“It’s like having the worst urine infection, but all the time. I can’t work, I can’t sleep, my relationship is suffering because its too painful to have sex so I don’t want him near me, and I feel ratty all the time. I’m not being a good mum, I shout at the kids. I’ve had enough.”
I first came across Bladder Pain Syndrome (previously known as Interstitial Cystitis) 10 years ago when one woman’s story really hit home. A young mum who’d had to stop working as her trips to the toilet every 15 minutes were annoying her boss, and her colleagues made jokes about her bladder. It was initially something she handled well, but as she tried to hold off from going to the toilet her symptoms worsened and she retreated inside herself. Medications didn’t help the pain and quickly her world became smaller and smaller.
Her bladder was ruling her life and she was miserable. She was at the end of her tether and I was her last hope.
I was hooked by the process of puzzling over the complex nature of her symptoms and started to tease out improvements. Ever since then I’ve been refining my treatment, learning more about the condition and reflecting on what more I can do as a Physio to help. This has led me into my own clinical research and to developing connections with therapists and researchers from all over the world.
Bladder Pain Syndrome is a painfully debilitating and thoroughly embarrassing condition where people experience pain when their bladder fills, they feel like they constantly need to go, have to rush to the toilet frequently and may not make it on time – wetting themselves at work, in the street, in the car. Their bladder pain is eased only temporarily when they empty their bladder. Often this means that sufferers spend their lives on the toilet, looking for the toilet or in constant discomfort or pain.
During my career I’ve been drawn toward the treatment of pelvic pain – releasing pain and coaching someone back to the life they’ve wanted is just the best job in the world. When I completed my Masters I decided to focus on bladder pain syndrome. Through my work it’s a condition I’ve been so profoundly inspired to understand more deeply and I really wanted to do my bit to add to the medical knowledge. It’s an exciting time for the field with so many researchers trying to figure out the mechanisms which bring about bladder dysfunctions and pain. A large part of that is multidisciplinary working – doctors, physios and nurses working together with and alongside a patient to find what’s right for them. We’re getting into the age of individual and holistic treatment (in the true sense of the word not the industry it’s been attributed to), and that’s exciting.
We know that physio helps Bladder Pain Syndrome. I know first-hand how much of a difference it can make to lives – the doctor able to drink wine for the first time in years, a lady who managed to get pregnant after years of no intercourse due to the pain, the hundreds of men and women I’ve seen who are back in control of their bladder and able to work, socialise, exercise, wear normal clothes… not just black trousers!
For my masters research I looked at whether using a therapeutic wand in women with Bladder Pain Syndrome could potentially help manage symptoms. You can read the paper here. This is a curved plastic stick used inside the vagina to relax the pelvic floor muscles – there’s a few out there and for my trial I used the TheraWand Essential. This is something we regularly prescribe for both men and women to use to help them to manage their symptoms, but there isn’t that much evidence supporting its use – not that it doesn’t work, just we don’t have a large body of evidence in this area to draw upon. Yet. My experience tells me this can really help to reduce the urge to go to the toilet and with pain, so this warranted rigorous scientific investigation.
In reality most women are using their thumbs to achieve some internal pelvic floor massage and relaxation, but if you have trouble accessing the area or are male, you may prefer using a wand as an extension of your finger. It's always best to get a proper medical assessment and see a qualified specialist pelvic health physio to guide you in how to use a wand or your thumbs, and if that's needed. This is a simple thing you can do at home to relieve your symptoms, but it takes some skill to get going. If you're looking for a physio in the UK you can find a physio here and globally you can find links to your national physio services here.