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when does ic really begin

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  • when does ic really begin

    There is something that I would like to ask all of you. Did any of you have full blown ic symptoms when you were small and if so or if not can you tell me if it begin when you became sexually active. I have had it for a long time and it seemed to me that mine was progressive. I don't remember haveing yeast infections etc. before I had sex. I was wondering if you all think that it is something that triggered it at a specific time in our lives, or if it came on slow and easy, getting worse with time or just all of a sudden. By the way I truly have been blessed by you questions and comments. When I was diagnosed there nothing with the exception of what the doctor I went to was saying. One more have any of you heard that the dmso treatments cause spasms long tern.

    Thank you ,

  • #2
    My urogynecologist thinks it may be genetic and manifest itself after baldder trauma. Works for me. I didn't even know there was a diesase called IC until just after I had extensive pelvic reconsrtuction and BOOM!! there it was.
    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


    • #3
      That was me I call it the IC HIT, because it came out of no where.. I have always had frequency but I just thought I had a small bladder.. So I prob did have it and just didnt no it.. But the pain started after my cysto/hydro.. I never had pain like this before and before my cysto/hydro I could eat anything without it bothering me at all...This disease is one of the most strangest ones I have ever reserched, It affects people in so many differant ways and the treatments vary from person to person..It is surley something I wish I never had...

      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.


      • #4
        That is a very interesting question and one I've thought alot about. I always had to pee when I was a kid. I mean little. My parents, who are strict, even told teachers that I had permission to go when I wanted. (I never was a problem kid...hyperactive but yes, went back and forth to the can in the alloted time though) As a teacher, I had the same policy...children have to go and who am I to regulate their bladder? research shows that causes the problems in adulthood with bladders, kidneys (all a myth about "strengthing" the bladder) I always just dealt with problem kids as they arose and I very rarely had a problem.(Treat akid with a respect.....) ANYWAY...sorry, I have very passionate feelings about teaching when it comes to treating children like mototrons. So, I always peed, many times, as a child....continued into teen years, especially on my period. When I drank, I might as well have stayed in line at the bathroom because as soon as I was done peeing I would have to go again. Big joke with my friends. So that has always been with me. I think it has been to do with uterus and other such stuff...After the trauma of all surgeries the pain started. Yippee.
        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

        Medications I CURRENTLY take:
        90 mgs Ms contin (45 mgs Am/PM)
        Percocet as needed
        Topomax 100mg day
        Ambien 10 mg bed
        desipramine 25 mgs

        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
        Albert Einstein


        • #5
          I had frequency and urgency episodes when I was as young as 8 or 9 years old... there was no trauma or anything that caused the symptoms to start; they just slowly worked their way into my consciousness. I then had episodes lasting days to months for many years, some quite severe, and was finally diagnosed in 2004 at 29 years old, when the excruciating pain began.

          *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.


          • #6
            Mine also hit out of nowhere, seemingly. It actually started about one month after my second c-section - and it didn't come on gradually. One day it wasn't there, the next it was in all its "glory". I thought it was a bad UTI, but it wasn't....

            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


            • #7

              I have frequently wondered about this myself as my case really did seem to come out of no where. Like many of you, I had a lot of frequency as a kid. I remember being really little and begging my dad to pull the car over coming home from church. We were on a highway and even though it wasn't very far I was desperate. I went on the side of the road...

              Thing is, though, I never had any pain at all until junior year of college. I never had any yeast infections, bladder infections, no abdominal surgery or trauma... I was NOT sexually active, in fact I was still a virgin. I did have migraines and heavy periods but other than that no major health issues at all. When I got my first flare, I had been having mild pelvic pain, and pelvic bloating in the days leading up to it. I woke up in the morning really having to pee (which was and is normal) and by the end of the day I was in the fetal position on the bathroom floor crying while my roommate was begging to take me to the emergency room..... That was literally how my IC began.


              • #8
                I remember mine starting when I was in my 20's after having a laparoscopy done. Atleast I seemed to notice it more then anyway, and this was after having my two children. I can only remember ever having one yeast infection in my life and that was when I was pregnant, so I don't think it was that. But who knows.


                I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!


                • #9
                  My hit out of now where as well, I was about 18 (never had problems before then) I think this was when we moved to Houston. Had problems ever since on and off. Had UTI's on and off/ kidney problems, etc. Finally dx with IC when I was 32.


                  • #10
                    I am another one with sudden onset, but at a much later age. I never had bladder issues when younger. In fact, I always had greater than normal capacity, never experienced frequency and had absolutely no history of nocturia. I had my first uti shortly after being married in my 20s. I had a few utis over the years, but never what would be considered recurrent infections. There was always a period of at least 4 years (sometimes many more years) between infections, all infections were documented by culture and resolved quickly & completely with antibiotic treatment. At the age of 55, I was fine one day and in agony the next. Like most, I assumed it was an infection. Wrong! Negative culture and DX was pretty quick. An interesting point is I have an older sister who, when young, had bladder and control issues until she was nearly 20. All resolved without treatment when she was around 20 and she has never had a problem since then. She does have significant allergy problems, but does not have IC and has absolutely no bladder issues. Strange! She had the build-up to IC many of you experienced, but all resolved and she is perfectly healthy. I didn't have the issues when younger, but had very sudden IC onset without any build-up or warning whatsoever. Go figure!

                    Ulcerative Colitis and IBS
                    Pelvic Floor Dysfunction

                    Retirement is great! Work is highly overrated!!!
                    ---My dear hubby

                    Never go to a doctor whose office plants are dead.


                    • #11
                      Re: when does ic really begin

                      My onset similar to some above. l do recall often having to rush to go as a kid, and got a few bouts of bacterial cystitis as a teen twenties. The ic started straight after my second csection with sterilisation, but l wasn't really well with either pregnancy, first emergency cs, second planned, but left with bacterial cystitis, slow to be treated, and that started ic off, though not diagnosed till much later.


                      • #12
                        Re: when does ic really begin

                        This is why I kind of think IC is caused by some kind of pathogen.

                        Originally posted by twitchy View Post
                        My onset similar to some above. l do recall often having to rush to go as a kid, and got a few bouts of bacterial cystitis as a teen twenties. The ic started straight after my second csection with sterilisation, but l wasn't really well with either pregnancy, first emergency cs, second planned, but left with bacterial cystitis, slow to be treated, and that started ic off, though not diagnosed till much later.