Introduction

[Julia1975]

Hi Everyone! My name is Julia and I've recently been diagnosed with IC. Although I just got diagnosed I remember having severe symptoms during early childhood. I would get what I thought were bladder infections at least 5 times a month. I recently had a hysterectomy and a bladder lift, and it seems to have made everything worse. I'm a full time student and am very worried about staying on track with all the pain I've been in. My doctor has put me on Elmiron, detrol, and pyridum. Nothing has helped yet except the pyridum. I know it can take a while for the Elmiron to work though. I'm also worried about the hair loss I read about for Elmiron, but I will take my chances if it makes this pain go away. I can't seem to do anything but sit down and cry in pain. I have two children and a husband who has been great about this, he was the one who found this website, and has encouraged me to start a journal for my food intake to see what may be causing my flare ups. I learned along time ago that it hurt everytime I drank soda. I am trying to get to the computer to read as much as I can about IC, but it gets hard with the pain I've been in. I have found the material on this website to be very helpul, and I wanted to introduce myself and thank everyone who has posted to the message board, I have learned a great deal already.

Julia

[Portia17]

Julia

Please listen to me. YOU ARE RIGHT elmiron takes forever so in the meantime, if your doctor is not willing to give u pain meds, please go to pain managmenet

[Julia1975]

Mary,

What do you mean by pain management?

Julia

[Portia17]

Julia

They specialize in treating pain, like medicine percocet or morphine or and meds to block nerve signals and therapy

[hisjenn]

welcome Julia!

i know exactly what you are saying... i was just recently diagnosed (about 2 weeks ago) and i have been in severe pain since November... i don't have the urgency or frequency that most have, mine is the chronic, constant pain.

i have 2 children too, 10 and 7 and a wonderful husband that never complains about me being in bed all the time and just comes in from working 12-14 hours a day and picks up where he left off the night before... He's my rock and my strength and i can't ever begin to tell anyone how i would have never gotten thru this without him...

i noticed that you said that you were trying to get to the computer and do some reading, but that the pain hindered that... i just thought i would tell about what i do to be able to sit at the computer... i use either a therma pad to keep heat on my pelvic area and my heating pad on my back (where my pain is)... or even a hot water bottle and the heating pad... and i sit on 2 pillows... just regular bed pillows... for some reason, i can sit longer with them, i guess there isn't as much pressure on my bottom if i do... but it does help...

maybe it will help ease the pressure enough that you can stay on long enough to at least print out some of the wonderful articles on this site to read while laying in bed... i have a whole folder that is just waiting to be organized into a binder... i try to print as much as i can while sitting here, so that i can do my reading and really concentrate while i am laying down resting!

glad you posted and welcome!

[Annie2]

Hi Julia,

:welcome: to the ICN. So glad you found us! You will find this website is packed full of valuable information and the people here are so very supportive. Though we are not physicians and cannot give expert medical advice, we are glad to share our IC experiences, are here to help one another and will do our best to answer your questions.

Sounds like you have a very supportive hubby and that helps so much! Elmiron can take several months to be effective. In the meantime, there are other meds and treatments your doctor can Rx for you to try while you are waiting for the Elmiron to kick in. Only a very tiny percentage of patients experience hair loss from Elmiron and the hair grows right back when the med is stopped. Many of us have had great success with Elmiron.

Your husband is quite right to encourage you to begin the IC diet. For the majority of us, it is the best self-help tool we have! As you may know by now, you can find information on the diet in the Patient Handbook on this website. Do remember it may take awhile carefully following the IC diet before you feel the benefits of it, so give it time. It makes sense that, before IC Dx, most of us were eating lots of foods irritating to the bladder and it takes some time after beginning the diet for the bladder to calm down after all that irritation.

I am sorry you have IC but am glad you found us. Please feel free to ask any questions you may have and we will do our best to answer them.

:grouphug:
Annie

[Babs RN]

Welcome to the ICN--you've already been given great advice. The initial diagnosis period is the worst because of fear of the unknown, and the sheer nature of the illness--everyone has a different treatment plan. Unfortunately, alot is trial and error. The bright side is that that most people with IC find something that works for them and go on to lead their regular lives. I am Mom as well, and feel guilty that my daughter sees me in the pain I am in sometimes. One of the things I've learned though, is that on the bad days, we can play with her dolls, color, I can read her a book, we can draw and finger paint. I have come to feel comfortable in the fact that she won't remember the illness as much as the stories, art, and cuddling.(she is 4 btw).

Hugs and :welcome: ,
Barb :grouphug:

[vm]

:welcome: You've been given great advice - just wanted to welcome you to the boards! :) Your husband sounds AWESOME!!!!!

[Sarojini]

:welcome:

So glad your husband found us for you... what a gem :)

You've been given some great advice -- especially the part about discussing your pain with your doctor. You are right, Elmiron can take as long as 6-12 months to fully kick in, but there are things that can help in the shorter term. For example there are bladder instillation treatments and of course, pain medication as Portia pointed out. If you have checked out the Patient Handbook (http://www.ic-network.com/handbook ) then you will have seen the "Treatments" section and can read about these various things.

Anyway, I'm glad you found us and that you decided to post... support is very important in these first few months when you are trying to come to terms with this disease. :)