Interstitial Cystitis Member Introductions


#1

Please take a moment to introduce yourself to the community. Everyone here has something to share about Interstitial Cystitis. For the discussion boards, we ask that you keep your full name and location private.


#2

I have IC found out several years ago when I went for Endometriosis surgery.


#3

Life is about health, family and friends, but sometimes its hard to keep focus on what is most important


#6

Hi! My name is Sandy and I was diagnosed with I.C. 3 1/2 years ago. I also have CFS and FM. When I was first diagnosed I couldn’t even walk through the grocery store because the pain and pressure were so severe in my lower abdomen and vaginal area. I have since improved to where I no longer urinate up to 60 times a day.

I have been in a flare for the past few days. The best treatment for me for the I.C. was going to the Fibro & Fatigue Centers. They focus on CFS, FM and hormone problems, but there is something in the IV therapy that has extremely helped my bladder.

I have my own website, http://www.fightingfatigue.org, and my own forum, http://www.fightingfatigue.org/forum where I offer support to people with these illnesses.

I hope to share and exchange info on here with others as well.


#7

This illness has changed my life, unlike some of the other illnesses I have it is not as well known, it is very disabling and yet doctors do not know how to treat it, it is one that needs strong advocates.


#8

I have been living with IC for many years now. How long is not for sure as I suffered for many years with symptoms before finally finding a doctor who diagnosed it. I am a wife, mother, and grandmother who lives with this horrible, painful disease daily. Some times are worse than others. I am looking to connect with people who understand and maybe help my family connect with others as well to help them understand my disease.


#9

Hello My name is Margie Stephans. I have IC. I was first diagnosed with it Mar. 05. This diease can really take your life. I just like to learn from others how they deal with this day in and day out. I want to connect with others that is dealing with ic. I want to say hi to others that are in CarePlace. Margie Stephans


#10

in have interstitial cystitis
lupus
and fibromyalgia osteoporisis
I suffer terribly with Interstitial cystitis the most.
i have tried everything and no let up of symptoms. i have a very severe case of interstitial cystitis


#11

I was recently diagnosed with IC and have been trying different medications or cocktails as my doctor says to see what will work. Right now I am on Elmiron, Vesicare, Detrol la, and Atarax (spelling is probably wrong). I still get up a lot at night so I don’t know what will work. Hopefully I can find some answers here.

Jen


#12

I have interstitial cystitis and am interested in learning more about it and alternative ways of dealing with it.


#13

Hello, Mu name is Kim Pryor
I am from Missouri I have IC
I have had it for 5 yrs now plus
I have had 2 implanted interstim one not working one doe’s.
accualy I just had the new interstim implanted May 25, 2007


#14

I have IC and I also work for an urologist. I love to learn more every chance I get to not only help myself but aid in teaching others.


#15

I’m interested in Kim and the things she deals with. I’m not to well informed on interstitial cystits, but willing to learn.


#16

Because it not only affects me but other members of my family,and I have other friends I have met over the years,who are like me,have it,and other diseases that usually go along with it,and if it was"nt for my friends that I have found on my computer,things would be much worse.My name is Shirley,I live in Louisiana,


#17

I’m Karen and 51 years old. I found out last year I have Interstitial Cystitis, it has been very hard year for me. I still have many problems figuring out the foods and what is safe to eat. I live in a small town in North Florida and I’m just hanging in there taking each day at a time.


#18

I was diagnosed with IC over a year ago, It has been difficult to learn to live with but everyday I get a little stronger.


#19

I was diagnosed about 6 years ago, and I’m always interested to hear what helps other people. It’s nice to know I’m not the only one!


#20

I have had I.C. for 2 years now and was a prisoner in my home and in my bed since laying down seemed to hurt less. I tried all the treatments out there after going to 8 differrent Dr. I now have had the Interstim implanted for 6 months now and it took away my bad pelvic pain and constant frequency. I still have to watch what I eat since some foods irritate my bladder wall. I have been on Elmiron for 8 months now and it seems to be helping but I am losing my hair. It was not too bad at first but now it is really getting thin. I just try and take one day at a time with this awful disease. There needs to be more research and awareness regarding this I.C.


#21

I have problems with bladder pressure and frequency, could
be intersticial cystitis, doctors are unsure. At times, I feel exetremely weak. I want to connect with others who have similar problems and find out what has helped them.


#22

Hi all!
I was diagnosed with IC 6 months ago and have found the required diet difficult to follow. My diagnosis was done via cystoscopy which made my symtoms much worse than they were previously. Has anyone else experienced this? I would like to hear other people’s experience with this disease and possibly get some tips on how to best cope with it.