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LONG-TERM SUFFERERS-Do you get worse?

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  • #31
    I was diagnosed in 1994 and I have to say that I have definitely gotten worse. Maybe because I'm pre-menopausal? I don't know, but definitely have gotten worse, sorry...


    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!


    • #32

      alot of people do say they get worse.


      • #33
        Keep in mind, too, that folks with IC who improve a lot don't usually stick around here to post. They no longer need the support and are off doing other things. So you are more apt to get responses in this thread from users who are still searching for answers, looking for support and researching new treatment options, etc.

        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


        • #34
          I agree with Kim!!! I continue to visit to share my experiences with others in hopes that I will help someone, maybe even a few every so often. I feel it's important to share what I've learned too, when I was 1st diagnosed I was as lost as all the newbies are now!

          [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"


          • #35

            I really appreciate you and all the ladies sharing there Praises and Struggles. THANK YOU


            • #36
              does IC progress

              Hi all,

              I have had IC for almost 5 years and I felt so scared when I first was diagnosed. I haven't been on the site for a long time and like VM pointed out - I am one of the people feeling better and so not posting as much.

              Just wanted to let you know that it does get better. I had a year of ups and downs and fear and pain. I was on this site constantly. I felt very alone. But, all of these wonderful people made me feel comforted and many gave me hope with their words of experience and encouragement. Good luck to you and may you find what works best for you.

              Be who you are and say what you feel, because those who mind, don't matter, and those who matter, don't mind.
              Dr. Suess


              • #37
                What is MSM?
                I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.


                • #38
                  I was diagnosed in March 2006. I have not had IC long. During the past year I have had 1 major flare up. I did a bladder hydrodistention again and it calmed my bladder down. I also take my medicines and begain on Elmiron about a month ago. I do not know if my IC will get worse. I enjoy my life while I feel good because I kow how bad the bad days can get. So far my IC has been manageable. It is hard to accept that I have this disease. But I cannot change my bladder.

                  I hope that you find the treatment that works for you. And as always, I continue to pray that we all have a cure one day soon.


                  • #39
                    Definitely true that people that feel good do not post or read the site often.
                    I am a perfect example. I do not have bladder pain or very very minimal - mostly urethral symthoms (urgency and some burn). I am completely healthy otherwise. So when I have no symthoms I do not read any posts. I was in remission for 2 years - in which I probably did not visit the site even onces.
                    The symthoms came back in January this year and I have blocks of good days and block of bad days.
                    This time around, very little bladder issues, the burn is minimal but the urgency is worst. Frequency is more then normal - I do not go to bathroom more then 8 times a day max - I guess I can hold a lot.
                    So I would say it did not get worst but different.

                    NOTE: IC never confirmed. Cycto w/hydro negative. The doctors thing it is some kind of urethral IC. I am on strict IC diet. Taking supplements.


                    • #40
                      Does Ic Progress?

                      I believe my Ic has progressed purely because I was not diagnosed after three years later when my symtoms first started , going from specialist to specialist nobody knew what I had. At first I only had frequency, the pain came two years later. If i was diagnosed early I believe in my heart that most likely I would have not suffered the pain. I didnt know what I had so I was eating and drinking all the wrong foods and still was smoking(a big no no) I was pouring acid onto wounds basically. Now I am trying different treatments to treat the pain, I am getting there but slowly.
                      Formerly lorenab


                      • #41
                        long term sufferer

                        yes , I have gotten worse ! I am relying more on pain meds and doing less of what I like . The flares are more frequent and last longer
                        home installations
                        urelle as needed
                        ultram twice daily
                        vicoden as needed
                        ambien at night
                        clariten in morning


                        • #42
                          I agree with the idea that IC symptoms sort of "waxes and wanes." I can go through a 6-9 month remission, but then a flare will occur, which brings on the old, and also new symptoms - which drives me nuts - but there ARE good days, which can be hard to remember when you are in pain and running to the bathroom 20X a day!

                          When I am in a remission I don't use the message boards as much, either. THANK GOD they are here, though!

                          IC diagnosis 1999
                          Meds: Elmiron
                          hydroxyzine hcl
                          DMSO as needed
                          valium as needed
                          librax 3x day

                          TENS therapy

                          Thanks to all on the boards - YOU have helped more than I can say!

                          A person's true wealth is the good he or she does in the world.


                          • #43
                            I think I was in remission in the second grade but now I am much worse. Hahaha. That second grade part must sound ridiculous.
                            IC Awareness


                            • #44
                              I'm sorry to say I,m worse.
                              "Never Give Up."

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

                              My Photobucket Link:


                              • #45
                                not so in all cases

                                I have been in remission for 6 years and my life has returned to normal; however, I still post, am active in my local support group and take phone calls from people who have IC. Since going back to work I cant do it 24/7 but I would never stop helping other people, pretty selfish if one does that.