ENDO Messages for January, 2004: Re: Aaaaaaaaaargh (Needed to vent)

Re: Aaaaaaaaaargh (Needed to vent)

From: Susan (anonymous@obgyn.net)
Sat Jan 31 19:08:25 2004

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Next message: Angela: "Please Help; Pain Relief Frustration"
Previous message: margo: "Re: Experiencing a new pain...wondering if anyone else has this"
In reply to: Noelle: "Aaaaaaaaaargh (Needed to vent)"

Nicole, Your Dr does not sound qualified to diagnose a cold - get another Dr immediately. There is only one way to diagnose endo - thru laproscopic surgery. His pelvic exam can't tell if your bladder or colon or pelvic walls or intestines are covered with endometrial implants and adhesions. If you were diagnosed with endo yrs ago, despite your pregnancy and perhaps relief of symptoms - it hasn't gone away. I have heard the progressive growth pattern of endo cells likened to the progressive growth patterns of cancer cells. While endo in itself is NOT a cancer, it grows & spreads in a similar way. It may sleep, but it does not go away. This is probably why Dr's speak of endo as being "in remission". Pregnancy, because of the suppression of estrogen, can put your endo into remission, but it will not cure it. There is no cure for endo, just as there is no cure for cancer. Everyone is different and someone might go for yrs after a pregnancy before the discomfort from endo becomes manifest again. Or perhaps their symptoms come back within a few short months. Birth control pills (Seasonale) and Depro (also birth control) will slow the endo growth but they won't stop it. Lupron, though highly controversial, seems to be the best bet going at the moment simply because it stops the production of estrogen altogether. However, since estrogen is such a crucial hormone to young, healthy women, it also makes for some unpleasant side effects. Sort of like getting prematurely old before your time. Being young in an old woman's achy body. I'm about to start Lupron myself & I'm armed with Viactiv (calcium chews) and a multi-vitamin with calcium. You begin to lose bone density immediately with the 1st shot of Lupron - thus all the aches from people who were never told to take 1,500mg daily of calcium to prevent osteoporosis. Your endo could be coming out of pregnancy remission & waking up with a vengence. You need a Dr who's willing to maybe do another lapro (since your last one was 10 yrs ago) and monitor you closely and work with you to see what your endo responds too, not just throw birth control pills at it. I don't know of any Drs in the Dallas TX area, but I do know of 1 on the west coast & 1 on the east (not much help). East coast is Bethesda MD Naval Hospital and I was very privelleged to have the former director as my Dr. I wish you the very best. Hang in there!

At Tue, 27 Jan 2004, Noelle wrote: >
>Ok...so I went to the Doc on Jan 22. Told him that I never stop
>hurting, I've been consistently spotting between periods about 1 1/2
>weeks post menses, and that I've been bleeding more heavily and passing
>clots, which I didn't do pre-pregnancy. He did my pelvic and says
>there's "no sign of Endometriosis" because he says my ovaries and uterus
>move freely and that there is no sign of adhesions. This was all
>determined by a freaking pelvic exam.... I told him I have
>Endometriosis. He asked me how I knew. (He was not the Dr who
>performed my lap in 94) I told him I've had a laparoscopy. He says well
>your pregnancy should have gotten rid of it.(The only positive thing I
>have to say about pregnancy is my 19 month old son...he's a doll...
>pregnancy was miserable hehe) But, maybe it could be coming back. Ok...
>I'd like to know when it was ever gone??? My lap was a Diagnostic Lap...
>Dr Schklair didn't remove anything except for biopsy.(I'm 33 now, lap
>was performed & diagnosed when I was 23, been dealing since I was 15) My
>reports show I had or have it in the cul-de-sac area and on my ovaries.
>Dr Schklair never categorized me either, so I have no idea what phase I
>am. ::eye roll:: Anyway... my current doctor gave me a sample of
>Seasonale... a 3 month cbcp, that allows 1 period quarterly. Has
>anyone tried this stuff? It's a levonorgestrel/ethinyl estradiol bcp.
>I've had bcp issues before. I'm scared I'm going to have the same
>massive mood swings I've experienced in the past. Fort the pain.. he
>gave me Bextra... an anti-inflammatory that doesn't do JACK. Grrrrr...
>he says "once you start the cbcps your pain will go away". It never has
>before... It actually sometimes gets worse, plus I become a raving
>lunatic on the verge of a tri-state killing spree if you know what I
>mean. Besides kicking this doc to the curb, anyone have any other
>suggestions? Anyone know of a fantastic doc in the Dallas/Ft Worth area?
>I'm going to try to get into Dr. John Dulemba... but I heard it's
>hard. HELP!
>Thanks for your kind ears...and patience with my novel...
>
>Love & Light,
>Noelle

Next message: Angela: "Please Help; Pain Relief Frustration"
Previous message: margo: "Re: Experiencing a new pain...wondering if anyone else has this"
In reply to: Noelle: "Aaaaaaaaaargh (Needed to vent)"

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