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I am writing this as I have had symptoms for a long time which i think may be IC, I made a post about 6 weeks a go but I've had a horrible day and I just want some advice and some help:( I am in my early 20s, I'm meant to have my whole life ahead of me and I don't know where else to turn. Around a year a go I started experiencing urinary frequency - going for a wee more often, around 8-9 times a day and I would feel urgency, almost like a twitching/spasm in my urethra where it would feel like pee was about to leak out? I would feel like I couldn't hold on very long and it would feel urgent and I'd have to go to the toilet pretty quickly and then there wouldn't be much there (sometimes only 100-150ml). I would have no pain, blood or incontinence.
Around 3 months later, I noticed a deep ache in the mid-lower right section of my pelvic area soon after I had swallowed any liquids like water/squash etc. The ache felt a bit like the throbbing sensation you get when you have a headache and it was as if I could feel my bladder filling up, although I think the 'ache' is next to my bladder instead of in my actual bladder (my GP doesn't seem to know?) Again, the frequency and urgency carried on. So I saw my GP - they initially thought I had an overactive bladder so prescribed me with Neditol/Vesicare (neither worked), sent me for a bladder ultrasound (everything looked normal), and a pelvic ultrasound (also normal).
I have also had some rectal issues where I was experiencing intense aching/discomfort in my rectal area so saw a colorectal doctor privately. He diagnosed me with a condition called proctalgia fugix with possible levator ani syndrome and put me on medication for this which has worked really well so far. I mentioned the pelvic ache/urinary frequency but he didn't seem too concerned and didn't think the two were linked.
As time has gone on I have tried to cope with my symptoms by cutting out alcohol, limiting acidic foods and limiting fizzy drinks/caffeine as much as possible. Nothing has helped me so far, even on days I drink just water the aching is still there - I am on a long waiting list to see a urologist (my GP finally referred me but clearly think I'm being a hypochondriac as all my scans have come back fine). The past few weeks or so I have been in so much discomfort, the urgency and the pressure in my pelvic area has been horrible and I am constantly miserable and upset:(. I put off seeing my boyfriend, I don't look forward to things I should be excited about, I cry pretty much everyday. I feel so alone and isolated - I feel like the only thing this could be is IC from my research. The only doubt I have is that a lot of people describe burning sensations when they pee or burning in the bladder and thankfully I haven't had that so far.
Has anyone got any advice or experiences? I have no idea what is wrong with me and no one in the medical field I have dealt with seems to know or care 😦
Thank you so much for reading I really appreciate any replies xx
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