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My IC Story

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  • My IC Story

    About 20 years ago I started having bladder pain and problems peeing. I went to the urologist who used to give me dialations. Back in those days I never heard of IC. I stopped the dialations because any effects were short lived and it was very painful. Then I got a few UTI's. The rest of the time I had bladder problems my main symptoms were pain and frequency. The urologist said, low grade bladder infection, here are some antibiotics. And it went on like this for years. I believe the antibiotics created a full blown case of IC. I had to wait until I heard of IC to do anything about it. The urologist, refused to believe I had IC. I read up about IC and knew that is what I had. Finally, after feeling very suicidal I told the urologist to please diagnose me in the traditional way for IC. He did and found all signs of IC. Before this he refused to listen. I told him I was about ready to comit suicide. I couldn't stand it any more. Since then I feel the IC has progressed. I was impressed by Dr. Brockoff's excellent article on IC pain and go to a pain clinic. At first they wanted to only teach me how to meditate which I have been doing for 24 years any how. Then they looked into my face and knew I was in high levels of pain and prescribed Percocet and a 10s unit. I would like to urge all people who suspect IC to either get their urologist to cooperate in diagnosing this, or find another urologist. Do not let society's views on opiates effect getting relief from them while monitored by someone who specializes in pain treatment ,or is knowledgeable about this course of therapy. One needn't always take a high dose. The doctor will evaluate what is needed. I also receive DMSO treatments. IC exhausts me and remains totally unpredictable, how long I can sit, if I can lie down, get adequate rest or what. However, having all of you here and this wonderful community in cyberspace makes all the difference in the world. Because of this website I have been able to educate my primary care doctor about IC and family members. Thank you so much everyone and God bless you all for being here. I am sorry that you suffer and that anyone suffers with IC. I hope my story helps someone. The big thing is to first get a proper diagnosis and proceed from there and educate yourself about IC so you can go back to the doctor or urologist with information they may not yet know. And, if necessary find a good pain clinic. My first experience was a long trip only to find some doctor who was going to teach me how to meditate and tried to sell me a book on it. A good pain clinic will have doctors to prescribe adequate medication, physical therapy , etc. Dr. Brockoff said chronic pain left untreated can burn impressions of pain in the spine and the body will keep producing pain. It is important to break this cycle. Don't let anyone, even a husband try to talk you out of getting the best medication for you. The stigma of being on an opiate medication is society's problem and part of the War on Drugs which becomes a war on pain patients. If it is an opiate you need and the doctor has determined this so be it.
    If you keep a green bough in your heart
    the singing bird will come.

  • #2
    Hi Songbird,

    Thanks so much for your post...I totally agree with you about the pain control. I never before have experienced this kind of pain, and, as I told my husband, being in constant pain feeling like you have no relief in sight can fundamentally change you. During the worst part of my pain I also felt suicidal--and that scared me because I have a small child.

    I am wondering who your uro is...I live in Pleasanton but am part of the John Muir (Walnut Creek) network...

    Anyway, thanks for sharing! Susan


    • #3
      It's so sad to hear IC patients who suffer so long w/o any medical help. I hope your pain is somewhat under control. I know if I ever had to resort to pain meds, I would hear it from everyone. My husband teases me now saying I'm a walking Wal-greens pharmacy. At least he sees my pain. Society on the other hand-I won't get started.
      Keeping you and all our IC brothers-sisters in my thoughts,
      Tons of support,

      IC angel helping families in need for the holidays. [email protected]


      • #4
        Hi all,
        Susan I am out in Concord and have Health Net, Hills Physicians. I have a good urologist in Oakland, Dr Karol. Let me know if you want more info or would like to go to him, I can give you his phone number.
        Thanks everyone for your caring.
        If you keep a green bough in your heart
        the singing bird will come.


        • #5
          Thanks for your post Songbird. I am going back to my pain clinic on the 16th of Aug and hubby is p***ed because he doesn't want me on the meds again. I've given it my best. I swore I wouldn't go thru it again but I am. I will find the support that I need here on the ICN and will let my husband find his support where ever he needs it.

          I sure do wish instead of watching a taxi driver singing "gotta go gotta go gotta go" on tv for overactive bladder conditions WE COULD be passing on an even greater message.

          tons of hugs
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


          • #6
            Yes, it is hubbie's problem if he doesn't like the idea of you getting pain relief however you can. SHEESH!!!!
            Isn't that the truth, Teri, that obnoxious ad singing "gotta go, gotta go" in the background. I am going nuts with nighttime frequency lately. Sleep deprived. Just what I need to hear.
            If you keep a green bough in your heart
            the singing bird will come.


            • #7
              Hi all, My first time to post here. I have had IC for 16 years. The first seven were the worst years of my life. I got it right after my full hystorectomy and rectol surgeries back to back when I was 42. Now 58, been there done that. I have endometriosis also and bad colon problems. Tie them all together with acid reflex and they all run into one. My MD did not treat my endo for 7 yrs. so I got some treatments from my uro. He finally said, after 3 times hydro treatments and dmso treatments that all of this pain was not just comming from IC alone so he sent me to gyn He gave me to right med for endo and that helped trememdously. Bless his heart. Well I went in and oout of remission but always had much pressure and peed every fifteen minutes. I knew every good restroom every where I went. My favorite ones Mervyn*s and Chevron stations.. Getting back to the pain by 1 in the afternoon I could hardly go to the kitchen for pain med and I had to hold myself like I was starting labor, I cried a lot and didn*t want to live anymore if this was it. It felt like a red hot poker watermelon was trying to burst out of me. My daughters would come by for me to go somewhere and I would just cry, cause most of the time I couldn*t go. Boy, as my doc told me soon as you feel the pain comming on, sit down now. If I did not I suffered. The onlly worse pain, having my babies and recovering from 2 rectum surgeries. Don*t even mention another rectol surgery to me.. I did want to tell you I have always been constipated. After straining to go, boy do you suffer with IC afterward. Itold my doc it goes together he said yes. Well last Dec. I went to see him and I said I don*t care what you do to me . I can*t livelike this anymore. He put me on 100MG of Elmiron 3 times a day plus DSMO treatments once a week for 6 weeks and I got better and for wome reason I stopped the med. Well by March I was back to see him begging again to take the pain away. More

              DMSO treatments 7 in all and he said don*t get off Elmoron again It rebuilds your bladdar wall. Do you know between it and the DMSO treatments I feel human again? Take my advice take your medicine.. And now for Elmoron, It does not thin my hair. My vitamins I guess are helping that cause I have thyroid problems too and that thins your hair. But here is what it does to me. Takes taste buds away and makes me sleepy. Just my opinion. (But my fibro and artheritis make me very tired also. And yes I am not a spring chicken. I get spurts of energy say around 7 at night.. I do most of my work then. (Not Morning Person at all. )Well bet you guys think that*s enough. Just wanted you to know I have a really sweet hubby, 3 daughtors and 7 grandkids that I am very proud of. TAke care and please if I can help anyone of you with anything please let me know. I love doing it. Sher from California (Sherry Gustafson)
              Sherry Gustafson


              • #8
                To Sherry: Welcome to the IC Network family. I'm very glad you found us.

                I'm glad elmiron helps you --- I have heard that it's one medication you need to keep on taking if it's effective. Some have reduced their dosage after being on it a long time, but most people get their symptoms back if they stop entirely.

                Sending welcoming hugs,
                Stay safe

                Elmiron Eye Disease Information Center -
                Elmiron Eye Disease Fact Sheet (Downloadable) -

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help:


                Diet list:

                AUA Guidelines:

                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


                • #9
                  Thanks so much for sharing your story! I'm so happy for you that Elmiron and DMSO is helping you! I know all those emotions you describe and how wonderful it is when you start to feel well again! I also take Elmiron and it's helped me tremendously. I have no plans to go off of it until they find our cure or even better treatments.

                  I hope you keep visiting the boards, my friend. And hope you're having a symptom-free day.

                  Melanie J.
                  "The sun shines not on us, but in us." John Muir

                  Living a happy life in spite of IC!


                  • #10
                    Welcome to our ICN family
                    Your story is very similar to mine. I too had a hysterectomy (left in ovaries) and woke up from the surgery with bladder pain. The gynecologist that did my surgery did another 9 surgeries over the course of 17 weeks trying to get rid of the pain. I am shocked that I would ahve ever agreed to so many procedures expecially because I had general anesthesia for all of them. Obviously I was desperate! I would have done almost anything to get rid of the bladder pain
                    Fortunately I was referred to an excellent urologist who did a variety of tests to determine what was causing my extreme pain and frequency. The cystoscopy showed that I had Hunner's ulcers and I also reacted positively to the Potassium test - so I was diagnosed with IC.
                    That was almost 5 years ago, and since that time I have travelled all over - trying to find a cure for the pain. I have done pretty much every treatment that there is and have found that pain medication is the only thing that has allowed me to continue with some kind of a life.
                    FYI - 3 years ago I had an appointment with Dr. Lowell Parsons (he is the doctor who works with the company that makes Elmiron; I am not sure if he still works for them)When I first saw him I had been taking 100 mg. of Elmiron 3 times per day but without much success. He changed my dosage to 300mg three times per day =900 mg per day and added Atarax (antihistimine)25mg at bedtime. I then heard him speak a few months later and he was advising the ICer's there that 300 mg of Elmiron ae probably not enough for most people and that Atarax should be added to get the most benefit.
                    Sher, I am giving this information to you only so that you can discuss it with your doctors - so that you know you are doing all you can.
                    I am thrilled for you that you have found some medications that are helping. After reading your story I felt so lucky to have been diagnosed so quickly. I think the worst thing that can happen to people with IC - is for us not to be believed and told that it is "all in our heads" and instead of a referral to a urologist they want to give us a referral to a psychiatrist
                    "You are not alone"


                    • #11
                      Hi Dianna thanks so much for your reply. I wrate down about the meds to give to my uro the 30th. If only I had this years and years ago It would have been so different. I*m so glad yout t see that very special dr. to tell you more about Elmiron and Atarax. I have been looking for a support system for years. The closest that I got was a bladdar meeting of about 16 members and everyone of them ,except a couple, didn*t even have pain they just couldn*t wait ti hit the bathroom like me. No one knows the pain we go through especially if you have endrio and colon problems along with it. I am so glad I fouond you guys. We really need each other. I really know the Lord knows how toput the right people together. I just need more patience. But with IC you run out of patience, at least I do. Talk about working on your nerves. It feels like it is wrecking every nerve in your body. Thanks again Dianna and I will stay here. Hugs, Sher
                      Sherry Gustafson


                      • #12
                        Hi Donna and Melanie Thanks for the welcome. Yes I have learned my lesson well. Remember Rickey Nelson. I like that song. I won*t stop taking Elmiron and DMSO when meeded. I use to try to save money and stay away from doc. Honey, that doesn*t work. What good is money if you don*t have your health. Yes I think I have fouond a home here I think I will pull up a chair andf stay awhile. Thanks, Sher :cool:
                        Sherry Gustafson


                        • #13
                          Good evening, and should I say good luck!!! I have been a sufferer for 18 years, since I was 18 years old, probably longer but I did also have alot of bladder infections in my younger years. It took me over 6 years to be PROPERLY diagnosed......and I cannot count all the doctors I have seen....on-gyn, internist, general practioner, urologist...the only one missing is the psychiatrist, and that was suggested, but I did know one thing, crazy I was not, in severe pain, yes. I found a my urologist I see now after moving to a new city, Nashvile, seeing a gyno, and him being unable to make my infections and pain go away...a smart doctor will look for second opinions, or a doctor that can and will help you. My uro was newly out of medical school, and he was a great choice, I was diagnosed within 14 days and on my way to treatment, yes it took a while, but it was worth it. I was his 2nd IC patient, and now he treats over 200 in this area. I have all the faith in the world with his advice and treatment. You will find not only do people in the street not understand, your family and friends will be worse...the majority of medical staff I have had contact with either have never heard of it, or think it is a " disease in your mind more than in your body. I have been through it all, and all I can say is " HAVE A GOOD OPEN POSITIVE RELATIONSHIP WITH YOUR DOCTOR, HE WILL BE YOUR BEST FRIEND" if you do not feel this with your uro, be sure he is right for you!!!!!! Feel free to e-mail me anytime you want to [email protected] ....and good luck.... :p