Hi all
Feeling really despondent this morning and just need to talk to someone. I feel as if I am in my own private hell that I cannot escape from and keep going over and over things in my mind trying to work out how I ended up in this flare. Sorry for the long post but I feel as though I am heading for a bad place and just desperately need some support.
I have eosinophilic cystitis and my main symptom is pressure on the bottom of my bladder like a heavy brick when in a bad flare. However in the last 10 years I have only had 3 bad flares that have caused that pressure feeling and required me to use steroids to calm it down. To be in remission for so many years makes you forget just how soul destroying and depressing this condition is and I never thought for a second that I would be here again. My bladder has been great for the last 3.5 years (I had a flare after having my son in 2010 which was to be expected but settled with steroids) and although I am always ‘bladder aware’ and I have the odd day day or two a month when it feels irritated and I go to the loo a bit more than normal, I have lived a completely normal and happy life.
For those that have read my recent posts, know that I am in a flare up that started on Sat 14 Dec and initially happened straight after sex (never happened like that before) – it caused horrendous pressure on my bladder for several hours which scared the life out of me but eventually it calmed down and my bladder was back to normal by the following day. On the Tuesday I had a transvaginal scan and Thursday the flare came back and was different in that I was drinking lots but nothing coming out, then frequency for several hours and then the pressure came on and it’s been off and on ever since. I have been beating myself up about having that scan thinking that is what bought the flare back when it had completely settled down and I cannot get past thinking I bought this on myself. My urologist disagrees and says that it for to react after sex like that means something was clearly already going on and furthermore a scan wouldn’t take 2 days to show a reaction with my bladder (although I am wondering if it caused a yeast infection now)
I started my steroids on Xmas Day and noticed that on NYE I was also getting a really sore and swollen urethra which I have only ever had once before with a bad thrush attack in 2005 which caused my bladder to flare. My bladder was very up and down the first week on steroids and wouldn’t settle for longer than a few hours before pressure started again. Last Thurs/Fri were really bad and after getting negative results on the urine sample back I suggested to my doctor that I try a fluconazole tablet. I took it on Friday night and my bladder settled down a lot over the weekend and I have had my best 5-6 days since this flare started. However my urethra is still swollen and although I am on a yeast and sugar free diet, the problem persists. I can put up with that as long as it’s not affecting my bladder but have felt from the start that this flare was different and there is something else going on. The urethra symptoms lean my towards candida that is upsetting my bladder and stopping my steroids from completely settling things down.
I spoke to my gp yesterday who completely dismissed that the thrush tablet had helped my bladder and just said that the steroids are working and if I am better than I was this time last week it’s down to steroids and not a thrush tablet that would have been out of my system by Monday. She completely dismissed candida overgrowth as being a possible cause of this flare and she was totally against taking another thrush tablet.
Last night I had the pressure back on again and this morning I was coming into work feeling like I was going to have a panic attack (very unlike me) because I don’t want this to be my life again and I don’t know what is going on to cause it or how to fix it. I then start to feel really guilty because I know a lot of people on this site are dealing with much worse cases of IC than I am and their quality of life is very low because of it and I should feel grateful that I am able to get on a coach to work and manage a full day in the office.
David (my husband) has been so amazing and he keeps saying look how much better you are than last week and you’ve managed to go to work and I know your bladder is not back to normal by any stretch but you’ve had 5 or 6 days where it has been more settled and the pressure has been off a bit more and you have to give it time for the steroids to work. We have been together for 10 years and he has never seen me cry over my bladder before this flare and its scared him how mentally downhill I have gone since this started. This is the worst time I have been through since I was diagnosed in 1994.
I feel like there is something else going on because of the urethra symptoms and the swollen feeling tends to go during the night and is back during the day. Also I feel like there is a fist pressing into my bowel sometimes and my weeing was quite random yesterday. I drank quite a bit during day (750ml) but peed less than 1/3 of that out yet had another 200ml last night and was up 3 times in night having fairly big wees - don't think I am retaining as my urologist scanned me on 30th Dec to check and I wasn’t. This is just more stuff that makes me think this is not just a case of my bladder lining being inflamed and maybe candida is to blame..
Please don’t misunderstand that I KNOW it could be a lot worse than this - I was nearly driven to suicide 20 years ago in the 6 months before I was diagnosed with EC and put on steroids which gave me my life back and I couldn’t work or leave my house in that time and I was in hell with the pain and discomfort of it. I know that although this is uncomfortable and driving me a bit mad when the pressure comes on, it could be worse and I need to be thankful that it’s not. However, I want my life and bladder back to how it was and I am feeling like mentally I am not coping at all.
I feel vulnerable, isolated and detached from everything around me and I am concerned for my mental state as I can feel the panic welling up now in my chest as I am writing this. I am so fearful that I won’t get any better than this (or may get worse) and I cannot see the joy in anything at the moment, not even my beloved son because I have this grey fog enveloping me and I feel in a nightmare that I cannot escape and I keep blaming myself for having that bloody scan.
I am so sorry for laying this on you but I am trying to appear normal at work but I am crying at my desk as I type this and feel like I don’t know what to do next. I know I have to give the steroids more time to work and they have taken 3 weeks or more before to really settle things and one occasion in 2005 I was on them for a month and they didn’t help at all although I wasn’t in a bad flare as this one. Things eventually settled down on their own. I have grapefruit seed extract and uva ursi to try but am currently too scared to try in case it makes things worse. I suppose I just thought that the steroids would do their job, my bladder would go back to normal and life would go on and now I don’t think that is going to happen.
Thanks to everyone who stayed with me till the end.
x
Forum: Interstitial Cystitis/Painful Bladder