Ok I know nobody can actually diagnose me but I’m desperate for any thoughts or experiences!
When I was born I came out with what they thought was a UTI and then they wanted to send me for scans of my kidneys however as this could have left significant scarring on the organs, it was agreed it would not be carried out yet.
All through childhood I remember it feeling like as what I could only describe at that age as peeing wotsit crisps (the burning). I wouldn’t ever go to the toilet at school, I’m
not really sure why but I only ever had one accident. I know this can’t have helped holding me wee in.
Get to secondary school and around aged 14/16 and the pains which I thought was now a UTI were getting really bad. However, any urine dip out of the hundreds I’ve had in my life, only approximately 3 have shown an infection. It would be excruciating burning, hot sweats, cold sweats, no temperature though and unable to urinate / unable to hold it in at times!
Around 7 or 8 years ago I had a flexible cystoscopy and urethra stretch and debris flushing and I had relief for 4-5 years, probably 3 years symptom free. Fast-forward to last year and I was finally booked for another flexible cystoscopy. Unfortunately the effect was the complete opposite. After 4 weeks I was in severe pain, spending my days on the bathroom floor in agony just peeing on a towel as and when I needed to let a little bit out.
Anytime I have flare ups, which is very common, I take paracetamol (a little too much at times) and drink litres of cranberry juice and it eventually goes away. Antibiotics do not help.
After the procedure I got urethritis, back and stomach pain, and intense UTI symptoms. I could not get out of bed or off the toilet for weeks. He noticed I had high retention during the procedure.
I saw the urology specialist and he was sure it was interstitial cystitis / bladder pain syndrome.
I was put on the urgent waiting list again and today I had a rigid cystoscopy and he blew my bladder up to check the lining and he said everything looks fine and he cannot see any signs of IC / BPS.
So now we are at a loss and he wants to see me again in 4 months. All scans, X-rays etc have always been normal.
I had a baby 4 months ago and whilst pregnant I only experienced the pain a couple of times which is amazing for me as I often have a week long flare up every couple of weeks. Since the baby was born and my body is going back to normal the pain is returning again. I drink 3-4 litres of water a day, soda water as a treat and the odd coffee and peppermint tea.
What can be causing such horrific pain that isn’t showing up on any tests? Please help if you have any experiences!!
Thanks in advance.