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Procedures that Haunt you...

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  • #16
    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.


    • #17
      Thanks for the encouraging words, runningshoe! I'm hopeful that I'll be able to get back on track soon. Take care of yourself.


      • #18
        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.


        • #19
          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.


          • #20
            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?


            • #21
              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''s for your own good". I didn't understand it. 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's going to take alot of therapy!
              I wish everyone a healing spirit today.


              -Bladder surgery to correct reflux-'68
              -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
              -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
              -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
              -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
              PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
              -DX'd with IBS in 2000
              -Rhabdomyolysis in 2001 (has not returned)
              -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
              -DX'd with TMJ in 2000-wear splint
              -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
              -DX'd with Epilepsy -2000
              -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
              -DX'd with Fibromyalgia (2006)

              Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!


              • #22
                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.


                • #23
                  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 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:::
                  *IC-- Summer 2004; PFD--October 2005
                  *Fibro--Fall 2000; CFS-- Fall 2000
                  *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                  Total Abdominal Hysterectomy--adenomyosis--9\08

                  04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


                  • #24
                    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!

                    IC diagnosed officially via cysto/urodynamics 1/26/07

                    Grade II Endometriosis diagnosed via lap 12/11/07

                    "Fall down seven times, Stand up eight."

                    "Life is a tragedy for those who feel and a comedy for those who think."

                    Current Treatments:
                    Interstim Since 5/25/07!
                    Birth Control