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LONG-TERM SUFFERERS-Do you get worse?

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  • #16
    IC did progress over the years for me, but a reminder, I had no treatments due to doctors could not figure out what was wrong. When finally I was diagnosed my bladder was already damage severely.

    I do believe if doctors knew what they know now my bladder would not have gone this bad. Getting treatments early when the IC start I think you might have a better chance.

    The battle of toughing it out or having surgery is a constant battle for me. I wish it was a easy decision to make but it is not.

    Hugs, Trishann


    • #17
      My IC has changed over the years, usually rather slowly. I keep throwing new treatments at it as they become available. I'm better than I was 25 years ago, that's for sure. I understand more about my body and how other problems inter-relate, which helps with management of IC.
      IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.


      • #18
        I am in the minority of it getting worse. I had IC ever since I was born, my mom always told the dpoctrs that I peed all the time, but they just told her I had a small bladder because I was small in size. By the time I was diagnosed at age 22 I was pretty bad off. This was back in 1978, way before they ahd all the treatment options they have now, so after trying everything available at the time I had to get my bladder removed at age 30. I was told after the suirgery that I had no choice, it had to come out as it was no longer a bladder. Once I had my bladder out I was finally able to live the type of life that I wanted to. I raised two sons, have been married to my husband for almost 29 years, been able to work, and do just about everything I wanted to. Judith


        • #19
          I vote for taking all the profits from the stupid erectile function and work on a pain free For IC......

          'The will of God will never take you where the Grace of God will not protect you.'


          • #20


            • #21
              I would say mine has gotten worse after the years, more pelvic pain issues.Hugs Sandra
              "Never Give Up."

              To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

              My Photobucket Link:


              • #22
                I had IC symptoms for 8 months when I was diagnosed. After hydrodistention and a few months of medications (amytriptyline and hydroxizine) I went into complete remission for nearly 4 years. It came back in November, so I guess you could say it got worse. I was in an awful state of denial and depression when it came back, but then I started thinking more positively, upped doseages/tried new medications, and I feel a lot better than I did in November!

                I think that as long as you catch IC and try to interviene before it toally rips your bladder to shreds, you have a good chance of getting better, or even going into remission.

                Unfortunately a lot of the ladies (and gents) here had to go to many doctors to get a proper diagnosis, and therefore missed out on a lot of treatment.

                19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
                My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
                My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
                Start of IC symptoms- Summer 2003 (after a UTI)
                Dx- February 2004, after hydrodistension (ouch!)

                Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

                Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)


                • #23
                  I think it depends upon the person. I'm grateful for the last 2 years & especially for the last 8 months that ALL my health conditions have been in remission!!! I hope & pray everyday that it continues long term however I am not counting on it to be safe!
                  [FONT="Comic Sans MS"]
                  Medically diagnosed Post Menopause 9-13, unsure for how long! Have: IC, IBS-C, arthritis, carpal tunnel, hypoglycemia, RLS, seasonal sinusitis, depression, anxiety, infertility, hormone imbalance.

                  Please read Screaming to be heard by Dr. Elizabeth Vliet. I do deep cleansing breathing & relaxation morning & night along with doing Yoga everynight now, it's been a huge blessing for my body! Born & raised in Michigan, relocated to Oklahoma in 9/09. Please Don't stop anti depressants or mood stabilizers "cold turkey"!


                  Jen Meier Cascaddan on Facebook

                  Married for 21 years, have 2 cats that are my "boys"


                  • #24

                    You have a great outlook. Thanks for being positive.


                    • #25
                      Mine has gotten worse, but it took 3 doctors and 6 years before they all figured out what I had!! Finally the last doctor said that it could be IC but that I was too young for it (I was 32 at the time). Also at that time, they said there really wasn't anything they could do, except the DMSO, my doctor at the time, when I mentioned the diet, said that it didn't matter as it doesn't help.
                      Since then, he has retired and the doctor who took his place is WONDERFUL! even went into remission for 5 years, with just being on Elmiron. Recently, though he sent me to see another doctor who is an expert in IC, but even, this doctor said he couldn't really help me except with the frequency, (we talked about the interstim (but I'm high risk due to my heart valve replacment and my cardio doctor won't allow me to be off my coumadin for that long). So, I'm going back to my other Uro, who I like better and since I'm having problems again schedule another Hydro.

                      But, just remember, whoever started this poll, IC doesn't usually progress, but I guess I'm one of the rare ones as well. Oh, well what can I say??


                      • #26
                        Just wanted to post and say that there are lots of people who are not on this forum and are doing well. I never thought about that when I first visited these forums. Some of those doing well do not feel the need for a support forum hence you will not hear their success stories.
                        I have read that IC can progress a little in the first 18 months and then plateaus.
                        In the minority of people whose IC progresses, quite a lot of them have been undiagnosed and without treatments. Of course we are all different and IC has so many components that there isn't one treatment that works for all. Ie some have a lot of allergies and mast cells etc, others have inflammation, others have co-inciding UTIs, some have pain as their main symptom, others have frequency or urge or others have a dull pressure or ache.

                        I had IC symptoms for 2/3 years before diagnosis and after diagnosis did a lot better as before I had no idea why i had spells of frequency and would get very anxious and this would in turn make things worse.
                        after diagnosis, I found a IC 'tool kit' which is one of the best things I learnt from this site - things to do when I had a flareup.
                        My IC toolkit consists of pyridium, painkillers (this helps the pressure and urgency for me too- don't know why! only discovered this when I developed pain), heating pad for urgency (thought it was for pain but is a godsend) and urethral spasms, bicarb of soda in water and prelief with non recommended foods.Used to take ditropan when needed but now take it daily.
                        The diet also helped me correlate flareups with diet and this has been very helpful even though i developed a lot of diet sensitivty later on but cutting out caffeine and alcohol and tomatoes helped flareups immediately.
                        After diagnosis and treatment - cystistat, Elmiron and ditropan was doing very well with little frequency at all and was the best I had been for years.
                        IC diagnosis: Aug 2005
                        Symptoms: Urgency, urge and irritation and urethral symptoms
                        Flareup for 1 year til July 2007 (had constant urge and pain et al....)

                        Elmiron 100mg 3x daily April 2006 - present
                        Enablex 7.5mg nightly Sep 2007 -present
                        Atarax, Elavil 10mg nightly (Dec 2007)
                        Acupuncture - November 2007 - present

                        (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)


                        • #27
                          My IC seems to play with my head. Sometimes I'm fine, and I mean like I can drink coke and eat a taco fine. Then there are times when I hurt so bad if I even THINK about eating a taco I have bladder pain. I can't say mine has gotten worse, or waxes and wanes.

                          I've had to play with my medications a lot to get to where I can function somewhat during the day. I had a really bad spell last week with my kidneys and bladder, but I'm still not totally sure what caused could have been stones, it could have been severe referred IC pain, or it could have been Lupus related.

                          Most people sit somewhere in the middle....we don't really get "worse", we have flares and some flares are worse than others.

                          I hope that helps. I remember being where you are right now and I was scared out of my mind. It's a really hard thing to be diagnosed with an incurable, chronic, painful illness. I wish you the best. It's very important to have a good uro that you trust, pain management, try physical therapy if you can, try all the treatments available, and most of all, try and keep your chin up because stress only makes the bladder more angry than it already is.

                          Take care, Sandy
                          *IC-- Summer 2004; PFD--October 2005
                          *Fibro--Fall 2000; CFS-- Fall 2000
                          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                          Total Abdominal Hysterectomy--adenomyosis--9\08

                          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


                          • #28
                            Better or worse

                            I don't believe my IC got worse but I did get more illnesses that are related to IC so I feel my pain is worse. It's not really coming from the IC but from the PFD.



                            • #29
                              My ic symptoms were pretty much the same for 32 years. My ic got worse after that point and has progressesd and worsened in the last 3 years.



                              • #30
                                Mine goes back and forth. It has only gotten worse 1 time in 3 years.