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I have heard @ the IC network but didn't get into it sooner 'cause I guess I was hoping that if I just quit thinking about it/ worked on a healthier lifestyle that things would get better! Now it's just nice to share info w/people who know what I am talking about!
I was 1st diagnosed with IC in 2007 after a myriad of health problems left me bedridden /lost nearly 30 pounds in 3 months (I wasn't too overweight to begin with). I looked anorexic & was even hospitalized. Some of other issues: Hashimoto's, kidney stones, polycystic renal disease, chronic inflammation in the stomach/ intestinal tract.
I was doing better in 2008 and 2009. Then in the summer of 2010 after a lot of stressful situations, IC went into full motion. I suffered with it for a couple mnths b4 going to dr trying to do natural things because I tend to have a lot of issues w/ many meds (esp because of stomach). But having to go to the bathroom every 40 min & the urgency was enough to make you feel like jumping out of your skin if anyone else knows what I am talking about so finally went to the dr. Life was getting hard to function normally.
So in Oct I had Elmiron put into the bladder to offset problems with the stomach & liver (like when orally taken). Everyone said I would feel much better. But for nearly 2 mnths I had a lot of pain in the urethra. It seems no one can figure out how I will react to anything (inc. myself!)
It seems like I am darned if I do anything and darned if I don't do anything. And like a moving target...
I have tried drinking marshmallow root tea/no help yet. In the summer I was drinking iced decaf mochas because of the stress and I thought I was doing myself a favor by making them decaf but since then I have figured we IC patients must get used 2 the idea of never drinking coffee esp with chocolate in it!
People have talked @ how healthy I look now. I just don't even get into it w/ them as I have been completely miserable and feel like NO one not even my husband understands. That's part of the reason I tried to avoid going to the dr but I was having a hard time managing the "every 40 minutes." You can hide pain but you can't hide going to the bathroom all the time!
Has anyone tried doing kegal exercises? How many per day & did they help? Since the last cysto I've had problems doing them.
I am just now starting to read the book "To Wake in Tears-Understanding Interstitial Cystitis" by Catherine M. ****** - written by an IC patient. It is good so far and I would recommend it to anyone.
(Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The books mentioned in this posting represent one patient's opinion and are not, that we are aware of, supported by any IC research studies.)
I was 1st diagnosed with IC in 2007 after a myriad of health problems left me bedridden /lost nearly 30 pounds in 3 months (I wasn't too overweight to begin with). I looked anorexic & was even hospitalized. Some of other issues: Hashimoto's, kidney stones, polycystic renal disease, chronic inflammation in the stomach/ intestinal tract.
I was doing better in 2008 and 2009. Then in the summer of 2010 after a lot of stressful situations, IC went into full motion. I suffered with it for a couple mnths b4 going to dr trying to do natural things because I tend to have a lot of issues w/ many meds (esp because of stomach). But having to go to the bathroom every 40 min & the urgency was enough to make you feel like jumping out of your skin if anyone else knows what I am talking about so finally went to the dr. Life was getting hard to function normally.
So in Oct I had Elmiron put into the bladder to offset problems with the stomach & liver (like when orally taken). Everyone said I would feel much better. But for nearly 2 mnths I had a lot of pain in the urethra. It seems no one can figure out how I will react to anything (inc. myself!)
It seems like I am darned if I do anything and darned if I don't do anything. And like a moving target...
I have tried drinking marshmallow root tea/no help yet. In the summer I was drinking iced decaf mochas because of the stress and I thought I was doing myself a favor by making them decaf but since then I have figured we IC patients must get used 2 the idea of never drinking coffee esp with chocolate in it!
People have talked @ how healthy I look now. I just don't even get into it w/ them as I have been completely miserable and feel like NO one not even my husband understands. That's part of the reason I tried to avoid going to the dr but I was having a hard time managing the "every 40 minutes." You can hide pain but you can't hide going to the bathroom all the time!
Has anyone tried doing kegal exercises? How many per day & did they help? Since the last cysto I've had problems doing them.
I am just now starting to read the book "To Wake in Tears-Understanding Interstitial Cystitis" by Catherine M. ****** - written by an IC patient. It is good so far and I would recommend it to anyone.
(Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The books mentioned in this posting represent one patient's opinion and are not, that we are aware of, supported by any IC research studies.)
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