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newbie here

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  • newbie here

    Hey everyone! My name is Nichole I'm 23 and I'm currently living in AZ, moved from CA. Anyway I started having symptoms about 4 years. At first I didn't know what it could be so I went to my doctor and told them all my symptoms of abdominal pain,nausea & vomiting, very fatigued, weight loss, and loss of appetite. At the beginning none of the docs could tell me what is was I would just always get sent home with nothing which is so frutrating. So after a few months it seemed to be getting worse so I went back in and the same thing no answers. Then I saw one of the new docs at my facility and she listened to everthing I had to say and for the first time I felt i was being heard. So she started me on Atarax and Elavil in 2003 and i felt better after being on them for awhile. Then my symptoms would either go away for a few months at a time and then seem to come back just more severe. I'm just so sick of dealing with all of this with no relief. Well its been 4 years from when I first starting have all these symptoms and still no relief! I'm so tired of the severe abdominal pain which is making me so miserable. I feel like I don't have a life anymore. Ican't really plan things in th future cause I don't know how bad I will feel at that time of what will happen. I thought I was the only going thru this but then I came across this site and it made me feel a little bit better knowing that other people have the same problems I do and are not letting it ruin their life. Hopefully one day I can be one and live a happy life. So far I'm just dealing with things on a day to day basis.

  • #2
    Nichole and to the IC network. Has anybody ever mentioned IC to you? Do you have any of the symptoms such as frequency or urgency? I would talk to your gyn maybe? My gyn is the one who first suggested IC, I had never heard of it before then. Is your pain more abdominal or more pelvic? I hear many people w/ IC complain about pelvic pain but not really about abdominal pain. I hope that you get the answers that you are looking for. You will find a wealth of info here, I would suggest starting w/ the patient handboodk, there is a link at the top of the page for it. Good luck!

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      Hope you find support from a doctor soon. I know you will find support here.
      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


      • #4
        thanx for listening

        Thank you guys for making me feel at home here. When i was in CA they diagnosed me with IC and then started the elavil and atarax. After awhile it wasn't working the same so my doc upd the dose bt i had really weird dreams/nightmares so i was put back down on my doses. After that I moved to Arizona and went to my PCP and told him I was diagnosed with IC and told him whats I have been thru, so he started me on bentyl and fiber capsules and referred my to a specialist. When i went to the GI dr. i told him everything and he wasnt sure that I did have IC he thought IBS. So now Im waiting may 3rd when he will be doing a colonoscopy and endoscopy to rule anything out. But a week ago I went to my gyno. and went in for a yealry check up and started talking about what I have been going thru with my weight loss, abdominal pain, urinary frequency sometimes way over 10-20 times a day and always getting up at night 3 or more times. To my surprise she statingtelling me that it sounds like IC and when she said that I said one of my old doc said it was IC and i was relieved that this had a name and now I can start trying to do what i can to get thru this but at times i still just wanna give up.


        • #5
          Keep your head up

          Keep your head up. its hard to deal with the fact that we all have this crappy illness. Try to read through this website it is so helpful. I just been here for a few days now but i feel so homely as people are super nice and helpful here.
          Even if you have to go to the bathroom so many times..still try to drink a lot! I have it too..i go pee and then 15 min later i gotta go again but try to hold it for a while. Try to practise that...Try to hold it but if you have severe pain dont hold it..Try to stick to the Diet!
          Let us know how you are doing.


          Symptoms started November 2005
          Diagnosed with IC in January 2007
          Diagnosed with Vulvodynia 2006
          Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
          Vitamins/Minerals: Neutra C

          Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


          • #6
            Glad you found us!

            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