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  • new with ic & so lost

    i'm 23 yrs old & urinate about 25 times a day & about 4-8 at nite. the doc. did a outpaitient cysto/cgm & patssium test & said i have ic. now i'm schedualed for a cysto/hydro on may 11th & dont understand what go it's going to do since i already been diagnosed?? he did mention putting a med in me while i was under- i dont know the name but i read about dmso/dsmo?? and seen it makes things worse after the hydro- dont know if thats the only meds they used, dont know if i should refuse any all 2gether?? just scared & dont want to make things worse with the healing process & do all this for nothing. he also hasnt put me on any meds except for a antibiotic(dioxcyline) which isnt helping, but he did mention elmiron after the procedure?? i've been trying to stick to the diet & takin cod liver oil, but still nothing. the only other thing i dont get is i have no pain- only the urgency & fregent?? everyone seems to have pain? i'm sooooo lost on this, any would be wounderful. thank you for listening to me.

  • #2
    HI! WoW sorry to hear you have IC. It's not easy to live with....but it is possible.
    The diet is very important. Finging what gives you flares will help in the long run.
    I guess I'm surprised the dr. isn't trying meds at this point before making it worse with all the invasive procedures. You don't have to have the cyto/hydro.......that's up to you. Starting Elmiron and Elavil would help with the symptoms you have......and possibly Ditropan or Detrol.
    Maybe you should check out other dr.s........see what they offer you.....and ask questions.
    This site is great place to learn about IC......I hope it helps you. Good luck! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      Hi there

      Your dr. probably wants to do the cysto/hydro to look in the bladder and see just how bad it is (and possibly take a biopsy to r/o other problems). However if you've already had the potassium test and don't want the c/h I would say something. I personally flat out DENIED doing the c/h. I will be doing the potassium test at the end of May.

      I understand about the frequency. I keep STRICT bladder diaries...I go between 20-30x/day and 5-10x at nite. YIKES! I get no sleep I'm going haha.

      PM me if you'd like to chat, or email me (see sig below).

      Take care,
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:

      Connor with happy!

      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!


      • #4

        I'm 24 and I'm currently on a DMSO with cysto/hydro treatment only... (I am doing it every three months as needed). I was on Elmiron for awhile but I wanted off of it. My doctor says (and in my own experience I agree) that many patients actually DO get BETTER after having a hydrodistention. Stretching the bladder will increase the amount you can hold, which means GOING less often.... but also the larger your bladder is, the less it should get irritated. It takes longer to fill which means you can hold more pee before it gets irritated, you know?

        DMSO is a drug that coats the bladder directly and you just pee it out. My doctor said it was LIKE elmiron in that it coats the bladder and then allows the lining of the bladder time to heal. UNLIKE elmiron, its not taken orally so its not stuck in your system. You just pee it right back out. Because I'm young, and haven't had children yet, I wanted to be on as few oral meds as possible (just in case). Youre also young and maybe your doctor is thinking the same thing? Also, if youre in pain right now a hydro and DMSO treatment can make you feel better a LOT faster than elmiron can. Elmiron takes months before you notice any improvement.

        The hydro/dmso treatment does not work for everyone, but it does work for a lot of people so I would try it this once. Be aware that you will get worse (temporarily) after the procedure is done. Your bladder will be really sore from being stretched out and your urethra will be really sore from having all their equipment in it. I take about 2 weeks to recover from mine, but then I'm overall less symptomatic of IC for about 3 months afterwards.... So, I don't mind the 2 worse weeks because I know that for 3 months after those weeks I have an almost normal life again.

        If the hydro bothers you as it does some patients, you can have a DMSO treatment w/o having the cysto/hydro. Thats a rescue installation. I have not personally had one, but many of the members of the board have and they can tell you about those if youre that concerned about the hydro. I think, for me, though that the hydro does more for me than DMSO does. DMSO is just the icing on the treatment cake so to speak... for me anyway. I remember that when I had my diagnostic cysto/hydro I had marked improvement for a few months afterwards... and my uro did not give me dmso for the diagnosis procedure.

        Good Luck!


        • #5
          You can read about hydrodistention in the Patient Handbook at --- I have read that it helps something like 50% of patients. I have never had DMSO instilled at the same time, but have had SoluCortef instilled in the operating room after a hydro.

          This has been a major treatment for me since I was diagnosed in 1975.

          Sending warm encouraging hugs,
          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

          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:


          Diet list:

          AUA Guidelines:

          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


          • #6
            Hello And
            You will find a lot of helpful information on the ICN..
            Glad you found us...

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

            Link to Patient Handbook:

            Diet Reference Sheet:

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

            ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


            • #7
              thank you very much for all the replies, it's nice to know that theres people who understand. not say my family doesnt care but they just dont get it how ic is a big bummer.and yes i feel so as well especially-no caffine& BAD SLEEP but i'm willing to do anything for some reliefe..... i think i'm just gonna have to bug the doc. more & stop being scared to ask questions( and i always forget what i wanted to ask while i there & remember after i leave..iyiyiyi).
              and i want to be on the least amount of meds possible as well- i was put on a few meds by my gyn before i went to a uro. detrol,vessicare & something else-none worked.i think i may go ahead with it just so i know that theres nothing else in there.i am gonna 2nd think the med they insert. i am thankful that i dont have the pain the goes along with ic & i pray for you all that do- i cant even imagine that on top of everything else.sorry mt thoughts are scattered . THANK YOU ALL AGAIN!!


              • #8
                If you decide to have the DMSO instill, I would not have it done right after the hydrodistention. You should wait at least 4 to 6 weeks after a hydro before you do any instillation. At least that is what I read on the ICA.


                • #9
                  You might make a small list of questions to ask your doctor before you go for the appointment. I have been notorious for forgetting what I wanted to ask during the appointment, but then remembering on the drive home. Now I make a short list of my questions to bring with me and any the doctor doesn't cover during the exam I ask at the end.

                  Diagnosed August 2001

                  Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                  Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                  I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                  “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                  “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                  • #10
                    Kim took the words right out of my mouth. I always right a list of questions before I go to the uro. I have a tendency to forget everything lol. I'm sorry you have IC but at least your not alone. I'm 20 and was dxd in oct 06. It stinks being young and having this stupid disease. Remember that you are never alone and we are always here to answer any questions you might have. Were not dr's but sometimes dr's dont even know what we go through. to this ICN! Feel free to pm if you ever need to vent or talk to someone aroung your age! ((Hugs))


                    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


                    • #11
                      I have had only mild occasional pain. The pain I have had is like a UTI pain when peeing but the pain as I stop peeing.
                      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                      My Helpful Hints for Home Instillation:

                      Institute of Female Pelvic Medicine (J. Dell, My MD)
                      Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                      I post to encourage and offer total support for rescue instillations.
                      Find me on facebook: L. Clark Thomas


                      • #12
                        new with ic and lost


                        If I were you, I would refuse the cystoscopy and hydrodistention in the OR. You have already been diagnosed by the PST. You had an out-patient cystoscopy already - so the dr has had a look at your bladder to rule out cancer, or Hunner's ulcers from IC.

                        I had the same tests as you. My PST was strongly positive and I was diagnosed with IC. I was put on Elmiron and Elavil. I also have instillations of Elmiron (emptied out capsules) mixed with Lidocaine, Sodium Bicarbonate and sterile water. These are to help me until the oral Elmiron kicks in & for flares. It's working fine. My symptoms are improving. I'm also on the IC diet.

                        I don't see why your dr wants to do the hydrodistension before seeing how you respond to oral meds for your IC.

                        Take care,



                        • #13
                          thank you all again for the supoort & feed back. i have made up my mind not to have the dmso done at the same time of procedure but i am gonna give the procedure a whirl 1 time. hoping to get some reliefe out of it. but he did say he wanted to look for ulcers? when he did the outpatient procedure-from my understanding he filled my bladder up to make sure it was normal size(which it is).and dont recall him streching it he stop when i said i felt full & then drained it? so would he of been able to see anything with my baldder normal? i am calling the doc. office to day & getting some answers(i hope). hope you as well keep getting the help you need to overcome this. thank you again!


                          • #14
                            Hi JDOOKIE, I was like you when first diagnosed with IC. I had no pain, it was the frequency that got me into the Urologists office for the first time. I had my first cysto in his office which did nothing for me, guess he had a look, then did the Urodynamic testing and from that decided to take me to the OR and do a cysto/hydro....I used to pee 30-40 times a day and every hour during the night. About 4 days after the hydro I started sleeping through the nights and only going average during the day. My stomach hurt for about 3 days after the procedure because I think the first time they scope they look all around while you are under sedation and check for tumors and cysts etc. Then I developed bladder pain about 3 months later but the Uro said I needed another stretching as this gave me such good relief the first time and he wasn't able to stretch as far as he would have liked to (you have to be careful doing this procedure), so he stretched a bit further and this time is even better than the 1st time, I only pee 2 times a day at work and had NO PAIN WHATSOEVER after the procedure. I took the day off work of the procedure and the day after and was back to work good as gold. The other people on this list unfortunately have a lot of pain and differnt IC symptoms than just urgency and I feel very sorry for them and wish them the best of everything and that they can get help soon. I had that one bout of pain in March of this year and that was painful and if that is what the majority of the people on these posts go through on a daily basis, My hats off to everyone who is able to live a relatively normal life with bad IC symptoms. JDOOKIE, I think it is worth the try to have one hydro and see how you do with it, but remember the first one will hurt your tummy a bit but not your bladder or urethra (well it shouldn't that is).


                            • #15
                              Hi JDOOKIE,
                              Yes, your uro would have been able to see if there was any cancer during the in office cystoscopy. As far as IC, they say alot of times they cant see the IC through a regular cystoscopy, though the urogyne that I saw diagnosed me through a standard cystoscopy. If you were already Dx, then you dont need a hydro for that reason. Now if you are doing the hydro to see if you will get relief, then that is a different story. Though I would highly suggest to research it well before hand. It has been known to help some women, but be sure you discuss everything with your doc before you decide to do it. Ask him/her all the pro's and con's of having this procedure. What can go wrong, etc...Also, do your own research. Good luck and hope you get some relief.