Just found out I have IC a few days ago...

[blondiecat]

Hi everyone,
I just found out I have IC 4 days ago after 8 years and several doctors that told me that I needed a shrink because it's all in my head :rolleyes: I finally found a Dr. that understands what I am going through :bow: Dr. G is the best as far as I'm concerned. I don't have the A typical symptoms of IC..as in the urgency and frequency to go.

My problem is I couldn't go as I had a bladder neck obstruction. After surgery for that and I am still in a lot of pain Dr. G finally did a biopsy on me a week or so ago. This is when I found out I have IC. When he told me that I didn't have cancer I was really glad but I burst into tears when he told me I have IC. I guess it was that someone finally found that I do have a problem after 8 years of suffering. It was a relief to put a name to what I am dealing with. At least now I know that I'm not crazy as a lot of the doctors I have seen in the past has suggested.
Anywho I just wanted to say hello to everyone.

[Katrina]

:welcome: :welcome: :welcome: I am sorry you have IC....extra sorry you went through so many years of suffering without a diagnosis....I went through 10 yrs...but I told myself I was crazzy...luckily no doctor said that to me. I am so very sorry they did that.

Anyway....I am thrilled you found us! :woohoo: Having IC can be hard but is so much easier with this great supportive group. It has helped me with so many things ....I don't know what I did before it :hmm:

I want to recommend this http://www.ic-network.com/handbook/ link! It has info on treatments, self help, dealing with the different ways IC affects us and so much more. It is a great place to start.

If there is anything we or I can do for you please let us...or me know.
:grouphug: :grouphug: :grouphug: :grouphug:

[blondiecat]

Thank you for the welcome and the website link:) I am trying to understand everything that has happened to me over the years. I want to be able to let go of the anger I have felt for the doctors that told me that "It's all in my head". My Dr. has told me that I have a severe case of IC.

I have started to take the medications Elmiron and Elavil, so far I haven't seen a difference but he also told me that it would take a while for these meds to work. He also has prescribed Lorcet Plus for the intense pain. Thankfully I have a great boss who isn't growling at me all the time for being sick.

[sleepyangel30]

Nope it's not all in your head. The first uro I went to acted as if it was all in my head and then he gave me some samples and he goes since your so nice I will give you some free samples of detrol la and he told me. sorry Im running out of tricks for you. I cried infront of him and then he left. He was only treating me for over active bladder which is something I did not have. Well I let him know how nice of a woman I was. I fired him lol and found a good uro and thats when I found out I had IC. I had IC since oct 03. Grrrr I wish I could transfer my pain to these uneducated doctors so they will see what its like to have IC. By the way hang in there. Take care God bless you!

[ICNDonna]

:welcome:

I think my worst time with IC was before diagnosis. Once I knew what was wrong I was able to begin dealing with it. At the time I was diagnosed (almost 30 years ago) there hadn't been given any thought to a diet connection. I figured out on my own that certain foods and drinks were causing me pain. I do think it's important to get on an IC diet --- you'll find the diet in the Patient Handbook.

Sending warm welcoming hugs,
Donna

[sleepyangel30]

Yep Donna is right :)

[blondiecat]

:) it's so nice to know that I'm not alone with this :woohoo: I can't tell you how many times I have cried because I have felt so alone.

[sleepyangel30]

It's ok to cry. I really do feel your pain. I'am flaring right now. That is something I have not had in months and its back Grrrrrr. It's not as bad as it used to be thank god. I wish I was near by. I would give you a great big hug and do something silly to cheer you up. I'm a clown I can make you laugh in person hehe.

[edc]

Hi - I just joined this IC support site yesterday, and it has been amazing - I'm so glad you found it to!
I was very frustrated with many of my doctors. I honestly had one doctor tell me my "UTIs" were due to intercourse, and I should "keep a tylenol between my knees." As good as it is to have a diagnosis, it makes you mad that you suffered such pain for so long, when you really didn't have to.
What dose of Elavil are you on? I found it to work 5-6 days after I started it. I was initially on 12.5 mg, but it wasn't until I bumped it up to 25 mg that I started feeling a difference. Now, I am symptom-free, unless I try to sneak in a glass of wine. Diet is really important. Caffeine and alcohol are big no-no's for me. I miss my red wine with nice dinners, and coffee/diet coke for daily pick-me-ups. But, it's not worth the pain.
Welcome, and I hope you find some comfort here!
Liz

[~*~Christine~*~]

Hi blondiecat, welcome to the board :hi:
I can't imagine having to go without a diagnoses for 8 years! ekkk
*hugs*

[blondiecat]

Hi - I just joined this IC support site yesterday, and it has been amazing - I'm so glad you found it to!
I was very frustrated with many of my doctors. I honestly had one doctor tell me my "UTIs" were due to intercourse, and I should "keep a tylenol between my knees." As good as it is to have a diagnosis, it makes you mad that you suffered such pain for so long, when you really didn't have to.
What dose of Elavil are you on? I found it to work 5-6 days after I started it. I was initially on 12.5 mg, but it wasn't until I bumped it up to 25 mg that I started feeling a difference. Now, I am symptom-free, unless I try to sneak in a glass of wine. Diet is really important. Caffeine and alcohol are big no-no's for me. I miss my red wine with nice dinners, and coffee/diet coke for daily pick-me-ups. But, it's not worth the pain.
Welcome, and I hope you find some comfort here!
Liz

:hi: Liz my Doc has started me on 50mg of Elavil. I hope that I find some relief soon:( I hate having this problem, there have been times over the past 8 years that I seriously just wanted to end it all.

I have been married almost 2 years and it's affecting my relationship with hubby :headbang: I can't seem to make him understand just how much this hurts me. I know he is frusterated that I'm always in pain. Hopefully I can get him to read up on this condition so he will understand how I feel.

[kelly McC]

Just wanted to say hi and welcome..
Huggs,
Kelly

[blondiecat]

Just wanted to say hi and welcome..
Huggs,
Kelly
hi:hi: Kelly thanks for the welcome. It's so nice to know that I'm not alone in my pain.

[edc]

Blondiecat - I have some really good articles on IC. I will list a few, and hopefully you can pull them up online and read them with your husband. I am in graduate school for nursing, so I did a little research paper on the condition. Here are the articles:

1) Newsome, G. (2003). Interstitial Cystitis. Journal of the Americal Academy of Nurse Practitioners, vol. 15, pg. 64-71.
2) Webster, D. (1996). Sex, Lies, and Stereotypes: Women and Interstitial Cystitis, vol. 33, pg 197-204.
3) Bauman, N. (1998). Depression Found in 3/4 of IC Patients. Urology Times, vol. 26, pg. 26-27.
4) Kellogg-Spadt, S., Albaugh, J. A. (2002). Intimacy and Bladder Pain: Helping Women Reclaim Sexuality. Urologic Nursing, vol. 22, pg. 355-356.

I found them to be helpful - knowledge is power in this condition. The more your learn, the more YOU are in control of your health.
Depression is common in IC. I believe the key is finding a doctor who is supportive, and understands all the different aspects of IC. The other key is finding a good support network, which your hubby should be in. It is a hard condition to understand, because people can't SEE why we're in pain. Read the literature with him.
Hope this helps!
Liz :kiss:

[steph4308]

Hi Blondiecat! I went through that whole thing in the early 80s with the doctors too. Finally, my friend saw a bit on IC on t.v. and told me about it. The bad thing was she couldn't remember the name of the disease!!!! Fortunately I moved to B'ham, AL and could do some research at the UAB hospital library and found out what I had. Then I had to convince my uro of the same. Like you, I was so glad it wasn't cancer. This board has been a lifesaver, as I'm sure you'll find out. Welcome! Steph

[Dixiefireball]

:hi: and :welcome: to the ICN family.
sending you hugs and prayers
Rhonda

[Sarojini]

Just wanted to add my :welcome: to everyone else's :)

I'm glad you finally found out what was wrong... that's the first step in starting to feel better! I hope the meds begin to work for you soon :grouphug:

[SharonA]

:hi: :welcome:

I am also on Elavil 25gm at bedtime. It has given me back my life. I hope it works as well for you as it did for me. :)

[blondiecat]

Hi everyone :hi: This website is awesome. There is so much information here that will help me to understand just what I'm up against. My Doc has explained this all to me but I still don't understand everything. I guess now I am getting used to having a name for this instead of "Am I really crazy?". Thanks so much for the warm welcome.

[Zanni2]

Regarding foods affecting the bladder, I found that a dietary supplement called "Prelief," which helps to reduce acids in foods, helps me to be able to tolerate common "forbidden" foods. Prelief is a life saver! :woohoo: I can't praise it enough. If it wasn't for Prelief, I wouldn't be able to eat hardly anything without negative effects on my bladder.

Good luck in your treatment plan,

Zanni2 :angel:

[Joanne]

Hi,

I'm sorry to hear that it took so long for you to get an acurate diagnosis for IC.
It seems that I hear that all too often! Even I had a very hard time finding the right doctor. It gives a sense of relief to finally hear what you are dealing with, so you can learn more and feel as though you have some power over what you have. Glad to see that you found this site, it is wonderful and it changed my life. Take Care of yourself. Joanne :)

[mayray518]

I am on 5 mg of elavil (started out at 50 mg for a year). It is the only thing that has worked for me and I tried everything. i have now been pain free for 5 years. There is something out there for you. You have been thru the worst part. I was not diagnosed for two years and told i was crazy, reacting to stress, etc. We are here to help you.

[blondiecat]

Actually, IC stands for "Impossibly Crazy" - I hate to break it to you. We are all crazy people who have made up a weird disease for fun. Yeah, right!!! I think since there are so few IC'ers in the population, and so little is really known about IC, that even Dr's were kind of at a loss as to figure out what to do with us!! And I think that since the Dr's who don't know about IC can't treat us (because they don't know how), they probably think we MUST be crazy since they, as wise doctors, can't figure it out!!! Luckily word about IC is getting out there, and now SO many treatments are available!!! Hopefully w. all the diff. treatments you can try, and all of US here to help you out, you'll be feeling much better soon!!! :bouncy: Best of luck chiquita!! Dianne

:lmao: I hear ya. Yeah I'm as nuts as they come....nuts from pain, nuts from more pain and even more pain. I hope that I can find releif soon. I've been eating Locert Plus like candy it seems for the past few days:( Just takes the edge off. I missed several days of work last week too. I have so much work piled up on my desk I may never see the wood again.

[Iris]

Hi Cathi, and welcome, know the situation, going nuts is the word for it, I know it took five months for me to get to the diagnosis of IC and know exactly where you are coming from, pain and more pain. Hope you can get some relief soon, and ease your pain. This is a great place to be, lots of us learning to live with IC, which is definitely the pits, but always here for each other. I found it just after I was diagnosed and have been so pleased to have a wonderful support system in place, it has really helped me tremendously. Hope we can do the same for you and please keep us posted as to how you are doing, once again a welcome hug Iris. :hi: :welcome: :grouphug: :flower:

[AnnaBanana]

Hi~ I'm new to IC also as I was diagnosed following abdominal surgery 12 days ago. I totally know what you mean about feeling relieved about finally being diagnosed. I have a rare form of arthritis which is an autoimmune disorder and struggled for a long time before I was diagnosed. It is amazing how quickly they label us as "crazy" when they can't easily see something "wrong".

Good luck to you! Hope you find the support and answers you need here!

Anna :)