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  • Newbie in New York

    My name is Denise (42) and I live in New York. Married 14 years. I have no kids ( had 5 miscarriages). I just got a kitten So here is my story: After 7 doctors visits in 1 month a urologist told me yesterday she believes I have the early signs of IC. I was at my gyno's office 3 times and my internists 4. The gyno couldn't find anything wrong with me and the internists prescribed me 2 different antibiotics for a probable UTI but my urine came back normal 3 times. Then I got a yeast infection from the antibiotics. I have been very uncomfortable for 4 months. I went to the internists on Monday and just started crying my eyes out. Why can't they figure out what is wrong with me. I said - please don't tell me everything looks fine...everything looks normal. I can't go on like this ( sounds very dramatic now but at the time it feels desperate). Friday I went to the urologist and told her my story. I would like to tell you my symptoms because I have never hear or met anyone with IC and I guess I just want desperately to hear " Oh, sure, I've been there, I understand what your talking about". I told the doctor that I have burning when I urinate. Almost like I am allergic to my own urine. It bothers me when I sit, not all the time but I feel like "something large" is stuck inside of me. I have pretty bad lower back pain and feel most comfortable when I am lying on my stomach in bed. I get pains in my thighs and cramps in my abdomen. I have urgency to urinate but it's not all the time. Last thing is several times a week I get a shooting pain that runs up my abdomen to right under my belly button. In kind of a straight line from my hair line to my belly button. The most annoying thing right now is sitting down on a chair.

    The doctor prescribed me Urelle and an IC diet and told me to come back in two weeks. If I feel improved we will stay on the same course If there is no change she needs to " scope" me??? I don't know what that is but it sounds scary. This is my plea.............. please tell me someone has experienced these symptoms. Please tell me it sounds like my doctor is on the right track. I know that nobody here is a doctor but I just need a little validation after 4 months of pain & 7 doctors appts. I'm honestly feeling desperate and a little depressed. I think the depression is the " not knowing"

    Anyway, I am long winded....sorry. I feel like I finally have someone to talk to.
    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 ......

  • #2
    Hi Denise,
    My name is Linda. First let me say that I am sorry about the babies you lost. I had a stillborn baby boy 12 years ago. It must be so difficult to have lost five. When I was suddenly struck with IC in January 2007, I remember thinking "Why has mother nature failed me again". Don't get me wrong - I know I still have so much to be grateful for. But losing a baby and dealing with an IC diagnosis were both devastating experiences. I just wanted to let you know that I am glad you found these boards because you will find lots of support here. You will see from reading these boards that symptoms vary from person to person. I have a constant stingy/burny feeling in my urethra which often makes me feel like I need to go. But I have read about others who have had some of your symtoms like pain in their thighs, abdomen etc. - so hopefully they will post. It is understandable that you are feeling depressed but things will get better when you find a treatment that works for you. I am keeping you in my thoughts and hoping you are feeling better soon. Sending healing energy...linda
    Last edited by lan; 05-26-2007, 03:05 PM.
    Sudden onset of UTI like symtoms on Dec 27, 2006.
    Diagnosed with IC on March 12, 2007.
    Current Meds: 50mg Elavil
    "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

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    • #3
      Thank you Linda. I will take all the healing energy you have to spare. I appreciate the kind words.

      ~ Denise
      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 ......

      Comment


      • #4
        to the ICN.

        Comment


        • #5
          hi denise and .i am glad you found this site,it has been such a lifesaver so many times for me.i have almost every symptom that you do.my biggest complaints are the stabbing pains,almost constant,and the lower back pains.ic can be a very painful disease.it does sound like you have it to me.in the beginning its so hard to stay calm,but i do know that there are so many different things to try.most people can find their certain combination of treatments to feel alot better than when they first found out.the hardest part is going through testing out which works best for you specifically.the best thing you can do for yourself right now is to research everything you possibly can about ic,make sure you are prepared when you see your doc.ask as many questions as you can,make a list of questions to ask your doc.i have found the more i learn about this horrid disease,the better i feel.please keep coming on here for moral support,it is so important for you to talk to people who can share the same experiences as you,so you don't feel alone.take care of yourself.if you need anything feel free to pm me.jamie

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          • #6
            I am sorry to hear of your miscarriages, I have had 2 one 21 years ago, and a set of twins 15 years ago.

            I think your doc is going in the right direction. I think he is talking about doing a cystocopy, that is where he looks in your bladder. But that alone will not tell him if you have IC.
            keep us posted on how you are doing and ask as many questions as you would like.
            'The will of God will never take you where the Grace of God will not protect you.'

            Comment


            • #7
              Hi Denise, I am also in NY (Western NY near Buffalo). So sorry to hear about your miscarriages. That must have been so hard. You have gotten lots of great responses and answers so far. I just wanted to add that I have lots of pain too while sitting and have gotten significant pelvic and back pain relief from a cushion made for people with bladder problems. It only works for me in the car, at my desk, or on a "hard" chair, but it has made attempting to see movies, baseball games, meetings at work, and long car trips a little more bareable. Just thought I would bring that up.
              I also use heat on my pelvis and back and that helps alot as well.
              Yes,we do understand. And I felt so hopeless at first. I still have days I feel down as I am one that has had little success with the more common treatments. But the point is to always stay on top of your health and never give up or isolate yourself.
              Hope you are feeling well and get some relief soon.
              Rachel
              DX's:
              IC; PFD; possible Fibromyalgia; IBS;

              Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

              I've Tried:
              three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
              Currently using:
              Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
              Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
              I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

              Comment


              • #8
                Denise,
                The first flare up is always the hardest because the diagnosis process takes time and we are usually desperate to get relief at that point. The in-office cystoscope sounds really scary, but it's not really. They numb your urethra (if they don't, ask them to!) and then insert a very small tube with a camera. Mostly, it's to rule out anything obvious. Others will talk about a cysto/hydro. That is a different procedure and involves anesthesia. I've had two in-office cystos and although not very fun, they weren't a big deal.

                Sorry about your miscarriages. I lost a baby girl mid-way through a pregnancy last fall and the sadness was unbearable at first.
                mom_in_ma

                Comment


                • #9
                  Similar to you

                  I think you and I are going through a similar phase right now. I've been crying a great deal and am trying to get used to this feeling of going to the bathroom constantly and burning after I do. I too have been to many doctors over the last few weeks and I'm currently just on Urelle as well. Although my doctor gave me some Ultram, a pain reliever that works pretty well so far. I'm getting a lot of pain in my thighs too. What seems to help for me is walking around, not sitting too much and laying on my bed on my belly but with lots of pillows proped under me and a heating pad between my legs.
                  Stay in touch, I'm coming to this site a lot, and it's helping to review my symptoms with others.

                  Comment


                  • #10
                    The "scope" your doctor mentioned is most likely a cystoscope. You can read about the procedure in the Patient Handbook at http://www.ic-network.com/handbook --- it's called a cystoscopy.

                    I hope the diet will help get your symptoms under control. Most of us do improve once we stop ingesting irritating foods and drinks.

                    Warm welcoming hugs,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

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                    • #11
                      Denise , glad you found this site! And no a cysto does not hurt if it's done correctly .They put you on a table clean the aera & put some cold jelly there to make it numb, insert the scope and look into your bladder.Put some steral water in and drain it and off you go.I have had IC since 2002 & also was not able to have chrildren.I did do invitro & other treatments with no success. It sound slike your uro is on the right track. But remember us Ic patients are alll diffrent & not everything that works for someone else will work for you,its trial & error.If you need any help feel free to Pm me any question.if I can not answer it for you someone here will be able to help.the ladies here have been my godsend! again welcome to the IC family!
                      Hugs Sandra
                      "Never Give Up."

                      To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                      My Photobucket Link:
                      http://s237.photobucket.com/albums/f...ramack_photos/

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                      • #12
                        Hi - I'm Carolyn and I live in Western NY. I was just diagnosed with IC on May 11th. Have been suffering for about one year before this diagnosis. Had kidney stones removed in February 2007 and then the bladder spasms started to be really terrible. I have just read the diet restrictions and have decided that I will really try to adhere to all the new regulations. So many new medications that I need to take. Amitriptyline made me very hungary so I was told to stop taking it at bedtime. I now take Hydroxyzine 10mg - 3 tablets at bedtime but also must take Prevacid 30 mg at bedtime also because Hydroxyazine causes heartburn and stomach upset for me. Elmiron 100 mg three times daily seems to help. I have started the installation of medications into my bladder and will continue having these installations weekly for six more weeks. Hope they help. I'm in much pain at night and now take Flomax to make my bladder empty completely. I've only taken it for two weeks now and it is just starting to help me. I was under the impression that Flomax was only for men but I was told that it actually works better for women than for men.

                        Cottage-Carolyn

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                        • #13
                          This is my first posting - hope it went through and hope that you can read it and that others read it also.

                          Cottage-Carolyn

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                          • #14
                            Thank you - a million times

                            Thank you all so much. I cannot tell you how much the responses have helped me. Even if it's just to keep me calm. I was really very scared, depressed and anxious. Just this morning I was still in bed and I had a bad back ache and bad aches in my thighs. I was so afraid I was going to go to the hospital. I have never had this before except minor aches in my thighs when I get my period ( 1st couple of hours). I put a heating pad on my back and took 200 mg motrin. I laid in my bed for 3 hours and woke up fine. I came to this site and read the messages and learned so much:

                            - the scope doesn't have to kill me with agony
                            - the pain in my thighs is not a new condition, it's probably related to my IC
                            - the pain while sitting is not unusual...
                            - I'm not alone..I'm not crazy..the symptoms are not in my head..I will be OK.

                            Also, that shooting pain up my belly it not weird - I read that in a post from Jill that is usually her warning of an onset of a flair?

                            Yesterday I was feeling very sorry for myself. I told my husband I can't have any snack anymore. I told him I can eat peaches so he went to Trader Joe's and got be a bad of dried white peaches. I had like 4 large dried yummy peaches. I read today that I can have PEARS not peaches. UGH!

                            Anyway, I just wanted to say thanks to all of you. I will be sticking around and I am very chatty so you'll all get to know me. Thank you!!!!
                            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 ......

                            Comment

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