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    Hi I haven't been diagnosed with IC because my first urologist refused to do a hydrodistention, he only performed a cystoscopy and said that my bladder looked fine. I continued to have severe pain but it was hard for me to describe to the doctors the kind of pain I was having.I will be seen a gyno/urologist Doctor in June, meanwhile I have to wait and suffer without knowing what is really happening to me , my gynecologist thinks I have IC .I follow the IC diet as much as I can and it really helps but sometimes is hard to find things to eat or drink.
    I'm taking tramacet for pain and when is very bad I take percocet, I want to know if IC gets worst over time and if some of you can do it without pain meds.
    All of your stories sound so familiar to me is so nice to know that I'm not alone.
    Thanks Loren.

    Current Meds
    Elmiron 300mg tid
    Elavil 25mg at hs
    Atarax 50mg bid
    Tramacet as needed
    Vitamin D 2000 iu bid
    Gabapentin 300mg tid
    Uracyst instillatons one a month

  • #2
    I have read where some people get worse and then some say that it stays the same..IC is mind boggling

    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.


    • #3
      IC rarely gets worse over time. Usually, it stays pretty much the same... of course, there are cases where it does get worse, but they are the minority.


      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.


      • #4
        HI! My IC has gotten much worse over time. Mine started when I was around 20, I'm almost 51 now. For many years I dealt more with frequency and some bladder pain. Now it's more pain and much less frequency.....but I do take Elmiron, use the Oxytrol patch, take Freeze dried Aloe Vera and use MSM gel for the urethra pain (which is MUCH better since starting it).
        I hope you find answers soon. Good luck to you! 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:


        • #5


          My name is Kim. I was officially diagnosed last year with IC under hydro but it was suggested that I had it in 1999 but that was pushed back because of issues with severe endometriosis.

          I am not familiar with MSM gel? Is that a script from a doctor? I currently take pyridium at least once a day and it helps with the pain down there.

          I currently take elmiron, elavil, pyridium, hydroxyzine, vicodin, protonix, reglan every day.

          I am still in pain everday. I even just got a neurostimulator implanted a week ago. I think it is helping but the doc says it will take long for the site pain to go away.

          Hope this helps!

          34 years old - married with 3 kids
          #1 Vaginal birth 1996
          Vulvarvestibulitis 1996 a month after birth - suffered over a year with that
          IC started in 1997 ((hydro(pointless) but not officially diagnosed only mast cells and inflammation?)
          Endo started 1999 (like 5 laps thru the years to laser tumors and remove large ovarian cysts)
          #2 Vaginal delivery 2002
          2002 thru 2005 - Endo and IC
          Total Vaginal Hysterectomy in 05 (Horrible - total regret - NO RELIEF OF ANYTHING EXCEPT MY ABILITY TO HAVE MORE CHILDREN)
          Bladder sling 6 mths after hyster in 05
          Another hydro (even more pointless) 06 and found hunner's ulcers (offical diagnosis date)
          Neurostimulator - Interstim 07 (best thing ever for frequency)
          Appendectomy 07
          Another bladder sling op because sling broke (Worst pain ever during first one and then again, WOW!)

          IC - Bladder Retention (New) - UTIs (New/6 since Jan 08) - PFD - IBS - Acid Reflux - Groin Tendonitis - Severe Constipation - Anxiety disorder and depression

          100mg Elmiron - 2 twice daily
          90mg Avinza (Morphine) - 1 am and pm
          Benefiber 3x daily
          Amitiza (RX for constipation)
          60mg Prevacid
          15mg Oxycodone every 3 hours as needed
          10/325 Percocet every 4 hours as needed
          10mg Valium as needed
          10mg Ambien as needed
          Pyrelle and Urelle for burning
          Vivelle Patch (Estrogen)
          IC Diet (try but not really strict but found some triggers)[/SIZE]


          • #6
            Welcome Loren;
            So Sorry to hear of all your pains. Hang in there hopefuly you will get a doctor who will work with you. One surgestion is change urologist. If your not happy and not getting the answeers you deserve, you have every right to go for a 2nd 3rd 4th opinion. Your incharg of your body not the doctors!
            If your ob/gyn thinks you have IC have her refer you to a urologis, if its the same one you seen, tell her/him, that you refuse to see them and why. They will be glad to help you find one who will do what you need to get he right answers.
            I had simular situation. I was dumb and stay with the same ob/gyn for 10 years, since i was 21-22. Now im 33, and not till last year in feb, did i get my IC diagnced. IF i would have had the courage to leave my doctor sooner, i would be in better situation then i am in now.
            I switched ob/gyns, and she was smart enough to say i want you to see others cos she didnt think i had Endo. So by that then i was able to find i had IC. My other doc refused surgery, wouldnt do other testing, Plus tried so many other things, i ended up gaining 40 pounds cos he keep pushing hormonal stuff onme which never helped.
            So dont let them push you around. Doctors work you you, not vice versa. It is scarry and nerve racking bumping heads with doctors. I know, i do it on a weekly baises. But when it come down to it,its you who has to livewith your body not know who you feel. So be strong and i hope you will get the best diagnosis soon.
            For me my ic has not responded to any medican except the Elimron(which helps to regrow the bladder lining-but takes several months to get to that point). An over the counter medican you can get at walgreens or RiteAid, is called Prelief,this helps refuse acid in the urine, if you eat spicy or drink pop, or coffee, and thing chocolate, tomatoes,ect. For me food is not a bother except citrius. So its not a big deal for me i took it the first 3 months or so after surgery though.
            Also I get a lot of bladder infections alone with my IC, No idea why, but now i am on an antibiotic for 6 months, 3 more months to!!! But its working really good, Its called Macrodaten. maybe spelling off not sure.. But my doc said being on it this long is a preventitive, also hoped that it will take away some pains also for a while. No such luck on the pain area but no infections also.
            Also try Ice packs. when you hurting, heat for me makes it feel worse, cos everything get so enflamed, so i use ice around my hip area and groin area when the pain is bad.
            I dont take pain medican every day. If you do that, then your body get so used to, then you need more and more of it to take away the pain when you have to when its really bad.
            I use 800mg motrin also when i notice any swelling,I have a vain on my right sided hip that when its all enflamed, it pops out and it hurts really bad. So wheni can feel that poped out i know its enflamed.
            Also Avoid wearing tight pants. IF you have ic, at least for me tight clothing is a BIG NO NO!!!!! I want to dress up and wear differant things, and i regreat it a few days latter. Wear loose none constictive pants, My collection of pants is mainly elastic. very few other pans are not, if they are i have to buy little bigger, cos if its tight, never a good thing for me,
            One other over the counter med that seems to help for me, is Midol PMS , there is somthing in that one which works really good for me. cos it helps with bloating, and back pain, ect... it really helps.
            I hope some of these will help you out. I hope you start to feel better. I know how hard it is not know what you even have and trying to treat it and not knowing if its the right thing to treat.
            Good luck with everything, If you need to talk just come share with us. Everyone gives such good advice here, and it help sto get your thoughts out, cos you may fele your the only one dealing with a certain thing then you find ohh my so many also have this too. So you feel your not alone. Its great to know that.
            Best wishes.

            Current Conditions:
            IC,Feb 06

            Prenecious Anemia
            Stomach Ulcers
            Acid Reflux
            Low Blood Sugar

            Gaul Bladder-1996


            Elmiron,100mg 2am 2pm
            Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
            Elavil, 150 1pm
            Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
            Prilosec,20mg 1am 1pm
            Zoloft,100mg 1 pm
            Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
            Reglan, 10mg, 1 3xday with meals-for duonditis
            Ultram 50mg 1 every 4hrs as needed for pain
            Pyridim,100mg as needed
            Vicodin 5/500 as needed for pain
            Heating pad
            Ice Pack
            Arthritis Pain Equate brand 650mg usualy 2 at a time
            Stool softeners w/stimuli, 2am 2pm[/COLOR]

            Hopefuly no more gets added to the list!!!

            I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
            Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
            My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
            When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
            Dont forget to take care of you!
            Take care


            • #7
              to this site. Sorry that you might have IC!

              IC rarely gets worse over the years, but mine has, I think because it took so long for me to be dx -- over 5 years. Plus the fact that after i was treated the doctor didn't really know how to! It wasn't until he retired that the doctor who took his place knew anything. (At the time, the only treatment that i was doing was DMSO on a semi regular basis and Elmiron-which put me in remission for 5 years at one time) - this doctor that I'm seeing now told me about the diet and about this website (which by the way, I'm very,very grateful for-as I've have learned a lot! Thank you ladies!!
              Right now, I'm dealing with frequency,and pain, and because I'm considered "high risk" the only thing the doctors will do for me is give me pain medication and do hydros every 6 months or so. (I can't get off my coumadin for any length of time without being put on something else). Right now, besides pain meds and doing hydros, my family doctor just put me on Vesticare, which I think is beginning to work with the frequency. I am now beginning to have less trips to the bathroom-- use to get up 6-7 times a night now its 3 maybe-- last night it was 1!!