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  #1  
Unread 06-05-2005, 09:16 AM
IC diagnosis

hyster surgery was in February of 05. After months of pain and continuous dr visits (they were rolling their eyes every time I went in) and being told everything looked normal, I drove to a dr 2 hours away for a second opinion. He said he's positive I have IC and is sending me to a urologist for confirmation. He said to alter my diet until the confirmation. For 3 glorious days since the 2nd opinion, I have felt wonderful. The pain is dull or not there. I can tell in 15 minutes after I eat if it agrees with me or not. I had sensations yesterday and was puzzled what could have caused it. I was chewing cinnamon gum! I'm eating bland foods and watching what I drink. I've had allergies all my life and appreciate what I've read on this website about IC. I even asked my former OB if it was possible I had IC. He asked why I would think that!
Sometimes it's very difficult for a dr to refer us to someone else. Mine didn't. He kept taking more tests and thank goodness for a son and daughter in law who are both specialized nurses to get me an appointment with a new dr!!
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  #2  
Unread 06-05-2005, 02:17 PM
IC diagnosis

check out ic-network.com and ichelp.org
  #3  
Unread 06-06-2005, 07:51 PM
possible ic me too!!

It was nice to read your post. I wish you the best of luck. I too am having left sided pain, and I am having painfull intercourse. Upon examination from OBGYN, She said "I can feel your bladder, but not opting to do surgery yet. In the mean time i'm hurting. please email me and give me some advice. (please use email button for privacy protection)
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  #4  
Unread 06-07-2005, 12:01 AM
IC pain

Hello all. Just wanted to let you both know that you should get another opinion if you suspect IC. Recently found out that I have had it since I was 10 yrs old. So for 20 yrs I suffered through what I thought was just UTI but kept being told the test was Neg. Finally found a dr who was worth their salt. Also if you have IC the diet really is bland and there are soooooooo many restrictions that I would have never thought of but it really does make a difference. I notice that when I eat even store bought tomatoes that I hurt when I pee. Who would have thought that something like that would hurt. I have a fold out list of all the can and cannot things that the dr sent home. When first diagnosed had weekly "rescue" treatments for calming down the bladder. I think that the only med they have is called elmiron. It really does work, but takes about 6 weeks to fully start to work.

Hoping that when my castle trip is over I will get more relief from IC also. Hope this helped even just a little. If you do think it is IC then by all means get a second or even thrid opinion. The test is really simple and takes only a few minutes once you get into the exam room. Let me know if you have any other ??? and I'll try to answer as best as I can.
  #5  
Unread 06-09-2005, 07:29 AM
IC diagnosis

Hi all,
I had a hysterectomy in April for uterine prolapse and went for my 5 week checkup and the doc suspected something was still wrong. He mentioned IC, but came right out and told me it was not his field and to go search the internet. It has been a solid week since I put myself on a restricted diet and let me tell you what a difference. I see a specialist in Aug. I've eliminated all tomato products, salty (such as chips or pretzels, even ham), anything with excessive preservatives like candy and I feel GREAT!! I've had to get creative, but it's so worth it. I'm still able to have things like a small amount of salad dressing (I use Italian made from Ken's) and I drop some green olives into my salad for a little kick. Veggie pizza with feta worked for me also!! Good luck!!! I'm so glad to meet someone else who is experiencing my symptoms!

Jaime
  #6  
Unread 06-09-2005, 07:32 AM
IC diagnosis

Ok, I know I just posted...Diana, what changes did the Elmiron make?? Did you also change your diet? I'm holding out for the meds til I see the specialist, but curiousity is getting me!! Thanks!!

Jaime
  #7  
Unread 06-09-2005, 09:07 PM
IC diagnosis

Hi. I have been on Elimron for 2 months now. I feel so much better. I still have a few moments when I don't feel great, but they are fewer than before. I am hoping that it has worked. Take care, I hope you can get some relief soon!
  #8  
Unread 06-09-2005, 09:08 PM
IC diagnosis

Elmiron helps with the symptoms of IC by helping to restore the bladder lining to a healthy state. IC sufferers have a raw bladder lining so when urine comes into contact with the irritated area it causes symptoms; similiar to putting salt on an open wound.
Elmiron is the only FDA approved medication for the treatment of IC. It generally takes atleast 6 months of continuous doaing (100mg capsule 3x/day) before the full effects are noticed. Sometimes it can closer to a year, so patience is necessary--thats asking ALOT from an IC sufferer. Elmiron is also usually taken along with other medications such as antispasmodics, antihistamines, antidepressants, and pain meds (not necessarily all at the same time). Alot of IC patients are also prescribed bladder installations to either do at home or at the Dr's office (usually patients discretion). Such installations include DMSO, RIMSO, and other "cocktails".
Hopefully this little bit of info helped. You can always check out ic-network.com and/or ic-help.org to find out more.
stay well
diana
  #9  
Unread 06-10-2005, 04:38 AM
IC diagnosis

Do you have to continue the restricted diet while on Elmiron?? I've cut out so much and if I could put a little back with meds, I'd be so happy!! Thanks for all your help!


Jaime
  #10  
Unread 06-10-2005, 02:13 PM
IC diagnosis

Hi Jaime
Sorry for leaving that bit of info out of my last post..
Its recommended that IC patients eliminate one or two foods/drinks out of their diet at a time for 1-2 weeks, then adding them back in one at a time; this helps that patient to see what does/does not affect the bladder. With Elmiron is it still suggested to stay on the diet, especially within the first 6 months of starting treatment. I personally have a hard time with the diet because it is SOOOOO bland. I already eliminate salt and caffeine from my diet due to HBP and PVC's so it really bothers me to have to eliminate even more. About the only things I find that really bother me is champagne and asparagus. I'm sure there are others however like I said, i have a hard time tracking what does/doesn't. I take PRELIEF tablets before eating anything that I feel would be an irritant and maybe thats why I really dont notice the triggers. Have you tried PRELIEF? If not, I would recommend you get some and keep it with you at all times. its taken immediately before meals to help reduce acid levels. Its basically just sodium bicarbonate in a table form--ie, baking soda. If you can stomach drinking baking soda mixed with water it would be the same.
hope this helped
any more questions just ask
stay well
diana
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