 Free via Eventbrite

Register here:
https://www.eventbrite.co.uk/e/making-self-catheterisation-easier-practical-tips-support-tickets-1988829831564?aff=oddtdtcreator&keep_tld=true

🦊 Alexis' Fowler’s syndrome story 🦊✨ Please comment, share and like to help us spread awareness. Thank you for sharing y...
19/05/2026

🦊 Alexis' Fowler’s syndrome story 🦊

✨ Please comment, share and like to help us spread awareness. Thank you for sharing your story, Alexis ✨

I’m Alexis and I’m 24 years old and was diagnosed with Fowlers Syndrome in September 2023. It all started after I gave birth to my son Leo in May 2019. I lost full sensation of my bladder and has really bad incontinence for a few years but never really looked into it as I thought it was normal after giving birth. In early 2023 I lost my ability to p*e out of nowhere. Looking back now they are saying most likely had retention so bad my incontinence was actually my bladder leaking from being so overfilled. This was when I had my first catheter since 2019! In September 2023 I had a urodynamic study to see what was happening with my bladder to cause the retention which come back with Fowlers Syndrome. I was taught how to self catheter as indwelling just weren’t working and coming out when balloon was filled. In October 2023 I had another surgery to try and help with trying to p*e again but sadly had no luck. In March 2024 we decided that getting a suprapubic catheter would be a better option long term to empty my bladder which helped for a while but had come with some bad infections. In May 2024 I got the opportunity to get a sacral nerve stimulator implanted into my back to see if that would make me p*e again. After trialling a couple of months it didn’t help at all and was causing more harm than good moving in my back and being quite painful. Sadly I don’t have a happy outcome to my story yet but there’s now talks of a urostomy bypassing my bladder and finding ways to help with my severe bladder pain. Fowlers syndrome has changed my life for the good and bad and having little to no research especially in Australia and hope one day it will. For now I take each day at a time and go with the flow.

We’re hosting a free webinar focused on improving confidence and support around self catheterisation 💚Clinical Specialis...
15/05/2026

We’re hosting a free webinar focused on improving confidence and support around self catheterisation 💚

Clinical Specialist Nurse Angela Rantell will be discussing practical approaches, products, troubleshooting, process, and ways to improve confidence with catheterisation.

Whether you are newly learning to self catheterise, finding it difficult, or supporting someone else through the process, this session will offer practical advice from experienced healthcare professionals.

The webinar also includes input from occupational therapy, physiotherapy, and psychology specialists to provide a more holistic approach to support.

📅 27 May
🕖 7pm UK time
💻 Free via Eventbrite

Register here:
https://www.eventbrite.co.uk/e/making-self-catheterisation-easier-practical-tips-support-tickets-1988829831564?aff=oddtdtcreator&keep_tld=true

We’re really pleased to be hosting this upcoming webinar focused on improving confidence, comfort, and support around se...
15/05/2026

We’re really pleased to be hosting this upcoming webinar focused on improving confidence, comfort, and support around self catheterisation 💚

This free online session will bring together a multidisciplinary panel of specialists to discuss practical approaches, accessibility, physical function, confidence, anxiety, and trauma informed care.

We know that self catheterisation can feel overwhelming, isolating, or difficult to talk about. Our aim with this session is to create a supportive and informative space where people can learn, feel heard, and access trusted guidance from experienced professionals.

Speakers include:

• Angela Rantell – Clinical Specialist Nurse
• Clare Nicholson – Occupational Therapist
• Natalia Vasquez – Physiotherapist
• Caroline Selai – Psychologist

📅 27 May
🕖 7:00pm UK time
💻 Free via Eventbrite

Whether you are newly learning to catheterise, supporting someone else, or looking for practical tips and reassurance, you are very welcome to join us.

🔗 Link in stories and here:
https://www.eventbrite.co.uk/e/making-self-catheterisation-easier-practical-tips-support-tickets-1988829831564?aff=oddtdtcreator&keep_tld=true

If you’re navigating symptoms, waiting for answers, exploring treatment options or supporting someone with Fowler’s Synd...
15/05/2026

If you’re navigating symptoms, waiting for answers, exploring treatment options or supporting someone with Fowler’s Syndrome, our free patient guide is here to help 💚

We created this resource to make information easier to access and to help people feel more informed and less alone throughout their journey.

The guide includes:
• Symptoms and diagnosis
• Treatment options
• Associated conditions
• Support and resources
• Information for family members and loved ones

Many people with Fowler’s Syndrome spend years searching for answers and seeing multiple healthcare professionals before diagnosis. Having reliable, patient friendly information can make a real difference.

The guide is completely free to download via our website.

Link in bio

Fowler’s Syndrome is still widely misunderstood, and for many people, getting diagnosed can take years.Many patients are...
15/05/2026

Fowler’s Syndrome is still widely misunderstood, and for many people, getting diagnosed can take years.

Many patients are told their symptoms are anxiety-related, dismissed, or repeatedly treated for other conditions before finally getting answers.

This recent article helps highlight some of the realities of living with Fowler’s Syndrome, including the impact it can have on daily life, healthcare experiences, and long-term management.

Awareness matters. Earlier recognition and better understanding can make a huge difference for patients 💚

You can read more via the link in our story.

🦊 Laura’s Fowler’s syndrome story 🦊✨ Please comment, share and like to help us spread awareness. Thank you for sharing y...
15/05/2026

🦊 Laura’s Fowler’s syndrome story 🦊

✨ Please comment, share and like to help us spread awareness. Thank you for sharing your story, Laura ✨

So I was on a prophylactic dose of trimethoprim. When the course finished, I was then experiencing further UTIs.
I saw my urologist, and they agreed to prescribe uromune - with me understanding that it is not licensed for treatment of UTI's.
I was prescribed this in July 2024- to my surprise, the pharmacy at the hospital had it in stock!
It's a sub lingual spray that you spray under the tongue every day for 3 months (it tastes like pineapple!)

I was very lucky that for me, I did not have any UTI'S during this course.
Since then, I've had only had one UTI - this was from being catheterised during an operation! Prior to the uromune , I had 16 uti's in one year, which was always caused by E-Coli.
As you can imagine this has totally changed things for me!
I have seen my urologist and they have said if things start to deteriorate again they would be able to potentially do another course. But for now everything is great!

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