No announcement yet.

My Horror Story

  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    I'd like to offer another welcome to the IC Network. I'm glad you have found a doctor who is helping you --- it can make a huge difference. The Patient Handbook is at and I encourage you to read all of the information it contains. And if you aren't already following the diet, I encourage you to give it a try.

    There is some thought in the IC community that IC may be triggered by trauma --- in my case it was a major abdominal surgery. I was never a victim of sexual abuse.

    Sending a welcoming hug,
    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


    • #17
      WELCOME TO THE BOARDS!!! I have heard of others being sexually abused that have IC but not often. So sorry you went through that.

      Your horor IC story is a familiar path....I am so sorry. Doctors can make me so mad.

      I am thrilled you still have hope. I hope that u are pain free and symptom free soon.
      Faith, Hope, and Love,

      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      or find me on facebook
      Be the Miracle! & Pay it Forward!

      [email protected] please contact me...I am here to help!


      • #18
        Dear David,

        I feel so badly for all that you've been through but am so happy you've finally been diagnosed and have a path to heal. Even though ic is a &^%$#@ disease, at least all your symtoms have a name and reason. It's not all in your head, as you knew all along.

        I thank God I was never sexually abused. Perhaps mine started after my hysterectomy 12 years ago and I went from dr. to dr. and pretty much heard, like you, it's not a uti. Like others my
        thoughts were then maybe it's all in my head. So the pattern remained for all those years until my diagnosis a year ago. I also think you are so brave to post this question along with your name. Please keep posting.

        Warm hugs go out to you grouphug


        • #19
          Dear David,
          You are on the right track, if you have found a Doctor that you feel you can work well with and works well to deal with your pain issues it is a God send. I am still to find and adequite Doctor who truely understands.
          I am so sorry that you too have to be another diagnosee, but this does not mean an end to what once was.
          IC is challengeing, rough, sometimes manageble, relenting and remisssive, unrelenting and does not give in to submission. You are a strong person to have survived to this point and you are worth all the money and time in the world to figure out what is going to work for you.
          I will pray as I always do, for the release of the pain, emotions, and barring factors that sometimes limit IC survivors in all we do. These limitations can also be launching pads and take us into a new realm of health we thought we would never discover.
          May the grace of God be with you!
          If you need someone to talk to e-mail me @ [email protected], a friend is always a click away!


          • #20
            Dear David,

            I want you to know you are not alone. I would guess 99% of us have been to the type doctors and ER's that you have been and I'm so sorry that you had to experience that as well.

            I'm hopeful for you, it sounds like you have a good doc on your side now, and you can cast those feelings of self doubt in the trash.

            I've been on my soapbox here several times about opiods and their use in chronic pain and how animals are treated better than we are.

            You came to the right place, most definately. I have been here a short time, but have learned so much, met some great people, and enjoy coming to the board every day.

            One thing I'm not clear on, did you find out why your legs hurt? Do you have fibromyalgia by chance? My legs, my shins especially, cause me great pain and it is caused by the fibro.

            Welcome and visit often, there is always something to learn here and always a helping hand.

            Hugs, Sandy

            ps. I also take 80 mg of Oxycontin, but I take it 3 times a day and that extra dose makes a HUGE difference in my pain control. If your pain is not managed by the 2x a day, mention that you know people that do take it 3 x a day and that they have more success. I also take norco which is hydrocodone with VERY little tylenol. I was killing myself with Advil and Tylenol, and my pain doc decided that I should have as little tylenol as possible. Please be careful should you have breakthrough pain, and watch out for any NSAID (Advil, Celebrex, Aleve, etc) as they will erode your intestines, I know this for a fact as I about tore holes in my GI tract and have severe erosions we are trying to heal with Nexium. As for tylenol, the liver can rebound, but if you take large amounts of tylenol for an extended period, your liver will suffer and so will you.

            I strayed there, just wanted to offer you some advice. I'm notorious for long posts lol.



            • #21
              Sorry left something out.

              I have been on so many boards, mostly fibro boards and CFS boards, but there IS a trend for people that have PTSD (post traumatic stress disorder) that have these strange illnesses. I can't give you stats on it, but there are MANY of us, who had a bad childhood or traumatized childhood who have manifested these illnesses.

              My theory is that after so many years of abuse, of your body using the fight or flight function, we wear our immune syndrome down and are more susceptible to disease. This does NOT mean its all in your head, it means our immune system is fried, miswired after living a life of he** as a kid.

              Again, I wish you the best. Sandy


              • #22
                hi david, first of all, welcome... kissing this is the best place to be when u have ic... there are so many wonderful people here . abt your qn, now that u mentioned it, i have been sexually abused in a way before.... that is- i lost my virginity wheni was raped . i dont know if it would mean anything but if you would like to talk abt it, pls email me...

                hugssssssss, gwynnieeeee


                • #23
                  Hi there David,

                  Its awful when you first get diagnosed but don't let anyone make you feel guilty for taking pain meds. You know your own body and what works for you.

                  About the abuse, its awful that it happened to you and I hope you are coping with it as a adult, if not seek some counselling - just talking can help. Or just come and talk on the IC board if that helps.

                  The connection with IC and abuse is not fact. From what I've read in books, some doctors make this connection because they feel that IC and other 'vague'(in their opinion) diseases are stress related and connected to repressed emotional issues such as those that can have happened in childhood. What happens to us as children has a profound effect on us as adults and can make us prone to stress and depression - but then again IC is a disease. Stress can make it worse and focusing on the symptoms can make them feel stronger but I doubt that abuse can actually 'cause' IC. Some people get IC after surgery, some after coming into contact with chemicals in swimming pools etc. It is usually organic in origin as opposed to emotional (but some doctors don't accept this).

                  There are a lot of people who have IC who have never been abused and a lot that have been abused and have not got IC or IBS or any other disease that doctors think is connected to stress.

                  I hope you get the help you need and feel better soon.

                  Von x