Re: Quality of Life
From: chriztene (chriztene@sbcglobal.net)
Wed Dec 21 19:35:45 2005
Nicole,
I am so sorry to hear about your situation and understand completely how
it feels to have nobody take you seriously..I cant imagine what it must
be like for you living in a small town, especially since very few listen
in the bigger city.
My advice to you is have a heart to heart talk with your doctor. Write
it all down prior to your visit (your pain, quality of life, etc). Tell
him you are suffering 24/7 and adhesions are affecting your quality of
life, etc. Ask him to please help you manage your pain and if he can
not, to please refer you to a pain management clinic. Most times you
need to be referred by a doctor to a pain management clinic. Also,
research (via internet) prior to your visit and have a list of names
just in case your doctor doesnt know of a pain specialtist. Also,
realize many chronic pain patients travel several hours to there
appointments. Fortunately, you only need see your pain management
doctor every 3 months in most instances.
I imagine most would tell you it was a long road until they were finally
referred to a pain specialtist. I will tell you what many others say -
just hang in there and dont give up. I know personally, this is so much
easier said than done. I have two conditions with the first one having
a 'name' Interstitial Cystitis, and secondly adhesions. There is so
much help available for those who suffer with I.C., however, sadly,
there is so little support for those of us with adhesions. I realize it
is so very hard to 'hang in there' when you have little or no support
behind you.
I say this to all of you who read these messages to KNOW you are not
alone, its not all in your head, and there are others who are going
through the same pain and suffering you are. There is some help
available, but in order to recieve any kind of help with adhesions, you
have to sometimes go it alone - making doctor appointment after doctor
appointment with the hope of one of them listening to your plight and
taking you seriously. May God bless and comfort all of us<3..
>
>I have adhesions, albeit from the messages I have read, they are not
>quite as bad as other people's stories I have read. I am going to be
>having surgery, again, to have them removed. The last three times they
>were removed was during other surgeries, a c-section with tubal
>ligation, D&C gone wrong ending up in laparascopic surgery, and a
>hysterectomy. My doctors have been telling me that they can't even see
>my organs through all of the adhesions. During my hysterectomy, my
>uterus was adhered to my abdominal wall and "glued" to my bladder; with
>luck they were able to separate the two without ripping my bladder. I
>was happy because I did not have to wear a catheter for 4 weeks. Here
>it is a year later and I am having a lot of pain and problems. I have
>been to the ER several times, and admitted right before Thanksgiving for
>a volvulous. It was straightened out with enemas and a colonoscopy. I
>keep hearing things like, "You are just constipated." It is extremely
>embarassing and demeaning to go to the hospital to hear that there is
>nothing they will do for you. I have gone in tears, bearly able to
>walk, etc. They load me up with pain killers and send me out the door.
>I can't take pain killers during the day because they make me so tired.
>I have a pretty high tolerance for pain, but by the end of the day I
>hurt so bad, I can't stand it. I am grumpy with my kids and husband and
>I still have to take care of the house and everything else. Sex, when
>it happens, hurts and my husband is withdrawing from me. We are working
>on it, but it has been really hard. The only thing I have been given
>for pain is vicodin and they will only give it to me in small
>prescriptions.
>
>I only take them at night so I can be pain free for a
>while, but can't function on them during the day. I'm at a loss. I see
>people who are on very heavy pain killers and don't know how they do it.
>I guess I am venting here, but I am not sure how to get anyone to take
>me seriously. I live in a very small town with no major cities closer
>than a 2 hour drive away. There are no chronic pain facilities here or
>nearby. How can I get my doc. to understand what I am going through?
>How did you manage to get your doctors to start managing the pain?
>
>--
>Nicole
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