You are not alone! I am fighting multiple diseases as well and having one heck of an IC flare up right now. Life is hard and stressful enough without having to do it with a body in pain. Im hear for ya if you ever need to vent. We all have to from time to time. If you have a good doctor there are a lot of options of things to try and see what your body best responds to. I am on my 3rd set of bladder treatments. Each set seems to keep me going for a year or two before the pain is unbearable again and I have to do it all over again. I just had my 2nd treatment of this set on Thursday. I am so nervous its not going to work this time. I am in so much pain.
im sorry you had to learn about IC this way and while recovering from surgery. My best advice is just read all you can about different treatment options and ask you doctor about them. Hopefully they will get you feeling better soon. Good luck to you and your healing.

I am so sorry to hear you are going through all this suffering at such a young age. I have had alot of female problems and cysts removed from my ovaries. Never officially diagnosed with endometriosis, but I think we are heading that direction.

I was diagnosed with IC last November. It is so painful and not alwalys easy to deal with. I went through 8 DSMO treatments with the urologist and felt ok for a few months. Now here recently I am feeling bad again and going through treatments again. They hurt more this time. I am far from an expert on this, but I can tell you it is a life long battle. I was told now that with as bad as my bladder is I need to have a treatment at least once a month.

The installs are not real bad, but more uncomfortable and can hurt afterwards with the bladder spasms. Also sometimes you may experience bad kidney pain. I never test positive for a UTI, but swear I have one, cause that is what it feels like. There is also a diet to follow, which I thought sucked at first, but does truly help.

Be sure to ask your urologist what is best for you. Make sure you show up for all your installs. They really do help alot. Not long term relief, but make you feel better for awhile. Hope this helps a little. This website has wonderful support and information. Good luck and keep me post on what the urologist does tell you. Hugs

I'm sorry your family is not being more empathetic. I think it's hard for people who don't have IC to understand the emotional strain. Just remember you are probably never going to change your family, but you can change the way you respond to them. We are here to listen to you when you are struggling.

I have been on Elmiron for almost 3 months now and I have very few symptoms from IC. In fact I can eat most foods now, and have some wine every now and then.

I can tell you that the first few weeks after the surgery were the worst. Nothing seemed to make the pain go away. I am sure now that the biopsies increased the pain. I tried the installations and I ended up doubled over in pain. That is when my doc switched me to the Elmiron. The anti-spasmodic meds helped a lot too (the ones that turn your pee blue).

Hang in there.

You have the right to:
1.Act in a way that promotes dignity and self-respect.
2.Be treated with respect.
3.Make mistakes.
4.Do less than you are humanly capable of doing.
5.Change your mind.
6.Ask for what you want.
7.Take time to slow down and think before you act.
8.Ask for information.
9.Ask for help or assistance.
10.Feel good about yourself.
11.Disagree.
12.Not have to explain everything you do and think.
13.Say "no" and not feel guilty.
14.Ask why.
15.Be listened to and taken seriously when expressing your feelings.

Read and reread these rights so that you not only know them by heart, but so that they become part of your daily life.

Thank you so much to everyone for all of your support. It has really helped me feel a little bit better about all of this. I think I am just really scared bc I just don't know what to expect. I know I am doing the bladder washes, but that's all. Do docs usually put you on other meds along with that treatment? How often and for what length of time do you usually do the treatments? Do they actually help? I know it's different for everyone so I will prob get various answers, but if you guys can kinda give me a clue what to expect at my first few appts, it might help calm some of the anxiety I feel. I've been reading up on the IC network website about the diet and whatnot. It's all a little overwhelming at the moment. Seems like I can't eat anything. Again, thanks so much you guys for all of your support and advice. It really means so much to me right now. Hugs to all and I hope that you are having a wonderful day.

My regular physician gives me flexiral for the spasms and percocet. She has treated my pain for a while now, so we just leave it that way. I also suggest having AZO on hand or ask you urologist for pyridium for the bladder spasms and pain. It turns your urine bright orange, but helps even better than pain meds. They also tried my on Amytripline(sp) at night to help with pain and to sleep more without having to go to the bathroom. Unfortunately, I could not take that medication because it did not mix well with my Lexapro. Don't be afraid to as your Dr. questions and speak up if a medication is not working. Hang in there hon.

Hi I just joined the support group, but I have had ic for 4plus years now. I had the instillation in 2007 and was pain free until this April and I had a very bad flair. I started them again and I am feeling much better. I learned how to do them at home. They do cause a little discomfort but it's all worth it to stop the pain. When I have them in the dr's office they tend to hurt more after they finish. If you have a good dr. they shouldn't hurt that much. The whole procedure is pretty quick. I use the loidicine cream or the ABC cream to stop any burning feeling in that area. It works but sometimes it burn in the beginning too. Once you start the instill, your pain will hopefully be less. Ic can take alot out of you but, if you stick with the instills and meds you can have some good day. I hope you feel better soon just hang in there. Remember just like good things have to end at some point bad things take a rest too.

Hi again, I forget to add my 2 cents about family, sometimes when people can't see your medical problems(like ic ) they don't really understand, my family understands sometimes but, I am trying to educate them on what I can and can not do, especially when it comes to food. Food is the hardest part when you are in a flair, but prelief make thing so much better. When I use it I don't have to explain why I can't eat what everybody else is eating. It gets better as your bladder heasl and then you can eat some of the good stuff :)