Successful Hydro & Trigone abnormality

[Shelleynz]

Hi everyone,

I haven't been on the Boards for about 6 months, but some of you may remember me.

I finally got up the courage to have my 1st ever hydro under general anaesthetic 2 days ago, and to my relief and surprise, am feeling great. This procedure was a HUGE success for me. I was in hospital 1 night with a cath inserted until the next morning. Discomfort throughout was mild, the worst being cramping with 1st bladder emptying (800ml).

Photos showed a perfectly healthy bladder and Uro said my capacity was large. However he found abnormal tissue covering my Trigone area, which I guess is where all my pain has been originating, esp. as it has the highest concentration of nerves. I've also had a lot of urethral and vaginal pain in the past.

He took a biopsy of the Trigone and another couple from healthy sites on my upper bladder but I may not find out the results until after Xmas.

My Uro. wants to do another surgery to burn off this Trigone tissue in the hope that normal tissue will grow back, although he said it often grows back stiff and inflexible. He also warned that recovery takes 6 weeks and can be painful!! Eeek, I don't like this idea.

? Does anyone else have this unusual Trigone tissue? and if so, what has your Uro suggested?

? Has anyone had their Trigone tissue burnt off? and if so, how was your recovery, did it work for your symptoms, or did it make you permanently worse?

Hoping for some replies,
Regards
Shelley

[MelindaP]

Hi Shelley,

I am sorry I have no info on that, but at least you got a diagnosis! I have a feeling that my problems also involve the Trione, as I have mainly urethral issues. Let me know what you decide to do. I am so glad the hydro helped you! I am considering having one as well.

Melinda :)

[ICNDonna]

I was diagnosed with trigonitis before my IC diagnosis. I think that's not at all unusual.

Donna

[MelindaP]

I also forgot to add that if the hydo was successful, why don't you consider doing them on a regular basis or as needed? I know a number of woman say they get relief from them-one woman had done like 60!!!
How are you feeling lately?
Melinda :)

[swarr]

The other day I was doing some research about apf and I came across some information ...


Finally, Chai et al showed that urine APF activity decreases while HB-EGF levels normalize in IC patients following two different IC therapies: bladder hydrodistension [14] and 3rd sacral nerve root stimulation [15]. These findings suggest the intriguing possibilities that bladder epithelial abnormalities in IC may be caused by APF, and that replacement of specific factor(s) altered by APF (such as HB-EGF) may result in normalization of bladder epithelial cell growth [16].

this is the website I found this in www.biomedcentral.com/1471-2490/4/3

I always wondered why Hydros work on some.

Sandy

[Shelleynz]

Hi everyone,

Thanks Donna for your contribution. That makes me feel a lot better as I am still sure I have IC, no matter how precisely my Uro. wants to categorise it.

I have decided to try the new Rescue Instillations containing Heparin & Lidocaine which are free at our local hospital. I am HOPING that my Uro will agree to recommend this treatment for me. I see him for my post op apptmt end of Jan.

Swarr, I'm glad you're following the APF line of research. I do too, and still believe that we may find better treatments or even a cure from this research.

My symptom relief from my Hydro was sadly short lived and I'm now feeling the same as I did before I had it done. What surprised me the most was that the surgery was not at all painful at any time, just a little uncomfortable.

I am already taking Neurontin, Tagamet, Amitripyline & Clonazapam for my IC so maybe those helped, along with pain meds. the anaethetist gave me.

Regards
Shelley