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  • and scared

    I have been having major bladder/urethra problems for a few months. I am going back for my second urologist appt tomorrow. I have been crying all morning because I thought I would be better by now. I went for the first time 6 weeks ago and the dr put me on Levbid for spasms and low grade antibiotic (macro-something). I have had uti issues for most of my life, especially after sex. I actually thought that had gotten better because, for the last couple of years, I make myself go right before and right after sex. 2 months ago I had what I thought was a uti that just wouldn't go away. The dr hasn't officially dx me with IC but mentioned it the last time and I'm pretty sure she's going to tell me that is what I have when I go to my appt tomorrow. Some background info on me: I'm a teacher and just started summer vacation this week. (I'm am overly conscious of my poor grammar and run-on sentences right now, but I'm crying so hard I can barely see the computer screen). I am also a newly-wed (married 10 months ago) and have only had sex with my husband about 3 times in the last 6 weeks. I feel completely depressed and I feel like I've turned into dead-weight. I am so high maintenance because of this illness. My husband has been supportive but I don't think he really thinks this is going to be a life long issue. I haven't mentioned IC to him because I wasn't officially given a dx yet. I am so terrified right now and I feel like I can't even leave the house sometimes. I haven't slept without taking ambien cr for over two months. I know I am now dependent on it. If I don't take it I just can't function at all the following day. I've been on zoloft for a few months also because of the depression. I dont' know if it's helping or not. I feel like giving up and just staying in bed but my husband is so active, I'm scared to death that he will fall out of love with me because I can't do things. I'm so sorry to sound like a cry baby. I am so disappointed in myself and I'm afraid everyone else is disappointed in me too. My friends just don't call me like they used to and I know it's because I just don't behave the way I did before. I don't have the energy and enthusiasm for life like I used to.

  • #2
    forgot to mention my urine culture was negative when I went to dr 6 weeks ago but she gave me antibiotics to take daily to prevent uti.


    • #3
      Life will get better!

      I am a teacher too and I was diagnosed in October. I was told that I have a moderate to severe case and my bladder only hold 450cc under anesthesia. I was scared out of my mind and cried every single day. I have two young children and I didn't know how I was going to function as a teacher and a mom. I have responded to treatment and am doing so much better but I am by no means "over" this. Yesterday was a bad day for me and I sat and cried. I do have to follow the diet strictly and take 4 meds...but my life is better. Of course I am praying for a remission and a day that I can cheat on this stupid diet. Hopefully you will be diagnosed soon, you will receive treatment, and you will be feeling better physically and emotionally!!!



      • #4
        Not a teacher, but a nurse(and was a school nurse too so some of my best friends are teachers )and the mother of a 6 year old who is autistic. I have felt high maintenance at times and sometimes things are frustrating. Things are ok most of the time though and I still work full time.

        (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

        [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
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        I have learned all about life in 3 words: It goes on! :D--Robert Frost
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        "Spirit is an invisible force made visible in all of life"--Maya Angelou
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        • #5
          newbie too

          Mother of twins, one with IC also, age 11. For me, symptoms since age 15, not diagnosed with IC till age 40. I think it's great that you will know so soon after having these symptoms, some go decades before finding out. The bright side is, there are hundreds of people here to help you with new ideas for new meds and herbs to try. Dont let IC get to you. There are many people with much greater dissabilities. I think it could actually be a great teaching tool for how to overcome what life throws at you. Currently I am on Elmiron and deterol. Not helping much but some. Ibuprofen was my pain med of choice for a while till I had a suggestion from the chiropractor to try "oil of oregano". I take one pill in the am, one at night and need no Ibuprofen anymore. Don't be afraid to make friends here and try new ideas. The tips on the IC diet will also help so you dont eat those trigger foods and start the ball rolling in the first place. Stress also plays a huge part so if you can lift your chin up and take a new view on this whole thing it will help you out so much. Educate those around you about your IC, dig in and find out more about it. Make it a challenge, not an obstical. Excuse all my spelling errors, lol. Good luck.
          Leanne and Kelsey

          My symptoms started age: 15
          Have had re-occuring bladder inf. some positive, some negative. Years of unnecessary antibiotics.
          Finally diagnosed with IC age: 40
          I work full time and I am a mother of 6 actually, twins of my own and 4 children from my husbands first marriage. He has a set of twins also age 10. All together 5 girls , and one boy

          Daughter age: 11 years old (one of twins)
          Diagnosed with IC in May of 2007 after I finally convinced the doctor that her syptoms were like mine. Doctors don't think this happens in young children. Cysto and Hydro showed she has IC.

          Elmiron- 3x a day (dont think it's really working)
          Deterol- once a night every other day
          Trying Oil of Oregano- suggested by chiropractor
          (50 mg, twice daily) (has taken my pain away, no more need for Ibuprofen)


          • #6
            Hi AHJ,
            Another teacher here. I got IC 4 years ago this summer. Briza is right, the first year is the toughest, but as you learn your dietary triggers, modify your diet, and get your treatment plan together, it gets much easier.
            Four years ago, I could not walk without pain, could not sleep longer than 20 minutes at a time, was voiding 60+ times a day, could not wear pants (only loose skirts) & have no idea how I managed to work.

            Today, I work full time without problems (have not over-run my sick leave this year, knock on wood-2-1/2 weeks left), wear jeans, exercise, drive comfortably, use the restroom every few hours without stress, sleep through the night with only 1-2 wakeups to go to the restroom. I still have flares, but they are much less frequent & I hope to get better still. Most of my days are pretty good.

            Before trying any alternative medicines or herbs, I really recommend the diet. It has the greatest success rate of any IC treatment (86% of patients have improvement by following it), no side effects, no extra cost. All the medicines I use would be worth nothing without following the diet. Eliminating bladder irritants allows the bladder to heal & medicine to work.
            Here is a link to the diet. Become a label reader when buying groceries (it's shocking how many foods have irritating preservatives in them)!

            Stay hopeful. It is possible to be very sick & then get better. Hang in there.

            Sending a hug & pm me anytime you need, okay?

            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.

            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest

            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!


            • #7
              Hi, my name is Samantha and I am in much the same situation as you. I had IC first diagnosed about 11 years ago but had great results on Elmiron for the first 5 years. I had to diet to some degree but things were looking great. I have been off all medication for the last 6 years and pregancy and breastfeeding put me into remission. Now that I am no longer breast feeding my symptoms have returned in full force and I am just not coping. I have been on Elmiron for 9 weeks now with no much result and I am scared out of my mind. I feel I have nothing that is fun in my life only misery. My physical relationship with my husband is suffering because I just feel so infected. Its not so much pain for me as most describe it but a feeling of infection and I cant even seem to locate where it is anymore. Sex with my husband is just out of the question because I feels like my urethra and whole sexual area is infected and I am sooooo sick to death of it. Just when I think it may be a bit better it comes back to diappoint me. I dont see my friends anymore because I feel so insociable. I cant even enjoy a glass a wine or go out to dinner with my husband or friends. My husband says dont worry youll get there again like last time but Im not so sure and I spend every waking minute terrified so dont worry your not alone. I cry every single day and pray for some kind of relief from this hideous feeling of infection. Some days I wake up thinking im dreaming because this cant possible be real. Im only 33 with 3 small children whom I feel very sorry for I might add as I cry all the time. Life shouldnt be this hard


              • #8
                I think you may be going through what most of us did when we first developed IC. I was sooooo discouraged. But once I had a diagnosis, it somehow became easier to deal with. I hope your appointment goes well and you come home feeling a little better about it.

                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


                • #9
                  I was just diagnosed on Friday so it's not even one week for me. I was very depressed before I was diagnosed. My reason is simple, after 7 doctors visits and negative cultures, suffering and confusion, finally a urologist had a clue, understood what I was going through and gave me a plan to get better. I have been taking Urelle for burning, frequency and following the IC diet to the letter. I am feeling 60% better just from knocking down my coffee intake which was extreme. I'm doing my best to stay connected to people on this site, read all the literature and remind my self that I am not alone. I also want to add, I have never had a UTI in my life. This came out of nowhere. IC was never even mentioned in all those appointment. My internist gave me cypro and when that didn't work another antibiotic. My cultures were all negative. My gyno told me I looked fine and should see a gastro?? what for?? then I got a yeast infection from the antibiotics. My point is this, I told my doctor I can handle whatever is wrong with me but I cannot handle being told I am fine, everything looks good. I am not fine. I thank God she sent me to a urologist. I need a plan. I have always been a control freak I need to know what's the next step. You will find out what is going on and you will get a plan together to get better. you will get your life back. Believe it ~ it's true. Everyone is here for you. Hang in there.
                  Diagnosed May 2007
                  Currently Taking:
                  Urelle as needed for urgency/burning
                  Elmiron 100 mg 2x a day
                  Omacor 1 gm. 1x a day (to lower my Triglycerides)
                  Lipitor 10 mg.

                  almost forgot.....I'm ing for a miracle all day long ......


                  • #10

                    I won't worry abour grammar if you won't worry about typing. It got better for me starting with the first treatment. I hope you find help and effective treatment soon, no matter if it is or isn't IC.
                    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                    My Helpful Hints for Home Instillation:

                    Institute of Female Pelvic Medicine (J. Dell, My MD)
                    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                    I post to encourage and offer total support for rescue instillations.
                    Find me on facebook: L. Clark Thomas


                    • #11
                      I am too a teacher and just recently have been told by my urologist that he believes I have IC. I am going back next week to the uro and he is going to discuss with me doing a hydro. I think I am going to ask for the potassium test first. My symptoms started in January and I visited the uro in March where he dropped this bomb on me. I have had many hard times but I always try to remember that God does not give me more than I can handle. I also think about the many people out there who have much worse burdens than mine. Sometimes it is hard to imagine, and I just throw myself a pity party. Just don't go through this alone, let your family in, they will love you no matter what. They need to know what you are dealing with so they can help you face this challenge alone. I have already seen an improvement on my symptoms since I started meds in the middle of March. Granted, I still have issues, but I have a long list to take to my uro next week to make him answer. Hang in there.
                      Diagnosed with IC - March 2007
                      Diagnosed with vulvodynia - June 2007
                      -Lots of prayer
                      -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                      -Taking Prelief as needed (stopped because of pregnancy)
                      -IC diet


                      • #12
                        Three best things about teaching


                        30 years on Dec 1, 2007

                        out of the classroom 7 years and into elementary it

                        I love my job but hate to go to work. I've been working since 1965 and I am ready to put it down and spend time with my hubby who retired 4 years ago (Psychology teacher)

                        Please don't think IC is a fate worse than death. Most people find treatments effective in controling symptoms. I think of it as being diabetic. I have it, right now there is no cure only treatment, I work carefully with my doctor and it is managed.
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation:

                        Institute of Female Pelvic Medicine (J. Dell, My MD)
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas


                        • #13
                          Hang in there! Everything will work out for you. Like mentioned, dont hesitate to rely on those that post here; and I agree that you need to educate those closest to you, be it family or friends. Unless they know how you're feeling, they wont know how to help you.

                          It'll all be OK!

                          (o.O )
                          (> < ) This is Bunny. He's on his way to world domination.