Re: Surgery or not-PLEASE HELP, I NEED ADVICE!!!
From: anonymous (anonymous@obgyn.net)
Tue Apr 22 13:38:17 2008
Nellie,
I do not know how old you are or if you want to have children. this can
have a big impact on your decision.
I have had 4 surgeries already for endo, and I can honestly say that my
pain has not improved one bit, and i still have all the fatigue, pain
and discomfort that I did before. Now, however, I also have all kinds
of scar tissue as well - in addition to the emotional scars that are
deeper than the physical ones.
I think a specialist is the only way to go. I went with a RE who didn't
really know a lot about endo, and who was shocked by the extent of my
disease when he operated. Try the specialist and see what he/she can
do. Make sure they are doing it laprascopically - and have a plan of
what they can and can not do when they do the surgery - e.g. what can
be removed, and under what circumstances.
At this point, I am home bound and can not do much at all. I am very
depressed and I have lost all hope of ever having a life again. I
waited too long to get my disease fixed, don't make the same mistake
that I did. Try to get this stuff out of you while you still have the
energy to go through with the surgery and all the tests, etc.
I wish you all the best.
Mel
Everyone is different, but I have not found any relief whatsoever with
surgery.
At Tue, 22 Apr 2008, anonymous wrote:
>
>Hi,
>I just went to well known specialist last week after leaving all my
>other doctors who couldn't help me.
>I'll start with this:
>I have Endo, and had 2 laps last year. My last doctor sent me away
>after stating he removed it all and others now want me to go on Lupron
>(which i kept saying no, but they kept offering it). Anyway, I decided
>to seek out a specialist to really help me. He was great, thorough and
>comforting. I told him my pain level, symptoms and aweful pain during
>intercourse. We then did the exam. There were so many places that were
>more tender than before. After that, he did the ultrasound. My uterus
>was tilted 50 degrees to the right, possibly attached to my right ovary.
>He said the reason for the bend was because of very deep endo pulling it
>down.
>I became very sad because when i was first diagnosed with endo he said
>my uterus was shifted to the right. But this was even more than last
>time. This is also where I mainly have all my pain, including major
>lower back pain.
>What I am confused about (as well as the specialist) is that between my
>symptoms, exam (with ultrasound) and the past pathology reports is
>inconsistantsy. Many of the last Lap findings came back as just chronic
>inflammation except in the cul-de-sac area which was positive for endo.
>But what if my last doctor was not cutting deep enough where the pain
>was and didn't reach the endo, would that be why it came back normal? or
>maybe it was the wrong area.
>I am just so incredibly confused by this. What else could it be if it
>is not endo?
>I spoke with the specialist on the phone after the appointment. He
>really asked me questions about how much pain i am in and if it is
>really interfearing with my life. I said it is and I am so tired of it.
>I told him that I am going away to grad school in August and want this
>done with so obviously i don't want to wait on it. He gave me the
>choice if i wanted to go ahead with the surgery or if I wanted to wait
>and see if the pain went away.
>What confused me about this is that nothing can fix my uterus being
>possibly attached to my ovary, maybe attached to my sidewall, except to
>surgically de-attach them, right?
>Wouldn't it get worse if I waited on that and wouldn't the endo grow
>more if I waited? wouldn't the chance of becoming infertile grow if i
>waited?
>It kind of made me think that this was in my head or something. Why
>would he ask if i wanted to wait if he knew something was wrong?
>Maybe he was just giving me the choice if i wanted to do this to my body
>again and also because it is such an expencive procedure.
>What do you guys think?
>It makes me think that he isn't sure I have it. But doing the procedure
>with his expertise with deep endo would really determine it!
>What would any of you think and do, would you go ahead with it even if
>you thought he wasn't sure if you had it but YOU know that he is the
>most qualified surgeon to find it if you did have it?
>Thanks for all your time. This is the biggest decission i need to make
>and I really need input from other women who know what it is like and
>who have been through this.
>Thank you.
>Nellie
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