I had adhesions for 10 Years before detection
Diagnosed on July 29, 2001
I have 1 Child
My Birthday is Friday, October 13, 1961
I live in North Attleboro, Massachusetts USA
My name is Dawn Rose and here is my ARD story as I share it from time
With stage 4 Endometriosis leaving me
with diminished bowel and bladder function, I felt like my life was being
taken from me as my days were filled with pain and suffering! In 2001 I
begged for a hysterectomy being told this would “cure” me or at the least,
stop the fierce pain and constant bleeding that plagued me not just once
a month, but every minute of everyday every month! “Adhesions: were found
during this surgery, a word I had never heard before, but I wasn’t concerned
about THEM as my uterus was gone and no more pain was in my future, nothing
for me to worry about at all! I didn’t even have one single concern about
the “adhesions” as if there was a concern, wouldn’t my surgeon have discussed
that with me, after all, that IS there job!
As a “former” hard working “nationally renowned
chef,” (desserts were my specialty!) a single mother of a wonderful 7 yr.
old, (my saving grace!) I just wanted to live the life I had worked
so hard to create for us, but that was not to be as little did I realize
that following my hysterectomy, a completely different and horrific path
was being laid for me! This is where I see the beauty in not knowing what
we face, as would we allow it to become reality?
With pain once again ravaging my body, along
with nausea, fatigue and every other type of “bowel syndrome” one can think
of, my world was reduced to the heating pad and pain pills, and my precious
7 year old doing the cooking for us as her “chef” mom just could not find
the strength to do it herself. As I fought through my days, my little came
home from school to fend for herself, and help mommy, when mommy should
be helping her instead! I am sure I complained about life much more then
she ever did, in fact, I know I did because my little one simply didn’t
complain that she has been forced to take on more responsibilities than
a child her age should. It is not hard to be thank-full for all that we
had, but I did have a fear that it was going to get worse, and it did!
Having been self-sufficient for so long,
having to accept state medical assistance was difficult for me to do, but
I was in dire need of medication as was my daughter, I simply had no choice.
I could not work and each month things got tougher and tougher for us with
bills piling up everywhere, and we certainly did not have any luxuries
in our life, but we had each other, and as I got worse, I realized that
we barely had each other and I was so frightened at the thought of me dieing
or being so ill that I wouldn’t be awake enough to even offer her the hugs
and words of love we shared all the times! I was desperate, scared and
confused as to this pain, no reason or rhyme for it at all, and all tests
showed nothing was wrong with me, and not did I hear the word, “adhesions”
I had applied for Social Security Disability,
twice! And twice I was denied!
I just want to paddle my own canoe again. I hate being in poverty.
Though I live in a state where medical miracles happen all the time I cannot
find a doctor to help me. Surgeons take one look at my last operative report
saying, "I am sorry, I can't help you". That ends our 10 minute appointment
that I sometimes wait months for. I still have hope though and I see life
through different eyes, as I have never appreciated the simple thing in
life as I do now. And I have never lived a fear as I do now!
Time is passing, and I am still being “rejected” by Dr.’s and
there doesn’t seem to be anyone willing to do a surgery, and now I know
why! That word “adhesions” that I thought was of no concern to me, turns
out that they are concerned about it as they tell me that because of adhesions,
surgery is to dangerous for them to do, so I have to just “live” with it!
To me they might as well be saying, “die” with it as I
can’t see anyone being able to live like this as now eating is as difficult
as having a bowel movement and the pain levels are off the charts! I can
get pain pills, and pills for this and that, and they mask some of the
problems, but they add problems too! Never ending battle of pain and suffering…
Hey, got good news SSI/disability came thru, I see the light at the end
of the tunnel! Maybe NOW I can get a good Dr. to help me, I am hoping!
As I wait for answers from Dr.’s, I realize that these
were not going to come very fast, so I decided that if I were to get answers,
I had to find them myself, so I started to research that word, “adhesions,”
and now I am not so sure I will ever get any answers to my questions to
the many Dr.’s I see, and I am not so sure I would accept them now anyway!
Things in my mind are changing fast, and I now realize that it wasn’t answers
I needed to be helped, it was the TRUTH of why I was needing the help and
why I was suffering like I am, and THAT was supposed to come from the “Dr.’s”
who I turned to for help! I am hurt in body, mind and spirit, and even
worse, I have lost trust in the Dr.’s around here! Unfortunately, I see
that this is common practice all over the country as so many others who
have “adhesions” experienced almost the exact things in life that I did
and this led me want to help them, so as I try to help myself, as now my
life has become a “swim or sink” battle if I was to ever get well enough
to take control of my life, and even more important to me, was my fierce
need to take care of my little girl!
I got my operative reports, and it
didn’t take me long to realize that I had trusted far to often, and it
was this blind faith that I had for Dr.’s that led me down the path of
pain and near self destruction! Now what do I do and who to turn
to for help!! If I thought I had felt fear before, since reality
hit and I realized I cannot expect Dr.’s to come to my rescue just because
I have medical problems, then whom do I turn to? Now I feel real blood
chilling fear! I am so lonely, I cry when I am alone, I feel so desperate,
who will help me help myself, all I want to do is live, is that so much
to want? I want to survive this, that’s all I want!
Without really planning it, I have joined the battle of
advocacy! As I learn, I will teach, as I fight, I will share my ways, and
what ever I accomplish, I will pave the way so others might also accomplish
it if it might help them as it did me! I am an “advocate” another new word
in my vocabulary, not used in the world of cooking, but this hat fits just
as well as my “chef’s” hat fit, and when wearing it I find strength to
fight through my days of pain and suffering, I am not alone in this fight
for life! I see the light at the end of
the tunnel! I am hearing of “miracles” coming out of Germany
and others who have “adhesions” are being 100% cured by a surgeon over
there, and you can bet that I am planning to get my slice of life, my “miracle”
too! If it takes every cent I have, begging, borrowing and short of stealing,
I will get there! Love, Dawn
“2/7/03 My Initial Gasless Adhesiolysis in
Frankfurt, Germany” I did it!
Update 8/9/03 I have been to Germany and now as
I approach 6 months post op, back to cane and diapers, “sigh” I
find myself exploring new interventions and must have remaining ovary removed.
I am in pain and bowels are once again a serious problem, more now then
ever before, what went wrong with my surgery? I was supposed to have the
best of care, the “highest quality adhesiolysis,” it was even a “gasless”
procedure to inhibit adhesions, “Spraygel,”
the most effective adhesion barrier in the world! Others got a “miracle,”
why not me? Bit for now I am to ill to even think about this, always I
have hope. I will give the devil ARD a good run for it's money and never
ever give up!
Update 12/5/03 I have had THREE surgeries within 8 months!
ARD and Endo sisters, please read this
as it just might spare you going through what I went through! I do
not share this information to create any problems for anyone, all I do
is share a truth so that others might realize that at times, what you think
is the truth, may not be! Not being educated and informed as to what others
have experienced, your left to wonder and grope for answers, and this only
leads to fear and frustration! No time for that when you are suffering
as we do with ARD!
I don’t know why I trusted again, but I thought that I did everything
right this time, asked lots of questions, “researched” the adhesiolysis
procedure, cross checked the procedure with others who had it and claimed
they were 100% well after having had it done! I went into the surgery in
Frankfurt, Germany without any reservations, why wouldn’t I think I had
a chance here, why wouldn’t I think that! I was even told by the surgeon
that his success rate for this adhesiolysis was 100% effective, and so
I put up my money and with words of others who went before me ringing in
my ears and racing with hope in my heart, and trusting once again, I was
off to Germany to claim my “miracle” as that is how the outcomes of those
before me claimed it would be!
After my second look procedure on 2/14/03 (which is done
within a few days after the initial adhesiolysis on 2/7/03 and common practice
in Germany) I was told AND based on my operative reports out of
Frankfurt, Germany, that there was “NO adhesions or endometriosis found”
that second look! I remember sighing with relief thinking that I finally
had my “miracle,” I beat “ARD,” I was on my way to health and happiness
once again! Worth every bit of money and time and energy to get to Frankfurt!
It didn't take but a couple of months, if that long, for that all to familiar
pain to take over my life again, only worse this time. I was angry, frightened
and confused as to why the familiar symptoms surfaced again after being
told that I was adhesion and endo free, worse, I sat and wondered how I
would ever convince a surgeon that my adhesions were back when they looked
at that report out of Frankfurt, (Heck, I was even thinking that maybe
I WAS crazy and should just do nothing) I was angry, frightened and
confused as to why the familiar symptoms surfaced again after being
told that I was adhesion and endo free! I realized that I was right back
to the beginning of everything as I was questioning myself if the pain
was real or "in my head" or if maybe I was a victim of " nerve" damage,"
and would I have to "accept this for the rest of my life?"
This pain, this dark constant pain, can’t
eat and bowel problems to numerous to list, tired all the time, sick from
the pills, to many pills and the pain in my soul is to great to explain,
wondering how I would make it through another night. I faced a long steep
climb up a jagged mountain that would take me nowhere but down, this is
all I knew for sure!
As my little one slept in my arms, I snuggled
my face into her hair and my tears flowed, as I felt so alone with nowhere
to turn, so alone ands scared! I cried and prayed that my Lord would
keep me out of harms way, “Lord please have mercy on me, and I am weakened
and worn out! Guide me, hold my hand, I am all she has and now it is my
time to recover, bind my scars, and win my life back, our life back, I
beg you!” There was nothing more left for me, no one to turn to,
I will never forget that feeling of abandonment thinking this was what
life would be for me and my baby, I was so tired I couldn’t even ask my
Then my phone rang, and a friend, not even a
close friend at the time was on the other end, telling me she had a surprise
for me, if I so wanted it, but non the less, it was worth listening to!
She told me that she had arranged for me to have a surgery with a Dr. in
one claimed by many to hold the hope for victims of ARD in his hands! Though
my heart told me not to trust even these words, I had also heard them many
a time and by many, many others who went to him and remained well after
years! My mind and body told me I could not pass this chance to get as
well as I might ever get, this would be my last chance, my final journey,
and I knew it! “Oh my God!” Thank-God!”
As I prepared for this trip, my mind screamed
over and over again, “ Would it be effective, would it be worse for me?”
“ Could I trust?” “ What will be found, and could it be fixed?” “What
if I was already to far gone to fix?” Fear upon fear swirled in my
head bringing with them one anxiety after another, yet I moved forward
and the night before I would leave for my surgery, I held my “saving grace”
close to me and we giggled and pretended all would be good this time, a
success for sure! Mommy would come home and we would have fun and do all
the things we talked about doing one day, and as I looked into her beautiful
eyes, I saw they were sparkling with anticipation because she really believed
it, yet she knew how many times “mommy” left for surgery after surgery
and wasn’t well enough to follow through with all our well laid plans for
life! Love, Dawn
The adhesiolys is procedure by Dr. Harry
Reich in Pennsylvania, saved my life and the “Spraygel”
used in my adhesiolysis in Frankfurt WAS effective in the areas where it
was used! Today I am recovering well and very differently then in my prior
adhesiolysis procedures. I am also recovering many areas of my life back
as a result of this surgery! I have hope and trust again as I am aware
of what was found to be the cause of my pain and suffering and I am convinced
that as much of it that could be resolved, was adequately done. I
call myself “cured” as long as that terrible adhesion pain is gone and
I can have a bowel movement and not deal with constant fear of urinary
track infections and eat and get up and do things again! Though I have
residual medical issues that are not reversible, they are not dealing with
the adhesions themselves, thus I can deal with them now and accept well
what life has given me, as NOW can "accept this for the rest
of my life!"
July 2004: This summer, my “saving
grace” and I took our first vacation in years! We flew across the
country visiting friends, sleeping in motels, went camping, made new friends,
went swimming and more swimming, ate and ate, celebrated the 4th of July
with friends from El Salvador (who experienced for the first time fireworks
and festivities expected in a country as free and prosperous as the USA!)
We visited the “Houdini Museum,” a “Planetarium and Geology Museum,” went
“Fossil hunting” and made discoveries galore, and we did some “Genealogy
Research,” and we, well, I guess we finally did “have fun and do
all the things we talked about doing one day, and as I looked into her
beautiful eyes, I saw they were sparkling with anticipation because she
really believed it,” and this time I am well enough to follow through with
all our well laid plans for life! Love, Dawn
Believe that “You Are Not Alone” in your struggle
with ARD! Reach out to others, educate yourself, KNOW the answers to your
questions before you ask them, stand up for yourself, hold your head high,
and pray that you will,
Stay Out of Harms Way!
“God Bless You All as He Has Blessed Me!”
I invite you to review
my operative reports and associated pictures of
my adhesiolysis procedures in this section of this web site:
Validation of ARD
Fact NOT Fiction
Contact me if you have any questions or comments,
I am here to help you as I have been helped!
Dawn Rose: firstname.lastname@example.org
Today I celebrate my "1st anniversary" of
being given back my life!
After facing years of losing my health
due to complication of ARD and Endometriosis.
Though I had tried everything within my power
to get some of my life back, and facing failure after failure in my attempts,
reality took hold one day and I knew I did not have much time left here
on earth! It wasn't only due to my failing health and days spent in pain,
it was when I lost all hope of ever getting well enough to live not just
a high quality of life, but to be able to live any semblance of life, the
reality that I would die from something I believed would and could be cured,
only to realize, I was wrong!
The reality in my life, was that I faced death,
and it seemed there was nothing I could do to stop it!!
Thank you Lord for showing me I was wrong!
I had been declared "Adhesion Free" as well as being told that
I "never had Endometriosis," and by surgeons whom I had trusted
my life too, so why was it that soon I was to feel so hopeless and helpless
after hearing words one would think sounded so good!
I entered surgery on this day, one year ago, after restling with myself
as to whether the pain and symptoms I had AGAIN were real or were they
in my head..even as I prepared for this surgery, and with fear of it that
nothing would be found as the cause of my pain, or that if adhesions and
endo were found, would the outcome be any different for me then before?
Yet, if I did not try to do something, my little girl would not have a
mommy, not even one who spent so much time in bed and in pain. A "mommy"
SHE seemed to have to "mother," in so many ways! I had to try one
more time, and it took every bit of my self to trust the surgeon enough
to go through this again!
After securing the most experienced Adhesion Specialist available to
me....or anyone for that matter, in my opinion, I packed and headed off
to the airport, and realized that hope had krept back into my heart and
my mind, and that was smiling as my dear pilot smiled and welcomed me on
board, and wished me the best! "Doc" Herb was in the cockpit of my
"Angel Flight" to Wilkes Barre PA.
Thank you Captain! God bless you.
I fully expected to wake with a colostomy, either temporary
or permanent...didn't matter I was too sick to care...
I knew I did not have time left to tarry on such considerations. I
just wanted to live and whatever Adhesion Related Disorder left me with
I would accept and learn to live with. I knew very well ARD can and does
Suffering from ARD for so many years I found a gift it had given me.
It is the gift to appreciate each and every minute you have on earth no
matter the compromises you must endue.
I always continued to educate myself about ARD, I studied what other
had endured. I took all that I knew and despite the psychological and physical
trauma of my prior surgery I did not give up the ship and I took the biggest
chance in my life....other surgeries were entered into to improve the quality
of my life...this was to save my life.
Dr. Harry Reich & Dr. Gerhart saved my life that
Dr. Reich dealt with
severe, often calcified adhesions. He described the surgical work that
he needed to perform as "torturous". Dr. Reich had plenty of Endo
to remove as well. Dr. Gerhart was on standby in the event a bowel
resection was necessary, and thank-God, I was speared!
I woke up and waited to hear if
I had a colostomy or not, and to hear what , if anything was found! Still
doubting myself....but not anymore! There was plenty of reason for
my pain and symptoms, and never was it neccesary for me to have doubted
myself so harshly, and there is no doubt in my mind had I not allowed this
surgery one year ago, I would either not be here today to enjoy a Boston
snowfall, and a dripping wet, red nosed daughter enjoying it to bits!
What was my life one year and a day ago?
Not to mention dodging
her snowballs as we laughed and laughed, her laughter was more for the
snowfall, mine was for the enjoyment of life I now live!
I wore diapers as I was incontinent of bowel. I had to self catheterize
as adhesions had compromised my bladder to the extent I could not urinate
on my own. I could not eat for the pain. I walked with a cane as I could
not stand upright. A year ago yesterday I took 2400mg of neurontin a day,
30 mg celexa, 2 vicodins 3 times a day, 2 clonipins a day. I weighed
approx. 120 lbs.
What was my life one year and a day ago?
No more diapers! No more catheters! I have gained 20 plus pounds and
where it is risky to eat my beloved fried clams....last night for dinner
I had roast chicken, oven roasted potatoes with a bit of crushed cumin,
green beans...about an hour later I had a caramel custard for dessert!
Today I take 600mg neurontin a day. 20 mg Celexa. klonipin still
My first time out in years, to many years to cont, my daughter and I
were off to "New York City" to visit
folks in January, 2004! "Happy New Year"
Hugs to: Bev, Anne, Guss & Tom, Sister Pauline & Pax, and Jeannie...our
singing friend! BUs rides, cold
snap, but not enough to keep us from roaming "Time Square" and Museums,
theatres, laughter, food and
Rockefeller Center Ice skating rink! OH, dreams do come true!
We also had a wonderful vacation in Wisconsin over the 4th of July!
" Independence Day" go figure! I felt like the skies lit up in bursts of
fireworks just for me! I sat enjoying the evening, listening to the bands
play, burst after burst of colors filling the air...and then I looked around
me and saw the smiles on the faces of those who I hold so special to me...of
course my little red head was enjoying this to the max, as she does everything
in her life, and there I was, with my friends, my new found family..Bev
and Bernie, Sister and Pax, ....OH, dreams do come true! Hello to my friend,
Chef Mark at our favorite camping spot!
I am not perfect I don't pretend to be. Permanent damage had been
done long before my life giving surgery, and this I ecept, living the pains
of ARD, hell, I can live with anyhtiung now!. Doctor Reich told me he could
only remove 80 percent of the endo safely and it still causes me pain.
A year ago yesterday I took 2400mg of neurontin a day, 30 mg celexa, 2
vicodins 3 times a day, 2 clonipins a day. I weighed approx. 120
Sometimes I use a cane but generally when I have done too much
i.e. shoot some baskets with my daughter, scrub those beautiful wooden
floors, scrubbing the tub....lots o laundry and snowman building and vicodin
as needed.....and since it makes me nauseous I am never in a hurry to take
it. I prefer preoccupation as the best med. ever.
I would like to thank the following people for all that they have done
to help me and pray I in turn will help others....simply because I can
and I know for a fact there is hope now as never before available to those
who suffer from adhesions.
Mrs. Beverly J. Doucette who never once questioned my honesty and who
really precipitated my miracle. Words cannot express my gratitude.
Dr. Harry Reich for exceptional surgery and for the honesty and courage
to video tape every second of their work.
That is a litmus test all sufferers of ARD MUST insist on! Dr Clark
Gerhart for being there to help.
Any surgeon unwilling to show their work could indeed have something
to hide. Photos are selective in what they show. Don't be lured into nothing
less. Do not let other intimidate you. Do not lose your individuality and
follow the crowd just because the too have adhesions.
Thank you so to;
Sister Pauline Quinn OP and Pax
Rep. Elizabeth Piorier
and my most precious daughter.
To all who work in the field of ARD advocacy, I applaude your
They saved MY life!
Special thanks to Tonya who helped the world of ARD know an important
truth! She stood by my side and together I think we saved many a patient
and many a family.
What have I learned?
Read Tonya's story here
Bless you all and to all who have touched my life from the very day
I learned what adhesions really were...
There is help available to you! There is hope! Never give up
and give in to ARD.
Do your OWN research and never depend on someone else's words.
It is your life, therefore your responsibility.
See my operative
reports from my last 4 surgical interventions....3 of which
took place in just 8 months. I hope that these operative reports offer
education on adhesion formation and learning how to them interpret
operative reports for ( or getting assistance in interpreting them)
yourself. If we the patient do not understand them, understand what has
surgically happened to us... it can lead to horrible self doubt.
Do I have them back, don't I??? Am I crazy? You can take back control
of your life and never be afraid or too proud to ask for help when you
need it. It is there if you dare to ask. Do you have anything to
Lastly, my most sincere thanks to Dr. David
Wiseman and the International Adhesion
Society for starting it all and giving us all our first glimmer