Re: Looking for referral for endometriosis laparoscopic specialist in Maryland or neighboring states
From: Carol (anonymous@obgyn.net)
Thu Dec 30 08:41:53 2004
Hey Krista: How did you like Doc MacKoul? I have endometriosis too (use
to say I HAD it, sigh). I had a hysterectomy 13 years ago at age 29 but
they did not take my ovaries. I now have a cyst on my left ovary (age
42). I went to one doc last time for 5 years that just seemed to do the
lap and put me on lupron then do it again after 3 months 4 times.
Finally, I found another doc and he suggested the hysterectomy. They
found endometriosis on my colon and lots of scar tissue. It has been
gone all these years now. I just don't want to go through the issues
with another doc again. One that seemed to give me the "pat" answer for
problem and not treat me as an individual. I also found the
endometriosis society too. I also have depression (mostly seasonal),
asthma and allergies and found that endometroisis can be tied to those
too. sheesh.
--
Carol
At Wed, 9 Jun 2004, Krista wrote:
>
>Hi endo newbie,
>
>That is great advice. In fact, I may print out your message and bring
>it to my appointment. I do have two edometriomas - chocolate cysts. The
>one on my right ovary spans 7 cm at it's widest point. It's actually in
>the ovary. The one in/on the left is much smaller. I've been chronic
>bowel trouble for fourteen years and I have always been told it was IBS!
>Very painful periods and other very telling signs. Why did it take so
>long to get a diagnosis??? I partially blame the doctors and partially
>blame myself and partially blame bad luck. My endometrimosis is
>everywhere - bowels, bladder, diaphram, liver, etc, etc. My doctor says
>she is not an endo specialist and is very supportive of me seeking a
>second opinion. She thinks I am at stage 2 endo - but I'm wondering if
>it may be worse.
>
>I think I'll check out MacKoul (it's only a ten dollar co-pay) but not
>get my hopes up. Do you have Dr. Reich's number?
>
>Thanks again for your advice. I'll definitelly use it and it might help
>make a difference in the course of this disease!
>
>--
>Krista
>
>>Hi Krista,
>>
>>I've seen Dr. MacKoul's name in my insurance book. From my experience,
>>I've found that you could be the best surgeon, but not necessarily know
>>too much about how to best treat an endometriosis patient. I really
>>like my surgeon. He is the best oncologist in the DC area. After my
>>laparoscopy that converted to laparotomy and a 7" scar, I still have
>>endo. Not because he was a bad surgeon, or not a qualified
>>surgeon...but b/c he is a doctor who follows traditional surgical
>>protocol. He's not an endo doctor and therefore wont do the kind of
>>risky surgery our situation calls for. He has already told me he can do
>>no more for me. I have massive bowel adhesions, an obliterated
>>cul-de-sac and a rectovaginal mass. No normal surgeon will attempt to
>>remove endo in these areas if it's not something they do every day. This
>>doctor at Holy Cross may be really good, again. But not an endo
>>specialist. Ask him if he's heard of Dr. Reich and Dr. Albee in
>>Atlanta. Ask him if he'll excise deep infiltrative endometriosis. If
>>you have a chocolate cyst, most likely you also have deep infiltrative
>>endometriosis. Resecting or removing that cyst will not get rid of your
>>endo and I'm sure you've read that by now. As for Dr. Harry Reich, I'm
>>told he is the godfather of endo surgery (or at least one of them). His
>>specialty is excising Stage IV endo from the cul-de-sac and bowels. He
>>is the doctor you go to in "worst case scenarios."
>>
>>In retrospect, I wish I would have gotten a diagnostic lap locally and
>>then gone to see an endo specialist to avoid the laparotomy. Definitely
>>let me know how your appointment goes. Good luck!
>>
>>At Tue, 8 Jun 2004, Krista wrote:
>>>
>>>Dear Endo Newbie,
>>>
>>>In the less than last 24 hours I came across the name of a doctor in DC.
>>>His name is Paul MacKoul and he is an expert in laparoscopy and pelvic
>>>conditions (i.e. he routinely does hysterectomies laparoscopically). He
>>>works out of Bethesda and is director of Gynecologic Laparoscopy at Holy
>>>Cross Hospital. His number is 301-664-6490. I am going to meet with
>>>him this upcoming Tuesday and I hope to find out if he has done a lot of
>>>endometriosis and ovarian endometrioma operations laparoscopically. I
>>>have also done a lot of research about what some specialists say is the
>>>best way to remove the endometriosis (i.e. through excision as opposed
>>>to vaporization) so that may help me determine if he is the one I am
>>>looking for.
>>>
>>>I really hope he is an expert in endo because otherwise I may have to go
>>>out of state and out of my insurance network which will probably cost
>>>thousands of dollars.
>>>
>>>How did you hear about this doctor you are going to see?
>>>
>>>Unfortunately, I won't be able to make that lecture as I have to work,
>>>but I would love to hear about it if you do go. I may see if I can get
>>>off of work early, but right now I have not earned any sick/vacation
>>>time from my new job.
>>>
>>>--
>>>Krista
>>>
>--
>Krista
>
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