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My Horror Story

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  • Von
    replied
    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

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  • Guest's Avatar
    Guest replied
    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

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  • YankeeCandle224
    replied
    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

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  • YankeeCandle224
    replied
    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.

    Sandy

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  • JessicainArkansas
    replied
    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!
    JessicainArkansas
    If you need someone to talk to e-mail me @ [email protected], a friend is always a click away!

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  • Vicki Brown
    replied
    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
    Julie

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  • Katrina
    replied
    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.

    Leave a comment:


  • ICNDonna
    replied
    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 http://www.ic-network.com./handbook/ 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,
    Donna

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  • kadi
    replied
    Hi David, Welcome This is a good place!

    About the sexual abuse question, the only place I've heard of that is that one IC patient mentions it as causal in her case (in her opinion) in a book called "A Delicate Balance" on living with chronic pain.
    I've never seen or heard any other connections with it (and that was only one patient in one book). And it's not the case for me either.

    But isn't it maddening and odd that there doesn't seem to be a common link?

    Kadi

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  • Britgal
    replied
    Hi David and I would like to add my welcome to the IC message boards and family. I really felt for you going for such a long time, and in so much pain, and glad now that you finally have a diagnosis, and a helpful doc, I know that must make a world of difference to you. You have come to a wonderful family of ICers, who are dealing with the pain of IC, and leading their everyday lives, but come to help a fellow ICer with support, understanding, and compassion, and any help that is needed, and lots of information. Hope that you are feeling not as much pain and glad to have you here, a welcome hug to you, Iris. hi grouphug

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  • auntiedeb
    replied
    david, no I haven't heard that either about people being sexaully abused with ic. I am so sorry that you had to go through that. I get chronic infections and get kindey stones and I know that when my uro went to do my bladder supension, he had alot of work to do, he had to take alot of scar tissue out of the bladder and the urthea, mind you had laprscopy in april to remove scar tissue from stomach and pelivc area and bowel and bladder area too. I think my chronic infections made me scarred and so did some of my kidney stones. I will be praying for you. Please feel free to pm me or email me . My email isat the bottom of the page.

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  • Sarojini
    replied
    I'm really sorry to hear about your problems with your stepfather... I wish you all the best during your healing process grouphug

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  • JAF
    replied
    David,
    I wanted to add my welcome. I hope you can get your symptoms under control and find some relief. I don't know if you follow any type of IC diet but it can be very helpful. You can find out about it and a lot of other things in the Handbook on this site. Good Luck to you,

    Jolene

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  • DuztyWhyte
    replied
    The reason I asked is because, I was sexually abused by my step-father for about 4 years. The whole time, I was in protective mode, keeping my muscles tightened as you would to protect yourself. I was just wondering how many people out there shared this relation with me.
    Thanks for all your input

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  • lalarainbow
    replied
    Hi David
    I pm'd you! Everyone is great here and so much help. No sexual abuse in my life.. Abdominal surgery stirred it up for me. I am sure I had it for a long time..but the surgery made it a lot worse..
    All the best!
    ~~Pam~~

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