Discovering IC

[mdawn]

hello

I just registered for this message board because you all seem really supportive and caring.

I was diagnosed with IC when I was 17, but have had it since about 15. I am now 21 and just learning about it.

In the last two years my IC has really kicked me in the butt. I go to the bathroom about 15 times a day, and that doesn't include waking up at night to go. Also, my sex life with my live in boyfriend has suffered greatly and I feel so guilty. How can he understand this condition when I am just starting to?

I first tried taking Elmiron orally, and that didn't work, so I've been on DMSO for the past six months and that hasn't helped either. Next week my doctor is starting me on DMSO and Heparin and we'll try that for once a week for four weeks. If that doesn't help he'll send me to the city to see a urologist and take it from there.

Learning about IC over these past few months has been very straining emotionally and mentally. It seems every time I start reading about it I start crying. It is just really scary for me and all I can think about is how it is ruining my daily life.

I can't do anything now without scoping out a bathroom. I cant even go on a two hour canoe trip, or on a hike without having to go to the bathroom so bad. It has severely restricted my activities. I suppose I am just feeling down right now.

Well, thats all i have for now. I look forward to reading more of your posts with your great advice and support for eachother.

[Dixiefireball]

welcome to the icn family i'm sorry you are having so much trouble right now.
i do the dmso heparin and marcaine at home one to three times a day and it has helped me so much it has been a god sent to me i hope they help you also.
if not i hope you find a treatment soon to help you. if you need us let us know remember we care about you and want to try to help you the best we can we are no doctors but we try to help.
sending you hugs and prayers
Rhonda

[ICNDonna]

I'm glad you found the IC Network. You'll find a wealth of information and support here. If you haven't already found it, I suggest you go to http://www.ic-network.com./handbook/ and read the information in our Patient Handbook. It has some excellent information about diet, which you should begin if you haven't already. Diet can make a huge difference.

If you're a hiker, you might consider purchasing some "travel Johns" --- they are available on this site and work great when you just gotta go and there's no restroom available. I carry one when we walk on the beach --- very easy to use.

There are many, many treatment options for IC; hopefully soon you will find the one that works best for you.

Sending healing thoughts,
Donna

[Sarojini]

Hi there... just wanted to add my welcome to the ICN :grouphug:

Jen

[kelly McC]

Hi and WELCOME:grouphug:
hope your new treatment will help!
Kelly

[dyno]

I wanted to add my welcome. I was about your age when I got and was diagnosed with IC. I am now almost 46. It is an adjustment and when you find a treatment that is working for you that should help. We all have had the days you are having. Hang in there it will get better.:)

[Katrina]

WELCOME TO THE ICN FAMILY!!!! Glad to have you:D

[vm]

Welcome, mdawn! :) This is a very supportive board and I hope we see you around often.

[SharonA]

Hello mdawn and welcome...

Learning about IC can be very stressful. I remember when I began reading material on this disease. I thought my life was over and nothing would be the same ever again. I was so sad and depressed.

I was dxd in August 2001. It took me awhile but, I have my life back. I live a pretty normal life, now. There are even days when I forget I have IC. That can be your story, also, once you find the treatments that work for you as I did for me. All is not lost. :)

[gtg728]

Just wanted to say welcome mdawn. This support system we have here at the message board is a God send. Hopefully you will find something soon that will relieve some of the symptoms.:grouphug:

[Donna L]

Hi mdawm, Just wanted to add my welcome along with everone else. We have all felt what you are feeling, some more recently than others:( I went through a time where all I did was cry when I thought the life I knew was over.) I'ts only been 3 months since I was diagnosed, but I've been scopeing out bathrooms for years. At least now my family and friends understand. I hope your new treatment works........:grouphug:.......Donna L

[arcticfox]

Hi mdawn

Glad to have you on our message boards. I have lived here for the last 12 years and in the past two years have recently started to have road trips out of town. I now know every rest stop and bush cover from here to the border of Alberta! I live in Yellowknife, Northwest Territories Canada. I can even tell you how many turns in the road until we get there! :lmao: :lmao: :lmao: Anyways, the point is, I have found a way to adjust to living my life with IC. Yes, some days are really hard and I don't want to get out of bed, but I do and I carry on. You will find little tricks and stuff to get you through too. We all have. We are learning about our IC and how to cope everyday. This message board helps us because we can talk to each other and get support from one another.

I hope to see you again on the message board.

Arcticfox :welcome:

[ICchell]

Hello:hi: and good luck with your treatments!
Michelle

[Karen G]

Hi Mdawn,
I'm newly diagnosed and 34 yrs old, but think I've had this since I'm about 25. I know what you mean about scoping out bathrooms wherever you go. I canh't tell you how many times I've tried to take my kids to a movie, and during a 2 hour movie, I had to get them both up and to the bathroom with me like 4 times. How unfair is that to them, they miss most of the movie because they are 7 and 12 and don't feel safe leaving them in the theatre alone while I go to the bathroom. Isn't it sad we have to live like this, I also know how you feel about your sex life and thank god my husband of 13 years understands and that it's out in the open now, before I knew what was wrong I just tried to avoid it, like making believe I was already asleep when he came into bed. It's comforting to know I'm not alone in all of this.

Karen