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Interstitial Cystitis! Anyone else have this? Interstitial Cystitis! Anyone else have this?

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  #1  
Unread 04-19-2003, 11:23 AM
Interstitial Cystitis! Anyone else have this?

Hello all my sisters,
It has been a long time since I have been here but here I am again none the less. Let me start by thanking all of you for your prayers and support through my LAVH. Since then I have had two Lysis of Adhesion, both laproscopic. NOthing relieved the pain and it kept getting worse.
This past Monday, April 14 2003, two and a half years after the LAVH I had surgury again, this time by a specialist. This time I lost the ovaries so I am on my journey through the hormone jungle and believe me ........DH can attest to that!...lol.. The doc that did the surgury this time also cleared out alot of adhesions..again! He also found that I have Interstitial Cystitis! So, along with recovring from yet another surgury I am adjustting to a whole new diet and more meds than I can keep straight!
If any of you have this condition also please write......
Christie
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  #2  
Unread 04-19-2003, 05:14 PM
Interstitial Cystitis! Anyone else have this?

Hi {{{{Christie}}}}}} I'm so sorry it's been such a hard, long road for you since your LAVH

I do not have personal experience with Interstitial Cystitis, but I know that there are several Road Dwellers dealing with this conditon. I'm sure they'll be around soon.

I just wanted to send some special your way. Please let us know if the new diet is helping.

Don't forget that you're a once again and be sure to get lots of rest. Do drink as directed and walk for recovery.
  #3  
Unread 04-19-2003, 05:47 PM
(((((Christie)))))

Hello...

Yes, I've got IC too...(you sent me a PM also) -

It's definetly a disease that CAN take control of your life, and it's also one you can do everthing you can to manage it so it won't manage you! Sometimes, that doesn't work and there are proceedures the Uro can do to help ease the symptoms. It can be very debilatating...for me, I'm a lucky one. It gets to me when I eat too much of the wrong foods, drink coffee or get really stressed out (I internalize my stress).

What I'm doing to help the IC is staying away from the foods (of course they are my favs), increased my Yoga practice, exercising more, taking the Elmiron and now the Uro has me on Ditropan XL - I was on Detrol LA for over a year. I had results with it but Uro feels maybe a switch might help the bladder spasms. I'm willing to try anything.

I am in a PT program that specializes in women's issues (although men do suffer with IC also), I a ton of water each day...the less concentrated your urine is the less it irritates the ulcers on your bladder. Another product you can try - OTC is Prelief...it helps neutralize the urine also. Check with your Uro first before taking it though....ok?

Because my bladder spasms are still pretty intense, I thought I'd try a series of accupunture treatments, so I'm starting that on Tuesday. Keeping my fingers crossed.

I don't think there is any one type of treatment for IC, through trial and error you will learn what eases your symptoms. Unfortunately, it doesn't happen over night. So, try to be patient (it's hard I know) and get educated....there are several web-sites you can check out - I'm sorry I don't have them at my finger tips right now. Well, try this link....if you can't get to it from here....do a cut and paste...

http://www.ic-network.com/handbook/

I wish you the best....keep in touch

Lori
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  #4  
Unread 04-19-2003, 05:53 PM
thanks for responding

Lori,
Thanks so much, I am on Elmiron and Atatrax along with Estretest and Elavil and Percocet (from the surgury on Monday) The hardest thing for me is knowing what I can and cant eat. I didnt even have symptoms of IC until the surgury when my DOc got the "urge" to look for it. I dont have the ulcers but I do have the busted blood vessels and pinholes. My capacity is also down to 650 from the normal 1000. He said there is not one normal looking spot on my whole bladder and after viewing the video from the surgury I totally agree..lol...
Anyway what agravates you the most and what symtoms other than the urge and incontenance do you have?
Christie
  #5  
Unread 04-20-2003, 09:59 AM
Interstitial Cystitis! Anyone else have this?

Hi Christie !

I also have IC - like Lori said, it is a debilitating condition. I have had to start drinking water - something I didnt do before. The prelief works really well - you should give it a try. It basically neutralizes the acids in your food - you just sprinkle it on your food.
And of course pain meds help - there are some uro's who insist that they dont, but they DO. There is not a whole lot that I can add - Lori gave you some good advice.
Good luck - if there is anything else you need to know just give me a holler

Susan
  #7  
Unread 04-21-2003, 05:27 PM
I ALSO HAVE IC

Hi christie
I was also diagnosed with ic in feb 2003 and hadnt a clue what it was.It all started after my hyst last sept(2002)I am waiting to see a uro,as i am in constant pain.Thankyou for the info ladies on ic.I really hope you all get sorted out with it.Its nice to know of other people who have this condition. thankyou again!!! love vicky
  #8  
Unread 04-21-2003, 07:19 PM
Interstitial Cystitis! Anyone else have this?

Where are you all from? THanks again for all your support and caring letters.....It does help to know you are not alone.
christie
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