Re: Valuable Endometriosis Information.....my story w/Dr. Rock
From: andrea (anonymous@obgyn.net)
Tue Oct 2 03:36:30 2007
Oh my God,
All I can say is that I am so terribly sorry and upset that that
happened to you! Were you able to take any action against that doctor? I
can't believe he was not there for your first pre-op, then did not even
know who you were before surgery! I would have got up and walked out
right there, I think. I have no more tolerance for mean, insensitive
doctor's BS. I'm so sorry for all your pain. I have a couple doctor
horror stories myself, but not as bad as yours.
I had one female gyno 6 years ago, do a cervical biopsy without my
permission! She's in there doing an exam and the next thing I know, I'm
screaming in pain and bleeding all over the place. She had snipped off
a part of my cervix without even telling me she was doing so.
Then in a snotty, judgmental voice, she says, "You would not have to be
checked for STD's, if you'd waited until you were married to have sex!"
I was 30 at the time! What a heartless B****! I told my general
practitioner she did this to me and he could not believe it.
She did the biopsy, so she could bill my insurance as a "surgery",
rather than just an exam. An exam would have been $300, when the biopsy
was $1000! So, now when docs push me to have expensive treatments, I
question it. Is is REALLY for my benefit, or THEIRS???
I cried in hysterics and I got as far as the hospital lobby, then
fainted from the pain. I had to sit in a chair, drink water and get my
composure back to drive home. I felt assaulted. I know that I should
have take legal suit against her, but I was so depressed and sick at the
time and just did not have the energy.
Now, I have a bad attitude against doctors, but I think I have the right
to. Too many of them have treated me so badly. I wasn't even really
getting checked for STD's, I was just having a thorough exam because at
the time I was having pain even in my vagina during sex and my periods
and did not know what it was from.
How can doctors get away with treating us like this? Then just brushing
us aside.....it seems most of the world does not understand how bad endo
pain, cramps and all the other symptoms can be, how devastating they
are. They seem to think we are all over-reacting about our periods.
That is one reason I keep going back and forth on whether or not to have
my lap and maybe my uterus out. My doctor is very reputable and a
specialist, but I know there is a risk that things can go wrong or get
even worse. Even he said, I may not feel an ounce better afterwards, or
I may get an infection and end up with a colostomy bag for 3 months. I
liked that he was honest, but all the details of it scared the living
hell out of me. My general practitioner is the only doctor who I have
ever trusted 100% and he is the only one who has helped me at all out of
the 12 doctors who I have been to for this.
Thank you so much for sharing your story. It just shows, that we must
be very careful in choosing a doctor and the treatments they recommend.
If you have a bad feeling about them, it is probably right!! Find
someone else right away. It's so difficult to find the ones who really
care about their patients well-being and emotional state.
Sincerely,
Andrea
At Mon, 1 Oct 2007, anonymous wrote:
>
>Hello all!
>
>I just HAD to respond to this post. It is an older post, from Jan-03,
>but was reposted? recently. I also have endo and have suffered with it
>since the age of 11. I also had a lapratomy with pre-sacral
>neurectomy(I know the spelling is wrong) with Dr. John Rock at Emory
>University and have a much, much different story and outcome! I am truly
>happy for Risa, and anyone else who has had such success with any
>surgery performed by any doctor....after all that is all that any of us
>are looking for, right? Less pain and a normal life.
>
>I had my surgery with Dr. Rock in March 2002 in Atlanta. I do live in
>Georgia, so it was not an out of state trip, more like a 2 hour-away
>from home trip. I was in the hospital recovering for only 2 days before
>I was able to go home. During my pre-op visits, and my initial visit
>with Dr. Rock, I was repeatedly assured by him and his staff, that not
>only could he get me pain-free, but I would/should be able to conceive
>within 3-6 months post-op. I researched, researched, and then
>researched some more both the doctor and his staff, but also the
>surgery, possible outcomes (both positive and negative), talked with
>other women who had already had this surgery performed by this doc, and
>did everything I could possibly think to do to assure a positive
>outcome. Nonetheless, my nightmare began...
>
>My first inkling that Dr. Rock should NOT touch me was when I was
>scheduled for all my pre-op labs, visit, etc. My hubby and I drove the
>2 hour trip to Emory, showed up at the office at the appointed time,
>THEN was informed that someoned "should" have called me to reschedule
>both my pre-op, and operation visits since Dr. Rock had to suddenly go
>out of town that week. This was so unprofessional that I was taken
>aback. I had already sheduled everything (babysitter for my days at the
>hospital after surgery, time off from work for my hubby, parents,
>EVERYTHING that one has to do BEFORE a major operation in a different
>city-especially with a 2 year old daughter!)So, we returned home, waited
>another 3 weeks, then went back to Emory for the surgery. The day of
>the surgery, we waited almost 5 hours in the surgical waiting room
>before I was called back. In the pre-op waiting, right before my
>surgery was to begin, Dr. Rock came into the pre-op room where I and
>many others were laying on our stretchers in all our lovely surgical
>clothes, walked arouned a bit, looked at me twice without speaking, went
>over to the nurses, then walked over to me and informed me that he had
>not even recognized me when he first walked in, asked if I was ready to
>get this over with, then said he'd see me the next day after I was awake
>from the anesthsia. It was a 6 hour surgery, during which, my family
>was NEVER ONCE informed of my status (even though they asked a number of
>times!) Finally, after my procedure, and after I was given a room
>(around 11:00 p.m.) my hell began!!
>
>To make a very long story short, my surgery and the presacral neurectomy
>were at the least VERY UNSUCCESSFUL!! Not only did my initial endo and
>period pain never diminsh a bit, I was in so much more pain, I thought I
>would die!! Eventually, I learned that Dr. John Rock, a pioneer in endo
>surgery..yadda yadda...HE HAD CUT THE WRONG NERVE!!!! I NOW-4 years
>later-live in constant, unforgiving, horrible PAIN daily and have to see
>a pain management doctor just to get through each day. Dr. Rock messed
>me up so badly that there is no way for the damage he did to be
>corrected. I have permanent illio-inguinal nerve damage in my abdomen
>and pelvis from the presacral neurectomy that he botched!! I never was
>able to conceive again, and I did end up having a total hysterectomy
>(which didn't really help with the nerve pain-but not having a period is
>GREAT!) At my last post-op visit with Dr. Rock, he informed me that he
>was a surgeon, and since he could not perform another surgery on me,
>that HIS part in my care was OVER!!
>
>This is already way too long, and is only a small portion of my 15 year
>struggle with endo and pain, I'll stop here. I just wanted everyone to
>remember that there is always 2-sides to every story. Dr. Rock may
>have performed a ton of successful surgeries for many women.....but for
>at least this one, HE made things worse!!!
>
>At Wed, 26 Sep 2007, anonymous wrote:
>>
>>Hello thank you for the info. I would like more info on indo specialist
>>i also live in Miami Florida.
>>Thanks.
>>
>>At Fri, 8 Aug 2003, alex wrote:
>>>
>>>At Mon, 20 Jan 2003, Anonymo wrote:
>>>>
>>>>Risa -- thank you so much for sharing your experience.
>>>>
>>>>Can I ask you in the future, though, to try to use paragraphs because
>>>>your message is very difficult to read. I found it too painful for my
>>>>eyes and had to stop, even though I was interested in what you were
>>>>saying.
>>>>
>>>>Thanks! :)
>>>>
>>>>At Mon, 20 Jan 2003, Risa wrote:
>>>>>
>>>>>I just wanted to provide this forum with some valuable information. I
>>>>>have done tremendous research and traveled the country in search of the
>>>>>best resources to cope with endometriosis. I recently underwent surgery
>>>>>with Dr. John Rock, former president of the World Endometriosis
>>>>>Society. He is a leading expert and innovator in the research and
>>>>>treatment of endometriosis. He performed a laparotomy on me in October
>>>>>2002 and the results have already been remarkable. I am finally
>>>>>pain-free. I am 23 years old and I have been suffering from
>>>>>endometriosis since my first menstrual period at age 11. My younger
>>>>>sister was diagnosed with endometriosis at age 13. She and I have been
>>>>>treated by the most prestigious medical facilities and doctors in this
>>>>>country. I have visited the Mayo Clinic in Rochester, Minnesota, the
>>>>>University of Michigan Hospital in Ann Arbor, Michigan, Dr. Marc Laufer
>>>>>at Boston Children's Hospital in Boston, Massachusetts and with doctors
>>>>>such as Dr. Rock at Emory University in Atlanta, Georgia. I have also
>>>>>consulted with Dr. David Redwine in Bend, Oregon and gynecological
>>>>>specialists at the University of Miami Medical Center as well. I have
>>>>>done tremendous research in medical journals and consulted with numerous
>>>>>other physicians nationwide. It saddens me to hear of the countless
>>>>>surgeries that you all have undergone and the fact that doctors do not
>>>>>know how to properly treat endometriosis. I have been in your shoes.
>>>>>But now with the expertise of Dr. John Rock and his team of
>>>>>gynecological specialists at Emory University, I am well now and I am
>>>>>off all hormones and prescription drugs for the first time in 12 years.
>>>>>Since I was 11, I have been plagued with cramps, lower back pain, cystic
>>>>>ovaries, gastrointestinal and urological symptoms due to the
>>>>>endometriosis. There is no cure for endometriosis. But there is help
>>>>>out there. Dr. Rock has taught me that often times, as with my case,
>>>>>laparoscopic surgery is not thorough enough in exploring and treating
>>>>>endometriosis. Often times, the endometriosis is deep within the pelvic
>>>>>cavity, it is in the retro-peritoneum. The laparoscope is unable to see
>>>>>all of this deep endometriosis. That is why a laparotomy is often
>>>>>necessary. I was first diagnosed and treated laparoscopically in 1999
>>>>>but my symptoms did not improve, even with continuous birth control
>>>>>usage to suppress my periods. I have learned that there is a type of
>>>>>endometriosis that one is born with, like myself and my sister. The
>>>>>pain is present before one's first menstruation or at the onset of
>>>>>menstruation. This type of endometriosi is congenital-one is born with
>>>>>the disease. This is the deep disease that needs to be removed by
>>>>>laparotomy. I have also learned that hormones do not always suppress
>>>>>the growth of endometriosis. Often times, hormones are only implemented
>>>>>to suppress the symptoms, not the growth. In addition to excising, not
>>>>>lasering or burning the endometriosis, Dr. Rock and his colleagues at
>>>>>Emory also perform a procedure called a presacral neurectomy to combat
>>>>>the neurological pathways that transmit pelvic pain. It is important
>>>>>that young girls and women, like yourselves, realize that painful,
>>>>>debilitating periods are not normal. It is very important that you find
>>>>>the right specialists. There are too many myths and misconceptions out
>>>>>there regrading endometriosis. You owe it to yourselves to find the
>>>>>best healthcare providers. I consulted with very reputable specialists
>>>>>in my hometown of Miami, Florida but I was misdiagnosed for nine years
>>>>>and not treated comprehensively enough with laparoscopic surgery. I
>>>>>urge those of you out there, both young and old, to find the best
>>>>>doctors. Endometriosis can only be diagnosed through exploratory
>>>>>surgery such as laparoscopy and laparotomy. It is not necessary to have
>>>>>multiple surgeries and radical surgery such as hysterectomy. My
>>>>>reproductive organs have been spared because I found the best resources
>>>>>and the best doctors. I have tried everything from hormones to
>>>>>acupuncture. These treatments only mask the pain-they do not rid you of
>>>>>the disease. If you have any questions, please contact me via e-mail
>>>>>and I will get you in touch with the best endometriosis specialists. It
>>>>>is important that you take an active role in your health-your quality of
>>>>>life and your fertility are at stake.
>>>
>>>--
>>>My name is alex newton and I am trying to find the best endometriosis specialist for my girlfriend. She has had the surgery by Dr.Rock but is now experiencing a reoccurance. The doctor who took his place has said she will more than likely have to have a hysterectomy. She is going to try a strong hormone therapy first to see if this will help. We are wanting to start a family and we would like to explore all of our options before we have to settle on this procedure. Any help you could give me would be greatly appreciated.
>>>
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