I'm new...and terrified!

[ericau]

Hey everyone! Just wanted to introduce myself. I am 26 and live in Ohio. I was diagnosed back in Nov 08 with IC but was in denial and told conflicting diagnosis's by different doctors. I went to another doc this past Tuesday who will confirm IC with a cysto with hydro next week. He is 99% sure I have it though based on my symptoms.

I am willing to accept the diagnosis but am have a VERY hard time dealing with it. I have been in pain for 6 months and am SO sick of it.

I started the IC diet on Tuesday but haven't had much relief yet. Is this normal or should I be feeling relief by now. I also started Elmiron and Aloe Vera gelcaps for inflammation. I take Celexa because of the depression that set in due to the pain.

I am married and have a 6 month old little boy. Life is so hard right now but I'm taking it a day at a time. My husband is frustrated but trying his hardest to be patient with me.

I will post my full story on the "My story..." page...it's long and complicated. Anyways, I am gald to find this site!:smile tee

[leelee88]

Hello and :welcome:

Denial is very normal!! I think that is with ANY disease! But in time as you learn how to control your symptoms things do get easier..

As far as the diet this takes TIME.. You have to realize your bladder did not get like this over night.. And it is NOT going to repair itself that quickly either.. But in time you can get to feeling better, with the diet and the right medicines or combo of medicine..And another thing, It is very important to listen to your body! If you find something that triggers a flare then try to avoid it.

So hang in there, and please do keep us posted..

[BT2008]

Hey Erica,

I am very sorry to hear about your diagnosis, but welcome to the IC Network! We are all here--some of us both day and night--looking for and offering the support that all IC sufferers need and deserve!

Like leelee said: The diet takes TIME! You must learn to experiment with it to see what helps or not. It is not what you eat/drink that caused your IC! But, what you eat/drink can certainly aggravate it!! Plus, if you are in the middle of a huge flare, you might not be able to tell a difference at all right now.

Look for immediate help for your pain from your urologist, and when you manage to get your pain somewhat under control--and you will eventually find the meds that will help you do so--then work with the diet and test each item and create your own IC specific diet plan.

My husband is frustrated but trying his hardest to be patient with me. See if he is willing to spend a few hours reading some of the posts on this forum to better inform him of the disease you are now living with, and to learn a little bit about some of us who share your misery, as well as all the new limitations and obstacles of life. In the beginning my hubby searched this forum and read quite a few threads (and scoured the web in general), and he now has a good working knowledge of the painful disease that I struggle with everyday.

We must all remember that IC is not just happening to us. Even though we definitely have the worst end of the deal :( this disease is affecting our spouses, family and friends as well. Our lives are drastically changed by this disease, so inevitably our relationships are going to have to change some as well. And this is more so the case for our spouses than the others. IC can be and usually is a very long journey, so do whatever you need to do to insure that you and your husband travel that journey together. You will need him, he will need you, and your child will need you both!

Since IC is a relatively unknown disease, many friends, family members, co-workers and bosses will not understand at all! I can't count the times I was told to "just drink some cranberry juice!" YOWEE-OUCH!!!! just thinking about it!!

But the more caring ones will understand much better if you do your part to inform them about IC as much as you can. Print off articles for them to read, invite them to read the treads on our forum as well, and encourage them to google IC. Knowledge is Power for all sufferers and for all those who are directly affected and touched by this disease.

Take care, and post a new thread if there is anything in specific that we can chime in on!

~Beth

[Julie B]

Welcome.....you are in one of the best supportive places you can find for IC.

One of the best pieces of advice I got in the beginning was similar to what Beth said...we have to go through a cycle of grief being diagnosed with a chronic disease and so do our family members. What my goal became was to adjust to a "new normal," a phrase that comes out of cancer survivor lingo. I think it suits what happens to many people who have a chronic disease.

Hang in there, communicate well with your physician......and ask as many questions as you can here.

Gentle understanding hugs.....

Julie

[Sue10]

A year ago I was in the exact same place as you are. I want to give you the same hope that many members on this forum gave me. Everyone told me that with the right treatment I could live a relatively normal life and feel good again. One member said that she felt so good that on some days she forgot she had this disease. I didn't think it was possible because I had so much pain EVERYDAY no matter what I tried.
After about 6 months on Elmiron, sticking to the diet, and making some lifestyle modifications I started to feel better. Now, a year later, I have good days and bad days but MORE GOOD DAYS! It happened to me and it could happen to you as well!

Just hang in there. There is hope that you will be in a better place with the right treatment. Keep us posted as to how your doing.

[jenjen05]

Hi. I'm newly diagnosed as well. I am also having a very hard time excepting it. I am still asking to be treated for E.Coli and ureaplasma because I really don't want to believe I have IC- though I know I do. If you ever wanna talk, feel free to PM me or if you have Skype I'm jennifer.jericho

[daisyj3]

Just wanted to say hi and I can relate to you, I have not been officially diagnosed yet but in my heart I know the diagnosis is coming soon. My baby is 5 1/2 months old. It makes me sad and depressed that these symptoms are getting in the way of me spending quality time with my baby..since it seems to be constantly on my mind when I am not feeling well. It's also rough having to try to get sleep when you can with a baby and not being able to sleep from the IC. Hopefully we will be able to feel better soon so we can enjoy our babies more.

[bdelong]

My name is Brooke
I am from Canada, and for the past FIVE VERY LONG YEARS!!! I have been in and out of the hospital,told i was crazy,that the pain was all in my head and sent away!!I just recently FINALLY!! Had an appointment with a speacalist.They confrimed I had I.C. so I had my cysto done this Tuesday wich was absolutly horrible!,and now I have started Elmiron.So I definatly see the frustration!!!Oh my most people look at me like I have ten heads!!! They just do not under stand why this would be such a big deal!My husband has been amazing threw it all,and although I don't think even he truly understands,He is just finally glad I have some answers and some help! So you hang in there!!!I find from just knowing that I am not th eonly one has helped me so so much!!!!

[ericau]

Hey...how wour experience with the cysto. I am scheduled for one this Thursday and am soo terrified! I have heard so many bad things but I want a definate diagnosis and my doc says I might benefit from one. I had a cysto back in January but it wasn't with a hydro...it wasnt too bad to recover from but I still had all of the pain after.

[KarenAnne]

I had my cysto/hydro & bladder biopsy under IV anesthesia. It was only uncomfortable after because I developed a UTI. So keep an eye out for that, but you should be fine.

Welcome, you will find alot of info & support here, as did I. Please write & tell us how your procedure goes, & especially about your precious little baby. Six months is such a great age. Hang in there.

[bdelong]

I wont lie to you it didn't feel nice for me.But keep in mind I hadn't had treatment ever and my bladder was so inflammed the doctor couldn't believe it!You know what helped me,I took in a magazine and as i layed there I stared at this picture of a beautiful island in the carribean and it took my mind off of it.you will be fine,just think the sooner you have this done the quicker you are on your way to recovery!