New guy here.

[infraredsvtf]

My name is Scott, I am 29 years old, and I am from Denmark, Wisconsin (just outside of Green Bay). I was diagnosed with IC about 3 weeks ago, after many different doctors, and many differnt opinions. I went through 2 weeks of rescue instillations, and things got better, but only until yesterday. I will be going back to the urologist tomorrow.

The past few weeks have been rough, which I understand is normal. I am used to eating and drinking whatever I want. The worst part is giving up beer, and spicy foods, which are my two favorite things. My wife is still trying to understand what is going on, and often thinks it is all in my head. I hope it all gets better, and I can live at least a semi-normal life.

Just wanted to introduce myself, and thank you all for the wealth of information here. My doctor recommended this site, and I am greatful for that.

Scott

[leelee88]

:hi:Scott and :welcome:to the ICN..

NO IC is not in your head it's in your bladder..lol Geesh I get so upset when people think that or tell me that. My primary told me that. Now I know longer have a primary..lol I guess people see that we look normal on the outside and cannot see how much we suffer on the inside.

Yeah I know the IC diet is no fun. But once you get your bladder calmed down you MIGHT be able to start adding back some things.

Also have you ask about Elmiron? I know it was helping me. Well just wanted to welcome you. If you need anything just ask..

[infraredsvtf]

Thanks for the welcome.

I have talked to my doctor about elmiron, but she thinks I do not need it at this point, and wants to see if I can keep things under control with just a change of diet. I will be going in again tomorrow, and I will ask about it again.

Scott

[LittleRed333]

Hi Scott,

Welcome...I too have recently been diagnosed with IC,but have lived with it for years prior....For myself, I really don`t mind the IC diet....Sometimes I do take Prelief if I think something may disagree with me and it really works to remove the acid from acidic foods.....You can buy it at Walgreens(it is an over-the-counter)...it costs about $9-$10 dollars for a bottle of 120 tablets....

I am from Wisconsin too..not far from you....There are quite a few others from Wisconsin as well on this forum....

It saddens me that there are actually doctors who think IC does not exist....If they only had to experience what we with IC go through on a daily basis, they would think differently....I feel very blessed to have a urologist who believes in IC .....

Had my first Hydro detension(stretching of the bladder)recently and for a few days I was basically symptom free of IC, but the symptoms have returned....But I try to take it one day at a time.....

My best to you Scott....

Bless, Sharon

[SharonA]

:welcome: to the ICN... :) I am very glad to hear that your doctor suggested that you find the ICN. I don't know what I would have done without this place. It was so helpful just to find people who knew what I was going through.

The Diet can be frustrating when you begin it, but it is so worth the effort.

If you feel comfortable doing this, how about having your wife come here and read some of the posts and the information available here. This could help her better understand what this is all about.

IC can be difficult, but it does not mean the end of the world. Once you find the right meds/treatments for you, it is very possible to live a more than semi-normal life. I for one have found this to be true. :)

[lan]

Hi Scott,
I was very scared when I was diagnosed because I thought that I might need to live the rest of my life in the same discomfort that I was feeling when I was diagnosed. But now, one year later, I actually feel much better. I still have a very low level of discomfort but I feel much better than when I was diagnosed. I will be keeping you in my thoughts and hoping that you will be feeling better soon. You can also ask your doctor about Elavil (Amytriptyline). It is the only medication that I take and it seems to have helped decrease my bladder discomfort. Linda

[LuvMaui]

It's not in our head :loco:.. It's in our bladder :rant:

It is difficult for family. When we are in pain, the people who love us are in pain too.

While I'm in a flare I keep track of everything I consume and do. By doing this I have been able to identify what helps and what hurts.

Things will get better :)

[theclownster]

Hi Scott! Welcome to the ICN! This is a wonderful place filled with lots of great people who can share their own experiences and offer support as you learn how to live with IC. I know when I was first diagnosed, this place helped me tremendously - the people here are great and very helpful. I'm glad your doctor referred you here. I hope that you are able to start feeling better soon and can get some relief from your most recent symptoms.

Take care,
Jennifer

[justice4j]

Hi Scott,
Welcome. This is a difficult disease for any of us to understand. Women for years have been told by Dr.s that things are "in your head." It's surprising that Dr.s are saying that to men too.

Well, as others have said, it is a BLADDER pain, not one in your head.

My best to you and your family. It's difficult for anyone who cares about you to see you hurt and not be able to do anything much about it.

[ICNDonna]

I'd just like to add another :welcome: to the IC Network.

The diet can be a challenge, but well worth the effort. I hope it will control your symptoms.

Sending healing thoughts,
Donna

[TaraTX]

Welcome to the Family! I hate that you have IC, but I'm glad that you've found this site. It has been a life saver for me. Giving up spicy foods and the bar were two of the major issues for me aswell. However, once you figure out that when you follow the rules, you feel better...it's not as bad as it sounds. There are days that you still want to trade in your body, but hopefully you learn quickly what your body needs and listen to it often. Good Luck!

[infraredsvtf]

Thanks again for the warm welcome.

I am really frustrated with the diet, but I am sure I will adjust. What makes it worse is that my wife is a top notch cook, but most things she likes to make don't agree with me. The good part is that I may actually lose a little weight, which I have been trying to do for years, but my willpower has not been strong enough.

I have been giving my wife things to read, trying to get her to understand. I am starting to think the whole idea scares her more than it does me. I think she just doesn't want to believe that there issomething wrong with me, since I have always been the one that never gets sick, or anything. I am sure we will be alright, just gonna take some time to sink in.

I am glad I have a doctor that listens to me. Some that I went to, just wanted me in and out as quick as possible. I am also seeing a physical therapist that is helping me rebuild my pelvic floor, since it has been abused and neglected for a long time. Ihave been living with my symptoms for about 1 1/2 years now, so it has taken its toll on everything.

Scott

[kuntrygurl78]

The diet is tough at first but it gets better. For me, just eliminating a handful of things has made all the difference in the world. I can eat just about everything. But like you, no beer:rant: Im a small town country girl from the middle of no where IL. I like my beer. I miss my beer. Maybe I should write a country song about missing my beer :loco:

Anywho..just wanted to say hi:hi:

[Julie Mck]

I'm new too. I just had a cysto to confirm IC and I'm trying to figure all of this out. I'm on Elmiron. Cysto w/ hydrodilation and chloripactin instillation was done last Thurs. Still burning some. I am now trying the diet and feeling some better. Any suggestions?

[SharonA]

Julie...:welcome: to the ICN. :)

I am so sorry you have been diagnosed with IC, but there is help and there is hope. There are so many meds/treatments that can help you.

Since the Diet is already starting to help, I suggest you stay on it. It can take several weeks to a few months to discover what foods/liquids cause your bladder problems. I know that sounds hard to do right now, but it is so worth the effort. Many people have found a lot of relief learning what their triggers are and taking these things out of their diets.

:) :) :) :) :)

[crkshnks79]

Hi Scott , :welcome:

Im a newbie too but have lived w intense pain and discomfort for yrs !! Im glad we both found this place , I think it helps to talk to people who know about this . Especially if you are told " Its all in your head " I too really do look forward to giving up my spicy , caffeinated , chocolate , tomato sauce , cigarette and whatever else diet !!! We can try to be strong together !! lol

[Agape]

Hi Scott! I know it must be hard being a guy and dealing with this. Seems things like this are expected of us women, but not guys. We are always dealing with some kind of problem in that area. You have to be brave!
I've been on Elmiron & Elavil for 8 months and now am doing so much better. I've even tried a beer or two and felt fine, so there is hope for you too. I stay away from caffeine, but a glass of wine or beer doesn't seem to bother my bladder. Guess the Elmiron has restored the bladder coating I was lacking with IC. Good luck!

[infraredsvtf]

It has been hard being a guy with IC. I did have a few doctors straight out laugh at me, thinking I was being over dramatic. The other part is the physical therapist I am seeing is in a womens clinic, co I get a few funny looks. I have been just trying to hold my head up, and not let any of the wierdness bother me.

[Agape]

I've heard that treatments for a man are more painful too. I hope your wife is understanding about this and all you are going through to be "normal" again. My husband just leaves me alone when I am in a flare and feeling lousy. He really doesn't know how to comfort me and doesn't truly understand the pain this causes. I'm not sure my urologist does either. Oh well, at least we have one another on this board. Hang in there.