Recently Diagnosed with IC

[Dolly]

Hi!

I was diagnosed with IC on June 6th. I had had symptons off & on since Dec. I had blood in my urine and had to pee a lot and had severe back pain. My gyno diagnosed me with Adenomyosis (similiar to endometrioysis) in Jan. and contributed all the symptons to that. I had a uteral ablation done on Mar. 31 and all hell broke loose after that. I found myself peeing 40 times a day and up every hour or more at night. I went back to my family doc who gave me antibiotics. I took those for a week and nothing got better. I called him back and he wanted to call me in another round of antibiotics. At that point I went back to my gynocologist thinking maybe the symptons had something to do with my uterus. She examined me and said that everything was fine with my uterus and then she said, " There is a condition called Interstitial Cystitis." At which point I responded "My mom has that."

I had a PST performed a few days later, tested positive on that and started treatment with Heparin instillations, Elmiron, Elavil, Prosed, Prelief, Vicodan, Xanax, Claritan, and oh yeah! Did I mention the kitchen sink? I then went to a urogynecologist that my gyno recommended. I had a cystoscopy with hydrodistention done on July 27th at which time I was presented with some lovely pictures of my bladder showing pinpoint bleeders on it.

I have been angry, sad, in pain, in panic, in denial, in a narcotic stupor and a whole realm of other emotions for the last 2 1/2 months. I feel blessed that because of my wonderful gynocologist I was diagnosed so quickly compared to others.

I knew that my mother had this, she had even said on Xmas day when I went through a role of toilet paper at her house and complained of back pain, "I hope you don't have what I have." We were never told it was heriditary. I also feel blessed that because of my diagnosis my mother learned for the first time about Elmiron and was able for the first time since her diagnosis in "92" to get some relief and some treatment options.

Okay! So here I am! Please excuse my spelling and long wind. I have visited this sight since my diagnoses but could not muster the strength before now to post. To be honest with you some of the stuff I've read on here scares me to death! I think "Oh, my God! I not having those symptons yet, but will I?" No one seems to be able to give you very many guarantees with this stuff. I have an appointment on september 15 with an Internal medicine doc to try to figure out the rest. Like why I have ran a fever of 99.4 since at least January, why my feet and ankles and hands are so swollen, and why I seem to loose my balance so easily, just to name a few.

Any way! Here I am.

[Imustpee]

:welcome: ...I am glad you found us... :)

[Dolly]

Thank you for your welcome. Any words of advice would be appreciated. Like for instance how do you quit crying?

[Imustpee]

I wish I had some magic words to make it all better...I have been fighting this monster all my life, since I was 6 and I will be 45 next month..great support and caring people here...

[SharonA]

:welcome: to the ICN...

I can not answer your questions, but I can tell you that the emotions that you wrote about as pretty normal when you first learn that you have IC. I think that I can safely say that all of us had them in one order or another. It's not like learning that you have a sore throat and all you have to do is gargle with this stuff and it will go away. I am sure you are doubly concerned because your mom has it, also. I do not know if IC is hereditary. I do know that there have been a few over the years that I have been coming to this site who tell of relative also having IC.

Please don't let the stories you read on this site scare you. Just because someone is having problems does not mean that you will have the same ones. We all have learned that the only thing we all have in common is that we have IC. It presents itself in many ways with many different symptoms. We are not all suffering at the same degree. I, for one am able to live a pretty normal life. Yes, there are days that my bladder decides to act up, but that does not happen everyday. It took awhile, but I was able to find the right treatments/meds that help me. Most of us do find the right combination of treatments/meds that enable us to go about our daily lives.

Take the time and look at the information available on this site. Go to:www.ic-network.com/handbook (http://) You will find a wealth of information. Also check out the IC Diet at: www.ic-network.com/handbook/diethtl#list (http://) Many of us have found relief by learning what foods and drinks can cause us problems. The more you learn about this disease, the better you will feel emotionally. I am fond of saying that "knowledge is power". :)

I am so glad you decided to post so we can get to know you. Hopefully, we can be of help to you and to your mother. :) We are here to lend you support and many soft shoulders to lean on. :grouphug:

[Babs RN]

Dolly,
Welcome! Sorry we had to meet this way, but these message boards and the website itself(that contains the Patient Handbook) are awesome. Not to mention the support we get from uplifting one another in good times and the more challenging times.

Hugs :grouphug: and :welcome: ,
Barb

[ICNDonna]

I'm also glad you found us. Try not to worry about getting worse. My IC was diagnosed thirty years ago and, if anything, I am better than I was at diagnosis. I have accepted IC emotionally and have learned which treatment options work and which foods and drinks I need to avoid. I actually do very well most of the time.

Sending warm healing thoughts,
Donna

[Dolly]

Thank you all for your support and suggestions. I am on the diet. I am practically living off of water and potatoes. I am afraid to eat something that is going to make this worse. This has been very hard for me since I love to cook. I am from Louisiana (now in Texas) and love cooking all sorts of dishes with a lot of spices. I also love to have a glass of wine with my meals. I always started my mornings with a cup of green tea and honey sitting on my patio. Now I sit there with my water bottle.

Have any of you gotten to the point that you can eventually eat and drink some of the things you loved without it causing you problems? I take Prelief with every meal.
Any suggestions on food options? I got some of the teas off the web site but have been afraid to try them.

[patricia1]

Hi Dolly and :welcome: . You will find a wealth of info on here and alot of supportive people. I have had IC for 9 yrs, but for me it took 5 to get a diagnoses. So hopeful now with you medicine regimen you will start to feel somewhat normal agian. I am sure you know with the Elmiron it can take anywhere from 6mths to a year for it to work. And yes there will be times when you can drink or eat something in moderation that you might not be able to right now. Once you find the right treatment plan you might be able to go into to remissions at times.

Also about the fever you run. Sometimes people with IC tend to run low grade fevers all the time. For me I run at times around 99.4, and I know of others on here that do that also.

And nice to see you were from Lousiana that is where I live. Again :welcome:

[vm]

Okay! So here I am! Please excuse my spelling and long wind. I have visited this sight since my diagnoses but could not muster the strength before now to post. To be honest with you some of the stuff I've read on here scares me to death! I think "Oh, my God! I not having those symptons yet, but will I?"

Awwww, I so felt that way, too. :kissing: I would come to the site, read posts and feel so good about becoming more and more informed about this disease, its treatment, etc. and then 2 seconds later I'd be bawling my head off b/c I was so scared I'd never get better and was sure all the bad things that happened to other people would happen to me. After all, I never thought I'd get something as bad as IC - so why wouldn't I also get an awful case of it? :(

I talked and talked and talked to people about it. I had a couple of friends I e-mailed about it ad-nauseum. I talked to my mom and some of my extended family about it. The fear, grief, anger, confusion, frustration, etc.

I posted here to get support. One of the biggest things that helped was to remember just what Donna said: that MOST people with IC DO get to a place where they feel better. You must believe it when we say that the majority of people who post at the ICN do so b/c they are searching for answers or support b/c their bladders still hurt. The people who feel good don't post here generally b/c they are out living life and b/c they feel good - they don't need the support. Please believe that and repeat it like a mantra when you get scared. ;)

I, like you, was so scared I'd never feel better. Once I was diagnosed, it took several months, but I did get to feeling better. I have a combination of 5 meds that keep my symptoms at bay. 95% of the time, or more often, I feel normal now. I can eat whatever I want now - and I was very diet sensitive to start.

So, yes, there IS hope. Always remember that. :)

[Dolly]

:) Nice to me you Patricia! Can you make a roux? :)

[Dolly]

VM,

That makes me feel a lot better. Thank you!

[traceann]

Hi Dolly and :welcome: You have been given super advice already, I really don't have much to add, lol.

I remember how scared I was too in the beginning, wow. I even had my very first series of panic attacks that very first bad flare that got me my diagnosis! (hopefully they were my last too!! :biglaugh: ) I was diagnosed November of 2004. That's when I started the Elmiron too. I had all kinds of fears, going on, it was bad. But as I have learned how to deal with symptoms, etc, now, it's no sweat. I don't get as frightened anymore when bladder decides to be cranky, that right there helps. The more frightened I got in the beginning, the vicious cycle started -- the fear/pain/more fear/more pain etc. Now, I know it will pass... at some point, lmao!

I too take a combo of meds that keep me feeling really good. I have the Elmiron, Ditropan, and hydroxyzine. The longer I have been on them, the more and more my food tolerances have been increasing like, VM. I too was seriously diet sensitive back in the beginning, oh my. But now, I am finding that to be the case less and less, thanks to my combo -- and the diet. The diet started it all, that was one of the first things I did. I am so glad I did it too, it's been a bit of a challlenge, but well worth it. Now, it's second nature to me, lol.

Well, once again, nice to meet you and hope to see you around the boards!!!

[Julie B]

Hi Dolly!

I am much better now than I was when I was diagnosed. I can also eat a lot more foods now than I could then. The big things for me were getting the right medications (atarax is the cornerstone of my therapy), following a semi-restricted diet, stress reduction techniques.............and letting myself go through the grief (pity-party) now and then..............but always aiming for acceptance. Coming here can help you do that..........seeing other people who are making it.............my suggestion is at least one day a week read only the success stories.............and leave all the other painful stories alone. You need to create a sense of hope in yourself again.........this place does it for me and I hope it can do it for you........

Gentle welcoming hugs.........Julie B

[cass2376]

Hello Dolly,
:welcome: I'm glad you found us. I know I was happy when I found this site, and that was not too long ago. I was dx with IC in May 2004 but like so many others, I too had it for a long time, about 10yrs. You have been given so much great advice already so the only thing I could say to you is hang in there, you are not alone, and God is always there for you no matter what!! :) It's been a hit and miss road for me, I'm still looking for my perfect treatment/meds. but I am a little better than last year when I was first diagnosised. So ANY improvement big or small, I thank God for. Things will get better for you too, and this website has helped me personally so much I know it will help you too. The Elmiron does take some time to help but it has helped me a lot with some of my symntoms so hang in there. Sounds like you have some great docs that are taking care of you. You are lucky with that alone! Just follow your docs orders and try to take it easy when your bladder tells you to and you will be O.K. We are all here for you and each other (does that not feel great), so if you need anything, write back or PM me anytime!! I hope you are doing well and take care! :)
God Bless you and Welcome!!, Cassandra :angel:

[Dolly]

To all of you: A BIG OL TEXAS THANK YOU! :) I am so grateful to you all for your kind words and advice. I am so glad I finally decided to post here. I think it took a little while for the acceptance to sink in for me. I spent the first couple of months thinking, "what if there wrong? What if this isn't IC?" I am now to the point that I know it is and I am ready to do what ever it takes to beat this. I have always been very competitive and refuse to do anything I can't win at. ;) lol. I know that posting here was one of the best things I could have done so far!

Thank you all and please keep the support coming! I have angels in my office and a friend of mine did a caligraphy of the Alabama song "Angels Among Us" for me that is framed and hangs on the wall. I truly believe that there are angels among us and I know I just found a whole bunch of them! :angel:

Pam

[traceann]

You are very welcome Pam! I did the same thing, I lurked around for about a month before I joined and posted, wow, am I ever glad I did!!!! What a difference this place has made in my life! ;)

Hugs!

[Annie2]

I just want to add another welcome to this ICN Family. I was a "lurker", too. It took me many months before I even registered here. This website is a terrific support for all of us.

You have received a lot of good advice. When you start to feel overwhelmed, do remember that the vast majority of ICers do find effective treatment and are too busy leading their active lives to post here anymore. It took a little while to find the combo of meds that works for me, but I did find it and now life is much better again! There are lots of success stories here. Oh, and when you do find the meds and/or treatments that work for you, please remember to come back here and post your success story to give hope to others! I hope that success will come quickly for you!