Inflammed Trigone, not Interstitial Cystitis 😕 please help me! 😢

[BethanyAnn]

Hey ladies,

I’ve posted a few times recently about my horrible symptoms - peeing every hour of the day and the night, burning and irritation of the bladder like a UTI although my samples come back negative when tested for bacteria, pain during and after sex and sharp stabbing pains. I also have minimal Endometriosis.

I had a cystoscopy yesterday and even though I have every symptom of Interstitial Cystitis, the results said I don’t have that and it’s just that my Trigone in my bladder is inflamed due to recurrent UTIs. I’ve been put on antibiotics for 3 months and that’s it.

My urine samples come back as negative so how can they say this is due to recurrent UTIs and how can antibiotics which never work anyway, somehow bring down the inflammation, get rid of the pain and burning, and stop me peeing so much? I’m so confused and upset 😩.

Online, inflammation of the Trigone and IC are identical apart from that simple inflammation creates a funny pattern on the Trigone whereas IC doesn’t.

I’m trying to get hold of my consultant again to ask my questions but I’m not having any luck. I feel like I have been misdiagnosed and fobbed off with more antibiotics and no real explanation.

Has anybody had this before or been diagnosed with inflammation of the Trigone after a cystoscopy?

Please help me! Thank you xx

[luthien]

are you seeing a specialist? perhaps look at a bladder / urinary specialst? they may be able to have a look with cameras etc in your bladder and the tubes leading to the kidneys.

[BethanyAnn in reply to luthien]

That’s what I had both yesterday, a cystoscopy 😞 x

[luthien in reply to BethanyAnn]

Ahh yes apologies!

I have no idea, or suggestions

[Ilogn]

I've just posted something similar. I have the same urinary symptoms as you. What feels like chronic uti's but not infection found. I was referred to a urologist a few years ago before I got my endo diagnosis. I had a cystocopy and urethral dilation and nothing was found. I was also fobbed off and not offered any treatment.

Recently got my endo diagnosis but urinary symptoms worse now than they were then. My current consultant is actually a specialist in gyno and urology and conditions that affect both I'm waiting to discuss this with her. Maybe request a second opinion? You entitled to do this? So sorry to hear you're suffering x

[BethanyAnn in reply to Ilogn]

My consultant who was also my surgeon is a bladder and Endo specialist. She was my second opinion but the first consultant didn’t think I needed a cystoscopy at all and actually I’d just lost all control of my bladder! The consultant who did my cystoscopy yesterday has been really caring but I don’t understand her diagnosis.

How can all my symptoms and problems which are getting worse daily be due to some inflammation and all be sorted from antibiotics which have never worked before? ☹️ I feel like I’m going insane! x