Cannot take this anymore - IC
Posted , 14 users are following.
Hi
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.
Charlotte
2 likes, 17 replies
olive8 charlotte15743
Posted
do you not think you have vaginal atrophy it makes you constantly think you have a UTI
dave49668 charlotte15743
Edited
I know this is a late reply on the post as I'm 2 years to late. I am sorry to hear that your having some IC struggles Charlotte and I can totally understand and sympathise with how you feel as I have felt the same and it's horrible to feel lost and on your own and not knowing the next steps to take for a diagnosis. I have only recently found out that I have Interstitial cystitis through a suspicion I've had for 8 years since I first had surgery for a problem I had with constant water retention and was constantly pleading with my doctor at the time (a male doctor who was unsympathetic) and head urologist at my local hospital that it was IC but they both didn't believe me. After having surgery after urologist suspecting it to be an obstruction when I suffered a severe kidney infection at a friend's wedding, as you can imagine the surgery didn't work to fix the issue and 8 years later I found out it is because my original hospital misdiagnosed my issue which was my local hospital that I was treated at, I also had the head urologist (who was very rude) who told me that it couldn't possibly be IC as I was imagining it and then they told me there was nothing else that could be done and took me off referrals list But after years of issues and constantly going to doctors it turns out I was right all along due to my gut feeling and it's a good job I felt something wasn't right in my body and could tell with all the pain and pressure in my bladder. The way I found out was I kept having issues and I went to my doctor who was a female doctor (who was really lovely and understood) she examined a felt my bladder said it was feeling distended and requested I be sent to Bristol hospital. They put me in for a couple of tests including a urodynamics with Xray they concluded from the pain I had in the test that they saw on my face and the sporadic results of the bar on the chart of the final results that something was a miss So they requested I have a cystoscopy under general anaesthetic with a deeper camera test to go deep into bladder,I was asleep for this as he said I would be in immense pain if they did it while I was awake so they put me under general anaesthetic. They have since found cysts and hemorages in my bladder and it's indefinitely interstital cystitis, my advice to you is to not give up. Keep going to doctors if your not happy with the outcome of the tests and you know something is wrong as you know your own body, you can get a second opinion at anytime. I would definitely recommend Bristol hospital if you can't get any joy from your current hospital if you live in the UK. But I really hope that you have found out and have the confirmed results of IC and are on the mend. I have currently had a really bad IC flare myself over a period of a few months, I've really struggled with pain, urgency and the pressure feeling you describe, I'm currently awaiting bladder instillations at Bristol hospital but I've had to cancel a few times because of feeling ill with IC. Hope this message will help other people to get the help they need and a solid diagnosis and help with IC. It's such
a horrible debilitating condition to have to live with and no one should have to do it alone.
Hope your IC flare has settled.
Take care of yourself Charlotte.
Dave 😃.