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I was diagnosed with ic 5 years ago. My symptoms have gotten worse but I think its plateaued. I've had some good months, but the past 5 have been horrific. lost my job 3 1/2 years ago because of the constant pain and frequency. I was awared disability (without the help of an attorney) 3 years ago. I will describe my symptoms below but I will tell you that I had a cysto (in which I had to be put under) 2 months ago and my Dr stated that he has never seen a bladder as ulcerated as mine. In addition, my bladder can barely hold 7 oz of fluid at one time. Before I talk further about my condition, I want to let you know that I have a tremendous amount of faith and find the most comfort when I am either reading spirtual material or talking with God or Mother Mary. I am grateful for having dozens of friends who really care and pray for me, a loving and caring family, a terrific ex husband and kids who are angelic, my faith,this chat room, disability, medicaid and medicare. As most of you can attest to, one of the worse consequences of IC is the amount of stress it puts on our loved ones. I must constantly remind myself to tell them how grateful I am for their unconditional love.
I have tried many medications and treatments and here are the ones that I feel work the best. I am currently on a fentanly patch , vicodin 30 per month, wellbutrin, zoloft, 50 mg trazedone, zanaflex, klonopin and pyridium as needed. Not sure or the exact ingredients but the DMSO with the garlic taste helps although the procedure itself is extremely painful. The childsize catheter put me in tears and I am in intense pain 8 hours after. I feel like I have to urinate but nothing comes out and the pain in my uretha is horrible. I also go to physical therapy to loosen my pelvic floor muscles. The therapist basically massages the muscles in the pelvic floor, my stomach and buttocks. I highly recommend it! Due to insurance I can't go every week, but do go usually 20-24 times a years. When I have really bad flares and it feels like an infection, antibiotics (amoxcifin?) always helps. When I have a relatively good day, I work work out. I usually will ride a recumbent stationary bike, lift weights and swim. I love to swim and feel that it is the one excercise that doesn't make my bladder bounce up and down. I may have some pain afterwards, but the endorphines and the feel of "normalcy" that follows a good workout are worth some pain. I try to follow the cancer diet which basically consist cancer diet which consist of purifeid water, lite soy milk, no refined sugar, whole wheats, oat meal, fruits (i eat bananas, pears, mangos, melons and occasionly apples, raw vegetables especially spinach, fiber one cereal, eggs, brown rice, and no meat. I do cheat on occasion. I am thin and have a high metabolism so its difficult not to cheat. Plus with kids, I have to buy foods outside this diet and temptations begins. Last month I started wearing depend diapers or pads on long drives and outing sand it's really help with the anxiety of having to urinate and the pain the accompanies the bladder when full. Its great when driving because I simply relax and let go! They really work well and have never had any leakage. Put your pride in your pocket and give them a try!
Here are the meds and procedures that don't work. I've tried elavil twice before, but after 2 months I didn't feel any better and I had gained 15 lbs. Plus I was tired and had intense nightmares. With detrol, I feel like I have to go but nothing comes out and I get that crawling out of the skin feeling. Vesciare irritated my bladder way more than it helped. My bladder is so small and leatherly that hydros don't work either. I have been on elmiron 4 months and I don't feel any better. In fact, I think it irritates my bladder more than it helps, but I will stay on it another 2 months and see if things improve.
My symptoms are as follows:
-I urinate on average 50 times a day-10 at night
-every morning my bladder is extremely irritated and makes if difficult to get out of bed before 11:00 am.
-I usually have daily flares which feel like burning, stinging, pressure and when I urinate it is painful during and about 10 minutes after
-I usually have a constant urge to urinate
-at times I have deep aches in both legs, buttocks and bottom of my feet.
-during a flare, it is excruciating to walk and even to breath and I have to use my hand to push my bladder up and in an attempt to relieve the pain
-I get migraines usually 2 times a month. I can't do anything but lay in bed and usually vomit throughout the day
-due to pain medication, my memory and concentration has worsened. to combat this, I usually read 3 books a week and listen to book tapes in my car
-stress automatically creates bladder pain
-ibs constipation which puts added pressure on the bladder
-I can get very short when the pain is bad, but I become an angel on those moments when I feel good!
I've had interstim 4 years ago and it didn't work because the wires weren't' intersted correctly and/or they moved. I had a third surgery to remove the device, which left my with scar tissue and a 2 1/2 by 1/2 inch scar on my buttocks plust I had a bad infection after the second stage.
I am scheduled to have stage one interstim next tuesday but I am really tentative about it. I feel the pain is my biggest problem and this doesn't work with the pain. Plus my bladder is so small and beat up, I feel how much can this really work. I am praying about it but I am so confused. I've read all the interstim posts on this site and the majority seem to be negative. In addition, my Doctor hasn't had the time to sit and talk to me about it. Any advice?
Sorry for the long posting and thank you so much for taking the time to read it.
I have tried many medications and treatments and here are the ones that I feel work the best. I am currently on a fentanly patch , vicodin 30 per month, wellbutrin, zoloft, 50 mg trazedone, zanaflex, klonopin and pyridium as needed. Not sure or the exact ingredients but the DMSO with the garlic taste helps although the procedure itself is extremely painful. The childsize catheter put me in tears and I am in intense pain 8 hours after. I feel like I have to urinate but nothing comes out and the pain in my uretha is horrible. I also go to physical therapy to loosen my pelvic floor muscles. The therapist basically massages the muscles in the pelvic floor, my stomach and buttocks. I highly recommend it! Due to insurance I can't go every week, but do go usually 20-24 times a years. When I have really bad flares and it feels like an infection, antibiotics (amoxcifin?) always helps. When I have a relatively good day, I work work out. I usually will ride a recumbent stationary bike, lift weights and swim. I love to swim and feel that it is the one excercise that doesn't make my bladder bounce up and down. I may have some pain afterwards, but the endorphines and the feel of "normalcy" that follows a good workout are worth some pain. I try to follow the cancer diet which basically consist cancer diet which consist of purifeid water, lite soy milk, no refined sugar, whole wheats, oat meal, fruits (i eat bananas, pears, mangos, melons and occasionly apples, raw vegetables especially spinach, fiber one cereal, eggs, brown rice, and no meat. I do cheat on occasion. I am thin and have a high metabolism so its difficult not to cheat. Plus with kids, I have to buy foods outside this diet and temptations begins. Last month I started wearing depend diapers or pads on long drives and outing sand it's really help with the anxiety of having to urinate and the pain the accompanies the bladder when full. Its great when driving because I simply relax and let go! They really work well and have never had any leakage. Put your pride in your pocket and give them a try!
Here are the meds and procedures that don't work. I've tried elavil twice before, but after 2 months I didn't feel any better and I had gained 15 lbs. Plus I was tired and had intense nightmares. With detrol, I feel like I have to go but nothing comes out and I get that crawling out of the skin feeling. Vesciare irritated my bladder way more than it helped. My bladder is so small and leatherly that hydros don't work either. I have been on elmiron 4 months and I don't feel any better. In fact, I think it irritates my bladder more than it helps, but I will stay on it another 2 months and see if things improve.
My symptoms are as follows:
-I urinate on average 50 times a day-10 at night
-every morning my bladder is extremely irritated and makes if difficult to get out of bed before 11:00 am.
-I usually have daily flares which feel like burning, stinging, pressure and when I urinate it is painful during and about 10 minutes after
-I usually have a constant urge to urinate
-at times I have deep aches in both legs, buttocks and bottom of my feet.
-during a flare, it is excruciating to walk and even to breath and I have to use my hand to push my bladder up and in an attempt to relieve the pain
-I get migraines usually 2 times a month. I can't do anything but lay in bed and usually vomit throughout the day
-due to pain medication, my memory and concentration has worsened. to combat this, I usually read 3 books a week and listen to book tapes in my car
-stress automatically creates bladder pain
-ibs constipation which puts added pressure on the bladder
-I can get very short when the pain is bad, but I become an angel on those moments when I feel good!
I've had interstim 4 years ago and it didn't work because the wires weren't' intersted correctly and/or they moved. I had a third surgery to remove the device, which left my with scar tissue and a 2 1/2 by 1/2 inch scar on my buttocks plust I had a bad infection after the second stage.
I am scheduled to have stage one interstim next tuesday but I am really tentative about it. I feel the pain is my biggest problem and this doesn't work with the pain. Plus my bladder is so small and beat up, I feel how much can this really work. I am praying about it but I am so confused. I've read all the interstim posts on this site and the majority seem to be negative. In addition, my Doctor hasn't had the time to sit and talk to me about it. Any advice?
Sorry for the long posting and thank you so much for taking the time to read it.
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.
you to the ICN! I am also a member of AA since 1990. We have an AA/NA board here that is only active some of the time, but there are other people in recovery here at the ICN. 
tomorrow morning. Its with the new unit and remote. 
I am hoping this will be a place of support & care for you as you take the next steps to getting better again.
...I am so sorry to hear it didn't work. Sending hugs and prayers
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