Just Diagnosed on Nov. 18, 2008

[dndsmommy]

I am 33 and very relived to finale know what is going on inside. But now that the diagnoses is finale here, I am scared to death. From everything I have read so far and things ppl have told me, this is a very scary road I have been forced to walk down. Everything I thought was good for me is now bad for me, things I never wanted to eat are now the things I have to eat. Most of all my coffee is being taken away from me :( Any ways a friend found this website for me and from all that I have read I am looking forward to getting to know everyone.

[dndsmommy]

Just wanted to add a few things I forgot to say in my first post. I went in for a what I thought exploratory to find out if I had Endametrosis(I think thats the right spelling) and to see how much scar tissue was build up on my uterus from past C-sections, and my wonderful dr. did the full check up. IC was something I had never even heard of until I went in for the week follow up. But the whole week follow surgury I was in so much pain I knew something was not right when I was told I could go back to my normal life the next day. Which was not possible since I could hardly walk or go to the bathroom with out feeling like someone was stabbing me with a knife. Once

When the Dr. told me I had IC I was confused at first but then became scared and worried all at once. He gave me a packed on Elmiron which talks a little about IC and about the meds but mostly about what I can not eat. The dr said this might work and might not work so I am prepared for a long road ahead of trying to figure out my treatment. What worries me the most is up until now I only had the urge to go to the bathroom all the time and alot of pain after sex, how will I know what my triggers are. Is this going to always be as painful as it is right now, or only during flare ups. I am so lost and confused with no one around me knowing or understanding what I am going thru. Sorry for the long post and sounding so confused and lost, but needed to get it off my chest.

[Briza]

Hi and welcome to ICN :)
Sorry for your diagnosis...it does often take a while to sink in so that you can better coordinate your plan of action. The diet becomes easier and less restrictive with time for most people, and most people find a med or treatment or combo of meds that makes their IC very tolerable and lead very normal lives. Yes, the beginning is the hardest as you are trying to figure out what are your food triggers and what meds help you the most with the fewest side effects.
Please take to heart that the majority of us do get to a much better place after we are diagnosed. It may take some months or a year to figure out what works best or you, but it can be done, as many, including myself, will testify to. So most likely with treating your bladder kindly with the right foods and meds, you WILL get to a the point where you can look back and say wow, I AM doing sooo much better than I was before.
In addition to ELmiron there are MANY meds to treat the various symptoms of IC. Yes it does take patience and sometimes a lot of trial and error before figuring out what works best for you. Elmiron works for some people but takes a very long time to start working; however, there are lots of meds that help to relieve the symptoms in the meantime that work MUCH more quickly than Elmiron. There are many here who take Elmiron with much success, and many who do not take it but take other meds that control their symptoms, along with following the diet, very well.
Stick around and read threads in posts in all of the forums here and you will learn a lot. ALso ask any questions you would like some advice on....this is a very active message board and even if we can't answer your questions, often we can at least point you in the right direction.
Try not to get discouraged as you read other's posts...many who post here are in the same position as you....just dxd and trying to find what works best for them and the best dr to treat them....many others who used to post don't anymore b/c they are now feeling better so don't need as much support and hopefully are out living happy, healthy, active lives. My symptoms started 5yrs ago...but I have been in remission since February :) But I still post to offer support based on my experiences, as do many others. Best wishes,Bri:)

[krisillis]

Hi dndsmommy!

Welcome to the boards. I know it can seem overwhelming at first but soon you'll be navigating through your new world with ease. Don't be too discouraged with what people post here. Briza is right. Alot of what people post is because we are flaring RIGHT NOW and we are feeling frustrated and in pain. When we feel good we have no need to come to the boards and post our frustrations, right? But thats what the boards are here for, to give support to each other and answer questions when we need them. So don't be afraid to ask or vent. We're here.

Christine

[ICNDonna]

I'm glad you found the IC Network. :welcome:

One thing I'd really like to say is that most ICers do find effective treatments and feel better. It took me a while to find my trigger foods, but I was diagnosed almost 34 years ago and not much thought had been given to a diet connection. It's much easier now because there are diet lists available. It helps me to think about the things I can have, rather than those I can't. And once you begin to feel better, you can begin to try some of the foods on the problem lists. I have even found I can have a cup of coffee in the morning if it's a low acid type.

And remember that for every individual posting here because they are in pain, there are literally hundreds out there with IC who are not posting because they feel good and are busy getting on with their lives.

Warm healing thoughts,
Donna

[statesboro]

I decided I would give you one more welcome now. I am a male, but I don't mind chiming in. None of us happen to be thankful we have got a medical condition with no known cause or cure, but it is still good to know what we have got.(and put a name to it)Yep! Oh! I think we can all relate to what you are going through now. Geez! I felt lost at first, too. I did not have a computer back then, but I would not have found as much information to begin with.(1997) Your friend did a good thing by finding the website. By the way, some of us that have had it a while still feel the need to come on and vent sometimes. It feels good to know the indiviuals reading your post will understand. I have had it over a decade, but my family members don't act concerned. I am not having such a great day, but I deal with other conditions as well. I have even done some coughing the past few days.(and sinus trouble)(hopefully nothing to start sweating over) Ok, then. Take care and be good.

[KarenAnne]

HI! I was diagnosed a month before you were. I am currently seeing my third urologist to get help w/ this condition. I'm finding out that most doctors, sadly most urologists, know litlle about IC, VV, & pelvic floor dysfunction. My diagnosing urologist told me I could eat & drink whatever! Plus it's frightening when you have a disease that changes from hour to hour. I've found out so much from this network & I hope it helps you too.:o)

[leelee88]

Hello and :welcome:

You already have gotten some great advice.. So if you need anything just ask! And please know you are not alone!!!

[aleet7]

Hi Dndsmommy!
I'm sorry that you have IC but I'm glad you found us! You should know that you can always come here for questions, encouragement or the need to rant. We will be here for you!

Hugs,
Aleet7

[traceann]

Hello and :welcome: to the ICN! I too am glad you found us, and I remember feeling exactly the way you do right now - but it can and does get better. I learned so much around here, and once I learned a few home remedies and ideas etc on dealing with IC - I was a much happier and more confident person. ;) It eventually will pretty normal to you and you'll deal with it without batting an eye - it will be second nature. You'll probably discover you can eat more things than you can't and find some "new" foods that you love! :)

Keep your chin up, and really - it's not as scary as you may think!!!! ;)

Hugs,
Tracey

[dndsmommy]

Thank you for the welcoming post and the support. After a few days of knowing what is wrong with me, and lots of reading up on IC I think i am doing a bit better mentally anyhow. I am glad to meet everyone and happy to know I am not alone in this. I look forward to chatting with everyone daily.

[c2miracle]

Welcome! You have found a wonderful support group! I was diagnosed earlier this year and I'm still figuring out my diet. I know exactly how you feel, so many questions and concerns. We are here for you, good days and bad. Just like Donna said, most of the ICers are going on with there life because they feel better and don't come to the boards as much. I have been dolng good, except for ice skating that I did this past weekend with my girls, so I'm paying for it now.:bonk: But even when I'm feeling good or bad I still try to hit the boards twice a week. Drink lots of WATER!!
I'm so happy you have found this great support group. Take Care and Think Positive! :smile tee

Colette :grouphug: