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  • 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.
    my name is Katie, 22 yr old mother & nursing student. I want to be a writer and midwife.

    I have severe IC w/ hunner ulcers and urethritis with lesions ENDO, chronic pelvic pain, PFD adhesions, scoliosis, arthritis,migraines,asthma chronic pain.

    Mother to a beautiful little girl. She has my heart and she's everything to me. Thinking positive and consciously untensing tense muscles helps a ton!!!! physical therapy also helps a lot.

    Comment


    • 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.
      DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

      Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

      My Pelvic Pain Blog

      FB Fanpage for My Pelvic Pain Blog

      Comment


      • 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.

        Comment


        • 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!!!!!!!!

          Comment


          • 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!!!!!!!!

            Comment


            • 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
              I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

              Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

              Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
              DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
              Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
              Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
              Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
              Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
              History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

              Comment


              • 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
                I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

                Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

                Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
                DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
                Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
                Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
                Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
                Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
                History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

                Comment


                • 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.

                  Comment


                  • 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.....

                    Comment


                    • 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.
                      DIAGNOSED 12/2008
                      AGE: 29 female

                      CURRENT CONDITIONS:


                      1. THROMBOPHILIA
                      2. CLASSIC IC
                      3. MIGRAINES
                      4. MITRAL VALVE PROLAPSE

                      CURRENT MEDS:

                      1. BABY ASPIRIN
                      2. NEXIUM
                      3. SANCTURA
                      4. URELLE-had to stop beacause of intense itching
                      5. BLADDER INSTILLATIONS (twice a week)
                      3. PYRIDIUM
                      7. DIET MODIFICATIONS

                      Comment


                      • 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
                        [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
                        Hysterectomy for severe carcinoma insitu
                        1994..1997 ovaries removed
                        First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
                        severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
                        Hashimotos throiditis
                        angiomyolipomas of the kidney
                        Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
                        I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

                        'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

                        Big hugs to all my ic friends!
                        Debbie

                        Comment


                        • 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!
                          was finally diagnosed on 3-19-09 after 7.5 years of misery.

                          Diagnoses
                          IC
                          PFD
                          IBS
                          Depression/Anxiety
                          Lumbar Lordosis
                          Now getting tested for MS on Jan. 27th. day before my 30th bday!

                          Meds I'm on
                          Ditropan ER
                          Elavil 25mg -just stopped this one it wasnt helping
                          glucosamine vitamin (for joints, my knee)
                          Prelief, when needed
                          Vistaril 25mg
                          Valium
                          Zoloft 100 mg
                          Pyridium-makes your pee bright orange!
                          Birth Control
                          OTC Allergy meds
                          Fentanyl Patch for pain, 50mg
                          Oxycodone for breakthrough pain 5mg right now but need to go up!
                          Had to stop my PT due to insurance
                          TENS unit

                          Im really considering the Interstim but doctor isnt on board yet with it. Im also in process of filing for disability. *update is I had the Interstim trial and it worked well for me. The perm. surgery was scheduled but before I could get it my Urologist stopped being my doctor for unknown reasons! It really makes me angry. So I am still searching for a doctor to do the Interstim on me. I am in the appeal process with disability!*


                          Meds I've tried since being diagnosed (there have been so many over the years though)
                          Sanctura, had to stop taking after 2 days, horrible retention
                          Enablex, just very expensive
                          Librax, its expensive and wasnt sure it was helping me
                          MS Contin, made my joints very stiff!!
                          Did 4 weeks of Elimron instills, didnt help at all!
                          Elmiron, took it for 2 months and I was losing way to much hair so we stopped.

                          Comment


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

                            Dopnna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            Have you checked the ICN Shop?
                            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.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            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.
                            [3MG]

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

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