nanllyn
07-18-2007, 12:23 AM
Hello everyone. I'm excited to find a group of people that understand and will chat with me about IC.
I am sorry that anyone that has this is going through it as it is awful.
I'm 41 years old and had a total hysterectomy 12 years ago so I'm currently on hormone replacement. I was just diagnosed with IC about 8 weeks ago. It started with a severe urinary tract infection that
sent me to the ER. I had had little symptoms until all of a sudden I started bleeding while going to the bathroom and then the pain just got so severe, I couldn't bear it. It was awful. Both my family dr and gyn/ob dr said to go the the ER. I was diagnosed with a severe UTI and given antibiotics. I've only had a UTI 3 times in my life, once 12 years ago and now twice in 6 weeks. Well I did get a little bit better after the ER visit. I still hurt quite a bit and used the restroom every 15-30 minutes but the sharp shooting pains in the groin had subsided for the most part. When after 2 weeks had gone by and I wasn't much better, my family doc sent me to see a uriologist. The uriologist did a cystoscope and stated my bladder had shrunk quite a bit and hardened. He also stated that I had ulcers and extremely severe patches of irritation in my bladder. He started me on a regimine of Elmiron, but told me it could be 6 months to a year before I really get to feeling better with this. Although I do
feel a little better, I still have pain and burning sensations. As long as I rest and don't move around a great deal, no bending, no pressure on the abdomen area at all then it is more of a burning
feeling and dull aching feeling. But as soon as I get up, I get a really stong ache, strong burning sensation and usually sharp shooting pains. It is in the abdomen area, crease where my leg meets my torso, sometimes even my back and sometimes it starts in the groin area occasionally.
I've been off work for 12 weeks now because of the pain, I'm sleeping ALOT, going to the bathroom every 15-30 minutes and for some reason my blood pressure has been extremely low (90/60). During the night when I'm not drinking much I can go 1 1/2-2 hours without going to the bathroom but when it hits me I have to go right then.
I'm looking for tips and or stories of people that have healed and been functional with this. I really want to get my life back and get back to work. Sleeping and staying in my house for 12 weeks is no fun at all.
I do a lot of natural herbs, minerals and vitimins. [But my dr told me today to stop all those until we can pinpoint what is making my condition worse. It just so happens that I have avoided caffiene, citric acid and synthetic sugars for many years now as it always hurt my stomach(at least I thought it was my stomach at the time).
I've have been on Elmiron for almost 2 months now and they just added a dose of Pyridium Plus for the burning and bladder spasms. I've been on the Pyridium for almost a week now and it doesn't seem to have help much, maybe a little. They also gave me Norco for the pain. I don't like taking pain meds but it helps with the pain. Unfortunately taking all these meds makes me wobbly and drunk like. So I don't leave the house except for dr appointments, as I sleep almost round the clock (of course waking often to go to the rest room) and can't navigate very well as I stumble around.
I was just turned down for short term disability from my employer with them stating that I should have been better and back to work in 2 weeks time. I told them they obviously didn't understand this condition and how long it takes for the meds to work. So now I have the stress of financial difficulties as well. I'm going to appeal and I'm looking for info regarding how dibilitating this condition can be to help my case. Any suggestions where I can find some information would be greatly appreciated.
Well I have rambled on long enough. It is just good to find a group of people that understand what I'm going through and will listen. I really appreciate it.
Any suggestions on websites, books and suggestions from you personally would be much appreciated.
Take care and god bless,
Nancy
I am sorry that anyone that has this is going through it as it is awful.
I'm 41 years old and had a total hysterectomy 12 years ago so I'm currently on hormone replacement. I was just diagnosed with IC about 8 weeks ago. It started with a severe urinary tract infection that
sent me to the ER. I had had little symptoms until all of a sudden I started bleeding while going to the bathroom and then the pain just got so severe, I couldn't bear it. It was awful. Both my family dr and gyn/ob dr said to go the the ER. I was diagnosed with a severe UTI and given antibiotics. I've only had a UTI 3 times in my life, once 12 years ago and now twice in 6 weeks. Well I did get a little bit better after the ER visit. I still hurt quite a bit and used the restroom every 15-30 minutes but the sharp shooting pains in the groin had subsided for the most part. When after 2 weeks had gone by and I wasn't much better, my family doc sent me to see a uriologist. The uriologist did a cystoscope and stated my bladder had shrunk quite a bit and hardened. He also stated that I had ulcers and extremely severe patches of irritation in my bladder. He started me on a regimine of Elmiron, but told me it could be 6 months to a year before I really get to feeling better with this. Although I do
feel a little better, I still have pain and burning sensations. As long as I rest and don't move around a great deal, no bending, no pressure on the abdomen area at all then it is more of a burning
feeling and dull aching feeling. But as soon as I get up, I get a really stong ache, strong burning sensation and usually sharp shooting pains. It is in the abdomen area, crease where my leg meets my torso, sometimes even my back and sometimes it starts in the groin area occasionally.
I've been off work for 12 weeks now because of the pain, I'm sleeping ALOT, going to the bathroom every 15-30 minutes and for some reason my blood pressure has been extremely low (90/60). During the night when I'm not drinking much I can go 1 1/2-2 hours without going to the bathroom but when it hits me I have to go right then.
I'm looking for tips and or stories of people that have healed and been functional with this. I really want to get my life back and get back to work. Sleeping and staying in my house for 12 weeks is no fun at all.
I do a lot of natural herbs, minerals and vitimins. [But my dr told me today to stop all those until we can pinpoint what is making my condition worse. It just so happens that I have avoided caffiene, citric acid and synthetic sugars for many years now as it always hurt my stomach(at least I thought it was my stomach at the time).
I've have been on Elmiron for almost 2 months now and they just added a dose of Pyridium Plus for the burning and bladder spasms. I've been on the Pyridium for almost a week now and it doesn't seem to have help much, maybe a little. They also gave me Norco for the pain. I don't like taking pain meds but it helps with the pain. Unfortunately taking all these meds makes me wobbly and drunk like. So I don't leave the house except for dr appointments, as I sleep almost round the clock (of course waking often to go to the rest room) and can't navigate very well as I stumble around.
I was just turned down for short term disability from my employer with them stating that I should have been better and back to work in 2 weeks time. I told them they obviously didn't understand this condition and how long it takes for the meds to work. So now I have the stress of financial difficulties as well. I'm going to appeal and I'm looking for info regarding how dibilitating this condition can be to help my case. Any suggestions where I can find some information would be greatly appreciated.
Well I have rambled on long enough. It is just good to find a group of people that understand what I'm going through and will listen. I really appreciate it.
Any suggestions on websites, books and suggestions from you personally would be much appreciated.
Take care and god bless,
Nancy