Eosinophilic Cystitis (EC) is a rare bladder disorder that has symptoms similiar to Interstitial Cystitis with the symptoms of frequency, urgency, pain, bleeding and spasms. The pain from EC tends to be more constant and unrelenting and the bleeding can be extreme at times. The pain from EC is also more difficult to control than in IC.
In most cases the cause of EC is known and chemotherapy and radiation are known causes. Certain medications are also believed to be a contributing factor, as well as food allergies.
What happens with EC is the blood cells (eosinophils) that normally attack allergens and foreign objects in the body begin attacking normal healthy tissue – in our case, the bladder. For this reason, when there’s no known cause for EC, some doctors and pathologists think it may be an autoimmune disorder. Most times when the cause is known, the cure can be as simple as eliminating or controlling that cause, followed by a course of high, tapering doses of corticosteroids. Sometimes EC patients must have the effected area of the bladder removed (partial cystectomy). Others have been helped by DMSO treatments.
Below is a quote from a EC patient:
“The one thing that IS known about EC, is that it’s easily identified and diagnosed with biopsy. If EC is present, the deeper muscle tissue will be loaded with eosinophils. With EC, these blood cells attack the bladder. Ulcers in the bladder develop very slowly. There may be periods when the ulcers stop enlarging, but they never heal. Because of these ulcers, bleeding is a major symptom of EC, and the threat of perforation is always a concern. Resections are done to slow the progression, and cauterizing controls the bleeding.
The doctors I’ve been to all think that, because of the unhealing ulcers, EC might become cancerous, or it might spontaneously spread to other organs, but so little is actually known because so few people have this disorder.”
Connie Kotz says
I have EC and I am having a problem with my urologist understanding the pain that goes with it. He referred me to the Mayo Clinic and the only advise I was give was biofeedback which I am trying with little relief at this point. My primary Dr. and urologist dont know any more than I do about ec. They read same articles as I. My problem is pain management at this time and frequency. I just had another biopsy witch the urologist said there was no more sign of ec in the biopsys he took. When at Mayo Clinic the beginning of August they found one new lesion starting but was very small. Urologist didnt see it and said maybe it healed by its self. Can that be true? Why do I have so much pain so often? Does EC ever go away and then come back or is it always present but without lesions?
i’m struggling the same symptoms for 9 months already, can i get an update on ur case, eventhough it’s been years?
will it ever heal?would the pain go eventually?
Wanda Rednour says
Hi, I am 73 years old and in good health, I was just diagnosed with EC and have also been to the mayo clinic several times to try to find an answer. and there doesn’t seem to be an answer — Are there any other doctors or remedies that can be of any help. I am looking for anything.
I would like to speak with connie Kotz, to see if she has had any luck. Connie, If you are out there please email me at my granddaughters email address firstname.lastname@example.org