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  • My Story

    Hi I am new to the message boards but not IC Network. My story is alittle different then the ones I have read.
    It all started close to a year and a half ago.....
    I had always had bad menstruation cycles and as I got older they were getting to much to handle. I went to see my OB-Gyn I figured if anyone could figure out a way to ease my pain he could. He first went in with a scope to see what was going on. Apparently I had endometriosis and I had alot of scar tissue built up. He did what he could with the scar tissue and he decided to take my uterus because it was to far gone. I thought wow this is great I won't have to deal with all this pain anymore. Well the pain didn't stop so he said lets go back in and see maybe more scar tissue has built up so 3 months after having my uterus removed I had both ovaries removed due to endmetriosis. When they took me to the recovery room and I started to wake up I immediately felt the urge to urinate. Well the nurse told me "honey you can go to the bathroom you have a catheter in". After staying in the hospital 2 days I was released. When I got home I started having sudden urgency to urninate and when I went it hurt like a UTI. So they gave me antibitotics. Well the pain seemed to be there even after my 6 week checkup. They tested my urine it was fine. But I wasn't! After weeks of having this pain he told me to go see my regular doctor an internal medicine doctor. This doctor put me on antibiotics and told me to go see this urologist. I went to see the urologist she checked me for an infection and then checked me for IC. I don't know how she determined I did not have it because she didn't take me into the OR to look at my bladder at all she just inserted a catheter. Well I left her office with her telling me that I did NOT have IC. I thought well that is good now what else do I do? Well the painful urination continued, I had lower back pain and urgency and this stabbing pain on my right side. Noone seemed to want to help me I had 3 sugeries and they seemed to have brought on all the urination problems. I called my OB-Gyn again and he prescribed me some pain killers to get me by until this problem could be solved. Well the pain got worse and I went back to the urologist and she instilled Heprin and I didn't have a reaction to it...the reaction that most IC patients have to it. So she told me I'm sorry you don't have IC. I was out of pain killers then and no where to turn. I asked her for a prescription and she said I don't give out pain meds ...but I do know a great acupuncturist. I told her sorry I don't believe in that and walked out of her office. I didn't know what to do so I went back to my internal medcine doctor he told me that he thought I was making this all up to get the pain medication and told me he wanted me to go see a shrink. I was so upset with this doctor I never went back to him. By this time I had exhausted any ideas I had. I was in severe pain and doctors were telling me I was nuts. I had missed so much work I was suprised I still had a job to go to. Finally one day I was at work and a women who worked with me got a bad bladder infection I said who is your doctor she told me so I called right then and there and made an appointment to go see him. I went to see this new doctor I had taken all the files from the surgeries with me and proceeded to tell him everything I had done. He immediatley scheduled me for a bladder distention. While coming out of the recovery room he came up to my bedside and said "Shannyn you do NOT have IC" I will see you in 2 weeks. I thought to myself well now it is really confirmed it is something else. Two weeks had passed I returned to the new urologist. The first thing he said to me was " I am so sorry I told you that you didn't have IC because the pathology reports came back and you do have IC". I actually felt a bit of relief I thought ok now I found out what I have now lets make it go away. Then he told me there is NO cure for this disease. I looked at him and started crying. We started talking about my options he set up appointments for me to come in and start the DMSO treatments and he immediatly put me on antibiotics for the infection I had and Elmiron and gave me percocet for the pain. I finished all of the DMSO treatments they didn't give me any relief I would just return home or work smelling like "burnt spagehettios" that is what my coworkers and kids narrowed it down to. I took the elmiron for 5 months my hair started falling out in big chunks and I was always so sick vomiting daily. He finally pulled me off the elmiron. We exhausted every option he knew of but the pain was just so severe. I was so deeply depressed. This affected my family, work and any enjoyment I should be getting out of life. It has been alittle over a year and a half now I check weekly on the IC Network site to see what studies have come about to see if there is something I can try. I was sent to a great "Pain Managment Clinic" I am long acting morphine, zanaflex, and a great antidepressant (effexor) and immediate release morphine for the break through pain. I am able to get out of bed and see my children off to school and do mild housework. I ended up quiting my job that I had only had a year because I couldn't handle the sitting and working on the computer. I can't get disability because I don't have enough work credits and my husband makes to much for SSI. I had a total of 12 surgeries last year I even had a nerve stimulator placed into my spine hoping for some sort of relief. It didn't work and it was removed. This disease has nearly cost me everything I hold dearly in this world. We lost our house and had to file bankruptcy. My medication bill is outrageous due to increases of the copay for our insurance. If I didn't have my computer and all my wonderful friends in a website where I play games online and my family I don't think I could of made it this far. I take "one day at a time" and pray I can make it to next. There isn't a day that doesn't go by that I don't pray for a cure for this disease so that so many other people like me don't have to suffer anymore.

  • #2
    Shannyn! I am so sorry that you have had to go thru all of that.....I felt like crying when I read your story. I will say a prayer that you find a treatment that will help you. And, I am glad that you are now with a good Uro. and they are treating your pain. And, welcome to the Message Board! You will get a ton of support here. It is my life saver! grouphug
    DanaW

    "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

    Comment


    • #3
      I feel so bad for you shannyn. So many of us have been through hell. Jill just posted my story on patient stories and there are many others on there that i think will help you realize the way we have been treated. I think there are alot of people who can help answer your SSI questions as well. you have come to a good site! Teresa

      Comment


      • #4
        Thank you for the replies. When I read that poem on one of those replies I started crying. My emotions right now are horrible I am having a terrible flare up. Thank you for treating me like an old friend

        Comment


        • #5
          Hello Shaynnan, and welcome to the boards and the IC network, your story was so sad, you have gone through so much, and still going through it. I see you mentioned Effexor, I am on that also, Effexor-XR the extended release, and it helps. I am also on Elavil at night which is another big help to me. Hope that you can find something to help you out with your pain, it must be so frustrating ,to go through everything you have, and still deal with a lot of pain. You will find a lot of very good gals here who will give you support, and encouragement, and love when those bad days keep persisting. Please let us know how you are doing and if you have found something that will help you out, hugs Iris hi grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

          Comment


          • #6
            Boy I really messed up your name sorry about that Shannyn, pretty name, take care, Iris eek
            Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

            Comment


            • #7
              Oh, Shannyn. You have been through the wringer, hon. kissing I am so glad you posted your story so that we can get to know you.

              Nosey question that you don't have to answer. Are you religious at all? You can answer me in PM if you don't want to say here and you don't have to answer at all if you don't want to. I just noticed where you live and was curious.
              Kim

              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

              Comment


              • #8
                Shannyn,
                Welcome to the boards and posting your story. I am sorry you have been through so much. Just curious, has your Dr. tried you on Hydroxyzine? Many ICer's are helped by it. Not all by any means but some. It was just a thought of something to discuss with your Dr. and see how he feels about it in your case. There are so many different treatment combinations, and no one thing works for everyone. Hoping you can get some relief soon!

                Jolene grouphug
                Jolene

                "Life is what happens when you are making other plans" John Lennon

                IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                Information for Patients can be found here.
                http://www.ic-network.com/patientlinks.html


                Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                "IC Angel 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."

                Comment


                • #9
                  grouphug grouphug grouphug grouphug Hi and welcome to the boards. You sure have been through alot. I will be praying for you. Please keep posting. I am glad that you found us. There is alot of support and love and caring on the boards.
                  Hang in there , There is hope.
                  There is hope. Prayer works.

                  Love, Debbie

                  Comment


                  • #10
                    Thanks for all of your support and all the positive messages I have gotten. To answer to 1 of the questions no I'm not religous. I know alot are a friend of mine always tells me she ays a prayer for me. I have tried Hydroxyzine. I haven't had much luck with alot of stuff that is why I opted for the stronger pain medication.
                    I was wondering what is Elavil I haven't heard of this drug.
                    Thank you all again for the support. hi

                    Comment


                    • #11
                      Well, the nice thing is that we'll support you and love you whether you are religious or not!
                      Kim

                      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

                      Comment


                      • #12
                        As far as I have found out, Elavil is an anti- depressant, but also helps with the pain receptors, I know it works very well for me. I know a pharmacist would be able to fill you in on what it does exactly, take care Iris hi grouphug
                        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

                        Comment

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