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and OMG I'm in so much pain. I couldn't pee so they were thinking about keeping me in the hospital but sent me home with a catheter instead. I can feel my bladder filling but I am having to force urine into the bag. I don't think that this is normal. Any suggestions. I'm close to calling my doc to see if I can take this dreadful thing out because it HURTS!!!
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Definitely call your doctor. Are you able to cath yourself if you can't urinate?
And please let us know what he/she says.
Warm hugs,
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool -
A lot of pain the day of is normal, but your retaining urine and being unable to pee at all is definitely not. Call your doc.Comment
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::big hug::
I am sooo sorry to hear you are not feeling well. I had a very difficult time peeing after surgery.. but they watched me on the toilet for long enough.. that i finally did... I know how painful and akward this all feels now. But please rest assured in a few days you will be feeling much better! I haven't had the cath before, but I recommend you do whatever you need to do for that!! I'm sure many others on this site will know what to do... Please do feel much better... and soon!!! P.S. here is an
for you!! Enjoy 
Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa
Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.
Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.
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I went to the doc. this morning. My bag filled several times after I posted last night. I have just peed on my own!! Great feeling! He said that my body just needed the fluid that I got yesterday.
They saw no signs of IC yesterday but they did a biopsy so we're waiting for that.
I'm in a lot of pain (bladder and incisions from the lap) but I know that this is short term and hope to be feeling better than ever in a few days.
I really want to know what this is if it's not IC. My symptoms point directly to that.
I'll update you guys more later.Comment
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Hi.
I am glad you are feeling better today. Unfortunately, the hydro is not 100% accurate in diagnosing IC all the time. There are alot of flase positives and false negatives. My gyne said they had a study where they did hydro's on people with and without IC and some of the ones without IC got a positive hydro, probably from injury to the bladder from the hydro itself with stretching the bladder.
Anyways, I do hope you continue to feel better. Big Hugs.
JenComment
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I feel the PUFF questionaire is far more accurate than just the hydro. If it walks like a duck, talks like a duck, and all that. So what if the hydro says you don't have IC? Then you have all the symptoms and you're just supposed to act like you are healed because the hydro was negative? I hope they find out what is going on and you get a correct diagnosis.
Take care,
MoonheartComment
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The latest research my urogyn has completed is on the effectiveness of diagnosing IC with surveys of symptoms compared to more invasive testing such as hydro. His research shows that survey and interview of symptoms is as accurate predictor of IC as test such as hydro cysto and potassium sensitivity.
I think the research was with Allercon.TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
I post to encourage and offer total support for rescue instillations.
Find me on facebook: L. Clark Thomas
LouannComment
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I was just reading what L. Thomas wrote about the survey being uses to Dx IC and I agree with that. My gyne told me that when she has patients come in that have symtpoms of IC, she has them fill out the survey. If their symptoms fit that of IC, she treats them with elmiron and such. She is the one who told me the hydro was not such a great test and that it is inaccurate alot of the time with false positives and false negatives. Not to mention how if has made alot of ICer's worse. There are some that it helps though. I guess it just depeneds on the person and how bad of shape their bladder is in to begin with.
JenComment
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I figured that by today I'd be getting around a bit easier. I'm not! I'm nauseas, have a lot of back and leg pain, and of course my bladder hurts. I haven't been able to keep anything down at all. Is this normal?
JennComment
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You said you had a lap as well - are you taking pain medication? If you are that can certainly make you nauseous but I would call the Dr. and let them know what's going on. I have had 3 laparoscopies to remove endo and 11 hydros but never done at the same time.Comment
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I really hate to be a constant complainer. BUT, I very seriously doubt that I will ever have that procedure again. I am constantly peeing (avg. of 4 times an hour) and it hurts SO bad. At least before, I would have a few good days and a few bad. Since the hydro, it's all been bad. The back pain is much better but I do still have the leg pain (from my inner thigh to around my knee).
The inner wall of my vagina is throbbing nearly constantly (much like your finger would hurt if you pounded it with a hammer).
I go back to my gyno tomorrow for my post op. I'm probably going to have to take much more of his time than he really has to spend with me but I want to know what is going on with me.
I'll update you guys tomorrow evening.
JenComment
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I am so sorry you are feeling so bad still. Do you think the hydro made you worse in terms of bladder pain? I am so sorry you are feeling so bad. Sending big hugs your way.
JenComment
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Yesterdays' appointment was certainly not the most informative appointment I've ever had.
My bladder looks good and the biopsy looked good so my doc. seems to be backing down from this being IC. But dude, just 'cause it doesn't LOOK like I have anything wrong doesn't mean the pain is going to go away.
I do have a UTI possibly from the cath. which would explain why I have been miserable since my surgery. Hopefully, now that I have a prescription for that things will start to look better.
My gyn wants me to go to a pain clinic but I don't think that's a great idea. It's not my only goal to stop the pain. I want to know what's wrong with me/how to treat the condition before I stop the pain. Let's just say for the sake of argument that I have some God awful cancer...stopping the pain wouldn't be a good thing at this point.
My symptoms point directly to IC. If he isn't willing to diagnose that or keep searching for what it is, I think I'll be searching for a new doc.
What do you guys think? I'm new to this.
Thanks,
JenComment
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I am in the exact same position. Doc said my bladder looked normal except for a lesion on the dome of the bladder (which we think has been there for 2 years, incidentally). The pathology report from my biopsy on 4/20 just stated that there was chronic inflammation. The doc has asked them to look deeper into it, but I am certainly left frustrated. At this point a diagnosis would be so helpful!Comment
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