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Posts: 3
Reply with quote  #1 
Hi everyone,

I am just after a little bit of advice really. I have suffered from bladder issues and pain on and off since I can remember. I had my first UTI when I was 18months old and had several tests done and all that was found was I have differing sized kidney valves, but nothing else. When I was a child I remember feeling pain when my bladder was filling and having the most horrendous sensation after using the bathroom. I didn’t know whether to sit down, stand up- it just made me very restless. I felt this on a day to day basis and chalked it up to being normal for everyone so never mentioned it to my parents. The pain and discomfort went away when i was about 12. However it returned about 4 years ago, and now I have urgency issues too. My bladder feels uncomfortable most days, with pressure and stabbing pains.

I went to see a urologist who said my symptoms sound like PBS/IC and then I had a urodynamics test and a cystoscopy. After this I saw another urologist who said there was no redness in my bladder, or ulcers and that I should just drink cranberry juice. He said my urethra is narrow and I could have an operation, but I’m too young at the moment, but that probably would not be responsible for my pain.

I never went back to see my GP as I was very embarrassed and upset that years of discomfort and pain was so easily dismissed. It’s been just over a year and my symptoms have gotten worse, I have discomfort, pain and now urgency. I have an appointment with my GP tomorrow to look at this again as I don’t believe there isn’t anything wrong, and cranberry juice simply isn’t the answer.

I was wondering if anyone has had the same symptoms as me but has NOT had a inflamed or red looking bladder upon looking at cystoscopy results and has been diagnosed with IC? I’m not sure if it’s even possible to have IC and have a normal looking bladder.

I apologize for the essay about this, I’m just at my wits end and just want some answers, if there are any. Thank you x

Posts: 42
Reply with quote  #2 
Hi lala93

Just read your post.

I was diagnosed with IC in my 20s and at the time my bladder looked perfectly normal under cystoscopy. As time has gone on my bladder now shows inflammation of the trigone but I believe my problem to be chronic infection and not IC.

If UTIs are a problem for you, could it be worth going see someone like the Professor in London about a chronic embedded infection? I have never found Cranberry Juice at all helpful for a chronic UTI and it certainly won't help if you have IC! If you contact the BHUK Office they can give you the Professor's details or you can message me.

Posts: 93
Reply with quote  #3 
Hi Lala

I have had IC/PBS since 2010 (I was in my early 20s) during the diagnosis period my flexible cystoscopy showed no issues however I then had a rigid cystoscopy under general anaesthetic which showed multiple cuts, areas of inflammation and scar tissue. My urologist at the time explained that this is quite common as they can’t examin your bladder well enough while you’re awake as it would be too painful.

It took almost 2 years for me to get a diagnosis so please don’t give up and keep pushing your GP xx

Posts: 3
Reply with quote  #4 
Thank you both so much for reply to my post. I saw my GP today who read 3 letters from the 3 urologists that saw me, but they all said different things. One said nothing was wrong, another said I could have a urethra widening operation, and the other said my symptoms align with painful pelvic syndrome, which he referred to as IC as well. But none of the letters gave me a definitive answer.

My GP has sent me for some blood tests & a urine sample and said when the results are back he will send a referral back to the urology department. I don’t think a urethra surgery is the full answer as while I do have pain when going to the bathroom my bladder cramps and is painful throughout the day and I’m up and down for the bathroom all day, quite urgently. So maybe I can have that done in conjunction with other treatment? Who knows. I’m pretty discouraged, but I suppose I’m one step closer to some answers, maybe. I really appreciate your responses, it’s nice to hear back from people who are able to relate xxx

Posts: 35
Reply with quote  #5 
Yes, I had the bladder pain on filling, urgency and frequency for nearly 3 years before diagnosis. I had almost every urology test they can do and saw 5 different urologists. I eventually had a rigid cystoscopy with bladder hydrodistention and biopsies. The hydrodistention showed virtually no inflammation but the biopsy analysis showed significant mast cell activation in the bladder wall. I was then given a diagnosis of IC and offered Cystistat bladder instillations. They worked very well and my pain reduced significantly. I also took Tolterodine (Detrol) for 2 years and was able to retrain my bladder back to a level of normality. I now follow the IC diet, take Prelief with every meal and AZO Maximum Relief when I get flares.
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