Re: HELP!!!!---->Joan
From: anonymous@obgyn.net
Sun Jan 30 21:22:43 2000
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: 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 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 <anonymous@obgyn.net>
>>To: Multiple recipients of list ENDO <anonymous@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 >>
>
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