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Hello all, this is my first time posting. I'm newly diagnosed. I had a cystoscopy while asleep and my urologist said that my bladder could only hold 700 cc when the normal bladder should hold 1,000 cc while asleep. He says my bladder has shrunk and I need to treat my IC so it won't shrink anymore. I'm going with "rescue instillation" as I don't want to take Elmiron orally. I read somewhere that the bladder does not "shrink." Anyone got a thought on this???
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I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.
Nancy -
Bladders can and do shrink due to scarring and fibrosis from the continuous inflammation IC causes. When I had a cysto/hydro done three years ago, my under-anesthesia capacity was 600cc, and it is probably worse now since my IC progressed since then (but now seems stable
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You will find that many people who answer this post will report bladder capacities less than normal -- some have capacities that are as small as 80cc, but those are very rare, extreme cases of IC.****
Jen
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. 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. -
Wow, thanks so much for your thoughts. I guess that thing I read about bladders not shrinking was wrong. I had a hard time accepting that I have this IC thing....now, I'm not in denial anymore, and this site is wonderful!! When I went through menopause, I subscribed to a wonderful newsletter out of Canada and it saved my life during those years. I'm so grateful to have found another bunch of friends here to help me weather this storm!I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.
NancyComment
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Just wanted to welcome you to the boards....
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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Thanks so much! I'm soooo glad to be here.I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.
NancyComment
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its ni ce to meet you.. welcome to our home. You will find a wealth of info with in these pages.
My bladder holds 200 cc's awake, and I retain 70 cc's.'The will of God will never take you where the Grace of God will not protect you.'
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Thanks! How do I put up my personal info on here like you did???I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.
NancyComment
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haha i love this site and all of you
I had the same problem forever. What attaches underneath these postings here, is called your Signature. So just go to Quick Links on the upper right corner of the I.C. options bar, and click on Edit Signature. Edit Profile is for personal information. Welcome, Welcome and warmest of regards to you!
In addition: I'm one of the unlucky shrunken bladder cases. My first testing showed my capacity to be no more than 250 cc's and I was just diagnosed in October. So heaven help me if it does get worse. Just know, that keeping in contact on here, you will never be alone!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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