Aquagenic Urticaria: A rare and incurable condition in which urticaria (hives) develops after the skin comes in contact with water, regardless of the temperature. In a nutshell – an allergy to water – and my new diagnosis.
Is it an actual thing? Apparently so!
Is it something I’ve had all of my life? Nope!
Is it something that would ‘normally’ appear in your late 40’s? Nope!
This newly acquired “water allergy” only started about 2’ish years ago (give or take) and has literally appeared from absolutely no-where!
Nothing out of the ordinary was going on in my life at the time, well apart from the ‘normal’ day-to-day bullshit that everybody deals with, but as I was drying myself off after having a shower, I casually looked over to the mirror and near on had a frign heart attack!
Half of my face was covered in these weird looking red splotches (WTF) and as I was checking over the rest of my body, I realised they were everywhere. W.T.A.F!!! I raced downstairs to show the hubby, who was just as shocked as I was, and he took charge of taking photos of them whilst I remained in charge of having a complete meltdown!
Within an hour though – pooof! Just like magic! They’d all vanished!?!
Every splotch that had been on my body had now completely disappeared without a trace!
What the actual hell!?!
Obviously both of us were still in a ‘WTF just happened moment’, but we ended up just putting it down to a random one-off reaction to my soap or shampoo – even though I’d been using the exact same products for years. Go figure!?!
The next time I showered it happened again so we decided to do a process of elimination to try and work out what was causing it? So far we had noticed that the splotches were never in the same place, were always different sizes, all seemed to be of a round’ish shape, always disappeared within an hour, and there was never any itching or irritation.
I ended up trying different water temps, different time frames of being in water, just using soap, just using shampoo, just using conditioner, and even using no products at all – but we still couldn’t pinpoint what was causing it? We couldn’t even find a rash on Dr Google that looked anything like what I was getting so it was time to go and see the GP.
We had taken plenty of photos of the splotches each time, but when we went to see him about it, he really wasn’t that interested. I suggested maybe seeing a Dermatologist as it was pretty bizarre how it had all of a sudden started happening, but his attitude stayed the same and he wanted to wait and see what happens.
Fair enough …
So anyways, this carried on for another 12 months so I’ll cut a very long story short, but basically he still wasn’t interested in exploring what it might be – even though I kept showing him up-to-date photos. We had no idea, or could even understand why he kept dismissing it (?) as it was obvious that something was going on with my skin.
Now before I keep waffling on about it, ya better strap yourselves in as there’s a twist to this story that I didn’t even know about myself until I’d had this ‘skin thing’ for about 14 months.
I’d gone to the emergency department (for an unrelated issue) and was asked if there was anything else going on that they should know about? I mentioned the splotches, and we went though the photos on my phone, and that’s when it got – shall we say – a ‘little’ interesting!
Two doctors came in to have a looksy-loo and with each and every splotch location in the photos, they checked that specific area of my body to do a comparison. They were fascinated with what they were seeing and that’s when I found out that each and every splotch had also been leaving a weird looking skin ‘lesion’ thingy-me-jig after they’d disappeared.
Obviously this was news to me as I’d never bothered to check my skin after the splotches had gone – why would I – so had no idea it had been happening. Their theory was some kind of discoid rash, but it was just a guess with never seeing anything like it before. They asked why it hadn’t been checked ? so after explaining my GP’s attitude to it – they were ‘NOT.HAPPY.JAN!’
They said I needed to see an Immunologist or Dermatologist ASAP so I took the info straight to my GP who assured me he would sort something out. A couple of days later he called and told me to have the photos ready as a Dermatologist was eager to see the rash, and that it was going to be a fast-tracked appointment.
YAAY! I was finally going to get an explanation of what the hell was going on with my skin! All I had to do now was wait for ‘whoever’ to contact me with the where and when?
So I waited and waited, and waited some more, but no-one contacted me – either by phone, mail or email. FFS! Everyone was telling me to ask the GP what the fk was going on, but I refused to chase it up as I was over the ‘medical experts’ at this stage.
Anyhoo, about 9 months later, yep you read that right, NINE.FRIGN.MONTHS, I still hadn’t heard from this so-called Dermatologist!?! I’d seen the GP a few times about other things in that 9’ish months, but he never once brought up the skin/dermatology thing with me.
FYI: this is where the timeline is starting to match up with the Relief vs Anger blog post (chapter 3) where I finally decide to get a new GP > https://madnessinthemethod.com/2019/06/15/ehlers-danlos-relief-vs-anger-part-3/
So with the NEW doctor now working through the list of thing’s to be done (that should of already been done) a referral was sent so we could finally get some answers of why this strange and mysterious splotch skin thing was happening?
7 weeks later I saw the Dermatologist who looked over every single ‘splotch’ photo on my iPad with an eagle eye! Oh and let me tell ya – there were a bloody shitload of them!!! I’d also added some photos of the ‘lesions’ (now I knew about them) with a timeline of how long it took for them to completely disappear – which was approx 2-3 weeks.
The Dermatologist was a man of very few words and rated a 10/10 for no people skills and arrogance, but did I care? Nope! He was known in the field as the best of the best and let’s face it, I wasn’t there to make a friend. Whilst he was busy zooming in on the photos he was asking me a heap of pretty abrupt questions, then diagnosed me with Aquagenic Urticaria.
According to him it had nothing to do with the Ehlers and he couldn’t give me any answers of how or why it had all of a sudden started? He quickly explained that it was very uncommon and antihistamines, and/or light therapy, were the only treatments for this incurable condition.
The ’45 min’ appointment wrapped up pretty damn quickly after that so for the $240 I paid him for the measly 10 minutes – well he could of given me some free samples or something, lol. Luckily I don’t need to be seeing him on a regular basis!
So there you have it! Another rare medical condition to add to the others! Yaay – NOT!
Does it come as a surprise to me, or anybody who knows me? NOPE!!!
Believe it or not, having rare and mysterious conditions is totally ‘NORMAL’ for me, and I confidently say, without a shadow of doubt in my mind – when it comes to my gene pool/DNA – there’s a whole lot of defects AND major fuck-ups! 😂
Does it bother me that I have Aquagenic Urticaria? No, not really, but it would be nice to know why it all of a sudden started so late in my life? Obviously I’ll discuss it with the EDS guru at my next appointment, but I think it will always remain an unanswered question as it seems this condition is still quite unknown, even to the experts.
If it’s not one thing, it’s another with me – AND – when it rains, it fucking pours 😉
Hugs / Peace Out! Essie ❣