I have been doing semi-regular health updates on Twitter but with the constraints of the character limit, I thought it prudent to do a proper LJ update about it as well...
I'll take this from the start of the year because I can't quite remember if I've updated along the way...
I think I updated about my final appointment with Urology during my "Year in Review" post, where basically he had to hold his hands up to the fact that he didn't know what was wrong with me and discharged me back to my GP. I asked him to state in the discharge letter that I suspected it was either gall bladder or stress-related, and thankfully he was amenable to doing that.
The discharge letter turned up at some point in January. Thanks to work commitments, I wasn't able to contact the GP until early February - a half-day spent in a heightened state of anxiety due to panicking that they wouldn't listen to my concerns. Thankfully, the GP did listen, and agreed to refer me for a scan of my gall bladder, liver and spleen. He also agreed to see me (my GP mostly does phone appointments unless they need to examine you) and concurred that the pain in my side was in the right area to be potentially gall bladder related.
Booking the ultrasound appointment was a bit of a mission, as I couldn't book it online and had to call up a company called "Health Harmonie" who were handling the service "on behalf of" the GP (hmmmm). The first time I tried to call they somehow managed to mute my call after taking me off hold (so they couldn't hear me), and then when I did finally manage to get through they needed another two days to pull through my notes to decide whether the scan had to be done at hospital or whether it could be done at the local surgery.
It turned out to be the latter, thankfully - not my actual surgery but one just up the road. Predictably, they found nothing wrong with my gall bladder, which was infinitely frustrating considering it really hurt when she was pushing the scanner thing into my side...
I contacted the GP again in mid-March, just before going on a family weekend away to Buxton, and asked for a gall bladder function test. The GP was reluctant to refer me for that as the scan was inconclusive, but asked me to do more blood tests to rule out yet more issues, including my thyroid. He also prescribed me with an anti-bacterial steroid cream for some eczema on my collarbones which had suddenly appeared and rapidly spread over the course of the previous fortnight.
Following the holiday to Buxton - which was knackering but good fun (so. many. hills) - I attempted to call up to get the blood test results. This took far longer than it should have done because the surgery was having major issues with its phones. In fact, when you call up, you are not calling the actual surgery but a switchboard for "Your Health Partnership", who run several local surgeries under the same umbrella. It was taking in excess of 100 calls to even get through to the phone queue, which only seemed to allow five people to wait at any one time, so the rest of time it was basically constantly engaged. When I was trying to fit this in around my meeting commitments, it was understandably frustrating.
It was also not helped by the fact that the one time I did manage to get through, I was informed there were no GP's in.
Eventually, after another failed morning attempting to get through, I decided to sign up for online services instead, as the surgery release a limited amount of appointments the night before for online booking. As a result of that I finally managed to book in a call back (not even a physical appointment!) with one of the practice partners.
He informed me the blood tests returned normally (OBVIOUSLY) but agreed to see me that evening to have a chat about where to go next.
The appointment turned out to be a lot more productive than I was expecting. He examined me and said he could "feel something" in the affected area - which was particularly sore that day so at least it wasn't elusive at the appointment for once - and also took a water sample because I thought I had another UTI. That was also inconclusive so he wasn't comfortable prescribing me antibiotics for it (I managed to get a handle on it by taking cranberry tablets and avoiding coffee for the weekend).
The GP asked me what scans I’d had, so I reeled off the whole list. He was also completely stumped as to what was actually wrong with me, BUT he agreed to sort my pain out for me and referred me for a steroid injection. His exact words to me as I left the appointment were a demand to "stop being mysterious!".
I had the steroid injection about two weeks later and the guy giving the injection also said he could "feel something" when examining me to figure out where to place the needle. (Which is all very well but it never shows up on scans!) He told me that the steroids would take around two weeks to properly kick in. According to the GP referral he had cited "chronic inflammation" as the cause.
I googled this later and discovered that there is a whole gamut of side effects, including fatigue, skin problems such as eczema, cold/flu like symptoms (so, sinusitis?) and increased neurological issues such as depression/anxiety.
Within less than a week of the injection, the skin on my face had started to clear up, after a year of unsuccessful treatment with Zeroderm (moisturiser) and hydrocortisone and almost three years since it first emerged. The improvement is mostly around my eyes and my forehead - there's still some dry skin on my chin and the rash on my collarbones has randomly flared up lately, but TBH it spread so suddenly I'd be surprised if it cleared up that quickly - and the constantly changing weather lately has not helped.
Within two weeks I noticed my wee had stopped smelling quite as awful as before - and today I realised I don't need to go quite as often as usual. I also - touch wood - feel marginally saner (less angry / less anxious). I'm not saying all of my recent mental health problems have been as a result of my body being obnoxious, given everything that happened in 2016 (my folks moving abroad, Brexit, Trump, and the house move), and of course there's always the possibility that finally being listened to has caused a massive reduction in my overall stress levels... but given that it felt like everything was spiralling and deteriorating until very recently, it can't be a coincidence that it now feels like there's... sudden calm in my brain.
It also helps that work has not been quite so insanely stressful as late, though I'm giving the shiny new Trust (which we have been part of since April) a year to find its feet and make improvements before deciding whether I still want/need to find another job. In any case, I'd already decided to try and sort out my health issues before looking elsewhere.
Oh, and I should probably say: the pain seems to have subsided, though TBF I haven't poked it to find out. It was very sore immediately after the injection (unsurprisingly) and has flared up a couple of times (specifically alongside a bad migraine) but it doesn't seem to be constantly in the background any more. Paul and I went bowling on the bank holiday weekend, and a month ago I wouldn't have been able to do that without being in pain or causing a flare-up.
I am also still tired a lot of the time, but have marginally more energy than usual. I suspect it's going to take a while for my body to recover from all the various side effects, though, so that's not going to be an overnight fix. And I was always tired before all this started anyway. :P
So, it seems that the GP inadvertently stumbled on a solution with his theory of chronic inflammation. Whilst I am infinitely grateful for that, I can't help but wonder how much quicker we could have reached this point if people had only listened to me about my chronic pain and attempted to sort it out with something other than increasingly-ineffective painkillers.
I'm hoping to get back to the gym soon - this month, if I can - with the aim of improving my overall fitness and energy levels in the hope of mitigating against things deteriorating again. The steroids should last for an indeterminate amount of time in stopping the pain, but I'm more of the view now that they might kick-start my immune system into working properly again and that should improve everything.
I've got a theory
I'm crossing everything that this really is the "miracle cure" I needed and I can finally kickstart my life again after four years of it being on hiatus. In which case, I will write a compliment to the GP to thank him for finally listening to me and attempting to sort things out - after submitting the lengthy complaint about my consultant, it seems only right that I should give credit where it's due as well. (I also kind of feel like writing to my ex-consultant as well to tell him what was going on, in case he has someone else like me in the future. :P)
I'm cautiously optimistic, but still lowkey angry that it took so long to get here. My experience has been a perfect example of how women's pain is never taken seriously (or is outright ignored), and I think if not for my complaint we wouldn't even have got here. I was under Urology for another 12 months after the complaint and re-referral, undertaking the same investigations and procedures as it took 2.5 years to get through last time (thus highlighting the unfortunate difference between private and NHS treatment, sadly) and reaching the same non-conclusion, until my consultant finally gave up and conceded defeat. Even that took an extra three months because of his professional pride. But, y'know, if he'd actually taken my concerns on board in the first place, and thought outside the box for even five minutes, we could have gotten here so much sooner.
Anyway. I will doubtless continue to update my health thread on Twitter with improvements as and when they happen.
TL;DR - I think we've found the answer. FINALLY.
That's it for now. Hopefully my next post will be another fandom flail. :)
I should also say, I've been tentatively poking at a couple of my Plotbunnies, but don't expect them to see the light of day any time soon. :P