Re: I'm home =)

From: Robin (rmasse2333@aol.com)
Tue Dec 26 08:08:54 2000


All I can say is I know how you felt when you found this site, I still feel like that!! It is too bad that you have had to go through so much. You will find alot of great information here, use what ever you can to help. This place is great for venting as ard (adhesion related desease) causes much frustration. Welcome home Robin

At Sun, 24 Dec 2000, Nikiti wrote: >
>Hello all,
>I couldn't believe my eyes when I saw this site, I think I am still in
>shock! For YEARS I have been suffering with adhesions and pain, they
>said I have Asherman's Syndrome, which was explained to me as being
>(quote) "severe, dense adhesions that have pulled my insides together
>and stuck them like glue"... I never knew that there were other people
>out there that have been through what I have and that continue to suffer
>just like me. I mean, I knew there MUST be someone else like me
>somewhere in this world..but I would never know them, I am pleased to
>see that I am wrong about that. I don't have a life (sexual or other),
>I suffer daily in horrific pain, I most of the time feel like I am alone
>and that nobody believes that I am in the pain that I claim to be in...
>I have supportive family and friends and a wonderful husband that has
>been with me for all 5 of my surgerys and he never complains...but I
>still get those awful feelings of being alone and not being believed
>about my problems. I had my first surgery when I was 16 yrs old.. I
>had an ovarian cyst on my right ovary and upon opening up my stomach and
>removing the cyst (along with half of my ovary) the doctors found out
>that I was born without a left ovary, I have the tube, just no ovary.
>Then 5 years later I had another cyst (they average grapefruit size and
>bigger) and they did another surgery, I had mild adhesions but nothing
>serious, then a few years later, I had another cyst and they were
>supposed to do a laporoscopy, that ended up being a 9 hour surgery and
>when I woke up I had tubes everywhere, even one down my nose to keep my
>stomach empty so it could heal from having been cut on to remove
>adhesions.. I was in the hospital over a week and the doctor told me
>that my insides were "obliterated" it was such a mess and he had never
>seen adhesions so bad that they made a video tape of it and use it at
>the University as a teaching video! I could not believe what he told
>me..I had never heard of anything like what he said, my tubes were
>"glued" on top of my uterus, my "fatpad" had to be taken out, he said
>basically every organ in my body except my heart and lungs were cut on
>because of adhesions. Hearing what he told me made me sick! =*( I wish
>I could say that this was the end of my story...but it is only the
>begining.. I wont go into detail about the rest because I realize I
>have written so much already. Now though, I am facing another surgery,
>2 years ago I had a complete hysterectomy, removing what was left of my
>ovary and tubes... I didnt want the hysterectomy because I didnt want
>to go through "the change" so young.. but they promised me if I had it
>done, I would never have another cyst and I could have a normal life
>again. Well as many of you who suffer from adhesions and pain know, if
>anyone can offer you a "normal" life, you would do anything they asked
>you to do, right? So I agreed. (For a "simple" hysterectomy, I was in
>surgery for 11 1/2 hours and they had problems with me bleeding and of
>course I had severe, dense adhesions and everything was once again
>"glued" together). But now, just a week ago..I was rushed to the
>hospital in a squad because I thought my bladder had burst or something,
>I was paralized and the pain was so bad I fainted... after every test
>known to man was done on me (CT scan, ultra sound, vaginal ultra sound,
>a pelvic, pap smear, blood samples, urine samples, etc...) they informed
>me that I have a grapefruit sized cyst on my ovary!! I almost passed out
>from shock! Of course my first question to the doctor was HOW??? I wasnt
>supposed to have an ovary, I suffered through that last surgery so I
>wouldnt have to do this again, the doctors PROMISED me! I broke down and
>I think I had a nervous breakdown right there... the ER doctor wasnt
>very sympathetic and told me "well because you have such a mess inside,
>they must have missed part of your ovary, NO big deal, they can just go
>back in and take it out... You have had 5 surgerys for adhesions,
>cysts, and to fix the hernia caused by your #3 surgery, you are a pro
>now, he he he" Grrrrrrrr... How insensitive can you get?? I know he was
>trying to make light of the situation, but I was in NO mood for it. So
>now, I am scared to death! The last surgery, I almost died, they couldnt
>get the bleeding to stop, I have a 5 inch hole in my stomach from a
>surgical hernia and they put 2 layers of mesh on it which in turn made a
>blood clot form on top of it and I looked 9 mos pregnant, and it is
>still not gone! The doctor said my body would eventually re-absorb the
>blood clot...it hasnt happened as of yet. And now they tell me I have
>to go through it all again??? Oh my gosh =*( My family is pushing me to
>do it, they just want me to be well...But they dont understand that
>mentally I feel like if I go in for another surgery (they seem to get
>worse each and everytime I have a surgery) I feel like I wont wake up
>when they put me to sleep, I feel like I dont have any fight left in me
>to pull me through. I feel hopeless, completely and utterly hopeless.
>Im sorry I have written so much, I didnt know what to say when I first
>started writing and now I cant seem to stop! I guess I will end it
>here...I just needed to vent, and I know that all of you will
>understand. THANK YOU to whomever made this site!!
>Anyone that wishes, feel free to email me if you want to talk, I am not
>only good at talking but Im one heck of a good listener =)
>
>--
>~Nikiti
>


Enter keywords:
Returns per screen: Require all keywords: