Aoife’s Journey with Fowler’s Syndrome

As a teen, Aoife Madden was diagnosed with a chronic bladder condition and had to learn to self-catheterise. Read about her journey, and about how she created a community platform for other intermittent catheter users to share their experiences.

Learn how Aoife maintains a “can do” attitude and helps others do the same.

Background

Aoife Madden’s bladder condition first appeared at the age of 15. It’s a difficult age for many people, and an achingly slow diagnosis (which Aoife and her family had to fight to have precisely defined) meant the rest of her teenage years were pretty hard. Once Fowler’s Syndrome was confirmed, Aoife’s “can do” attitude took hold and despite having what will be a chronic, lifelong condition, she set off to travel in Asia, before heading back to college to get a degree and then train to become a teacher. Aoife lives in the UK.

In 2020, alongside her full-time job and busy personal life, Aoife launched B is for Bladder, a community platform from which she talks openly and honestly about her experiences of bladder dysfunction and management, and which allows others to ask questions and share their own stories.

I can, not I can’t 

When I was first diagnosed, everyone was telling me, you won’t be able to do this, you’ll never be able to work full-time, you’ll never get a degree...well, they were wrong! I work as a primary school teacher and love my job, my colleagues are there for me when I need support, my family is amazing and I’ve been living with my partner Jack for two years now.

Not being able to pee is a pain – a physical pain

I was about 15 when I got glandular fever and became very ill, and I’d never been sick before so it was pretty frightening. I was hospitalized because I was very dehydrated, and then developed a rash across my groin. The nurses thought it was a heat rash but my mum (who is also a nurse) suspected something worse and asked for more tests, which showed I had shingles. The rash was everywhere by then and I also had become unable to pee, which was incredibly painful. 

The consultant thought it was because I was stressed. The nurses tried everything to get my bladder to do its thing, from muscle relaxants to putting me in a bath, soaking my hands in cold water...but nothing worked. The next morning, in agony, they sent me to the operating theatre where they found out the shingles had affected my bladder from the inside, and caused painful (and damaging) urinary retention.

Fighting for a diagnosis

The next six months were really difficult. I couldn’t empty my bladder naturally and was still in a lot of pain – and the consultant didn’t have any answers at that time. Then a friend of my mum’s suggested we try to get into a specialist urology clinic at UCLH (University College London Hospitals) which dealt with complex issues like mine. We pushed hard through the GP and eventually got a referral – and then everything started to fall into place. 

I was diagnosed with Fowler’s Syndrome, named after Professor Clare Fowler who first identified it in the 1980s, and who set up a uro-neurology unit at UCLH. It’s a rare disorder affecting young women, in which the urethral sphincter won’t relax and open to allow the bladder to drain. It means that I don’t get that normal sensation when my bladder’s full and I need to pee – instead I get agonizing pain. 

Having to get used to Intermittent Self Catheterization (ISC)

It took me a while to learn intermittent self-catheterisation (ISC). The way I was taught was to use a mirror to find my urethra, but I kept putting the catheter into my vagina by mistake. For me it was painful at times, and the type of catheter the GP and nurses gave me wasn’t well lubricated, so later I looked around myself to find new ones to try. At first I would only do it at home in our own bathroom and even then I used to panic, and cry every time and have meltdowns. I even found it difficult to know when to do it, because my body doesn’t tell me until the pain comes; I wasn’t sure how long to keep the catheter in or how to know when my bladder had properly emptied. 

It was a really hard time. I didn’t only want medical help, I wanted someone to say to 16-year-old me how horrible it was, how much of a big deal it was! 

Of course you do get better at it

My technique improved eventually. I got to know which catheter was best for which situation, how much lubrication to use, and which lube was best. I also got better at knowing how much fluid I could drink before needing to catheterise (and before the pain started).

Plus there are so many “firsts” to deal with. The first time you go on a long car journey – how can you figure out when you’ll need to stop, and know that you’ll be near a large clean bathroom? The first time on a long flight – I was so anxious and had to have my leg up the wall in that tiny toilet on the plane, in order to do ISC!

No one knew what I was going through

How could they? I had amazing family support, but they didn’t really know. And I was in that awkward place between childhood and adulthood, very self-conscious and embarrassed about things. By sixth form I was wanting to go out with my friends, but at the time my catheters couldn’t fit in my clutch bag. I’d have to take a bigger bag to accommodate my catheters, gel, mirror and so on, but then I was so anxious that something would fall out of my bag.

My mum and my aunt are both healthcare professionals, so I’ve had fantastic medical support at home as well as at hospital. Also my first long-term boyfriend was great, and really made me feel comfortable if I’d had a leak or made a mess in the bathroom. 

But despite the wonderful support I had from people who loved me, I always wished there was someone for me to talk to, a bit older maybe, who’d been through what I was going through and come out the other side. Now I’m 28 and I am that person, and really hope to do that for someone else; that’s why I started my blog and Instagram platform, B is for Bladder. We’re trying to push hard to get people talking about it.

B is for Bladder

It’s gotten very busy and as I’m working full-time, getting back to people has been really hard – and that’s been difficult because I know what it feels like when you have questions and can’t get answers quickly. Luckily my brilliant friend Corin, who also has a catheter and used to do ISC, is helping me with my overflowing inbox now. It’s lovely to show lots of options to people, mostly young women, and the engagement has been great. Instagram works so well, allowing people to interact, and allowing me to share a personal perspective and answer questions that a nurse or specialist may not be able to respond to. Looking at stories and reels and using TikTok, it’s all so much fresher and easier to engage with than a Facebook group that you have to ask to join!

I get ALL kinds of questions from young women

I’m going on my first holiday, what do I need to take? How do you do ISC on the plane? Will security stop me taking my cleaning solutions in my hand luggage? Do I need to take a doctor’s letter? What’s the best kind of swimsuit for getting to the toilet quickly? Do I need to do something different to prevent infections after being in a pool or on a sandy beach? Can I have sex?! How do you talk about ISC or putting a bag on when you go to bed with a new boyfriend?

How to broach the subject in a new relationship

This comes up a lot, and it definitely sorts the ones you want from the ones you don’t! But it’s not the kind of thing you mention on a first date; when you’re comfortable with where you’re at, it just won’t be a big deal. I wouldn’t say, “Can we talk?” or “I need to tell you something”...personally I keep it casual, maybe mentioning a hospital appointment and making it part of a conversation. I’d say something like “It’s important you know about them, because without these catheters, I wouldn’t be here. I need them for life – they’re my lifelines.”

I have so many questions myself, and not just about bladders

You have to be a step ahead and think about things up front, as your life changes and things come up that weren’t an issue when you were diagnosed. For example, I’d like to talk to someone about my fertility and how my condition could affect it. I know that the bladder and the uterus are very close. If I had a full stoma in the future, would they need to take out my uterus? Could I carry a baby full term? How do you ISC if you’re pregnant? These are all questions that I currently think about.

Let’s share what we know

My team at the Queen Elizabeth Hospital in Birmingham is brilliant. We talk about issues that come up and try new things – but we really want to join up with other urology teams across the country to share what we know. I’m talking to the team about setting up a forum, and also about offering study days from a patient perspective so the specialists get a sense of what it’s like for us. There tend to be lots of male consultants in urology and as a young woman, it takes a while to get used to people examining you intimately and asking personal questions.

As I’ve learned through B is for Bladder, there’s nothing as powerful as peer-to-peer support. When I was learning to ISC, I could have used some help from someone who actually did it too, even if they were doing it on the other side of a curtain, just talking me through and encouraging me. For girls, finding your urethra is so difficult as it’s so hidden away but it’s not only a physical issue – it’s so close to your vagina, which feels such a sacred part of your body.

I’d also love to do open mornings or support groups for young patients with Fowler’s Syndrome, or bladder cancer, or any kind of dysfunction. There’s a big gap in the transition from paediatrics to adult care and it needs to be filled. I’d love to get a mental health specialist and a sex therapist involved in patient care, have a talk on body image, and discuss openly how to tell new friends or partners about your condition and what it means, in a practical sense. 

I’m now in a pretty good place

It’s not been easy but it’s got better. Ideally I’d still be using ISC but my condition has changed as I’ve grown older, so now I have a suprapubic catheter. Conditions can change – you assume you’ll stay the same after your diagnosis but you don’t, of course, so you’re always having to adapt and adjust. I’m quite into the spoon theory; that we all start each morning with a number of spoons that represent energy, and use them up with each thing we do as the day goes on. An able-bodied person might have 10 spoons; someone with a chronic illness like me would only start with 6 or 7, so midway through the day I’ve run out – of virtual spoons, and of mental and physical energy. It’s hard to fit in what I call the bladmin (bladder admin!).

Sometimes I’m not OK, and that’s OK

You can’t pour from an empty cup, so you have to be nice to yourself. It’s a good mantra, but I haven’t always followed it, and then I’ve struggled. Anyone with a chronic condition knows how it takes away control, which is a horrible feeling; in the past I’ve tried to compensate by trying to control smaller things, and then got frustrated and made myself feel guilty if I haven’t done what I wanted, or have let someone down. Now I don’t pretend to be fine all the time. My message is: give yourself a break.

A mental fight, not just a physical one

When you’re low, mentally, that makes everything physically so much worse, and I think if I’d had counselling from the start it would have saved me a lot of trouble. In my late teens I was able to have some talking therapy, and I really needed it, even if just to say aloud: this is rubbish! Family are so closely involved that I believe you need to go further out on your own web to get all the help you need. CBT (cognitive behavioural therapy) helped me learn not to catastrophize things, not to look too far ahead, how to deal with panic attacks, breathing techniques. I do still see a therapist occasionally, and though it’s expensive, I like having tapping techniques, deep breathing exercises, and positive mantras in my toolbox – I come away feeling great. The Calm app, which is a meditation app, is also great to help you unwind at night.

Be open to other treatments that might relax or calm you

Alongside physical exercise and mental health work, I’ve tried lots of other treatments...when you’re taking that many tablets each day, why not give anything a go?! When I was in a London hospital having a Mitrofanoff bladder augmentation procedure, I wasn’t at all well, and hated the medication I had to take. A volunteer team came in each day to offer reiki, reflexology, and mindfulness for long-term patients and it was brilliant. Whatever your preconceptions, I certainly felt a lot better for it.

World Continence Week

We’ve timed different campaigns through B is for Bladder to slot in with World Continence Week over the last couple of years, with Friday Instagram “lives” and Topic Tuesdays, where we talk about travel, work, relationships, anything really! I’m sure other bloggers on chronic health would tap in to World Continence Week too, if they knew more about it – fibromyalgia, polycystic ovary syndrome (PCOS), and endometriosis are often connected with bladder conditions and we need to get them onside.

I’m also working on a project with Hollister to get people to talk positively and openly about their experience with bladder issues…whilst also sharing the negatives. I am also writing The A-Z of ISC which will touch on how-to’s, new products, mental health, and advocating for yourself. Hollister is great at giving patients a wide range of options, information, and samples to try and there’s always a nurse specialist available to talk through anything on the medical side. 

Why is it such a taboo?

It’s strange, people seem to speak more easily about poo than pee! And even with bladder awareness, and adverts on TV for products, they’re often directed at older women and they only ever mention stress incontinence – retention is rarely spoken about.

I want it to be normal

Some of my work colleagues at school had no idea at all – which is good in a way – and when they find out they’re amazed! The children I teach were sweetly curious about why I used to go into the bathroom with a bag, so I arranged an assembly about it, and now they know everything and it doesn’t seem like a big deal to them. One child has had a bladder issue from birth and we chat about it easily, and I can offer advice to her parents.

B is for Bladder, and A is for Advocating

In today’s medical system, as brilliant as the UK NHS (National Health System) is, you have to be prepared to advocate for yourself. We all know that GP appointments are only 10 minutes long, that it’s easy to slip through the cracks and to be hurried along, accepting the first option you’re offered. 

I’d recommend getting to know your own body, your own disorder, and being an informed patient – be an expert on yourself. And do take someone else with you to appointments if possible – they may hear something that you’ve missed.

Equip yourself with everything you need – and stand up for your rights

You really need to be confident and ask for the things you need. It took me 10 years of appeals before I got a radar key (for access to disabled toilets) but with an invisible disability, people don’t always realize why you need it. In the past, I’ve even gone as far as getting my catheters out to show someone that I needed access to the disabled toilet! The best facilities have a drop-down table for baby changing. It’s the ideal place for me to put my bag, which is designed to fall open and is already sterilized and clean – I just need a bit of space. I also always carry a pillow or a fold-out plastic mat in the car, in case I can’t get the right angle on the loo, and have to sit on the floor.

Follow your dreams – remember to think “I can, not I can’t”

I loved travelling in Asia when I was 21. Again, I’d been told “you can’t” which made me want to do the opposite and prove everyone wrong. I had come to grips with ISC and felt confident enough to go despite what the doctors advised. I lived in Cambodia for six months but it was in Vietnam when I got a quite serious kidney infection. I ended up in hospital but managed to get my British medical team to share my history over email, and the two specialists on either side of the world collaborated to get me well again. I did have to push hard but it was worth it, enabling me to live my dream of travelling.

Your health issues are part of who you are

On my travels I remember being on the beach, and chatting to a lovely girl about our lives. I told her about my syndrome and she asked me bluntly, so how do you pee? I told her all about it and she asked lots of questions, but then said “If all of us put all our problems out on the table, we’d probably pick our own ones back up again. Maybe we have these problems because we alone can deal with them.” I try to live by that rule, and think about what I can do, not what I can’t. It used to drive me mad when my Nan said, “there’s someone worse off than you”... but she was right. 

*****

Aoife’s medical timeline

Aoife’s bladder retention dysfunction started at 15, and she was diagnosed later with Fowler’s Syndrome, a rare disorder found in young women, in which the urethral sphincter fails to relax to allow urine to be passed normally. 

She’s had 108 general anaesthetics (and counting) in 14 years for multiple procedures including a Mitrofanoff augmentation, sacral nerve stimulators, urethral stenosis, and operations on her bladder wall. Constant catheter changes and surgeries have caused stress, especially on her left kidney, and bladder spasms have also led to kidney and bladder stones. Some of the bladder stones transferred into her uterus, which also needed operating on. As her veins are weakened, Aoife sometimes needs a general anaesthetic so that PICCs and ports can be inserted in theatre.

As she says, the only way she gets through is to share her story, and hear other people’s. 

Aoife’s inspirations

Her biggest inspiration is her magnificent mum! Aoife’s dad left the family when she was a teenager so her mum has had plenty to deal with, along with her busy job and some health problems of her own. Aoife also admires presenter and activist Katie Piper and finds her a huge inspiration, especially as she’s had multiple unseen health setbacks along with the problems we can see.

Aoife’s mantra

It might feel disabling, but make it enabling!

Aoife recommends...

@bisforbladder of course, on Instagram! For mental health, Aoife likes apps like Calm and I Am, which send regular affirmations. In her local area, @BirminghamMind has a helpline chat service called Talk Time – it’s worth looking for organizations like them near where you live.

Hollister serves people living with bladder dysfunction and those who care for them. We are committed to helping empower those who use our products with the independence to maintain a rewarding, dignified life. View our comprehensive portfolio of continence care products, and access helpful educational resources here.

The testimonials, statements, and opinions presented are applicable to the person depicted. These testimonials are representative of that person’s experiences, but the exact results and experience will be unique and individual to each person. The person interviewed received compensation from Hollister Incorporated for this interview.