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LONG-TERM SUFFERERS-Do you get worse?

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  • LONG-TERM SUFFERERS-Do you get worse?

    This is for some of the long-term sufferers on the board. I'm just really scared, and I wanted to know if your disease progressed over the years, or basically remained at what it presented itself as. Thank you.

  • #2
    For some, IC does progress. But, the majority of IC patients remain the same or get better, especially as they learn their dietary triggers & get a treatment plan that works for them. For myself, I've gotten better over the last 3-1/2 years I've had IC...

    Hope that helps!

    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.

    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
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    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!


    • #3
      That's encouraging to hear, thank you.


      • #4
        I've got worse, but I think that's more rare than anything.


        • #5
          For me I have gotten worse but it is different for everyone so it does not mean yours will.


          • #6
            My IC was diagnosed in 1975. In the 32 years since then, if anything I am better than at diagnosis. I think it's because I have learned which treatment options work best for me and which foods and drinks are a problem.

            Only a very small percentage of IC patients progress beyond the first two or three years when the IC is developing. In my case, my IC did all of its progressing in the six months before my diagnosis.

            Stay safe

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            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


            • #7
              Prior to starting Elmiron, 7 years ago, I had the worst pain I've ever experienced but then went into remission for 3 years.
              It's not close to as painful as it was before Elmiron, so I guess my answer is, no, I have not gotten any worse
              Last edited by ~*~Christine~*~; 03-03-2007, 02:10 AM.
              IC Live Journal


              • #8
                I started with IC at 8 years old but was not diagnosed until 29 -- during that time, I got worse, but after diagnosis, medications, and finally the InterStim, I am much better. In my case it took a lot of effort, probably because I went untreated so long, but I did start feeling better!

                *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.


                • #9
                  I am one of the rare people that have progressed and had alot of symptoms refractory to treatment. I started off with pain, blood, spasms, and mucous shreads at the beginning. However, I think my IC would not have prgressed if I had been diagnosed properly and treatment started. As time as passed, the Hunner's have been around really frequently, my bladder capacity has shrunk, and now I have frequency and urgency along with the pain. I have a new uro in Orlando that is awesome, and a great pain management doc. They both rock. I have great hope between the two of them that we can imptove my symptoms. I also saw Dr. Raz at UCLA before I left California. While mine has gotten worse, I work full time and still have a pretty darn good life.

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                  • #10
                    My IC got much worse after menopause. I also developed vulvodynia after menopause. darlene IC since 1969.


                    • #11

                      darlene............................ Are you on any kind of Meds.


                      • #12
                        I seem to be going down hill too.. Thats not true for everyone the percent rate is very low. My mom has had IC for over 30 years and she is not anywhere close to feeling as bad as I do. My mom only has pain with an infection.
                        'The will of God will never take you where the Grace of God will not protect you.'


                        • #13
                          I've had IC for over 25 yrs and it's definintly got much worse over the years. In the beginning I just had frequency and pain once in a while. Then over time the frequency got worse and so did the pain. Then 3 yrs ago I started having the urethra pain too......that was the pits! I hope yours levels off and doesn't get worse. 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:


                          • #14
                            MY IC started in Match of 2001 and with treatment I am a million times better than I was then.

                            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


                            • #15
                              Everyone is different....

                              in the severity of their I.C., the foods/situations which cause flares, etc.. That's what makes this condition (although it is recognized now as a disease) so darned complex and hard to treat in an A, B, C sort of fashion. There are so many conditions which are related to I.C., and with all those 'parts' situated in the same area, you can see why most women (and men) search for a long time and go through so many doctors trying to find out what's wrong with them. With some, food is the biggest trigger for flares, but in my case (although there are definitely many foods I must completely avoid), stress is a trigger for an instant flare. If I get stressed or worried about anything, BOOM, I get a flare up. I do home instills, so I'm blessed that if I have a evening or weekend flare, I can go to the frig, get my premixed instill and the 'equipment', run upstairs, lay on the floor and get instant relief. My instills are the 'cocktail' type which are a mixture of Lidocaine, Heparin, Sodium Bicarbonate, and Distilled Water. If I didn't have these rescue instills, along with my bi-weekly office instills, I would be in bed all the time, or in the hospital on a very regular basis. I can function at about 70 percent now. Hopefully, when my new pain mgt. doctor changes my pain meds, or increases them at my next appt., I will be able to go see my parents (car ride is over 3 hours). As it is, even being at the grocery store for more than 30 minutes (something to do with gravity on my bladder) is really pushing it. I am definitely a homebody and haven't been able to work for almost 1 year now. My doctor is going to be checking me for more endometriosis because the pain has increased in the last 3 months and the pain is 'that old familiar feeling' that I will never forget. If I have another laparoscopy, it will be my fifth endo surgery. I just want it out. Endo is like kudzu (if you're a southern know what I'm talking about) is stubborn and if a root (speck) of it is left in your body, it will spead like wildfire. I don't have any female organs left, but was told that it could grow back even if you don't...NO FAIR! Anyway.....there is many researchers are working on helping I.C. sufferers and there is a bill that has been put forth by the AUA (I think this is correct)...for more funds to study bladder conditions and diseases AND for MORE AWARENESS. Every one of us have had to deal with so many doctors telling us "It's not that's just a bladder infection", or "It's just in your head" (One doctor told me this to my face)....before he opened me up and found all sorts of cysts, endo, etc. growing everywhere. JERK!!! Sorry, I tend to ramble on and get off subject a bit, but I don't really have anyone to talk to. I guess the best answer I can give is that if you have a really good I.C. doctor and your pain is managed, you can live a good life. Until they come up with a 'magic pill' or treatment, the best we have are those doctors who really care and the people on this site who help each other through support, advice and prayers. I hope I didn't sound too having a painful day (not awful, but disappointed, because I wanted to go somewhere with my family) and my pain med (although I doubled the breakthrough...dr. said o.k.), is not working. I hope you have a nice weekend and find something relaxing to do. Sometimes, I get out old home movies and watch them for a couple of hours. I usually feel much better because it gets my mind off my situation and makes me laugh, cry (in a good way), and most importantly, appreciate the life I have with my family. I am truly blessed. Oh, by the way, as soon as I can get back on my feet and be able to travel a bit, I want to become a patient advocate. Something good will come out of this....I just know!


                              LONG-TERM SUFFERERS-Do you get worse?

                              This is for some of the long-term sufferers on the board. I'm just really scared, and I wanted to know if your disease progressed over the years, or basically remained at what it presented itself as. Thank you.

                              -Bladder surgery to correct reflux-'68
                              -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                              -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                              -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                              -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                              PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                              -DX'd with IBS in 2000
                              -Rhabdomyolysis in 2001 (has not returned)
                              -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                              -DX'd with TMJ in 2000-wear splint
                              -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                              -DX'd with Epilepsy -2000
                              -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                              -DX'd with Fibromyalgia (2006)

                              Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!