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I am crying out for help here...

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  • I am crying out for help here...

    Technically I am not newly diagnosed. I was diagnosed three years ago at age 22. I was given Elmiron and after about a year of taking it it worked... for one year that is.. and then my pain came back. I got hooked on Vicodin and made myself get off of it and now I am in so much pain at times.. Depo Provera of all things seemed to help but then they put me on Lupron and the pain is back more than ever! I tried progesterone cream and the only thing it did was give me panic attacks and depression. I am desperate.. absolutely desperate. I dont care if I am successful at work or personally!
    Last edited by ICNDonna; 03-29-2007, 02:40 AM.

  • #2
    I think you should go to the dr and talk about other options. If you need other pain meds ask for them. You're obviously not happy right now. Can you make a dr appt??

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06


    • #3
      Please call your doctor today and ask for some help with your pain. It may be that you need a referral to a pain management specialist. Are you following an IC diet? If not, I suggest you begin today. That can be very important. And it may be that you will need to take pain medications to keep your IC pain at a tolerable level. If you do become dependent on pain meds, your physician will help you to wean away from them when they are no longer needed.

      Warm healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
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      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Hi, I also have IC. I have been through the wringer with treatments - none of them helped too much. My uro-gyno dr. finally admitted there's nothing left that she can do and I'm being referred to an IC specialist. I haven't had a pain free day yet. I am trying more natural things. I finally had to break down and asked my Dr. for percocet. She made me feel like a real scum bag for asking. I hope you can get the help you need.


        • #5
          I too think it would be a good idea to speak with your doctor about the pain.
          'The will of God will never take you where the Grace of God will not protect you.'


          • #6
            I am lucky to have doctors that understand my pain issue and have not made me feel like an addict. I have only had 1 nurse to ever say "have you tried an over the counter pain med?". Yes, I have been on Lortab for years, but you know what, let me try Advil and see if it helps! She realized when I came into the office that I my doctor was calling my IC severe which is why he sent me to a doctor that specialized in IC. She never actually said she was sorry, but she was especially nice when I was leaving.

            I hope you find a doctor that can help you!

            Hugs, T83


            • #7

              Dido to everything said here. Just know we are here for you. This damn disease does take a tole on you physicaly and emotionally. Read all you can on IC, what helped me is these boards and I read lots of stuff on chronic illnesses. I came to accept my limitations a lot better and don't beat up on myself quite as much now.

              And it is like someone else said here, there is a difference in someone taking pain meds because they need them for pain, than someone who just uses them to get high. I was very reluctant to take them as well. Now I'm using them everyday. If I don't I know what's coming. It is a lot easier to put out a spark of pain than it is to put out a flame, so that's why I take them everyday.

              Please know we are here for you and we know the pain, physically and emotionally you are going through, you are not alone...........

              God Bless, you are in my prayers,

              Serenity isn't freedom from the's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....


              • #8
                Welcome to the ICN! I am so sorry to hear that you are in such horrific pain. But, please know that you are not alone. You have come to the right place. We definately understand what you are going thru. I agree with the suggestions that the others have given you. Please, please, please make an appt and go see your Dr and have a heart to heart talk about this. Several ICers have found it helpful to bring a family member to the appt to add another layer of credibility to their pain. I know it isnt right, but Drs. just seem to take pain more seriously if someone is with the patient demanding that their loved one be taken care of and that their pain is treated.

                Also, alot of ICers who had Drs. that were reluctant to r/x pain meds, found that printing off information from this site and from the NIDDIK regarding the quality of life of IC patients and the impact the pain has on them, has been helpful in getting their Drs. to finally get it and help them.

                For me, I had to do all of the above, plus, I started keeping a pain diary and took it with me to the DR. I wrote in it my my level throughout the day, what made it better, what made it worse, meds I tried that worked, meds that didnt work, activities that brought on the pain, etc. I also journaled how it impacted my marriage, career, ability to be a mother, quality of life, etc.

                Lastly, I asked for a referral to a pain clinic, which was the single most important thing I did. I have been exactly where you are, and so have many others here. But, there is hope and there is help. When I got to the pain clinic, the first appt, they gave me Morphine and Lortab. I am also on disability now so I can rest when I need to do so. All that makes a big difference.

                There are also several other meds that can help you until you get your Dr. to r/x pain meds (or get to a new Dr or pain clinic). You will find alot of the information on meds, treatments, the IC Diet, etc. in the Patient Handbook. It is located at Also, if you dont have it already, there is a great book called The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. It is the best book I have seen on the subject and is very easy to read and loaded with information. It also has alot of infor that you can copy and give to your Drs. about pain meds and other meds that can help you.

                There are also several antidepressants that might help you too, (both IC-wise and depression wise). Elavil and Cymbalta are two that are commonly used (usually r/xed separately) for IC patients to help with IC symptoms (at a low dose), but to help with IC and depression at a higher dose. I definately sense hopeless and depression in your post. These are symptoms that you also need to talk to your Dr. about. Alot of ICers struggle with depression, (particularly when their pain is not being managed.) Having pain that is not being treated is a very dangerous thing for anyone. I beg you to change Drs if yours still wont treat your pain after trying the tips we gave you, and if he/she wont refer you to a pain clinic. Just b/c one Dr. wont treat pain doesnt mean they all wont. After all, if you read this site for even a few minutes, you will see that alot of us are on pain meds. We all get them from DRs, so there ARE DRs out there who will treat IC pain. Though, you may have to drive a ways to find one. (I drive 5 hours round trip to get to my pain Dr. once a month.) But, it is worth it to me to suffer terribly that one day, in order to have pain meds when I am suffering on the other days. I found my own Pain Dr. by getting on the computer and doing a google search on pain clinics in the surrounding large cities. I looked at every big city within a 300 mile radius. I called all of them to make sure I could get in soon. (Most took several months to get an appt) and then I asked each if they r/xed meds, since some just did nerve blocks. Then, I had my DR. write the referral for the one that was the closest that r/xed meds that I could get into the soonest, (and that one was 5 hours round trip.) But, Believe me, it is worth it!

                You can also post your city and state on the ICN under your region and ask others near you to let you know what Dr. they see for their pain mgmt. Alot of ICers found their pain Drs. and URos by doing that.

                I will say a prayer for you right now. I dont know if you believe in prayer, but I do, and will pray extra hard for you that your Dr. will finally help you or that you will get into a new one soon who will treat your pain.

                Most of all, I hope to convey to you that you are not alone and we do understand. Feel free to pm me anytime. I keep odd hours and up alot at night. If you ever want to talk to someone, I will give you my number. You can call me anytime, even if it is 2 in the morning if you need to talk. (Several of my friends here can tell you, I have talked to them many times when they have called in the middle of the night, and that's how we became friends. I didnt know them either then!)

                Sorry this was so long. But, I just wanted you to know that I care and so does everyone else here. I hope you get help very soon.



                • #9
                  please dont cry!

                  :woohoo: I really like these live action smiley faces! I am just sending you the warmest of regards, from all those on this site who not only feel your pain, but are living with it as well! Sure is crazy to know what we are dealing with ,and definately extremely painful! I can't even walk sometimes! Of course, when I went to the ER petrified the first time it happened..they didn't believe me. Even though my boyfriend had to carry me to a wheelchair and push me in! AT 23! hmm. That same night, they filled me up with fluids and told me to hold it til ultrasound. HMPH. IC. Well once we know we have it, holding it is NOT in the vocabulary. I would of thought they knew at least that much. They stretched my bladder sooo much.. way above the 250 cap I got going for me, that I actually was able to not just get up, but shuffle myself, IV and all to the nearest bathroom, crying my eyes out, while the nurse is yelling "if you pee! I AM GOING TO HAVE TO GIVE YOU A CATHETER! I KNOW YOU DON'T WANT THAT! JUST HOLD IT! OR ONLY PEE OUT SOME" HAHA... RIGHTT...well i had to take the cath instead when I finally relieved myself. I was proud with my decision, because the last thing I wanted to do with my oh so patient boyfriend, was to have him watch me pee in the bed instead. It's amazing what the ego will inspire us to do when absolutely necessary! Of course, I frustrated them, and as always, they determined I was full of it, and never once mentioned a bladder problem, or IC at that! To this day, I still feel like the doctor knew what I had, and thought it would be funny, or was like testing how long my poor bladder could scream at me before I would shuffle through the pain and make way for the lavatory with every last bit of strength I had. People were laughing too, so i wouldn't be surprised actually. So the point of all this mumble jumble is this... you are not alone! There is horror story after horror story when dealing with this and the pain associated with it. This one is just one of the many! I was hoping you could find some humor in it too! I do, not before, but I do now. Please don't cry! OK wait, go ahead, cry, but only if it will make you feel better! We are all here for you so at the least we will help to wipe them tears away! And to hand you a virtual tissue.. perhaps.. will work for now.. hmph. the toilet will be the temporary kleenex for now! So don't let your kleenex eat you or anything you hear! WE would not want that! Warmest regards.. and all the best of health, wellness, and relief too!! Send me an oh send me an right now... right nooowww.. you have two, lucky you!!!
                  Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                  Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                  Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.