If you have read my first blog post (‘My Journey so Far’: here) you will have seen me mention that I have a condition called Fowler’s Syndrome. This is something I harp on about quite a lot nowadays because firstly, as my confidence has grown, so has my desire to try and help others feel less alone and secondly, awareness is so important in creating changes down the line. So, what exactly is Fowler’s and why does it cause me to spend a large proportion of time wanting to claw out my own bladder?

Fowler’s Syndrome was first described by Professor Claire Fowler in 1985. It is a cause of urinary retention (being unable to pee) in, primarily young, women* due to your urethral sphincter muscle not relaxing – this muscle is the one that keeps us continent. A key feature is that there is no underlying neurological cause. 

It is something that is most commonly seen in women in their 20’s and 30’s and they tend to present at hospital having been unable to pass urine for several hours (or in my case, several days – whoops). When a bladder scan is performed there is a high amount of urine in the bladder, and this is often causing significant pain. For some people, it is a condition that develops after something like childbirth or surgery (it is thought to sometimes be caused by the anaesthesia) and for others, it is something that spontaneously develops. In some cases, retention can be caused by bladder or kidney infections as well. 

When we are catheterised, and our bladders are emptied the amount of relief we feel is incredible – imagine you’re in the car and begin to need the toilet yet you’re still a fair way from home and there’s nowhere to stop on your way. Then you hit traffic and get stuck for a couple of hours – when you get back home, that wee is the most incredible thing in the world, right?! (Or maybe I’m just making things up – it’s been a long time since I wee’d normally, so I genuinely have forgotten what it is like). 

Like many conditions, Fowler’s is on a spectrum. Some people can still pass some urine naturally and this is something that can hinder diagnosis as, often, these women are not aware that they are not fully emptying their bladder. For these people, they may present with repeated urine infections as there is residual urine left in the bladder for long periods of time. Then, when it is investigated fully, the inability to fully empty the bladder may be discovered. For other people, like myself, we are completely unable to empty our bladder without a catheter – whether that’s a permanent catheter or intermittent catheterisation, or indeed through urinary diversion surgery.

Initially many people have urethral catheters in situ, but this is not often a long-term solution. Often, we are taught to self-catheterise which involves inserting a small catheter into the bladder periodically and then removing it straight away. This can be a much more discreet way of managing our bladders and can leave people feeling more in control of things. Sometimes surgical catheters are used – I have a suprapubic catheter which goes through my abdomen into my bladder, and I then drain from here. It’s an absolute pain and faff at times however, I do feel like peeing from my stomach is quite the party trick! 

For some people, when other more conservative options have failed or are not feasible, the only options left are urinary diversion surgeries. This is either in the form of a Mitrofanoff or Ileal Conduit surgery – my following descriptions are going to be incredibly brief as there’s so much you can say about both these options but there is a lot of information on the BAUS website about both! A Mitrofanoff involves connecting either the appendix or part of the intestine to the bladder and then forming a channel to your abdomen. This channel is then used to catheterise through – it’s almost a mix of self-catheterising and a suprapubic catheter as the catheters are passed through the abdominal stoma. A urostomy (or ileal conduit) involves removing the bladder and forming a stoma that drains urine directly from the kidneys into a bag that is worn on the abdomen. Both of these options are huge undertakings and are very much a last resort in terms of treatment.

There is no cure for Fowler’s – something that I desperately hope will one day change. However, there is one treatment that can sometimes give sufferers more of a natural experience with peeing. This is called Sacral Nerve Stimulation – a kind of pacemaker but for your bladder (this was how my urologist explained it to me and, because the entire concept absolutely blows my mind, I think it’s one of the best ways to sum up what SNS is). A wire is placed to the nerves in the back that control your bladder and then an external control is used to set the amount of stimulation that the nerves are receiving. It helps the bladder communicate with the brain and can, for some women, restore normal bladder function. However, it’s not often hugely successful and is and expensive treatment so isn’t frequently offered.

And that’s pretty much it. She says like it’s just a little thing. Fowler’s is a hugely complicated disorder that impacts people in such a huge variety of ways. I could say SO much more about it and the things I have experienced, but I’ll leave it here for now. As always, if you have any questions feel free to ask away and I’ll do my best to answer them.

All my love,

Anna x

*I want to apologise for my repeated use of the word women throughout this – it’s become second nature to refer to people with Fowler’s as women because that is what a large amount of the literature available refers to. However, I want to say that it is not just women – trans men and non-binary people can, of course, experience the symptoms of Fowler’s and this is something that I need to try and make a more conscious effort to remember when I am speaking about the condition.