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Procedures that Haunt you...

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  • humpieumpumkin
    replied
    Im truly saddened that we all have to suffer physically. It sickens me literally to think about how the body and mind remember tramatic experiences and pain. I feel better now knowing that i'm not alone, but for the sake off all that shared I wish I was the only one who had to suffer like this. I will tell you there is hope I saw a different uro today then usual. I was shaking, sweating, and panicing over the thought of having a straight cath put in since the last time I had a cath was during the cysto from hell. To my surprise it didn't hurt at all! Hardly a pinch even! This single experience has given me a new outlook-It doesn't have to hurt! I was extremly impressed with this uro. I am still going to see the interstim specialist, but if he cant help there is another option. There is always another doctor! Don't lose hope!

    Erika

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  • SandyRN
    replied
    A long time ago when all my fibro symptoms were just starting to show up I was seeing a neurologist. She was a very rude and abrupt person...one day I was to have an EMG done...if you dont know what that is, it's where they shock individual muscles throughout your body, mostly the arms and legs. They are testing to see if there is any neuro damage. I wanted Tom to come with me because I, of course, had looked it up on the web and was SO afraid. Well, he came, but she would NOT allow him in the room, even though there was a chair at the head of the table where he could have held my hand. It was literally the most painful and horrific procedure I've ever had done. I was SOBBING by the time she'd finished just ONE leg, and by the time she was done I was literally hysterical. She told me I was overreacting when it was over, and I told her she was a "b"...literally. I'd had enough of her and never went back. Got my results from her nurse and cancelled my followup appts. If she had allowed Tom to come back there with me I probably would have handled the pain better....but her being so mean and hateful while she was causing me such pain just was too much for me to handle.

    I remember the entire waiting room staring at me when I came out. I fell into Toms arms and he helped me out of there.

    I'd forgotten about that, or at least blocked it out of my mind til now. :::shudder:::

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  • Muffie
    replied
    Runningshoe,
    My doctor is in Providence, RI. The whole practice is incredible but I have heard that they are hard to get into and that there is a bit of a wait time. I actually saw the doctor on my first appointment but it is the nurse practioner who sees me now and she is fabulous. Her specialty is IC so she has a great deal of compassion and knowledge about the disorder. I have had two instillations in the past week and was in a really bad flare up until today. She has put me on Elmiron and Elavil in addtion to Detrol and Hydroxyzine. She says that once the Elmiron kicks in she'd like to take me off of the Hydroxyzine. I am not tolerating the Elmiron all that well but I'm hoping that I'll get used to it. I'm so nauseous and dizzy from it. Hang in there. If you would like to PM me I can give you all of the information if you need to contact them.
    Kim

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  • DaniBelle
    replied
    This topic...

    keeps drawing me back. I keep thinking of the trauma many of us have been needlessly put through because a doctor wanted to take a 'shortcut', or just plain didn't want to validate the fact that we could actually feel a great deal of pain having a MAJOR ORGAN manipulated! Because of this attitude by my past Uro's, the first being the Uro who performed a corrective bladder surgery for reflux when I was 8 years old, I have a permanent mental and physical scar which will never go away. Prior to the surgery at age 8, I would have to go into the Urologist's office for monthly 'cleanings'? I now wonder if I was actually getting something instilled into my bladder. It was extremely painful and felt like soap was being sprayed into my bladder. I would cry every time before my Mom and Dad took me into his office. I remember 'escaping' once and running into the woods behind the doctor's office. My parents had to pry me from a tree I was clinging to. My Mom would cry and say "I wish I could do this for you, but I can't....it's for your own good". I didn't understand it. Plus....my doctor was a total [email protected]#@(#@! He was known to be the best Urologist around, but also the meanest. After my surgery, he got very angry with me because I was crying and he didn't have time for it. He wanted me to stand straight up so my stitches wouldn't heal too tightly. I was so scared that if I stood up straight, my incision would split. This was a terribly traumatic experience that still haunts me everyday. When I got married, I noticed right away I had a very strong aversion to sexual intercourse. I would 'detach' myself and go to a calm place in my mind. Today, esp. with having I.C., even watching people kiss on T.V. makes me hurt. I guess I'll be having a long conversation with my new pain mgt. doctor (he's also a psychiatrist) about this. I should have been in therapy years ago. When the first person posted this topic about how we remember pain, I started to work these things out. I know I have PTSS. Pain is something that stays with you forever, even if the pain ever goes away. My husband understands why I have this feeling about sex, but with the I.C. (before it was the endo and cysts), it is even worse. No sex for me or my hubby for almost 5 months. We've tried outside sex, and even though he 'gets through it', it hurts too much for me to 'get through it'. Oh boy....it's going to take alot of therapy!
    I wish everyone a healing spirit today.

    DaniBelle

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  • runningshoe
    replied
    Hi,
    Yes, a good kind smart doctor is absolutely necessary. I went through many years ago. THank goodness the one who treated me in the past is still around. I have always wanted to see a urogyno, Muffie what part of the country do you live in?? Maybe she isn't too far from me, I am outside of Boston. What treatments is she prescribing for you?

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  • Muffie
    replied
    I honestly think that having a good doctor is half the battle. I have found a fantastic one who specializes in treating only women with IC. It is so hard to find good doctors, though. Mine is also a urogynecologist. She has referred me to a counselor because I am so stressed out with having this condition. I had a bad flare the other night and cannot return to work until probably tomorrow. It is a hard thing to deal with but I would say that you might want to keep searching until you find a good doctor. Take care.
    Kim

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  • Hollyd
    replied
    So sorry you're going through this Erika. I can chime in that the same thing is happening to me. I can't begin to describe my state of overwhelm. In my case I know it is PTSD because I already have it and this is completely exacerbating it. I couldn't sleep well last night despite all my sleep meds just because I put in a call to the last uro I saw for my test results and it is highly unlikely that anything will show up on it (CT scan) but I can't face it or him. He wants to do urodynamics and there's no way I can do that - I don't think I could do a simple blood test at this point in time.

    Normally I would always call a doctor as soon as my test results are in to get them and I haven't been able to do that for several days w/ this last one. At the same time these symptoms started w/ me I also had a uterine cancer scare and had to undergo a D&C and worry for weeks whether I had cancer. Then I was literally harassed by the gyn to have a procedure for removing a benign uterine fibroid - a procedure I am not interested in having and had to waste a lot of time and physical and emotional energy looking into my options there (it's seems to be shaping up that there is no need to remove it).

    In addition, I've had rude doctors w/ attitude problems who didn't care at all about my pain, and ones literally lying to me including the gyn who did my cysto while he looked for cancer in my womb - we agreed that he would do a bladder biopsy and I later learned when I sent for all my records that he never did one!

    The feeling of not having a doctor I can trust or having to deal w/ one who can't even muster a modestly friendly demeanor only adds to my ptsd.

    I think unless you are ruling out cancer and it sounds like you're past that stage, you have to pace these things so that you feel some degree of control over your body and your life and not do them unless and until you feel you can bear it. As someone said, the stress itself is bad for the disease and so only you can judge whether another procedure will be helpful or harmful at this time. It's okay to say no to tests, but of course very unwise to do so when something deadly is on the table.

    Tracey, I'm having the same thing you described in terms of sounds and even light, I need the lights low and a sudden loud sound is making me jump.

    I look in the mirror and I've never seen myself look so bad. Right now I feel the more I stay away from doctors the better off I'll be.

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  • Muffie
    replied
    Thanks for the encouraging words, runningshoe! I'm hopeful that I'll be able to get back on track soon. Take care of yourself.

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  • runningshoe
    replied
    Yes, 12 years almost completely pain free. Sure I always got up to pee once or twice and a tight pair of pants was usually a no no but I was doing well. FYI I was super healthy when I was pregnant (3 times). No flares during all those years of babies and breast feeding. I hope that you experience the same. Maybe trying to get pregnant has kicked things up a bit?? Hang in there.

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  • Muffie
    replied
    Runningshoe-I was so interested in your post because you said that you had been in remission for 12 years. I was diagnosed with IC about 8 years ago and my only symptom was painful intercourse. I had several DMSO treatments and then was fine. I had no other symtoms until this past December when I started going to the bathroom every 5 minutes. The first uro I saw told me that there was no way I could have IC because it doesn't go into remission for that long. He finally did do a cystoscopy and discovered that I did have it. I am now with a new doc who is fabulous. Like you, I haev a lot of anxiety with this condition. I am going to check into seeing a counselor to help me through it because I cannot take any anti-anxiety meds because I'm trying to get PG. Good luck to you!
    Kim

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  • runningshoe
    replied
    Oh how I relate. I had ic back in the day of urethra dilations in the dr's office. I had cystos in the dark basement of my college health center. I found dmso installations to just be more trauma. It took years for me to think of my crotch as anything but a painful place. It was hard on my marriage!! I was in remission for over 12 years until last month. A new illness probably weakend my body and the ic returned. I was out of my mind with a burning pain but kept going to the gyn saying it must be a vaginal infection. Two weeks later it was go to the er for pain meds or just call the uro from all those years ago. He examined me and said I was in a flare. I burst into to tears. The trauma and the pain and the stress of the dx time in my life was more than I could bear. You are totally normal to be stressed and sad about this. I had a hysterectomy two years ago and I would often cry just thinking about the trauma of surgery and the time spent healing. I think you need to pamper yourself and know that you are justified to feel such feelings. I am actually seeing a counselor because I just can't go down this road again without working out some of the terrible memories. Talk to your friends, call your dr, don't suffer or be sad alone. Hugs to all!

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  • DaniBelle
    replied
    Painful memories...memories of pain

    Someone on this site posted a quote from a popular medical drama (my fav), "House". The quote is something like this "The fear of pain is almost as bad as the pain itself". Most all of us have had experiences where you hear that phrase "This will just 'sting' a little", or "You'll just feel a little pressure", when 2 seconds later, you end up screaming in pain. Why do the doctors and nurses even say anything!! It makes me so mad. Someone checked my blood gases once and I completely passed out from the pain. I will NEVER forget the pain of that. My last appt. with my former Urologist just drove home the fact that a huge amount of healthcare providers don't understand pain. He had done a cysto and hydrodistention on me a few years ago WITH sedation in the hospital because he also wanted to biposy some tissue in my bladder. It was so painful afterwards, even taking pain medications and still having remaining pain meds in my system from the surgery....but I got through it. The last appt. I had with him, he said another distention would probably help me feel better, but he wanted to do it in his office because it wouldn't take but a few minutes and I could deal with the pain for that short amount of time. WHAT???? I told him, no way....and told him it was painful even with anesthesia and pain meds. They just don't understand....and I dont' know why. I can't be the first one to say this to him. I am blessed that my UroGyn I have now FULLY understands how painful all of this is. Anyway, I'll never forget him casually telling me how because it was a short procedure, I could deal with the pain. I don't go there anymore......only good to come out of it is that he referred me to where I go now for instillations!

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  • kuntrygurl78
    replied
    I am still freaked out about my cytscopy which was about a year ago. I was awake for it. I tried to be strong thru it and afterwards. When I look back, I probably shouldve went to the emergency room or back to my doctor because I was in so much pain. I had to drive myself 45 minutes home after the apt. He didnt tell me it would hurt or that I would probably need someone to drive me home. I remember being done with the apt and then having extreme urgency and pain right after the procedure. During the exam I told him my pain was ranging from 7-10, but he didnt give my bladder any meds when he was done. I just kept thinking I was being a wimp about it.

    That 45 minute drive home was the longest drive ever. I went as fast as I could safely go. My fiance called me on my way home. When he called I started crying. He asked if I was ok, I said no. When I got home, he had a heating pad and some tylenol ready for me.Now I realize that I probably shouldve been put under during the exam or at least had some pain meds instilled into my bladder, but I just went home and collapsed into a deep sleep.

    After reading up on procedures on here and seeing what everyone else went thru, I realized that I wasnt a wimp, and that I shouldve demanded that he do something to help with the pain after the apt. Now, I know what to expect at my apts and its all because of you guys.

    I hope that you get passed your experience soon! Im getting over it little by little, day by day.

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  • SrMaggie
    replied
    For some reason, the last few days, I have felt some nebulous anxiety. My hands are shaking and I have 'butterflies' in the pit of my stomach. For awhile this weekend, I got rid of it, but it's back again. There are so many things going on in my life that I have to sort out which if any of them are causing the discomfort.
    I have a uro appt. on Tuesday to discuss bladder removal. I'm packing, because I'm moving - actually in a few months, but I have to tie up lose ends at work as well as getting the house ready. Saying goodbye to a lot of people is going to be so hard. I am still grieving my sister's death. Her children have been in contact with me through email and they are hurting. I try to comfort them and let them know I am here for them. What great kids! I've decided to find a therapist around here, even if it's just for a short term.
    I started Yoga this morning. I found a cd that starts you in the morning with 15 minutes of stretching before you even get out of bed. Lots of breathing techniques. Tried it theis morning and it was great.
    Hang in there. Anxiety that has no recognizable roots is a bear. Anxiety with a recognizable source is a bear. Trying to avoid the things that cause us to be unsettling is a good thing to an extent. I don't want those things to pile up until I am paralyzed.

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  • waterflow
    replied
    I go through the same thing. It is an awful weird feeling huh? I won't listen to any medical information on the radio or watch it on tv. I very seldom ever watch the news. I start sweating and panicing if I do. The worse for me was the colonoscopy which I will never ever do again. I managed to finally put it in the back of my mind so I won't remember. It took me about a year to be able to do that. Like the others said I would mention it to your Uro so he knows how you felt and what you are mentally going through from it. Might help to talk to him over it if you need to have something else done. I never worried when my Uro was in the room. When he left I would start freaking out. Hope you get to start feeling better over it.

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