|
Re: HELP!!!!---->Joan
From: joan (anonymous@obgyn.net)
Mon Jan 31 13:02:47 2000
We probably should, since there doesn't seem to be any info out there on
this stuff. I don't know about you, but this frustrates me to no end. Please
do keep in touch with me if you find ANY info, please pass it on. Thanks
again. Joan
>From: anonymous@obgyn.net
>Reply-To: anonymous@obgyn.net
>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>Subject: Re: HELP!!!!---->Joan
>Date: Sun, 30 Jan 2000 22:25:28 -0600
>
>Joan,
>
>You are more than welcome,i am always glad to help a fellow endo sister.
>l understand totally how you feel,i felt that way also.
>We will have to keep in touch and when we find information on it we can
>send
>it
>to all 3 of us lol,we can start our own group.We should start by
>shortening
>endosalpingosis to Endosal, just to make it easier.
>HUGS,
>
>Belle.
>-----Original Message-----
>From: joan <anonymous@obgyn.net>
>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>Date: Monday, 31 January 2000 3:08
>Subject: Re: HELP!!!!---->Joan
>
> >Belle,
> >Thank you so much for answering my plea for help!!! I was beginning to
>think
> >that I was the ONLY person in the world who has ever had this stuff! I
>can't
> >find ANYTHING on the web about it either! You really have helped...
>Thanks
> >again! So very much! Joan
> >
> >>From: -Tinker-Belle-@msn.com.au
> >>Reply-To: endo@obgyn.net
> >>To: Multiple recipients of list ENDO <endo@forum.obgyn.net>
> >>Subject: Re: HELP!!!!---->Joan
> >>Date: Sun, 30 Jan 2000 04:01:04 -0600
> >>
> >>Hi Joan,
> >>
> >>l am so sorry you have had such pain and have been through such a
> >>traumatic
> >>time.
> >>l also have Endo and Endosalpingosis,it happens in women with Endo and i
> >>was
> >>told it was about 1 in 200,so we are very rare cases.They don't know
>much
> >>about EndoSalpingosis, they do know its the lining of our tubes which
>is
> >>misplaced.They think it may cause pelvic pain, i only know of one other
> >>girl
> >>with it and she has had ectopic pregnancies and quite a few miscarriages
> >>but
> >>this is all i have been able to research.l am still researching it and
>if
> >>i
> >>find anything i will let you know.There is not much out there,abit like
> >>endo
> >>was when i first began researching for my documentary.
> >>l hope this has settled your fears,i still would recommend you find an
> >>educated endo specialist,that is up with all the latest research,as we
>have
> >>a new disease that has just been given a name and we need a doctor who
> >>knows
> >>Endo inside out and who also knows at least about Endosalpingosis.Good
>luck
> >>and if i can help in anyway just drop me a line.
> >>Best Wishes and Many Pain Free ones.
> >>
> >>Belle.
> >>
> >>-----Original Message-----
> >>From: joan <jlove1214@hotmail.com>
> >>To: Multiple recipients of list ENDO <endo@forum.obgyn.net>
> >>Date: Sunday, 30 January 2000 3:57
> >>Subject: HELP!!!!
> >>
> >> >Ok ladies, I may just have to kill my doctor!!!! I had my laproscopy
>in
> >>Dec.
> >> >he told me that it "looked" like endometriosis. And began treating me
>as
> >>if
> >> >that's what I have. He gave me the 3 months of lupron. I went
>yesterday
> >>to
> >> >discuss hysterectomy with him, because the lupron isn't working. He's
>now
> >> >telling me that the pathology on the biopsy he did came back as
> >> >endosalpingiosis. He doesn't even know what that is... He had to look
>it
> >>up.
> >> >All he could really tell me, is that it is not cancer, and it will not
> >>turn
> >> >to cancer, and that it is "associated" with endometriosis. He's trying
>to
> >> >tell me that the lupron should have stopped my cramps, and since I'm
> >>still
> >> >having them, that either their all in my head,or that their from
> >>"something
> >> >else." That I can have a hysterectomy if I still want one, but "what
>kind
> >>do
> >> >I want?" Can you believe that? What KIND do I want??? He asked me if I
> >> >wanted something stronger than Motrin for the bad days.. When I said
>yes,
> >>He
> >> >asked me "what do you want?" I told him that I have some demerol at
>home,
> >> >and on the really bad days, it doesn't work, so he gave me Tylenol
>with
> >> >codeine... TYLENOL WITH CODEINE!!!! When demerol doesn't work!!!!! I'm
> >> >trying to get a new doctor... Since I have to treat myself here, am I
> >>going
> >> >to have to do my own surgery too??? AM I over reacting? My head is
> >> >swimming... I think I might have to shoot him or something... Does
>ANYONE
> >> >know ANYTHING about endosalpingiosis??? I can't even believe this
>crap!
> >>Can
> >> >you say INCOMPETENCE? I printed the Heather letter, and I'm sending it
>to
> >> >him today! I tried to tell him that after reading some of all of your
> >> >stories and problems with the lupron, that it doesn't seem to work for
> >> >everyone, and it doesn't stop everyone's pain, he told me that I'm
>wrong,
> >> >That if the pain was related to my endosalpingiosis, that it would
>stop
> >> >hurting when I stopped ovulating. I am not an idiot, I am in real pain
> >>here!
> >> >Maybe not as bad as it was before the lupron, but I am definately
>having
> >> >pain! I asked him to do a MRI just incase there is something else that
>we
> >> >may be missing. I don't know if it will do any good, but I figure it
> >>can't
> >> >hurt either. Right? He also keeps getting me confused with his other
> >> >patients. He'll say something, and then say "oh no, that's not you" If
>I
> >>let
> >> >this man perform surgery on me, is he even going to do the right
>surgery
> >>if
> >> >he can't keep his patients straight???? HELP!!! I'm losing my
>mind!!!!!
> >>Any
> >> >info that anyone has please pass it along!!! I'm freaking out!!! Joan
> >> >
> >>
> >><< endo@obgyn.net.vcf >>
> >
>
><< endo@obgyn.net.vcf >>
|
|
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)