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Who has everyday pain?

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  • ICNDonna
    replied
    I have closed this thread because it is so long the last few posts will not load on many computers.

    Dopnna

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  • Mrsrea
    replied
    Im in still in pain everyday! Even though I was finally diagnosed almost two months ago, had surgery, had 4 bladder instills and been all this other medicines. I still hurt extremely bad every day! Yesterday was really bad for me and Im not sure why. My uro is now not wanting to give me pain meds at all! Its so annoying. On monday I am calling a pain specialist and a womens health specialist to try and treat my PFD. Wish me luck with both places. My uro just isnt cutting it!

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  • Debgail
    replied
    Hi Dana, you sound just like me....for 5 years I took vicodin a rationed them about 2 a day figuring at least I am getting something for my pain! All the while I suffered. I suffered so greatly with pain I cannot tell you. I moved to calif. and found a really great pain doc. I encourage you to not stop til you find one too...because we all deserve to live our lives out of pain. I hope this helps and I wish you the best.

    Debbie

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  • ilovekittys
    replied
    I am in pain everyday of my life

    I know this post started a long time ago but I saw it, I am in pain EVERY day.

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  • laurina
    replied
    Oh Beth the 10 most expensive medical conditions was on the ICA website, I believe. It ranked higher than Cancer. But I will do some more checking to make sure that is where I saw it. I've been researching everything I can because I am not about to take this lying down. Also I am trying to generate some funding for research. If we donate to that we can get more attention.....

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  • laurina
    replied
    Ok great! Can you call their office? If enough of us call I think this is the answer. I would love to tell you how this came to me in a new thread if I could figure out how to do it. But I truly believe they are the answer!

    Take Care and I'll keep you posted on everything I'm doing to raise awareness and get us the help we need.

    Leave a comment:


  • BT2008
    replied
    FYI:

    Here is a page from their website that mentions bladder technology:
    Wake Forest Institute for Regenerative Medicine

    Some of Our Projects

    From bladder and trachea, to cartilage and heart –-
    we’ve successfully grown more than 20 types of cells in the laboratory. (link to page). We are an international leader in translating scientific discovery into clinical therapies. Our scientists were the first in the world to successfully implant a laboratory-grown organ into humans and have achieved other world firsts. (link to page).

    In 2006, we reported long-term success implanting bladders that were engineering in the laboratory into young patients with spina bifida
    Today, as the bladder technology is being evaluated in patients with spinal cord injuries and in women with severe cases of overactive bladder, we're working to grow more than 22 other tissues and organs.

    http://www.wfirm.org/Our+Research/Projects/
    Definitely sounds hopeful to me!
    ~Beth

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  • BT2008
    replied
    Hey laurina,

    I actually asked my urologist at my last appointment whether there was any hope for "bladder regeneration" with stem cells and he said "Definitely, but it is all in the research stages right now."

    I would also seriously consider being a candidate, but I would have to know a lot more about it first...

    I am very hopeful, however, that this may be our answer one day, but until then--we have no choice but to continue to ride it out ...

    I know you are totally overwhelmed right now, but just keep hanging in there! I am hanging in right along with you!


    Also, you wrote:
    ... help us with one of the top 10 most costly medical conditions.
    I assume you are talking about IC? If so, where did you read that it was one of the 10 most costly conditions? Just curious about your resource!

    ~Beth

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  • laurina
    replied
    I think I know how IC can be cured but don't know how to start a new thread

    His name is Dr. Anthony Atala, The Wake Forrest Intitute for Regenerative Medicine. He can grow a bladder..so why not the bladder lining. I called today because I live in 24/7 pain. I have had 24/7 pain since December 08' I have one kidney...and I am pushing to let everyone on this site know to call their office and beg him to help us with one of the top 10 most costly medical conditions. I left a message and my number as I am willing to become a trial canidate. I cannot live like many of you have for years with this pain. My newlywed quality of life is beginning to suffer in all aspects. As a wife, a mother and as a human being. They get hundreds of calls a day. But they haven't heard from us. Please Please Please all of you who are suffering sleepless nights and relentless pain call and leave a message. I think they are the answer.

    Much love going out to you all!!!!!!!!

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  • laurina
    replied
    I think I know how IC can be cured but don't know how to start a new thread

    His name is Dr. Anthony Atala, The Wake Forrest Intitute for Regenerative Medicine. He can grow a bladder..so why not the bladder lining. I called today because I live in 24/7 pain. I have had 24/7 pain since December 08' I have one kidney...and I am pushing to let everyone on this site know to call their office and beg him to help us with one of the top 10 most costly medical conditions. I left a message and my number as I am willing to become a trial canidate. I cannot live like many of you have for years with this pain. My newlywed quality of life is beginning to suffer in all aspects. As a wife, a mother and as a human being. They get hundreds of calls a day. But they haven't heard from us. Please Please Please all of you who are wuffering sleepless nights and relentless pain call and leave a message. I think they are the answer.

    Much love going out to you all!!!!!!!!

    Leave a comment:


  • wolfaleena
    replied
    Chronic Pain

    hello everyone:
    Reading over some of these posts and i can empathize with everyone of you!
    I have been in pain for years with IC.. tried millions of pills, procedures, treatments, trials, etc. Last month, went to a new pain managment doc. He put me on methadone and it is the first time in 15 years that i feel some relief from this pain.
    Just letting all of you know this, because i thought that there was nothing left for me to do.... but so far this is helping my pain. Brought it down a few notches. i am certainly Not pain free... but i am getting a break and some relief!
    I'll let you know how i feel in a few months to see if it is still working
    any side effects etc.
    Terribly constipated... but am trying miralax and if that doesn't help doc said they have some type of prescription drug for constipation due to opiates..
    Wish me luck and keep me in your prayers.... as I am keeping you all in my thoughts and prayers.
    Best of luck to everyone to perservere and get the pain relief that you deserve as a person!!! Just don't ever give up~~
    That is the best advice I can give anyone... Don't give up...something will finally work for you. You may have to go through a ton of things... but there is definetly Hope out there.

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  • VCNJ84
    replied
    Originally posted by Mrsrea View Post
    just real quick since I am new to this board. I havent posted my story yet because its crazy long. I have been in constany unbearable pain for 7 years now! I just got diagnosed last week. I had surgery this week but im still so confused with all this information. I take about 6-7 10mg of lortab a day to just get by and Im still in pain! Im just in the beginning of this process and really its so much information to take in!
    Omg!

    Thank God someone is FINALLY helping you!!

    I have been in pain only 2 months undiagnosed and am already fed up with the amount of doctors I have been to, wrong medications, no relieve etc. I can't imagine seven years!!!

    I will pray for you to find relief soon.

    Leave a comment:


  • katie87
    replied
    well, my bladder has always been "shy" and easily irritated, it became severely painful at age 16, probably because I started drinking alchohol on the weekends, having a sex life (gasp!!!) and drinking coffee... after having severe pain for 4 years, i was diagnosed.... I have stopped the alchohol, the sex and modified my diet. now 5 years later, and one daughter who I had in 2006, and my pain has not dropped lower than a 6 in almost 3 YEARS... I just got down to a 6 a few weeks ago, and sadly it isnt often , my usual pain is 7-9. I am not a wimp, and i know it.... I try not to use the higher numbers of the pain scale, but I am genuinely in 7-9 pain, I have always had WBC in urine, and mircoscopic blood and sometimes visible blood and always visible puss. I am not able to work right now and I am not collecting anything... I am hoping to get this pain under control, it is a CONSTANT pulsing pain like a throbbing heartbeat in my low pelvis (assuming bladder) which feels like it was ground in a meat grinder and doused with rubbing alcohol. I also have tailbone and urethral pain and burning, severe pain and spasms after penetrative sex. I can echo others concerns about feeling like you look normal, no one believes the pain I am in because I manage to care for my 2 year old, but it is truly a struggle and I have no choice because she needs care, so i have to do it no matter how bad the pain is. It is an "embarrassing" problem, no one understands what the pain is like.... no one... unless they have IC.... I had 1 UTI, coincidentally the START of my IC, and it was severe to the kidneys pissing blood, ever since I have had the feelings of the "constant kidney/ uti infection" that never goes away.

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  • BT2008
    replied
    Daily Pain...

    So far, I have not had a totally pain-free day in over nine months. But, with my regular instills twice a week, my current pain med treatment being titrated every month as we seek to find the right strength and dosage, and following a very strict IC diet, I have a lot of hope that I will have a lot of pain-free days--sooner rather than later!!


    ~Beth

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  • BT2008
    replied
    Originally posted by kerr4274 View Post
    Are there any pain medications that knock us out that can be taken duering the day? I take ultra C but the pharmancy said it was discontinued so they are trying to find something my insurance will cover. I work full time and go to college along with having 2 teen age children in my home...I want to be able to do fun stuff with the kids but when I am on my feet too long I hurt worse.
    Hey Kerr4274,

    May I suggest that you open a new thread with your question (you can just copy and paste this post in a new one) so it will not get lost in this ongoing old thread? That way we can all chime in for you specifically...

    ~Beth

    Leave a comment:

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