Ec?

[Kiyoka]

Hello everyone, I'm sorry I hadn't come in here at all in my year and what not I been a memeber. I have no idea was Eosinophilic Cystitis is, but I want to learn what you know? I heard it's not fun at all, wish that they would find what it is and how to treat it. You guys are all heros and I know you guys are amazing wonderful people. Please let me know how you are doing.

[ICNDonna]

Unfortunately, there's not a great deal of information available about EC, but you can read some at http://www.ic-network.com/ec/

Donna

[Jeanne D.]

Eosinophilic Cystitis is an auto-immune disease distinct from Interstitial Cystitis. Literature review offers no specific treatment. It it a rare disease and no specific research is being done.

Many of the symptoms of EC are like those of IC. Bladder pain and pressure, pelvic pain and pressure, burning, bladder and urethral spasms, Hunner's ulcers, glomerulations, bladder inflammation, nocturia, sometimes frequency and urgency depending on the degree of inflammation and where in the bladder the inflammation is located, usually no UTI -- sterile urine cultures, hematuria --blood in the urine (from bleeding Hunner's ulcers), and retention.

Biopsy of the inflammed areas and/or ulcerations show infiltration of the bladder mucosa and/or detrusor muscle (bladder) with eosinophils. An eosinophil is a type of white blood cell that increases in number during an allergic reaction.

I know first-hand about this disease, as I suffer from it. I have had it for almost 30 years. Unlike IC, this disease more often continues to progress. I suffer from all the above mentioned symptoms. Unlike IC suffers I do not suffer from severe frequency or urgency. Usually those symptoms are only present if I should have a rare UTI or inflammation of the trigone. Food or beverages do not affect my EC. I can eat or drink whatever I like, with the exception of alcohol. Usually our symptoms are more severe in nature than those of an IC sufferer. We can have remissions and we certainly have flares!

EC patients usually try the same treatments as IC patients. I have been treated with antibiotics, immuno-suppression, hormone manipulation, bladder instillations, Elmiron, Vistaril, Imipramine, cauterization of the ulcers, a partial cystectomy, a variety of pain meds, just to mention a few things. I have learned to self-cath and do my own instillations and irrigations.

I recently posted in the JUST VENTING forum. The thread is titled "Hit Rock Bottom." If you are curious as to just what a patient with EC goes through, you will find it in this thread. Most EC sufferers do not have symptoms as severe as I do. I am one of the lucky 2 -3 % that suffer this severely. :yikes:

I hope I was able to provide you with an understanding of EC.

Jeanne

[Kiyoka]

Thanks Jeanne, I have read your post on the venting forum. I'm sorry to hear about all your troubles. Please let me know if i can do anything for you. I"m praying for you. Thanks for the information. Hugsssss

[Stacydfld]

Really want to ask you... How do the doctors know that what we have is IC compared to EC?????Just wondering also what is the difference between the two?? Any infomation you can give me??

Thanks
Stacydfld

[Jeanne D.]

A patient who has EC will show eosinophils in biopsied bladder tisuue. A patient with IC does not have eosinophils in biopsied bladder tissue. An eosinophil is a white blood cell that increases in number during allergic states.

Eosinophils attack the bladder causing inflammation and ulceration in EC patients. It is sort of like the bladder is allergic to itself.

Jeanne