Re: My Side of the Story
From: Karen Steward (kann@charter.net)
Sun Jun 29 10:14:32 2003
Hi Elaine,
I am so sorry you are in pain......I know how you feel about
being ignored in the US, as the majority of doctors just will
not acknowledge the pain. Many will lump all your symptoms
into the "IBS" bin, many think you are a mere "woman" and thus, there
is your problem. It is a sad place that the ARD sufferer finds
themselves in.
There is a lot of emotion surrounding surgeons, Germany etc.,
as this is such an emotional, painful existence. I am one of the
women that posts about Dr. Kruschinski/Germany (as you know)
and some appreciate it, others don't..................if I knew something
to offer someone in the US, I would be on here posting about it
.............unfortunately, I have never found any help in the US......and
God
knows Melissa and I went in and out of doctor's offices day in and day out,
month in and month out, year in and year out...............and I came home
and
buried my head in the pillows and cried so many times as I saw
my daughter once again go into her bedroom, fall into her bed
in a darkened room and merely exist...............in pain. A mother
is suppose to take care of her child, and yet, I had no
answer for her. When I finally thought I had found her help and she
had surgeries, she became worse................
I may be overzealous when telling our story...........as I am so very
thankful we have finally found help. I may not share in the way someone
else thinks I should, however, it is my hope and prayer that others
will be able to get the help they need. I am not perfect, and have
never claimed to be, but I am working in the US to bring awareness
to ARD......... there are many women working to bring this illness out
of the darkness and into the light............every effort that each person
makes will bring us one step closer to helping people here in the US
get the help they need. Melissa's story is in our local paper today! I
am excited that one more story has been published, as this will help
bring awareness. I encourage women, whether you are well or not,
contact your paper and ask them to do a story on ARD.......let them
know you cannot get help in the US...........if you are ignored, find
another
reporter and try again. If you are too ill to beat the bushes, contact me
or someone else that is working on ARD awareness and we can help you
reach a publisher in your area.
At some point there will be a doctor or two that will acknowledge the
pain and begin seeking ways to help US patients. I know we need
SprayGel approved, and that is another demand we are making in
your behalf......however, we will still need expert surgeons to accomplish
surgery in a manner that provides the sufferer with the most hope that they
will be free from the nightmare of ARD.
I know none of this does you any good right now, and I hope you can find
help right now from someone..............please don't ever accept this
illness
as your life sentence. Try to stay positive and believe that your day will
surely come when you will receive real help.
Best Wishes,
Karen
-------Original Message-------
From: adhesions@adhesions.org
Date: Sunday, June 29, 2003 09:15:18 AM
To: Multiple recipients of list ADHESIONS
Subject: Re: My Side of the Story
I appreciate both the responses on this thread explaining the Germany
procedures, the emotions involved and the results. Some of us are still
waiting for a doctor here in the U.S. to even acknowledge our pain even
exists.
--
Thus far, my gynecologist who did both surgeries on me for gyn related
problems and on the second surgery put "pelvic adhesive disease" on the
surgical report won't even discuss adhesions with me or my husband.
Instead, he says my pain is not gynecology related. I've been told
adhesions don't just hurt with activity, they hurt all the time. I
don't consider a dull ache all the time pain, just the horrible pain
that comes when I'm active. Therefore it must be in my head according
to my gynecologist. IBS has come up of course, a visit to a gastro
doctor has been done and I'm back to square one with no options.
I'm stuck in the military health care system where I can't get a
referral for a second opinion from a civilian gynecologist even though
our insurance says it's my right. I can no longer take motrin because
I've taken so much of it my stomach hurts even if I take it with food
and a glass of milk. So, I'm here hurting every day with nowhere to
turn. Because my husband is in the military (pay isn't bad, but we
don't have a lot left over you know) I don't even have the funds to get
a second opinion on my own without putting us in a financial bind. I
feel my "must be mental" pain isn't worth hurting my family more than it
already has so I wait, live with this and hope some doctor at some time
might at least try to find out the cause.
I don't know what to do other than to accept this is my life. So, for
those that can get to Germany, I applaud your efforts, your willingness
to share your experiences and feelings. At the same time, those that
can't, if you have a doctor who at leasts believes you are in pain, be
thankful. Some aren't even that lucky. I don't know anything that has
hurt me worse than being dismissed and treated as if I'm a mental case.
I pray daily that I will be blessed with a doctor who will at the least
be willing to try to find the cause of this pain. I don't want
medication, I'm not a drug seeker or a woman who is unhappy in life and
needing attention. I just want my life back where I can live freely
without scheduling my day around pain.
My absolute best to all here. There's a place for all of us and our
experiences! This board will serve no purpose if people stop sharing
their stories, so I hope those considering that will reconsider ;).
.