Posted , 12 users are following.
I posted on here a few months a go about some symptoms I had been having and I am so sad to say that things have gotten worse all of a sudden. I have seen one private urologist in october (I went private first as I could not stand to wait any longer) who agreed that he thinks i have interstitial cystitis but says a cystoscopy would be needed to confirm. (I still haven't had one due to severe anxiety of it making my symptoms worse). the last urologist I saw on the NHS in November and January was just awful. he was so rude and dismissed my symptoms completely. he said that ic is very difficult to diagnose and they may never know the reasons for my pain and unless I have a cystoscopy they will not be able to help. I currently take 20mg amitriptyline and quercetin supplements as prescribed by the private urologist. I had been previously been experiencing pelvic pain around my bladder (not actually directly on it) as if someone was pressing hard on a bruise whenever I drank anything. it was like I could feel my bladder filling up. I also had some occasional urethra twitching and peed around 8 or 9 times per day. amitriptyline seemed to help the aching to some extent and I was managing my symptoms. the past few weeks have been hell. mid march I noticed urgency I had never felt before in my bladder. I also felt a constant pressure as if I needed to go still after voiding but I knew I didnt which led to more frequency. this flare up would last for 5 days, disappeared for a week and then came back again twice. I'm in the middle of my third flare up in 4 weeks and struggling to cope.
I have been keeping a food diary and I cant seem to make any links. I was fine over Christmas and during that time I was eating all foods that I shouldn't (chocolate, pizza etc) and drinking fizzy drinks etc. I have been having physiotherapy biofeedback to help with my pelvic pain. I've now finished my sessions and clearly they dont seem to have worked. I have been told I have tight pelvic floor muscles and I will admit I do get stressed. I hate feeling like I constantly need a wee. the most times I've been has been 12 times in a day but I could go more than that as I try to hold on..I'm currently not eating as I'm too terrified to eat as I'm worried food might be causing my flares. last week I limited my sugar intake and ate no chocolate and just the odd bowl of vanilla ice cream for a treat. also cut out decaf tea. I'm only drinking water and chamomile tea right now. I don't drink alcohol avoid tomatoes/spicy food etc. I've started taking solifenacin 5mg again as my gp says it should relax my bladder but no success yet and didnt work previously (it's been two weeks??) I dont know what more I can do. I have contacted the secretary of the private uro to see if he is currently taking appointments as my nhs ones have been cancelled due to Coronavirus. I am a tearful mess right now and scared to have intercourse with my boyfriend as last time I flared the next day (not sure if a coincidence as we have before and it's been fine). I feel more depressed than I've ever felt. I'm in constant tears and can honestly say I dont think I can handle this life thing for much longer. I feel that my bladder is getting gradually more and more damaged. I'm absolutely terrified and I feel theres nothing I can do.
thank you for reading.
2 likes, 16 replies