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Interstitial Cystitis


runningshoe
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HI,

You probably have noticed from my posts over the past two weeks that I have had lots of vaginal pain which the drs treated as yeast. I have been miserable and today I just couldn't take another minute. I had interstitial cystitis in my 20's so I went to my urologist just to run things by him. He listened to my story (no itch, no discharge, little yeast under microscope, 3 yeast treatments and still burning) and shook his head and said you are having a ic flair up from all the stress (pots dx just 2 months ago). I started to cry and he said don't worry we took care of it before. So on one hand I am relieved to have a bottle of pain killers in my hand (he said I need to get on top of the pain and rest) but I am scared to go down the ic road again. I lived with it for years! Just recently I said to my husband I should go on the ic forum and let those people know that you can be free of it. Just when my pots was starting to be controlled I got this again. What is the deal? I have asked all my drs if it could be the medince or high salt diet and they said no. If you have ic please give me your input as to why we get both these things. What is my body telling me? Also how do you manage major flair ups? Thanks.

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I think I have some sx of I.C. that comes and goes but never had a full blown flair. My heart goes out to you and try to get some rest like your doc mentioned.

I hope you can get it undercontrol and I don't know if there is a connection. I personally think their is a connection as to why many parts of my body are wacky but the docs can't put it together.

Dayna

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This may not be relevant at all, so pls disregard if you need to. I've had my fair share of bladder issues-infections, irritation, feeling like I need to pee all the time.

However, a ;piece pf the story I'm just now realizing-- I have eds, and my pelvic joints are frequently out of whack. Before I was diagnosed, I would get intense pain that felt urological or gynecological, but the urologist and gynecologist couldn't find anything. Now I know that when my pubic joint (the bone in the front of your pelvis) is out this triggers the sensations, as the joint pinches all those nerves. If I can get back in joint, it immiediately resolves-- except for the fact that the joint remains loose.

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I have POTS, and as long as I have had POTS (4 yrs.) I have had bladder pain,bladder discomfort,bladder infections.I also have feelings like the nerves in the pelvic area are exposed. I am having a cystoscopy Feb 22 ,my doc thinks I have IC.These bladder problems have been unbearable at times,I have had excessive bleeding,and in Dec. I also had kidney stone. I am having the cysto under general anesthesia(not crazy about that). Others on the site have told me I am better off being under,cause it is not pleasant. I sure hope the dr. will be able to help.Now when I have a flair up I take pain meds. and pyridium, it does help calm down the bladder. If any of you know of any things or meds. that help, please

let me know. As far whether POTS and IC are related,I cannot help think they are all my other seamingly unrelated medical problems,started when I got POTS ???? Pat

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So sorry for your suffering!

IC HAS to be related, as I TOO have had POTS/CFS for all of my adult life, and also have bouts with IC. I believe that there is a connective tissue situation going on here.

Recently I started having bladder problems, too. Read up on fibromyalgia and you'll see that all these problems are involved.

If Dr. David Bell is right and CFS and POTS are the same, then this makes, unfortunately, plenty of sense.

Just try to hold on and remember, if it went away once, it will go away again.

Good luck,

Elegiamore

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Hi, Thanks for your support. I feel so desperate when I am in pain. PAT S - there is a lot of info on the web about IC. They have a good website and forum. It is scary to take pain killers just to get through the day but that is what I am doing. My mom knit me a shall to keep me warm and my kids are trying to keep themselves busy. Luckily my husband who travels all the time flew in last night. I hope everyone including me has a good night!

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Lina, I just told my father the other day, that I thought all the salt and gatorade could be adding to my bladder discomfort. Take care sleep well! Pat

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