Thought I was alone

[Tammy321]

I was just diagnosed two months ago, after 5 years of pain and misery. All my doctors said it was in my head. My primary doctor told me I had a low tolorance for pain, and basiclly dismissed me as a hypocondreact. She said I had a million $ make over and nothing was wrong with me. Well, I finally have three new doctors that actually are helping me. I've been on elmiron for a month and half, Elavil for about 3 months. I seem to be feeling better but I have some days with maybe and hour or so of pain. I cant believe I am not alone with this disease, no one would believe me when I said I had really bad pain. I read some post, the ones i read, their dosage was less than mine , um my doctor has me taking 400 mg a day of elmiron, Elavil I am up to 50mg, because i still had pain at 25mg elavil. What is the norm?

[leelee88]

Hello Tammy and :welcome:

I take 25mg of Elavil, Alot of people on here take Elavil, maybe they will respond with there dosage..

[vm]

One of the other meds that us commonly prescribed along with Elmiron and Elavil is hydroxyzine (Vistaril or Atarax). You might take a peek at the ICN's free online patient handbook http://www.ic-network.com/handbook for some info about other medications/treatments that are out there. Many of us find we need a combination of a few meds.

Hang in there - Elmiron can take 6-12 months to really kick in. :)

[SharonA]

Tammy...I am so sorry it took so long for you to get a proper diagnosis. I am always surprised and saddened to learn that there are still doctors and health care providers who do not understand what IC is and how much it affects those of us who have it. Why, why, why can't they learn and understand that we need help instead of a pat on the head and then to be told to go home and suffer? That is so wrong!!!!! Sometimes I wish these people whould come down with the symptoms for a day or two just so they were able to understand. Maybe then the light would come on in their dark brains that this is a true disease and we are truley suffering with it. It is not just in our heads. It's in our bladders.

It does look like you have frond someone who does understand. Good for you. You have won half the battle. As far a what the norm is for certain meds is pretty much up to your body. Some of us get relief on 5mg of Elavil, some on 10mg of Elavil, some (like me) do well on 25mg and still others take 50mg to 75mg of the stuff. It's a shame that there isn't one strength that will work for all of us. :shake: Maybe one day in the near future, someone will come up with the pill that will help us all. I live for that day. I say that when it comes, let's all get together and rejoice with each other. I think we all deserve one huge farewell party with IC being the quest of honor. What do you say? Who wants to bring the pizza? Who wants to bring the BarBQ? I'll bring the lemonaid and orange juice and all the coffee and colas we could possibly drink. Whose up for bringing the beer? Come on kids, let's think large here. After all, it will be our Libration Day!!!!!!!!!!!!!!!! :) Oh, oh...let's not forget the chocolate. What is a party without chocolate. Bowls and bowls of the thick, brown, sweet, smooth and luscious food of dreams. :dance:

Oh God, please make it so. :pray: Please help your suffering children and give wisdom to doctors and researchers so they can find the cause and the cure and release us from this dependency on toliets that we all have. I honestly do not believe they where meant to be the main chair where we spend most of our time. If that were the case, they would be so much more comfortable for our pain ravaged bodies. Who was the person who came up with hard porcelain seats on which to sit our poor bottoms on for hours at a time? :rant:

Sorry I hyjacked your post. I am in a mood and this was the place where it came out of my brain and onto the page.

Tammy...I do want to :welcome: you to the ICN and to say that I am glad you are here and posting. I want to also say that you are not alone with this. There are lots of us here who completely understand what you are going through and are willing to help you travel your road on this very strange journey.

:) :) :)

[tigger_gal]

Hi Tammy, you are not alone... I am so glad you found us..
I too went thru doctors like I peed trying to get help, and was told there is nothing wrong. I think the worst statement a doctor ever made was he told my husband (which screamed at me to find a job, there was nothing wrong with me) told him, take your wife home and explain to her nothing is wrong with her, all she is doing is seeking your attention.. I too have new doctors who believe and treat me well.
I hope you contiue to feel better :)

[barbour1]

I think we have all been through the same thing with Dc. They are really uneducated about IC. And there is nothing not to believe .Once they do the hydro and take pictures you can clearly see the inflamation.That would be no different then some one else having atheritis only ours is in the bladder.
(any thing with an (tis) on the end is an inflamitory disease.

[Zygala87]

Hello. Dealing with Doctors can be flustering. My PCP never heard of I.C. When I first saw him about my problems, I knew what was wrong with me and made a copy of everything I could find on the WEB about it. He asked if he could keep the papers and sent me to a Urologist who made the diagnosis. When my Husband next saw our PCP he was told since seeing me he has had two other patients with the same thing. I feel very lucky to have a Doctor with an open mind and a desire to learn. By giving him all that information he became educated about I.C. I put it to him kindly saying here, this information may be of assistance to you. Shouldn't I receive a consulation fee? Just kidding. I'm grateful to God for a good Doctor. Ziggy

[sami4]

Tammy:
There is no norm for IC med doses. Each person has a different set of symptoms and is at a different stage of IC. What works is what is norm for you. Glad you are becoming stabalized on Elmiron and Elavil, be patient things will keep getting better.
All doctors are not created equal, some are smarter, some have more experience and so on. You have to just keep looking and let one doctor who cant figure out whats going on stop you or shame you that its all in your head.
Sammi