Re: Decision for first lap surgery - some advice :) about MRI to Andrea
From: anonymous (anonymous@obgyn.net)
Sat Feb 2 22:49:28 2008
Thank you so much everyone for taking the time to respond back the
detailed reply. It really helped to hear all the information. It sure
was a mysterious illness but I am slowly gaining more knowledge. Does
anyone know of any good laproscopy doctor in state of Hawaii (island of
Oahu)? I'm pretty scared to get the surgery right now but balancing the
fact that I want to conceive and wouldn't it be advantageous to know if
I have it and how bad it is so they can at least remove them? I must
just pray that it will not come back alot worse than I am now regarding
pain.
I appreciate all the knowledge you are giving me!!! JK
At Sat, 2 Feb 2008, anonymousalso wrote:
>
>Thank you so much Kristy for clearing up a lot of misinformation being
>presented on this forum!
>
>At Sat, 2 Feb 2008, Kristy wrote:
>>
>>Anon said, "Yes, MRI can be helpful. However, if you only have endo and
>>not adhesions it more than likely will not show up on an MRI. Several
>>specialist do not use it because the MRI can not see endo that is less
>>than 1 inch (which is a great deal of our endo) nor can it see the endo
>>that is microscopic or hidden."
>>
>>Right. And when I had an MRI of my pelvic area in Nov of 2006 because
>>of the pubic mound pain that started to occur not only did it come back
>>negative but it did not show any endo whatsoever.
>>
>>Andrea said, "that regular doctors and ob's are extremely unhelpful when
>>it comes to this disease and many women on this site agree"
>>
>>I am not one of the many women that agree with the statement that
>>regular doctors and regular OB/GYNs (will get to this part in a minute)
>>are extremely unhelpful when it comes to this disease. I've gotten more
>>help from my regular doctors including my regular OB/GYN than I did from
>>the doctor that was involved in my first surgery in 1997 except for one
>>aspect.
>>
>>That doctor, and yes, he has learned some things about endo from Dr.
>>Redwine (yep, the closest I ever came to a specialist), did me a favor
>>by introducing me to the concept of continuous birth control pill
>>therapy which along with surgery and now Zoladex when necessary helps
>>keep my endo in check. (However he didn't tell me that my endo was the
>>kind that recurred (and its in my medical record from when I went to see
>>him after surgery but I didn't find that out til later when I got copies
>>of the record for a different reason).) My regular gyn has also done a
>>lot more for me than a specialist ever could to keep my endo in check
>>because of not just the way my body deals with the endo itself, but also
>>because I have a very complex health history overall.
>>
>>But that doesn't mean I'm not happy for those that can go to a top
>>specialist and have very good results. I'm happy for everyone that can
>>just as Andrea has done. And even though I'm happy for anyone who has
>>wonderful success with the specialists I've also met a number of women
>>over the years who have had surgery with the specialists and did not
>>have good results.
>>
>>I just met someone else on another site whose friend has gotten help
>>from Dr. Nezhat in Atlanta, having surgery about 6 months ago and she's
>>still in a lot of pain. No relief whatsoever. I've told the person
>>that contacted me about their friend that they may want to consider
>>another opinion, and guess who with? Yep, Dr. Albee and Sinervo.
>>
>>Andrea also said, "You must go to an endometriosis/pelvic
>>pain specialist to get the best diagnosis and treatment for this."
>>
>>All the endo specialists are regular OB/GYNs who either like Dr. Redwine
>>decided to devote his practice strictly to helping patients with endo,
>>or like Dr. Perloe in Atlanta who went on to get additional training in
>>Reproductive Endocrinology (for newbies-these are doctors that help
>>women who are infertile and need help trying to start a family) that
>>then decided to devote their practice to helping patients with endo when
>>it comes to surgical removal.
>>
>>As for the statement, "please, don't waste your
>>time and money on regular OB's!!!"
>>
>>This is very bothersome to me to hear and if I were a newbie (minus the
>>complicated medical history overall that is) that's how I would feel
>>because regular OB/GYNs is all most on this and other endo lists have
>>available to us and will ever be able to afford.
>>
>>On this statement about endo specialists: "They are trained not only to
>>remove endo from your reproductive organs, and
>>preserve them, but also remove endo from your bladder, bowels, kidneys
>>and anywhere else it may be", I would never let them touch those areas
>>themselves and would insist that a urologist, and colorectal surgeon be
>>on standby if those areas need further treatment. The reason? I know of
>>someone who had surgery with one of the specialists that did the work
>>themselves on her bowel and it created more problems for her as far as
>>complications.
>>
>>Andrea's statement of" "Regular docs will leave endo behind if it is in
>>a hard spot for them to get to" this is true for some regular OB/GYNs in
>>local communities but not all.
>>
>>My regular OB/GYN is capable of getting behind the uterus. When I had
>>my surgery in 1999 (first with her but second overall when it comes to
>>laparoscopies) she found endo on the back of my uterus and the
>>uterosacral ligament and she removed it. My op reports from the surgery
>>in 1997 (this included the doctor I mentioned earlier that told me about
>>continuous bcp and didn't tell me I had endo that would recur) did not
>>say anything about me having endo but yet I was diagnosed with endo and
>>was told by the second doctor I had endo. When I came to my doctor that
>>I have now she found the endo that I should have been told about before.
>>I have the pictures from my surgery in 1999 that shows the endo and
>>where she found it.
>>
>>The statement, "doctors have always told me the only way to diagnose
>>this is through a lap surgery - NOT TRUE!" goes with what anon said (the
>>part I first quoted at the start of this message) that yes it is true
>>that only lap can definitively diagnose endometriosis. In order for
>>endo to show up on an MRI it would have to be very thick and that is a
>>very rare thing to happen as anon said. In Andrea's case she may be a
>>rare case so in that case I'm glad that the MRI showed what was wrong so
>>she could get the help she did and start to feeling better like she's
>>doing now (for which I'm glad).
>>
>>The statement: "If you do have endo and it does not cause you pain, or
>>interfere with your life, you may just have a mild case of it and
>>cleaning it out could help you get pregnant", the amount of endo one has
>>doesn't correlate with how much pain a patient does or doesn't have. A
>>woman can have Stage 4 endo and have no pain whatsoever, and another
>>women can have Stage 1 or Stage 2 endo and have a great deal of pain.
>>
>>The statement: "Endometriosis is an estrogen dominant
>>disease, meaning we have too much estrogen and not enough progesterone
>>in our bodies....estrogen is what makes this disease grow" is
>>interesting as to how it applies to some but not all because like in my
>>case I don't have a problem with estrogen dominance due to another
>>hormone imbalance. Without medication for that other hormone imbalance
>>I have low estrogen levels and high testosterone levels. What's even
>>funnier is that while I had the symptoms of that since I was a teenager,
>>I had the symptoms of endo as a teenager too even before I knew what
>>endo was.
>>
>>There's no doubt we are all different when it comes to this disease.
>>
>>And finally, Andrea, glad to hear you are doing well. May that continue
>>for years and years to come.
>>
>>--
>>=====
>>Kristy :)
>>
>>http://www.geocities.com/sokokl/Kristysstory.html
>>
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