Recentley Diagnosed and Scared

[Pink26]

Hello,
Well where do I begin I cannot actually believe I am writing my first post on here.Back in May I got my first UTI ever and apparentley it was a severe one I took some antibiotics and it went away then all of a sudden the symptoms came back but no bacteria doctors kept putting me on more and more antibiotics ending up being on 6 diff kinds total and then vesiacare and a gel for overactive bladder.I was not getting better needless to say and here it was July.I ended up finding this site and I have watched this site nearley everyday before being diagnosed and prayed I wouldnt have IC but even though in the back of my mind I had pretty much already diagnosed myself after seeing 8 doctors that could not figure out what was wrong with me.One doc said I am 90% sure you dont have IC and another one thought I had OAB ,Only after the 9th doctor and seeing a new gyno was I finally diagnosed with IC and PFD from 3 test (potassium test which put me into my first flare ever,uro dynamics that said I can only hold 2 ounces of fluid and a cysto that showed my bladder was irritated) I was happy knowing there was a name to this monster but very sad that this monster of a disease was going to ruin my life or at least change it forever.....I am so scared I starting taking elmiron twicw a day about a week ago and hoping it works.Im in almost constant pain of some kind and feel like Im in a flare 24/7 with constant urges that drive me insane, seems like everday the symptoms are a little different. I have been takeing urelle and darvocet for pain which dosent help much and a muscle relaxer to help with PFD spasms,I start PT for that as well soon.I am following the IC diet to the T and actually adding in the anti- inflammatory diet after doing research that it would make sense since my bladder is very inflammed maybe that could help.It seems like from what I have read there are alot more sick people than ones getting better and I just think I cant live my life like this Im so depressed:( Please someone give me some hope!!!It has to get better right?!:help:

[jjengar]

Hi, I was diagnosed this past Janurary and believe me, I understand how you feel. I took Elmiron 3 times/day, Urelle 4 times/day, Elavil at night, and Xanax just to get through the day! After 3 months I started to feel 'normal' again, so I slowly weaned myself off everything. Then I stupidly ate and drank anything and everything I could get my hands on and thought that maybe it wasn't IC after all. Wrong! I recently had the cysto & hydro and they confirmed IC, and I've been in a very bad flare since the end of July. I'm back on everything now, but I really do believe that if I had stayed on my meds and not gone too crazy on the food and drink, I would've been OK. I tell you all this to let you know that it really can get better, you just have to wait a while for everything to settle down. I think that a lot of people who do get better don't visit these boards because they move on and live their lives, so a lot of what's on here doesn't sound so great, but there are some positive things- I've read that it rarely progresses, and if we can control it with diet, well at least that's something! There's a definite possibility that once your meds kick in and everything settles down, you'll feel better more often than not. Some people haven't had symptoms for 20 + years! I can tell you, I thought I'd never feel good again, but for those three or 4 months, I was doing great- I just should have stayed on the meds. Whenever I'm feeling alienated and depressed, I try to remind myself that it could be way way worse- it's chronic, but it's NOT terminal, right?! Hang in there!
Jen:angel:

[VickiB]

:welcome: to the ICN, Pink!


It seems like from what I have read there are alot more sick people than ones getting better
I know it seems that way! What I have seen here at the ICN is that as people improve they post less & less. And once people have the symptoms under control -or even in remission, they have a tendency to disappear from the boards all-together. This really gives a skewed impression of life after an IC diagnosis.

Hang in there and give the diet & Elmiron time to work. It's not unusual that it takes some time (unfortuately!). Most do get better!

Vicki

[Pink26]

Thanks I appreciate that everyday is truley a struggle patience is not my strong point thats for sure but I do pray for the day that I feel better,I could even deal with it a little better if it wasnt for this darn 24/7 urgency any ideas? urelle isnt helping much!I am very greatful for this site makes you feel better that others are going through the same thing when no one else understands...I just have to try to stay positive even though its very hard once again thanks for your message :)

[Pink26]

Thanks vicki I appreciate it!

[Goldfinch]

You will feel better! You are doing everything right in the meantime: lots of research, trying the diet (and the diet can take time too) and following your doc's instructions. As noted above, Elmiron can take two months or more than six to really become effective, so give it a chance. When I started on Elmiron I too was very reliant on Urelle daily and used xanax at night to help me sleep. Between having to get up to pee and overall anxiety I had very disturbed sleep. And I kept to a very strict diet.

As you probably know, Elmiron does not work for everyone, but if it does work for you, you may find you are able to wean yourself off all the other drugs. I no longer take anything except Elmiron for my IC. I am still careful about my diet, but I can eat a very good variety of foods--far greater than my original elimination regimen. I have almost no symptoms at this point, after 7 months on Elmiron, and I started to feel better after only two months. So hang in there. There are lots of treatment options and everyone has to do some tweaking and experimenting to find the best treatment personal treatment plan.

[Pink26]

Thanks Goldfinch I am for sure trying everything I can to get better.I do just have to hang in there and take it day by day and know one day it will get better.I appreciate everyones feed back... so surreal that now I am one of yall never thought in a million years I would be on here as sure no one has lol but everyone here is so supportive and kind not sure what I would do without this site!

[KristyKay]

I wanted to chime in also and just say hello and welcome. I know it's a scary time right after getting diagnosed. For what it's worth, I am 5 months in and doing VERY WELL. Please don't despair. Just take one day at a time and breathe. I know that sounds silly, but it really helps to try to be calm in your heart and just breathe in and out deeply for 5 minutes. Do it a lot.

I would encourage you to take what Vicki said to heart. I received some literature from the ICA and the latest figures are that approx. 9 million people in the US have IC. 9 Million! That's a LOT of folks who aren't on this board. In my time here it seems clear that most of the people who post are either newly diagnosed like you or are struggling still, so it is understandable that you might get a not-so-great impression of life with IC. I have decided to try and keep posting even though I have a mild case and live a completely normal life for that very reason. There is a tremendous range in terms of the severity of this condition.

Take Heart. Your life is not over. You are going to have to make some adjustments, but think of the payoff! Sure, I miss tomato sauce but I love feeling good more!

Feel free to pm me if you ever need to vent or someone to talk to.

Be Well,
Kristy :smile tee

[statesboro]

I did notice you have gotten a few good responses by now. Also, I can tell you are aware you have found a good place by coming on here. Yep! We do understand. It is not uncommon to feel lost, discouraged, frustrated, and even confused when dealing with a chronic illness. Of course, we don't enjoy having IC, or any chronic illness, but life goes on. We are all different in symptoms, gender, in my case, ages, and medications. Oh, yeah! Symptoms can change from one day to the next. Anyhow, I hope and pray that you don't just stayed depressed.(although I can understand depression with chronic illnesses) It won't help IC to stay depressed.(although I don't know if you really need help with depression now) Ok. It can get better. Hey! I don't do everything that I used to. That would be correct. I never ended up quitting my job at all.(job since 1995)(diagnoses 12 years ago next month) I read about one dude with IC that still plays tennis and goes skiing.(although it did state he doesn't always sleep good) By the way, I would not try either one with proper sleep right now. Oh! I just know it would be a joke for me to try. (with IC and CFS and my current sinus trouble) Geez! I am supposed to be leaving a quick reply instead of rambling and getting out of hand now. Ok, then. I have got much love and respect for each individual that comes on here.(even other males)(and ones that may still have no idea of my existence)Ok. That is gonna be all now.

[Pink26]

Thankyou so much kristy and statesboro!! I feel so welcomed :)