coming to accept...I have IC

[kbreedlove ICN Member Find all posts View Profile Close kbreedlove]

I was diagnosed with IC about two years ago. For the first year my urologist allowed me to try alternative measures like acupuncture and chinese herbs for my symptoms. But then last Christmas my IC was bad enough that we reevaluated our plan. I started the Elmiron and urelle combined with bladder washes and uro jets as needed for flares/pain.

The past year I have been in LOTS of flares and had several infections. I have also been diagnosed with vestubulitis vulvadina which is kicking my butt right now. I think I have been thinking that sooner or later I would just kick this and be normal again. But I am finally realizing that I have IC and I have to accept it. It is hard because I dont know anyone who suffers with this condition and I feel alone in it. I am so glad to have found the ICN! I have somewhere to read and see that I am not alone. Thanks for being here!

I just started reading the Better Bladder Book...good stuff!

[sgoodrow ICN Member Find all posts View Profile Close sgoodrow]

hI kbreedlove,

I was never officially diagnosed with IC, but after ruling out most all other bladder syndromes my urologist decided I probebly have IC. Mine started in the spring of 2008, I was in nursing school at the time. I started elmiron in 2009 and it only started really providing relief in 2010 (last spring) mostly the burning pain I get has subsided, but it does still come and go. I am just starting cystoprotek as well.

I understand and sympathize with you about finally accepting having IC and I totally agree that having this condition is very lonely. I don't know anyone personally who has IC so I never have anyone to talk to to about it, Except of course for people at this great site. I wish you pain-free days ahead!

take care, stephanie

[aleet7 ICN Member Find all posts View Profile Close aleet7]

Hi K! Welcome to the board! It's pretty tough coming to terms with the fact that you have an incurable disease. It's also tough going through it by yourself(not knowing anyone else that suffers from this). I don't know anyone personally that shares this disease either. But the light at the end of the tunnel is that this board is a safe haven for us! We have somewhere we can go and write others that know exactly how we feel...this is truly a blessing! I'm sorry that we are meeting under these circumstances...but I'm glad that you found us! Please don't be a stranger...feel free to ask me anything! You now have a place to rant, celebrate, or keep us posted on how you are feeling. Again...welcome!!!!

Best Wishes,
Aleet7

[kbreedlove ICN Member Find all posts View Profile Close kbreedlove]

Thank you for the encouragement! I am wiped out from the past two weeks of no sleep and the chronic pain. It literally made my cry to read your posts because for the first time someone really knows and understands what I am saying. Friends and family try there best to support but cannot identify. I often feel like a broken record trying to explain how I feel. I get even more exhausted trying to listen to their "advise" on things I should try or do.

BUT you know and it feels comforting!

[aleet7 ICN Member Find all posts View Profile Close aleet7]

I think our families mean well...but they have no idea how frustrating it is to keep telling them that we cannot drink cranberry juice or it's not and overactive bladder etc... I've given up on trying to explain exactly what I'm going through to them. You do know that they care but it's really hard for them to understand that we have a disease that most people have never heard of.

I've had symptoms for years but only had my diagnosis 3 years ago. This board has helped me find out what actually works for me(using a heating pad...the IC diet, warm baths etc...) and I'm so grateful to have found this site! I hope that you find exactly what you need here...friendship and tips on how to improve your health! Be encouraged...it does get better!

Aleet7

[debbiekdt ICN Member Find all posts View Profile Close debbiekdt]

I have question about the urelle. Did the pill change the way it looks since you started it? I have been on it for 2 years and it changed shaped and color about 4 to 6 months ago. Since then it doesn't work as well for me. Just wondered if anyone else had this problem.

[faithtou ICN Member Find all posts View Profile Close faithtou]

Acceptance

I am so sorry that anyone has to deal with this disease, but I want to thank those of you have been brave enough to share your stories. I like many others, have found great comfort in realizing that there is a place to come to meet people who understand the physical and emotional issues of living with IC. Tonight, I needed a place to be able to say, without hurting someone in my family, that I am broken and sad. I know that I am grieving for my professional and social losses as well as many aspects of the life that I lived before IC. In saying that, I also know that tomorrow I will feel better and stronger. I don't know anyone personally that has IC, so if you are a 50+ female and ever need to chat or are interested in a prayer partner please let me know.

I wish each of you success in finding the right treatments that control your symptoms and allow you to lead a fulfilled life.

[bob04951 ICN Member Find all posts View Profile Close bob04951]

Hi KB, hope you are having a "good" day. Sorry about your DX. For some it is a shock and quite frightening, for some it is actually a relief to finally know they are not nuts. Stick with the diet, it does help relieve symptoms. You will have your journey just as everyone here has, but all have walked the same road, and you will never be alone.

It is tough explaining this thing to family and friends. Everyone thinks you are just one day going to be all better. Just drink your cranberry juice and it will be all gone, um, NOT. One way is to say that your bladder has become allergic to many things, and if you eat or drink the wrong thing it is like pouring acid on a wound. Sometimes that helps them wrap their heads around it better. It's like any chronic disease, you can get relief, but it will always be there lurking. Bob's family and friends still don't "get it" but after 2 years they are starting to better understand that this thing is just not going to vanish one day (altho a remission would be nice!) Wish you luck on your road to having some good days, they will come. Hang in there. Jill, wife of Bob

[kbreedlove ICN Member Find all posts View Profile Close kbreedlove]

I can totally relate to what you are saying! I was in the same place last night. I was feeling sad and needed to just cry and allow myself to feel sad about it all. BUT today I know it is a new day and I have choices to make. I can stay in bed (which I have done the last several days) or I can fight the good fight!

I am so thankful I have friends to walk this out with! Today I feel hope....I am so anxious to hear how people get into remission! I just started taking the Prelief and need to take a better look at some of the foods I am eating. I am really liking the Better Bladder Book! I also would like to hear what you are doing during flares to minimize your symptoms. My doctor suggests massages, warm epson salt baths and rest. Any other ideas??

Kelly