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Re: is this endo or cancer or what the H*&& is wrong with me?
From: Alyson (anonymous@obgyn.net)
Thu Nov 16 11:36:04 2006
Nikki,
It seems that this is the unfortunate thing that comes with dealing with
doctors who are not well educated about this disease. They know the
basic symptoms that are common in most of the patients they see, but are
not familiar with some of the less common symptoms. So, since it seems
outside the norm they bounce you to another doctor that might have a
plausable diagnosis for your symptoms. But, in alot of cases it should
have been something the gyn recognized as an endo correlation, so you
get bounced back there. I know it is intensely frustrating. Like you,
so many of us have been to every internal specialist under the sun to
attempt to get some answers. The crazy thing is the ObGyn's we all
count on to be a specialist are not always up to date on endometriosis.
I would also encourage you to seek the opinion of an endometriosis
surgical specialist. The biggest names I know are Dr.s Albee, Sinervo
(both at CERC in Atlanta), Dr. Cook (CA), Dr. Redwine (Bend, OR), and
Dr. Liu (Chattanooga, TN and NY, NY). You can google these names and
get their web pages. Dr. Cook's web page is incredibly informative.
It took me awhile to find a gynecologist who was comfortable enough to
be honest with me that she does not have the skill level to treat my
endo. I just saw her today and she suggested that I also look into a
Reproductive Endocrinologist who deals significantly with endo. So, I'm
going to give that a shot and in the meantime try to get in with one of
the docs I mentioned.
Just know that you are not crazy. Endometriosis causes alot of weird
symptoms, but also tends to go hand in hand with other conditions (like
the IBS, etc.) that are not caused by endo but are commonly found in
patients with endo.
Alyson
At Thu, 16 Nov 2006, Julie wrote:
>
>Nikki,
>>From what you have described about cysts and all the pain it sounds like
>endo to me but I would be very cautious to jump to any conclusions in
>case it might be smething else. But endo does cause the symptoms you
>have described plus all the bowel symptoms. I have endo with big cysts
>coming and going every cycle and a irritable bowel syndrome(IBS)and I
>have that gas almost all the time and cramping in the intestines plus so
>many vague abdominal symptoms hard to describe here. Endo can cause a
>lot of different symptoms in different people and an irritable bowel
>with gas, pain during sex are very common associations. I would go for
>a lap with a SKILLED endometriosis surgeon and NOT with a ob-gyn. You
>might have to travel to find one and they might be costly but in the
>long run it will be worth it. Other doctors or surgeons who are not
>skilled with endo might end up doing no more than giving you a diagnosis
>while a skilled doc will also remove that endo if he/she sees it without
>damaging your organs and that is what you want. I got it done with my
>RE..she was skilled enough to remove 'some' of it but was scared to try
>removing most of it as I had lots of it. I am happy that surgery went
>on fine without event but then it didn't help as much as I would have
>liked it.
>
>Not sure if that helped. Endo is the only thing I can talk about coz I
>have it. You have already ruled out other things so it will be good to
>rule out endo also.
>
>hope u feel better soon
>
>At Wed, 15 Nov 2006, Nikki wrote:
>>
>>I will try to keep this short but it will be VERY hard to do - but I'm
>>giving my complete history in hopes that SOMEONE out there will be of
>>help. in 1992 I had a C-section to a very premature baby. He did not
>>live. I had some scar tissue, and slight pain once in a while but
>>nothing bad. In 1999 I became pregnant again, and had the same
>>complications with this baby. I had a great OB and and my son is now 6.
>>C-section again. Right after I had him i started to grow Endo. I had a
>>small cyst removed in 2003, and my tubes tied, and some endo cauterized.
>>last year I had severe pain and they found a cyst the size of a baseball
>>on my right ovary. They removed all of the tube and ovary. In
>>September of this year, I had a very excruciating pain on my lower right
>>side. I went to the emergency room and they concluded it was probably
>>my endo again. My ob was not convinced and had a CAT scan done. They
>>found a small "something" on now my LEFT ovary, but no apendicitis - no
>>cyst/whatever on the right. They also found a tumor on my spine. More
>>tests concluded it was most likely benign, and that it had been there
>>for a very long time. In the mean time i was still having the right
>>side pain, but it started to effect my bowles. I started getting
>>HORRIBLE cramps and ALOT of gas (I don't usually have gas much at all) I
>>have had an upper endocopy, an ultrasound on my gall bladder,(sometimes
>>the pain is situated right under my breastbone and on the right of my
>>ribs) kidneys and liver, liver tests, Chron's disease tests, CA-125 test
>>(came back only one point above normal) a HIDA scan on my gall bladder,
>>another cat scan, an MRI, and a colonoscopy - where they removed a small
>>polyp. all with normal results. All that is left is a LAP, and they
>>will probably remove my apendix "for drill." In the mean time, the lower
>>right side pain comes and goes, and for some reason I have
>>strange/horrid heartburn, and a strange pain that goes from just below
>>my belly button all the way to my heart. (it feels like, anyway it's a
>>straight line ) it's VERY sharp and extremely painful. I can't eat. I
>>can't sleep - and I"ve lost nearly 10 pounds. (not something I need to
>>be doing - I'm thin enough) I'm also only 36. Ovarian cancer runs in my
>>family - but the CA-125 came back basically normal. can this be the
>>endo causing ALL of this? SHould i have yet another LAP/surgery on my
>>belly? I just started a new job and I don't know what to do. I can't
>>have sex because I'm afraid it will set off an epidose of those horrible
>>cramps. (The cramps are not where you'd think - like in my uterus or
>>surrounding area - just like in my colon and belly - and up under my
>>ribs- kinda) The pain also radiates to my back - especailly on that
>>right side - like someone has shoved a sword right through me. I havn't
>>had any of the BAD cramps for a couple weeks, 9But i have also obstained
>>from sex, as well) but the lower right side pain and the weird pain from
>>my belly button to my heart - or whatever and "sparkly" pains (they come
>>and go)all over are constant. I can't continue to take pain meds to
>>cover this up. I'm tired, I'm stressed and I'm freaking out. how could
>>endo effect my bowles in the way that I would get horrible Gas??? WHAT
>>in the heck is going on with me? I have the OB and the GI doc's pointing
>>fingers saying it's GI - NO - IT"S OB, GOD! why can't they figure this
>>out? Thanks for reading - if you need more info I'll try to provide it.
>>
>>THanks
>>~Nikki
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