photo ABENA ADVERT-banner_zps5mzyerjh.jpg  photo Dmannose_zpsvcaxj4ag.jpg

Register Latest Topics
 
 
 


Reply
  Author   Comment  
MB1

Registered:
Posts: 16
Reply with quote  #1 
Hi everyone,

I have been suffering with IC symptoms for quite a while now, I was referred to a Urologist in 2016 and he said he thought it was interstitial cystitis - I didn't want to undergo a cystoscopy to confirm what GPs and the Urologist Specialist already thought it was, and I was very poorly last year with a separate health condition so couldn't face it, And I had read on this forum how sore and bad cystcoscopies can make people, so the Urologist agreed to give me Ialuril instills based on me having IC.

I started the Ialuril instills in October 2016 and had 10 instills in total before stopping them, the instills weren't life changing by any means but I did feel my symptoms getting slightly better but still had to be near toilets and avoid lots of foods. Unfortunately, the Nurse who had been doing my instills left and was replaced by a Nurse who really wasn't very good at what she was doing and I only had 2 instills with the new Nurse which both caused terrible urinary tract infections and pain and discomfort from her bad care, the previous ones didnt.

I asked if anyone else could do the procedure for me, which they couldn't, they didn't offer self help Ialuril instill for me to do at home - I feel the Nurse and the Urologist have been very poor in their care to me and haven't seemed to want to help and rather kept suggesting I do a cystoscopy or kept suggesting I be referred to a different hospital where they have more advances/alternative treatment, which just made me have no faith in them and i didn't feel supported at all.

After months of perseverance with this particular hospital, I have now stopped going to my current hospital for treatment and asked to be transferred to the other hospital which I hope will provide better care - Unfortunately this means starting the whole process over again [frown]

I am a lady in my early twenties and IC is effecting my life - I very often urinate and then urinate again And again, I can go out but need to know where the toilets are along the way and when I get there, I work and manage that as the toilet is nearby and I have had to dramatically alter what I eat so I don't have anything acidic, caffeine, tomatoes, chocolates, I don't have any condiments like ketchup or tartar sauce etc.

I have had a few urinary tract infections too that have mainly been caused by the Ialuril instill procedure or by bacteria accidentally entering the tract.

What I am after help with is what do you all suggest for me moving forward, as I am currently struggling on alone until I get my new referral through, and I am not sure even that will help?

My GP recommended Citaloprim SSRI tablets but I am concerned as I am very very sensitive to tablets and I rather get side effects or they irritate my bladder - has anyone used Citaloprim and what was the outcome? My GP doesn't seem to know IC and doesn't understand the impact it has and has no experience with it, so that's no help either.

Some people on this forum also recommended D Mannose tablets, but this concerns me also as it contains sugars which are found in berries etc, And I can't take berries normally as it effects my IC - anyone used these also?

I bought Desert Harvest Aloe Vera capsules but they seemed to make me worse.

Anything you can suggest or recommend would be very helpful, or any tips on what may help with my new urologist when I get to see them would be very very helpful.

Sorry for the rambling, Just wanted to give you some background info so you can maybe offer some help.

Thank you so much
MB1
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

 Teva UK Ltd Abena.co.uk
This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.