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The chronic pain nightmare The chronic pain nightmare

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  #11  
Unread 12-17-2004, 10:37 AM
The chronic pain nightmare

Count me in too! I am currently taking Rx narcotics long term due to SI joint arthritis and chronic pelvic pain. This is after a TAH/LSO, bc pills, 6 months of Lupron and another surgery for RSO and extensive adhesion lysis. Oh yeah, they found active endo after all that too. I am just 2 months post op for this last surgery and already in pain again. I do not like taking these meds, however, I don't consider myself "addicted" to them. I take them for pain, not recreation. Where I go from here, I don't really know. Right now I can't work either. I have injections scheduled in January that I hope will provide some relief. Good luck to you and know that there are several (((sisters))) here that are in the same boat. We are always willing to listen!
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  #12  
Unread 12-19-2004, 06:13 AM
The chronic pain nightmare

Dear Uterless,

I feel comfort to hear that I am not alone. I haven't posted in a very long time, but I lurk everyday. Everything you have described is happening to me too. I had a TAH 8/03 then I had my left ovary removed 6/04 and another surgery in 8/04, plus two previous c-sections. So I have been cut from ear to ear five times total and have very bad adhesions. I have been seeing a pain managent specialist and I still don't feel better. Some days are better than others. I have been on Percocet everyday since May 2004 and it doesn't work anymore obviously. I am not an addict, I truly need medication. I have a tolerance to pain meds so not a heck of a lot works for me anymore. I was in the ER yesterday for 7 hours having all sorts of tests b/c I couldn't even stand up. No one has difinative answers for me. This chronic pain has caused depression and suicidal thoughts. I am taking antidepressants and seeing a therapist, doing acupuncture, you name it. It is hard to keep a positive attitude as this point because I have been dealing with daily pain for a year and a half. I need help with my two little ones everyday and this is caused financial stress to say the least. I have been feeling so alone lately and was comforted to hear that I am not alone. I am sorry you are going through this too, but it is just comforting to hear I am not the only one and I am not crazy. I would love to hear from you. Maybe we could help one another get through this. Feel free to PM if you want. Thanks for listening.

Lynn
  #13  
Unread 12-19-2004, 07:07 AM
The chronic pain nightmare

Dear sisters...I am reading your posts and so sorry to hear about your pain and suffering. I am hopeful that the surgery has remedied my problems with endo and adhesions. Time will tell. The thing that concerns me the most about these posts is the suicidal thoughts and attempts. Oh please seek help for this issue. I am a survivor of a father who commited suicide which left us all with life long scars. Please consider the other people in your life that will be forever lost without you. My fathers pleas for help were not heard as no one believed he would actually do it. He did and took my step mother with him, leaving a 13 year old little girl who became an orphan, and me and my bro who were 19 & 20 at the time. We had our mother and my sister went to live with an aunt. Nothing in this world is so bad as the hurt imposed on the people left behind. I am definitely praying for you all and hope you find some comfort. Remember that suicide is not an answer!
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  #14  
Unread 12-19-2004, 10:18 PM
The chronic pain nightmare

WOW!!! This is amazing. I did not know this many of us were in this much pain. Why havent I heard anyone talking about this. I too thought I was alone in this awful pain. Most people actually get there life back after the hyst. I am 25 yrs old I had the hyst because of endometriosis, and fibroids, After the hyst. I had a severe infection that almost took my life, I was re-opened for another surgery because the antibiotics were not helping. The surgeons made a 10 inch inscion. Left it open to drain and kept me between ICU and the palace for 2 weeks. A month passed before I realized (maybe because my pain meds were out) that I had a burning, pulling, stinging sensation in a few different parts of my stomach. My surgeon sent me for 3 different CT scans, an upper GI series, and a small bowel test. Nothing was found but inflammation. I finally made an appointment to see a new family Dr. Right away she said I had Adhesions. She explained them to me and we went through some options I had. She started me on nerontin, (this past Friday) It dosent really seem to work though. She is also making my appointments to see a pain mangement Dr. and a GI Dr. because she feels I may have something going on with my bowels. Needless to say I am relieved to know that I am not the only one this happened to. Dont mean to sound like I want someone to feel the pain I do, But at least I know Im not strange... Thanks so much for your letters, wisdom, and your faith in recovery.
  #15  
Unread 12-20-2004, 07:24 AM
The chronic pain nightmare

  Quote:
Originally posted by juanitar
She is also making my appointments to see a pain mangement Dr. and a GI Dr. because she feels I may have something going on with my bowels. Needless to say I am relieved to know that I am not the only one this happened to. Dont mean to sound like I want someone to feel the pain I do, But at least I know Im not strange...
I am glad she is making you see a GI doc as well. I have extensive thick dense adhesions that are twisting my large colon making it hard to use the bathroom, I have to write down when I do go because since it is not often, I am afraid weeks will go by and I won't know it.
I can't imagine neurontin working well for this type of pain, because sometimes it is not nerve pain, it is thepain from the organs being pulled and twisted, etc.
Unfortunately you are not alone...and this is just a few of the sisters with the problems, there are others out here too.
So no , you are not crazy.
  #16  
Unread 12-20-2004, 09:32 AM
The chronic pain nightmare

Hey Marianwrn,
Thanks for your reply. It has been a real battle trying to get a Dr. to believe I was in a lot of pain. I don't really know about pain management or what they do, but I am excited to know that someone recognizes my struggles. I was not able to go back to work after my hyst. so the company I worked for just let me go. My husband has been laid off of work since last August. We just purchased a house after living with my parents for 11 months. It has been a real struggle physically and emotionally. I am not able to do the simple things that I could do before the surgery. Running the vacuum is a thing of the past, not that Im complaining about house chores, but it would be nice to have some independence. I am hopeful, I try not to let this take control of my life and hopefully the Dr's will find something else wrong with me, something they can fix. I do have a question, Do adhesions get worse as time goes by? I have had 7 abdominal surgeries in the last 4 yrs. along with endometriosis. I seriously feel like an old woman, and only being 25 thats pretty sad. I do have a wonderful husband that does everything for me and knows how much pain I am in. So I am very grateful for that. I would like to tell you something else I have been doing for the pain, but I dont think I can say it on here.

Thanks-
  #17  
Unread 12-21-2004, 10:00 AM
The chronic pain nightmare

Wow, I feel so sad that there are so many of us, but so much better that I'm not alone.
If I had a quarter for every time I've had to explain the addiction/dependence thing to people--even DOCTORS--I'd be rich! I've had doctors tell me I'm an addict. I'd rather be an addict than dead--and I would be dead if I was still in that amount of pain that I was without that narcotics.
As for the depression/suicidal stuff, I was in a psych hospital three times, and am in therapy and in treatment for major depression. I take anti depressants. Its really rough, but who wouldn't be depressed, being in constant pain?? And to put the cherry on top of my ugly sundae, my insurance benefits are being cut in 2005, and now I will be paying HUGE amounts out of pocket for my meds and doctor visits...I don't even know how I will manage. Its like it never ends for me!

And it looks like another abdominal surgery is on the horizon, which always brings on a huge depressive episode, plus my docs are both pressing me to do the hypogastric plexus nerve block. I want my pain specialist to do it because he is somewhat of a specialist at doing them, but he is out of my insurance network and it would cost me a lot of money, but my GYN wants to do it instead--and I just don't feel comfortable letting a GYN mess around doing a nerve block, even if it IS free. This is what my life is reduced to! My friends are getting married, launching exciting carreers, having babies. I am having surgeries, popping pills, living like a grandma. My life shouldn't BE like this. : (
  #18  
Unread 12-21-2004, 06:08 PM
The chronic pain nightmare

what will the hypogastric plexus block do for you may I ask? Yeah, I am with you on that, I don't think I would be comfortable having my ob/gyn doing that procedure. I knew you would get a lot of replies to this post as there are a lot of us..
  #19  
Unread 12-23-2004, 11:12 AM
The chronic pain nightmare

I guess its supposed to help with some of the pain. My doctor said the worst that can happen is that it won't work, but that it won't make anything worse. Its really the only thing I haven't tried yet. My pain is mostly on the left side, but also sort of diffuse across the front...it also used to radiate down the front of my leg, but the topamax totally took that away. They think the block would address the frontal pain and possibly the left sided pain, if any. Who knows? I am scared to try it, but also desperate to try anything. But isn't that how I felt before the hyst? And look where it got me!
  #20  
Unread 12-23-2004, 11:19 AM
The chronic pain nightmare

Yeah I know the feeling. I didn't sign up for all of this when I signed my consent for the hyst!
If I were you, I would be googling my little heart out and find all the information you can about this procedure first. I would hate to go through something that doesn't have a very good success rate. My doc offered to remove part of a nerve in my pelvis but said it only had 50/50 success rate---sorry that isn't enough for me to go through surgery again right now. Let me know what you find out, I am very curious.
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