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  • Newcomer

    Hello everyone,

    I live in South Africa, and I was diagnosed with IC about 2 years ago. My uroligist went to live in America soon afterwards, and I just battled on my own since then. Before he left he told me about the IC-network, so this has kept me going. Finding this network is the best thing that has happened to me.
    I have soooo many questions to ask, and I do hope you wont mind helping me with as many as you can, because I feel pretty desperate at the moment, and very miserable.
    Some things on the Network are a bit unclear to me
    and also being in another country doesnt help, as a lot of your IC friendly foods are unavailable to me. And some foods and fruits in your country have a different name in SA so it gets confusing.
    A lot of the recipes on the IC Food channel
    use thing like packet soups etc. What must one look for on packaged foodstuffs to avoid, besides MSG. Lots of cereals have Folic Acid in, is this OK?
    I kept a food diary for about 6 months and seemed to be doing well, but somehow I lost my way. I eat only the most basic things, and have reached a point of being too scared to try anything new.
    Last week I statred taking Citro Soda, which in this country is something one takes for ordinary cystitis, but when I was in so much pain after a week I started to wonder if it was the CSoda, so I looked on the packet and found it contained Citric Acid. Is'nt this a no-no for IC sufferers?
    And can someone tell me what UTI is and what it means? And also what is "Tantrix Sex".
    I think I should end now. Sorry to ask such a lot of questions. And I hope you can make sense of it, it sounds mixed up even to me.

    Lots of love to you all

  • #2
    Welcome to the IC Network. I'm very glad you found us.

    I do suggest you find another urologist to help you with your IC.

    If you go to you'll find a list of medications, along with what they are called in your country. That way when you see a post about a particular medication, you should be able to find out what it's called in your country.

    Citric acid is one of the things that can be a problem for IC. Tomatoes are another big problem. I don't know what they are called in your country, but soda pop (like Coke) is usually a problem for us.

    If you have questions, feel free to post them. We'll try to give you an answer.

    Warm welcoming hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
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    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
      Hi Jacqui--

      Just wanted to add my welcome! I bought the newly diagnosed kit awhile back and I still read it when something baffles me about IC, like a sudden flare up and such. The IC Survival Guide by Dr. Moldwin comes with it, and that is a very informitive book.

      Anyway, for me, citric acid is awful. I think what you were drinking is probably the equivilant to cranberry juice for UTI's here in the U.S.

      Take care, and welcome! You'll find a lot of support here!

      Jess grouphug
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


      • #4
        Welcome, Jacqui!!! I am so glad your doctor pointed you in this direction before he left South Africa. You will find so much support and information.

        Tantric sex... I know very little about it. Mainly I know that the rock star Sting (used to be in the police?) did/does it with his wife. I think it has something to do with long, long, long lovemaking sessions and trying to draw out those moments just before orgasm. Something like that. Someone else may have more accurate info.

        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


        • #5
          Hi Jacqui and welcome to the IC family and the IC Network. Hope that you will find a lot of information here to help you out. Citric acid is a big no no for the bladder, that is one thing I would stay away from if I were you. Anything that is acidic like tomatoes and even a lot of packaged food has things in it that would affect your bladder possibly. The Newcomers kit is a big help, it has lots of information in it and has really helped me out. I have no idea what tantric sex is, I saw it mentioned in a newspaper article and have not a clue as to what it means. I think you will find there are a lot of caring and supportive people in the IC family and will try to help you out as much as they can. So glad you found us, take care Iris hi grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


          • #6
            Hello everyone,
            Thank you for your emails. Why I asked about tantric sex is because I saw it on the IC website at some stage, cant remember where, but it said it might be a solution for those who suffer with IC and find sex painful. Anyhow I shall try find it sometime again. It is so nice being able to talk with people who know how I feel, and what we are going through. My daughters, who are Sharon 30, and Leanne 26, are very sympathetic and soooo helpful when I need help. They are just so understanding. My hubby is sympathetic, but gives the impression that "its all in th mind" kind of thing, and can be a bit impatient. But on th whole I cannot grumble.
            I'm starting all over with the diet control and this time I am going to keep a proper diary, day by day. Will keep you posted.
            Once again, I am so glad I found you all.


            PS I do have another urologist, seems to be nice, he apparently took over from my old one. I guess I just have to get to know him. And he gave me the phone number of someone whom he operated on,(cant remember the op name) and I think I should get in touch with her. Will let you know....


            • #7
              You can find out a little about tantric sex here:

              Really, it's about connecting with your partner on a deep emotional/spiritual level during sex, and doesn't even have to include intercourse, per se. It's more about remaining in the moment and sustaining a level of intimate connection and sensation for an indefinite period of time, rather than making the act of sex have a definite beginning, middle and end. (Imagine if sex had a more meditative, rather than purely physical, quality to it.) It's easier to relax and enjoy the process if you're not so concerned with building up the activity to reach a climax for one or both of you, which is helpful for those of us who experience pelvic floor, bladder or vulvar pain during sex. There is a building up of sensation that occurs but there is less of an emphasis on results than there is in the intensity of the connection itself. Hope that helps -- I'm not sure if I really clarified anything!!

              "You must be the change you want to see in the world." - Mahatma Gandhi

              "The most important medicine is tender love and care" - Mother Teresa

              Proud mother of Ahleia, born on April 9, 2007

              Diagnosed with:
              IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

              Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

              Health treatments/practices:
              Kripalu yoga, Chiropractic, Massage therapy and Reiki


              • #8
                Hello everyone.
                Thank you all again for your messages. It took me 2 hours to find my letter to the message board, and to find your replies. I suppose I will get the hang of it in time, and be a lot quicker. Dont know too much about computors...Poetgirl, thank you for your reply re tantric sex. It sounds very helpful, and meaningful. I will certainly look up that site, but it will have to wait til tomorrow.
                It is 10.49 pm in SA now, so I am off to bed.

                Speak to you all again soon.



                • #9
                  Hi gals, gld you posted about tantric sex poetgirl, that sounds like it would be a wonderful and meaningful experience. Have to check out the web site, glad to see you here Jacqui, everyone take care Iris hat
                  Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


                  • #10
                    I agree, Iris, that does sound interesting. Thanks for posting that, Poetgirl. Jacqui--good question! Hope you are doing well!!

                    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


                    • #11
                      Hi Jacqui,

                      I'm new to the IC network as well. I also have been living in South Africa since September and have been suffering from symptoms for 10 months now, including while I was over there. I am back in the US briefly for a few months, and while I am here I'm trying to get my bladder sorted. I have not yet been diagnosed but am looking to have the diognostic test done within the next two weeks... I'm pretty sure I have it and so is my urologist. Anyhow... Citro Soda is actually primarily Sodium bicarbonate and it is a Urinary Alkaliniser so its job is to make your urine LESS acidic which is usually good for IC patients. I know that it contains Citric Acid but it also contains a bunch of other things that decrease the amount of acid in your urine so it should, in theory work. I found some relief with it actually, while I was there... so much so that I brought a lot home with maybe give it another shot? I'm glad to see someone else on here lives in South Africa since I will be heading back in a couple months. Please let me know if you find a urologist who understands IC. Also the Elavil (Amitriptyline) everyone speaks of on here is actually called Trepiline in SA. I have some and it worked nicely for me! Hope that helps. I miss SA and can't wait to get back.