I saw my Urologist (Dr E) yesterday so thought I would give you an update on where I am with my Interstitial Cystitis journey.
It’s been a rough few months. I still haven’t recovered from my cystoscopy with hydrodistention and my symptoms are much worse than before the procedure. Whatever my Urologist did that day, my poor bladder still hasn’t forgiven me and I’m not sure she ever will.
I finished my course of six bladder instillations a couple of week ago. I tolerated them really well and the more I had, the less painful they were. I didn’t feel any improvement until number four and after number six, there was definitely a decrease in my pain. My pain is still very up and down but I do get times when I have no pain at all and feel almost “normal”.
I am trying to experiment with the IC diet. I’ve followed it fairly rigidly for three and a half months and feel it’s time to be brave about trying other foods. The diet has become so boring and monotonous, it’s driving me crazy!
The first thing I tried was white chocolate…obviously. It’s supposed to be more bladder friendly than milk or dark chocolate. I bought a high quality bar (Sainsbury’s, Taste the Difference as opposed to my usual choice of Milkybar. Unsurprisingly, Milkybar has more added crap). After tasting the first square, I fell into what can only be described as chocolate ecstasy. I had zero self-control and consumed the whole bar in 0.05 seconds. Perhaps it was the sugar rush, the caffeine or my body not knowing what the fuck just happened but I had an almighty headache almost straight away. I went to bed to sleep it off, woke up the next day and my bladder was…the same. No extra pain. No elephant doing a dance on my nether regions and it continued like that. After weeks of avoiding the chocolate aisle for fear of throwing a toddler tantrum at not getting what I wanted, a miracle has happened! I’m going to try to resist turning into the chocolate monster I once was but it’ll be a struggle!
I also tasted the sugar high of alcohol. I know, I know, just thinking about the acid in a glass has me wincing in pain but hear me out. My usual tipple is vodka and Diet Coke but I wanted to stay away from caffeine so I chose vodka, soda and blackcurrant. It’s not a taste sensation but it did the job. I washed this down with plenty of water to try to dilute my urine. The pain kicked in almost straight away. I managed four or five drinks and the slight drunkenness helped numbed the pain. The next couple of days were painful but not as bad as I had expected. I could hear my bladder shouting “Fuck you” several times a day and I can’t blame her. It’s a pretty cruel thing to do and I’ve apologised unreservedly. I will definitely save drinking alcohol only for special occasions as it’s just not worth going through that on a regular basis. I would rather be the sober one than the one with a potty mouthed, screaming bladder.
I’m writing this with one eye open and feeling like I haven’t slept in a few days so please excuse any spelling or grammatical errors. Dr E prescribed an antihistamine called Hydroxyzine and I took my first one just before bed last night. I had a great sleep but trying to get up this morning was like trying to drag a suitcase through thick sand. I still feel really drowsy and out of it. I am hoping after a few days, the tiredness will go as my body becomes accustomed to the new blue pill. I am going to delay taking anymore until after my exam next week as I just can’t afford to sit here in a daze when I have so much revision to do.
Dr E wants me to continue with bladder instillations once a month. I doubt my private health insurance will pay for more so there’s likely to be a long delay as I wait to be referred on the NHS. We discussed other medication (Amitriptyline) but both decided to hold off for now because of possible side effects. He wants to discuss me at a complex case meeting next month to see what other Urologists suggest. My symptoms aren’t always typical of IC but he is pretty confident that’s what I have. Isn’t it great being diagnosed with a condition that no one can be 100% sure you actually have! I am being seen by a Gynaecologist next month to rule anything out there. My periods have become very painful and I get pelvic pain not from my bladder so there could be something else at play.
Dr E said IC is really hard to treat but to stay positive that things can get better. I’m all about positivity, it’s the only thing that will get me through this nightmare!