Announcement

Collapse
No announcement yet.

My Story

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Britgal
    replied
    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

    Leave a comment:


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

    Leave a comment:


  • Shannyn
    replied
    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

    Leave a comment:


  • auntiedeb
    replied
    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.

    Leave a comment:


  • JAF
    replied
    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

    Leave a comment:


  • vm
    replied
    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.

    Leave a comment:


  • Britgal
    replied
    Boy I really messed up your name sorry about that Shannyn, pretty name, take care, Iris eek

    Leave a comment:


  • Britgal
    replied
    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

    Leave a comment:


  • Shannyn
    replied
    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

    Leave a comment:


  • mayray518
    replied
    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

    Leave a comment:


  • DanaW
    replied
    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

    Leave a comment:


  • Shannyn P
    started a topic My Story

    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.
Working...
X