I need to calm down

[marar76]

I haven't been officially diagnosed but Dr. Moldwin is my doc and working with me. He said my internal exam was boring and to stay on my current regimen and I should continue to get better. I'm on .5 klonopin at night and 10mg. of elavil, I take prelief before I eat anything and try to stick to the diet and have been doing somewhat okay. My main symptom is the feeling of needing to pee when I don't have to. I can hold my urine for hours and a it amazes me how much comes out when I do pee. It's like I drank a 6pack of beer. I pee around 5 times a day rarely more. My problem is these boards are scaring the hell out of me! Everyone seems to get worse not better. Please tell me this is rare and boards are just the really bad off 1% or something. I'm starting to lose hope by just reading the posts on here. Can anyone who's done better not worse speak up!

Rachael

[sailawaygrl]

The people that you find on these boards are not the whole IC population. I have seen many people come to the boards and get much better and go on living their life. That is why you don't see as many "good news" posts. They are out living life. IC is not progressive, only in a small amount of people it is. You are lucky to see one of the best IC Dr's there are. Please don't let the stories you see on here scare you. A lot of people on the boards are new to IC just like you and are still in the early stages of there care, most likely they will start feeling better and move on too.

Sandra

[KatieB]

I agree w/ Sailawaygrl

Although I was diagnosed in November (and I have to say have had symptoms off and on for 15+ years), I have had a dickens of a time finding a good uro. My current "flare" began in Oct and my symptoms just haven't gotten better. I think/hope I've finally found a good uro and pt, but getting started on treatment takes a long time. I still have a LOT of testing to do and then they have to review the results and THEN get me back in for another appt. Sometimes it feels like walking thru glue. I have a pain management doc (Thank the good Lord) and he helps SO much. But I'm ready to start treating the disease and not just the symptoms.
I know it seems as though people here are getting worse and maybe some are, personally, I think I'm still in the same horrible place I was when I started. I'm sorry for you're pain and I hope you find help soon. Please try not to be discouraged by some of the posts here. People come here and post because they are at the end of their rope. When they get better and feel better, they move on. Good luck to you!!

[needsrelief]

I agree with the others. The IC Network is a great place for support. But people who are doing great or have thier IC under control dont seem to need as much support as others who are currently struggling. From time to time people will post they are in remission and other sucess stories. but many of them dont come by as much or at all anymore cause things are under control. The IC network doesnt represent every single person with IC. There are many out there who are doing great. Its good that Dr Moldwin is your doctor. He is well recognized in IC. and if you do have IC hopefully it can be well controlled. There are alot of different therapies out there. and alot of people find that combinations work best Good Luck

[bob04951]

OMG, don't be scared! Most of the posts on here are from people who are having problems and need advice. There are threads here from folks who are in remission or have found treatments that have helped. It's not all negative! There are a lot of very positive posts here. And some of the others are from people like you who are just plain scared. Don't be afraid of this, go after it and get relief. Take care of yourself. Jill, wife of Bob

[meResque]

I was diagnosed via PST in October. Stumbled onto some great docs right in the beginning, and an even better physical therapist. As long as I watch the diet, do my at-home PT, and stay on my meds... I'm normal, or something very close to it. I do have some pain for 2 days or so around my period (also have endometriosis though), but the rest of the time... I just live my life. We're trying to conceive (and having no pain trying!), are planning a vacation, and my step daughter's 8th birthday party. Other than to talk about new and fun recipes that go along with the diet, IC doesn't even get talked about at our house anymore. I will say that I also pee about 5-7 times a day, and have noticed the feeling of needing to go all the time really went away when I started hydroxyine.

I was TERRIFIED in the beginning. Stress and anxiety over it were causing things to be SO MUCH WORSE. It is hard to come here when you feel okay... you read about others having so much pain, and can't help but jump to... what if that's me someday? Don't live for someday. Live for right now. My husband always tells me, "Tomorrow is coming whether you worry about it or not." So there's a story with some good news for you.

[ICNDonna]

Only a very tiny percentage of IC patients actually get worse. The vast, vast majority will find treatment options that allow us to live normal lives. I have had diagnosed IC for 36 years now and am doing a world better than I was when diagnosed.

People tend to register and come here when they are having a difficult time. When they begin to feel better and they don't need more information and support, and are busy living their lives, they don't usually spend any time here.

Some of us do stick around, however. In my own instance, I come here often because for many years I felt so alone with my IC --- and I don't want others to have that feeling.

You are very fortunate in being near enough to Dr. Moldwin's office to be treated there. I have his book and heard him speak at an ICA convention --- I have nothing but admiration for him.

Sending warm hugs,
Donna

[marar76]

Thanks everyone! I just needed a little perspective here today.


Rachael

[JosieWales]

I'm scared out of my mind, too. I haven't been dx'ed either...but so scared I have it. Literally shaking, trying not to bawl at work. Reading this helped...but I'm still terrified.

[meResque]

Josie, that's how I was in the beginning, too. I cried at work at least once a day for several MONTHS on the road to diagnosis... at least, the days I actually made it out of bed and into work.

It will get better, your panic. I promise. Even if you have IC, it is NOT the end of the world. Like Donna said, most of us, once we hit on the right medicine combination, feel VASTLY improved, and most of the time, it does not progress. It was tough, in the beginning, and it still is at times... but it's nothing like it was before. Please feel free to private message me if you need someone to talk to.

[JosieWales]

Josie, that's how I was in the beginning, too. I cried at work at least once a day for several MONTHS on the road to diagnosis... at least, the days I actually made it out of bed and into work.

It will get better, your panic. I promise. Even if you have IC, it is NOT the end of the world. Like Donna said, most of us, once we hit on the right medicine combination, feel VASTLY improved, and most of the time, it does not progress. It was tough, in the beginning, and it still is at times... but it's nothing like it was before. Please feel free to private message me if you need someone to talk to.

See, I don't have voiding problems, really--I seem to notice that I have to void earlier than I used to (when there's somewhat less urine in there), but my frequency isn't much different. Volumes seem normal. The only problem is bladder pain. And it hurts!!! If I can tame it down by avoiding trigger foods, I hope to avoid meds.

And thank you very much for your kind offer. I may take you up on that.

[JosieWales]

Josie, that's how I was in the beginning, too. I cried at work at least once a day for several MONTHS on the road to diagnosis... at least, the days I actually made it out of bed and into work.

As far as this goes, I teach high school, so I sure have to keep my act together!!!!

[VickiB]

When I first found this site and began reading it scared me as well. So many people going through horrible times! And, it was pretty bad for me back then, too, so it sure didn't make for a bright outlook.

Donna and the others told me it would likely get better for me, and they were right. My IC stays relatively quiet now as long as I stay on top of things. But, now that I am better, I don't spend the time here posting like back when I was miserable. -Too many other things to do now!

Over the years I've watched others do the same. The better they get, the less they post, then often disappear from the boards altogether. Maybe check in once in a blue moon to say they're still doing well. This gives somewhat of a skewed snapshot of life with IC.

So Rachael, I don't know whether the boards are representative of the really bad off 1%, but I would say IMO it's not representative of life with IC in general. Don't despair!

Vicki

[marar76]

Thanks Vicki! I'm just having a pity party lately. I'm PMS'ing and couldn't sleep last night due to pressure again. which I haven't dealt with for months. I'm wondering If things are getting bad again. I feel like a horrible mom, when that was one thing I prided myself on. I was a damn good mother. Always doing new things with my daughter, baking, playing. Now, I feel destroyed. I'm home with her full time now and couldn't wait for when I could do that and a couple months into it BAM! I'm a shell of myself. All I want at the end of a long week is to get together with my friends for a good meal or drinks and I can't do either. I can't even have a god damned cup of coffee and I'm fed up! I'm sorry to vent but I can't think of anything more cruel happening to someone. I'm sick of being in varying degrees of discomfort. I just want my old life back!

Rachael

[VickiB]

I know. We all need to have our pity parties occasionally because IC can be so cruel. Even when you get it to the point where the symptoms are behaving there's often the reminder of what it's taken from you in trade.

Grapefruit juice was always my drink of choice. Hubby saw a segment on Dr Oz about the benefits of drinking it prior to meals so he buys a big container of it. Now, EVERY time I open the fridge, there it is, right in front, reminding me of IC. Not that I need reminders, I've already had two flares this month which is highly unusual for me.

But as you get better you will gain more of your old life back! And it probably doesn't help lessen the unfairness and need to vent right now, but over time it does become easier. Some have said it's not unlike the 5 stages of grief when someone passes and I think that's true. Hang in there!