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EC treatment, need support
Hi, I am relatively new to the message boards but not to EC. I have had this disease for over 29 years. 
While many of my symptoms are similar to those with IC many are different. I do not suffer from a contracted bladder or loss of bladder capacity, I rarely have frequency (except at night) or urgency, diet does not affect my symptoms. I do suffer from pain, burning, pressure, spasms, low back pain, nocturia, and severe bleeding caused by Hunner's Ulcers. A direct result of this bleeding is severe anemia. My primary swears I have only "one little red blood cell left in my body and it is on crutches." My hemoglobin (red blood cell that carries oxygen) is currently at 4.0 g/dl. It should range between 12 and 18 g/dl. I have about 1/3 the red blood cells as a normal person.
I have been treated with DMSO, Chlorpactin, Prednisone, Imuran, Elmiron, Impramine, Vistaril, Fer-in-sol liquid, IV Imferon, vitamin c, folic acid, Amicar, antihistamines, antibiotics, Toprol, Cardizem, the "pill", Zoladex, nsaids, narcotic pain relievers, multiple fulgurations of the ulcers, and a partial cystectomy. I have had multiple transfusions in the past but we are currently trying to stay away from them due to the risk of HIV, hepatitis C and allergic reaction. I have also been treated with IV Imferon, but unfortunately I am severly allergic to it.
I have seen 12 urologists, a few hematologists, an immunologist, a rheumatologist, an oncologist, and four internists. I have been to the Cleveland Clinic, NYU Cornell Medical Center, and Montifiore Medical Center (in NY) just to mention a few. My bladder biopsies have even been sent to the Armed Forces Institute of Pathology in Bethesda. All the pathologists agree with the diagnosis of eosinophilic granulomatous cystitis, an auto-immune disease distinct from interstitial cystitis.
I have seen my bladder via cystoscopy (I have had over 120 cystos). It is red, raw, and awful looking. There are areas of leukoplakia, hemmorrhage, and ulceration -- and I wonder why I have pain! I cannot be treated with marcaine or heparin installations into the bladder because absorption of these drugs, though the ulcerations, into my bloodstream could possibly cause death.
I was wondering if anyone else has suffered from these symptoms and what you have done for them. I am currently working full time as a school nurse but this is becoming quite a challenge due to my symptoms. I have constant pain, burning, spasms, and bleeding. The bleeding is so profuse that it causes clot retention requiring bladder irrigation--I am a pro at this.
I also run an increased risk of pyelonephritis due to vesico-uretero reflux. Severe flank pain and a fever of 105.8 is always fun eek I am also contstantly exhausted from the anemia and lack of sleep. My uro and primary are great. They are always seeking ways to help me, unfortunately they have hit a dead end.
While many of my symptoms are similar to those with IC many are different. I do not suffer from a contracted bladder or loss of bladder capacity, I rarely have frequency (except at night) or urgency, diet does not affect my symptoms. I do suffer from pain, burning, pressure, spasms, low back pain, nocturia, and severe bleeding caused by Hunner's Ulcers. A direct result of this bleeding is severe anemia. My primary swears I have only "one little red blood cell left in my body and it is on crutches." My hemoglobin (red blood cell that carries oxygen) is currently at 4.0 g/dl. It should range between 12 and 18 g/dl. I have about 1/3 the red blood cells as a normal person.I have been treated with DMSO, Chlorpactin, Prednisone, Imuran, Elmiron, Impramine, Vistaril, Fer-in-sol liquid, IV Imferon, vitamin c, folic acid, Amicar, antihistamines, antibiotics, Toprol, Cardizem, the "pill", Zoladex, nsaids, narcotic pain relievers, multiple fulgurations of the ulcers, and a partial cystectomy. I have had multiple transfusions in the past but we are currently trying to stay away from them due to the risk of HIV, hepatitis C and allergic reaction. I have also been treated with IV Imferon, but unfortunately I am severly allergic to it.
I have seen 12 urologists, a few hematologists, an immunologist, a rheumatologist, an oncologist, and four internists. I have been to the Cleveland Clinic, NYU Cornell Medical Center, and Montifiore Medical Center (in NY) just to mention a few. My bladder biopsies have even been sent to the Armed Forces Institute of Pathology in Bethesda. All the pathologists agree with the diagnosis of eosinophilic granulomatous cystitis, an auto-immune disease distinct from interstitial cystitis.
I have seen my bladder via cystoscopy (I have had over 120 cystos). It is red, raw, and awful looking. There are areas of leukoplakia, hemmorrhage, and ulceration -- and I wonder why I have pain! I cannot be treated with marcaine or heparin installations into the bladder because absorption of these drugs, though the ulcerations, into my bloodstream could possibly cause death.
I was wondering if anyone else has suffered from these symptoms and what you have done for them. I am currently working full time as a school nurse but this is becoming quite a challenge due to my symptoms. I have constant pain, burning, spasms, and bleeding. The bleeding is so profuse that it causes clot retention requiring bladder irrigation--I am a pro at this.
I also run an increased risk of pyelonephritis due to vesico-uretero reflux. Severe flank pain and a fever of 105.8 is always fun eek I am also contstantly exhausted from the anemia and lack of sleep. My uro and primary are great. They are always seeking ways to help me, unfortunately they have hit a dead end.
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