Re: Thanks everybody, Jo one more question?
From: Jo Eslick (joanne@bombobeach.com)
Tue Feb 26 02:37:00 2002
Great questions Libby! :-)
mmm hard to answer that one with a short answer..... in hindsight &
having talked to the team at the endo/Gyno clinic at the Royal Hospital
for Women in Sydney, they said I had been displaying all the classic
symptoms of endometriosis before my ovary removal last April.
I had asked my surgeon after the hyst if any endo was visible, because
when I researched that surgery I came across quite a few references to
Endo....on reading the symptoms listed I felt I was a definate
candidate. What happened during the hyst was that because of the
extensive adhesions and me kinda bleeding way too much.....the surgeons
visibility was greatly reduced.
When I had the diagnostic laparoscopy in Feb 2001, mt NEW gyno said none
was visible, but that didn't rule it out because it could be hidden
behind or in the adhesions themselves. Apparently my particular
symptoms plus the sharp pain experienced with intercourse norrowed the
area to the cul-de-sac whhich is behind the uterus, thus hidden from
view unless someone was looking for it..... however, my gyno said that
area is completely filled with adhesions, so visible signs aren't there.
I still have the crampy cyclicale pain IF my hormone levels aren't kept
at the high levels that I seem to need, and I feel the same way as I did
before, during and just after my period. So yes, I feel that is a
seperate "layer" to the pain I now experience.
My adhesions pains are varies, depending on what I have been doing and
many other factors. Before my ovaries were removed, sitting wasn't a
problem BUT sex for me was like a guy being kicked repeatedley in the
B***s, sorry, that was the way a specialist once descibed it to my
hubby...haven't found a better way of describing the extremity of that
pain.
Now, I don't suffer with that pain (Thank you Lord) BUT I can't sit in a
chair for more than an hour or two at a time, and spend hours reclining
in bed, working on my laptop computer to reduce the pain caused from
sitting.
I also experience sharp pulling pains without warning... sometimes when
I turn over in bed asleep.....naturally the pain wakes me with a shock!
I can be getting out of a chair and stand a little too quickly without
thinking and experience that pain.
I have a constant ache in my left side that radiates down my leg
sometimes all the way to my ankle on really bad days. I have a dull
pain on the left side that is quite uncomfortable if I happen to stand
too close to the sink... the door knob is in the exact right spot to
dig in....that hurts! LOL Because of the constant pain on the left side,
my pelvic floor muscles are very strong (muscles contract automatically
with pain, that's why you need to use diversional therapies...deep
breathing, reading...something that works for you). My pelvic floor
musles on the right side have almost non-existant tone, and I do pelvic
floor exercises 3 times a day to help build them up.
I also have very sharp pains that take my breathe away on the rightside
much like a double edged sword, and often includes a searing/burning
feeling. I also have a LOT of groin pain, also agrivated in the sitting
position....
I agree with you about finding alternative ways to cope with pain apart
from having "organs yanked out" as you put it LOL. You are welcome to
visit the Australian Adhesions website http://www.bombobeach.com where there is
a section called "How to cope", this section will continue to grow over
time and will offer all of us many alternatives to pain control without
resorting to surgery. However....should one of the adhesions barriers
really start to show increasing success, then I may consider surgery
again. It is up to the individual how they address their pain and the
control of it. To cope with high levels of pain you need a good support
system which includes family and friends who understand your disability,
a doctor willing to work WITH you to find a suitable pain regime, and
personal will power to try things and allow time for you to learn the
various techniques etc associated with some of the exercises. Having
said that, what works for me, may not work for you. While at the same
time, you might find something that works for you, but when I try it....
it doesn't work for me.
Keep the questions coming Libby, this is the way you learn to take
control of your medical treatment and have an active role in choosing
which path is right for you!
I haven't time to re-read this email....so excuse spelling and anyother
problems with it! I look forward to your next question ;-)
love & gentle hugs
Jo http://www.bombobeach.com
At Sun, 24 Feb 2002, Libby wrote:
>
>Thank you Chrissy, Sally & Jo, for your responses. :O) I appreciate the
>help you offer!
>
>Jo, one more question....in hindsight, are you able to differentiate
>between the adhesion pain and the endo pain? I ask because my daily pain
>is different from the cyclic pain, is that even a consideration....and
>was the endo visible on the outside of the ovary, or not found until
>pathology?
>
>My surgeon is a lap specialist who has studied Dr. Redwine's
>technique's in Oregon (an endo specialist), so that's why I ask - I
>would assume visible endo would have been noted, but is it possible to
>have it inside the ovary for years and not know it, not see it?
>Unfortunately, he didn't send any samples of the adhesions to pathology.
>
>Please know, I AM listening to the advice here - I'm trying to figure
>out non-surgical alternatives to dealing with this, I prefer to find the
>source of the problem before yanking organs!
>
>Thanks again for your time...
>
>--
>Libby :O)
>
--
I am not a medical person, and all my messages are based
on personal experience. I am a fellow adhesions sufferer
reaching out to help others.
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