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Hi, I am new here and I wanted to share my story and ask some questions

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  • Hi, I am new here and I wanted to share my story and ask some questions

    Hello everyone,

    My name is Tina and I am 24 years old. Married for almost 2 years this May and have an adopted child on the way.

    I had a cystoscopy/hydro distention last April and was diagnosed with IC. It has gotten worse and worse and no meds. seem to be helping me. I just had my second cystoscopy/hydro distention on March 21 and am not doing very well at all. I received some bad news. My dr. told my husband that I have a small bladder only 100 cc, I have a severe case of IC and that there are only a few more meds. to try and then she will have to remover my bladder. I wasn't awake yet, so I didn't get to talk with my dr. about any of this. I have cried and cried, I am only 24 years old and I have to worry about having my bladder removed and worry about having to cath myself for the rest of my life.

    I just found out about the IC diet from a friend who believes she has IC also. My dr. never told me about any diet. I go to the Cleveland Clinic the #3 best hospital for urology in the world, why did I never hear of this diet before?

    I am so happy to have found this board, I have been reading all the post and all of you sound so much like me. I feel I have people to talk to now that know exactly how I am feeling. It is tough having to void every 15 minutes of my life. It ruins my everyday living and is hard. Like I said we are in the process of adopting a newborn baby boy and I am scared to death. We have been in the adoption process for 16 months and they have finally found a baby for us and now I find this out about my bladder. Maybe someone can give me some advice about having IC problems and raising kids.

    I also have Endometriosis, I was diagnosed with that at age 16, I have heard that IC women with Endo. tend to have IC too. I was wondering if anyone has endo. too?

    One more question (sorry) Has anyone ever tried Neurontin? That is what my dr. is having me try 300 mg. 3 times a day.

    Thank you so much for reading my long story. I hope that you can give me some advice or just support. I believe in the almighty God very much and I will say a prayer for all of you who suffer from IC. I know how awful it is.

    Love, Tina

  • #2
    Welcome to the IC Network. You'll find a great deal of information and support here.

    You didn't mention what treatments and medications you have tried. If you look at the Patient Handbook at you will find there are many, many treatment alternatives.

    Diet can be extremely important and I suggest you immediately eliminate all of the potential trigger foods listed in the Handbook. You may find relief from your symptoms just by changing what you eat and drink. And when you purchase ready-to-eat foods, I can't emphasize enough how important it is to read the labels.

    If you just had a hydrodistention under anesthesia in the hospital less than a week ago, you may still see some benefit from the procedure after you have a chance to recover.

    Have you been checked for infection? Any time we undergo a procedure requiring a catheter, we are at risk for infection. I keep home test kits on hand at all times. Azo puts one out and they cost about $10 for 3 tests. When I am feeling irritation, I do a test --- and if it tests positive, I call my urologist.

    If you have questions, feel free to post. We aren't urologists, but are happy to share our own experiences.

    Warm 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


    • #3
      I'm so glad you found us. There are many treatments to try and most of us manage to find a combination of treatments and lifestyle management that keeps the symptoms under control. Having your bladder out is an absolute last resort and there are many things to try before even considering having your bladder out. Out of the few who have had their bladders out, some are helped by it and some are not. Believe it or not, for some the pain and irritation continues even after having their bladders out. This is a difficult disease and it is a learning process to learn how to deal with it. But, believe me, there is life with IC, and there are lots of treatments to try (many of which your doctor may not know about and may not tell you about). So the first thing to do is educate yourself about the disease and its many treatment option. Congratulations on your new baby. That is very exciting. I know you are going to enjoy all the wonders that brings.


      • #4
        Hi and welcome with a hug!!!!!!!!! I am sorry you never heard of the diet print it out and give it a shot. I find that is what helps me the most to battle this disease. I am a mom of a twelve year old and I was not diagnosed till he was ten. Basically he has been growing up with a sick mom and I find it has made him a more compassionate child. When I was first diagnosed I did put him in a support group for kids with sick parents. The therapist told us he was the most adjusted child in the group. I think he just accepted it and that was that. Children are great and congrats on your baby. Any help or questions you need answered we are not doctors but alot of us have suffered many yours and can offer their experencies. God Bless


        • #5
          Hi Tina,
          I'm so sorry IC is causing you such pain! We can all empathize. It would seem to me that having your bladder removed would be a very last resort. Maybe you should consider changing urologists or at least getting a second opinion from another one. I've been on Elmiron for four months and it is finally helping me. Elmiron is thought to coat the bladder and takes about 3 to 6 months to work. I also take Pyridium Plus for flares; however, in the beginning I took it for two weeks straight twice a day to get the spasms, pain, pressure and frequency under control. I'm mentioning these things because you didn't say what you've tried so far. Also, you might get Bev Laumann's cookbook "A Taste of the Good Life," which not only gives you recipes which are bladder friendly, but also explains why the foods listed on the diet are harmful to your bladder so you can understand it better. She has a lot of info about IC in there. I know all this seems overwhelming right now with a 2-yr. old marriage and a baby coming soon, but with the right doctors and medications and good information, I think you can find a way to cope with the IC. This message board has been a Godsend to me and helps me not to feel so alone with a condition no one else seems to understand. You can do this! Hang in there. Kat


          • #6
            Hi Tina, I still cry sometimes, but I also have found INCREDIBLE relief from being with the people here at ICN. Ask a million questions, and then ask a million more. I don't have any experience with the Cleveland Clinic, but you may want to browse the Patient Hanbook section where they have doctors listed who are expecially interested in should get a second opinion if you don't feel that who you are with is helping you. IT took me two years of fiddling with medications and supplements to come up with the treatments that help me.

            Give yourself a month or so to "heal" from the hydro...if your capacity is that small, they may have tried to stretch you and couldn't. A good question for your doctor. It can take awhile to feel better.

            CONGRATULATIONS on your adoption! PLEASE let us all know when you get your baby! That kind of news brings a smile to everyone who visits here!

            Hugs Love and Hope to you! Julie B

            [This message has been edited by Julie B (edited 03-27-2001).]
            Julie Beyer, MA, RDN
            IC Dietitian, Patient Advocate, Speaker, & Author

            Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

            Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

            You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

            ........ ........

            Other IC Diet Resources:

            IC Diet Webinar
            IC Diet Website
            For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
            Free IC Diet Booklet: What Can I Eat?
            Confident Choices IC Diet Blog
            IC Diet Newsletter

            *Let's Connect!*


            • #7

              I want to welcome you to the ICN and let you know that your are NOT alone with this disorder. I am a patient that had endo, vulvar vestibulitis, and IC. Often these three conditions are seen together. At first the doctor only suspected vulvar vestibulitis and endo. The IC was diagnosed after a complete hysterectomy. I am 37 and never had children but I don't regret the decision to have a hysterectomy because the endo was making me so sick. First let me assure you that diet, caffine, etc play a big role in symptom control. I would exhaust every option and get two or three IC expert opinions before removing the bladder. With the diet, immediately get rid of ALL caffine (colas, coffee, tea) everything. Second, this may sound hard to believe but it is critical that your colon be as empty as possible. Why ? Well, most IC patients also have irritable bowel syndrome. As my urologist at Emory explained, if the colon is empty less pressure is put upon the bladder. Often the need to void comes from the colon pressure. Here are the instructions that I was given:

              1. Take one Senecot tablet on a weekend and stay near a bathroom. This will clean out the colon. That evening give yourself one fleets enema. This will cleanse the colon and get you ready for the bowel management program.

              2. Purchase citracil and mix in water twice daily (morning/evening) and drink. Or go to Wall Mart and get a product called Perdium and follow the instructions. Drink plenty of water. The object of the game is to have one to two bowel movements a day.

              3. Repeat step two every day without fail. Any constipation will aggravate your IC ten fold. Even if you think that your "regular" follow this regiment. It is the only thing that is helping me.

              Another thing to try is a supplement called MSM. This product can be found at any GNC Health food store. It is an anti-inflammatory and acts like commercial DMSO. DMSO is often instilled in the bladder but MSM can be taken in capsule form and I believe it is helping me.

              Do not drink any acidic drinks. That means no orange juice, lime aid, cranberry juice, or wine. Stay away from all nutra sweet, aspartaime, equal, etc...

              3. Elmiron is a medication developed for IC. It may or may not help but give it a try.

              4. Keep a chart of your voids. At my worst point, I was up 8 times a night to void. Now through diet modification, Elmiron and hydroxine -- I get up maybe once at night.

              5. Educate yourself about this disorder and stay on-line with us. You will learn more on this board than any medical doctor.

              6. Exhaust ALL OPTIONS before removing the bladder. I mean ALL options!!

              7. Never take just one doctors opinion about such a radical surgery as the removal of the bladder.

              8. Finally, this is not an easy illness to have but honey you do not walk alone in these shoes. Right now, an estimated 700,000 American women, men, and children suffer with IC. Until only 20 years ago, doctors thought IC patients were "crazy." However, they now realize that the bladder lining and colon play a major role in the development of the symptoms.

              9. Raising a new baby with this illness will not be easy but God gives strenghth in the performance of miracles.

              Hugs from Georgia,


              • #8
                Tina, I had my bladder out when I was 30 and at the time my kids were 2 and 4. I was diagnosed at age 22. I had a very positive outcome with the surgery. Having my bladder out actually enabled me to have an easier time of raising my boys. I hope you dont have to have the surgery, but I want you to know it not the end of world! There is a lot of web sites for folks with ostomies. I hope things improve for you, but if they dont I will be happy to talk to you about the surgery.


                • #9
                  Welcome to the ICN TINA
                  I am 50 now and know that I have had IC for all of my life. I raised 2 children with it, not knowing that I had it~thought everyone peed 30 times a day and lived with abdominal pain, just thought it was part of being a girl I was divorced when they were very young and was able to hold a full time job with lots of overtime, still not knowing that the way I felt wasn't 'normal'. Infact, my co-workers had all the latest potty jokes ready just for me. So, WE CAN raise children with IC. Sure, it would be nicer not to have to, but there are many many of us who have done it and didn't have a clue that we were doing it. There was always an opened bathroom door policy in my house so that I could hear the kids, or they could come and join me. It's tuff, but it's possible. Plus, the joy that new baby is going to bring you is going to keep you too busy and too happy to stay stuck thinking about IC.

                  Just because you go to a great hospital or a great dr doesn't mean the greatest care. WE have to educate ourselves and DEMAND the care and that's the hardest thing I have found in dealing with my IC ~ demanding proper care.
                  With proper treatments, your bladder could expand. I know that mine did. So, there is always hope, no matter how hopeless it seems, and we can never ever forget that.

                  You are in the right place here on the ICN. You will never find more caring or wonderful people than there are here. Right now, it's so important for you to get your feelings out. Put them on paper, push the submit button, and start to loose some of your fears.
                  It works. It really does. Takes time but I'm a firm believer that we are as sick as our secrets and once we get those feeling out, we can start to heal emotionally.
                  Again Tina, WELCOME teri
                  Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


                  • #10
                    Just wanted to add my welcome!

                    We are so happy you found us and that you finally know about the IC diet! That helps a lot of people and they don't need meds. It really helps me when I follow it strictly.

                    Congrats on your adoption! My husband and I are also in the process of adopting. Should know withing the next 2 weeks when a baby is coming to our home. We are so excited!!

                    Let us know how it goes and when your baby comes.
                    Warm hugs,

                    "Faith precedes the Miracle"


                    • #11
                      There is a chance that your endometriosis is causing your bladder pain by being attached to the bladder wall. Since I probably had endometriosis when I was young, my urologist told me that he'd had one patient for whom this had happened. To determine if this is the cause, a Laproscopy must be done. Two small incisions are made in your stomach and a scope inserted. This is day surgery. Also, hormones in the form of the birth contol pill may be tried to see if they lessen symptoms.