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lisacornwall

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Posts: 21
Reply with quote  #1 
Hi everyone. I'm sorry to keep posting on here but I find getting my feelings 'out there' is somewhat cathartic. I'm living in a bladder bubble, I can't get out of my head, I feel like I constantly need to pee and I can't stop thinking about it when I don't. My cycsodistention has made my bladder a million times worse, I struggle on a good day to go an hour without needing the loo. I'm struggling at work, I'm struggling on my days off and I don't really have a life anymore. I'm told I need surgery, I'm absolutely petrified about the prospect as my previous one went wrong and I'm terrified of what could go wrong again, but more serious. I'm terrified I might never get better, might never be able to have children and this illness will destroy my life, as it feels like it has done.

I need someone to tell me things get better, I feel like I don't have any options, my consultant thinks it's only surgery, I'm so so scared. I'm having nightmares about it, I'm depressed, I'm anxious. I'm desperate. I don't have a uti or overactive bladder, I have a small capacity and am 'highly abnormal' according to my consultant. I just hope someone else who was also 'highly abnormal' reads this and gives me some hope!

Thanks, sorry to be so down but I'm just in a vicious cycle of hell at the moment.

Lisa xx
doloroso

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Posts: 73
Reply with quote  #2 
Hi Lisa,

You poor, poor thing! I do not have your condition and have no idea what you are going through. However, I can only give you words of support - hopefully!!!

I have had ongoing UTI's and am still under my urologist. I am in a very, very good place but IT TOOK TIME!

Trust your Consultant Lisa. That's the first step. If the only alternative is another surgery you should go for it. You WILL get better believe me. We reach rock bottom in all situations in life. Imagine hitting the bed of an ocean? Well, you cannot go any further can you? What happens next?? You slowly, slowly rise to the top of that ocean making it happen and are free! I know my words may not be of any consolation right now Lisa but I do wish you all the luck in the world and no doubt you will receive replies from patients who are experiencing such a harrowing condition. Try to think positive even though it sounds so difficult. Easy for me to sit here behind a keyboard and write this I know.

Am sending positive vibes and hugs!

YOU WILL BEAT THIS! YOU WILL BE WELL AND HAVE A FAMILY!!!

XXXXXX
lisacornwall

Registered:
Posts: 21
Reply with quote  #3 
Thank you so much, your words are wise and definitely give me some hope. It is a long road and the ocean metaphor is a really good way of looking at the situation. You are also right about trusting the consultants, it's hard to see things clearly at the moment because I'm in the middle of the problem and suffering, but I hope that eventually things will be tight again.
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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.

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