Advice, please, on how to make next surgery my last!
From: Robyn in Napa, CA (robynlmyers@earthlink.net)
Mon Sep 11 19:05:58 2000
Hello,
I'm new here. Recently moved here, and to the Endo Forum at obgyn.net,
from Fertile Thoughts after three years in fertility treatment. I would
like to add the benefit of your experience and research to my upcoming
decision to have what I hope will be my "final surgery" -- a full
Laparoscopic Vaginally Assisted Hysterectomy (bilateral oopherectomy).
I'm 41 -- and basically healthy expect for the terrible chronic pelvic
pain between my belly button and pubic bone. I have mild endometriosis,
fibroid tumors and surgical adhesions (one on left ovary, another
between bladder and uterus originally caused by an adhesion barrier (!),
and who knows what new ones may have formed since my last lap). I've
been on low dose narcotics (vicodin) for 4 years now. Can't take NSAIDs
due to sensitive stomach, and because they were contraindicated for
conception.
While I've had cyclic pelvic pain all my adult life, the burning,
pulling day to day chronic pain appeared after my laparotomy in 1997 --
and adhesions were confirmed by two follow ups laps. (See history
below, if you are interested). I have located an experienced lap
specialist in my health plan, and he recommended a course of lupron
before proceeding to the surgery. He feels the endo is the cause of my
pain (thinking that fibroids and scar tissue don't themselves cause
pain, but simply press or pull on other tender, painful organs). Because
my endo has always been classed as "mild" and much of it has been
previously excised, I tend to think (and feel, literally in my gut) that
the pain is from the adhesions. I asked him about his adhesions
prevention measures, and he assured me that "good surgical technique"
was the most important factor (i.e. preventing bleeding, seepage,
careful laparoscopic technique, and patience).
Before I schedule the full hysterectomy (LAVH-BLO) and live with the
consequences the rest of my life, I agree with my Dr to at least try
Lupron. He says there's a 50/50 chance it will reduce or eliminate my
pain. He wants me to do it "cold turkey" for the first two weeks, then
begin HRT add back. This seems reasonable to me, in that at best it may
eliminate my pain by reducing estrogen stimulated inflammations, and at
worst it will reduce blood flow to the endo/fibroids/adhesions, and
perhaps make the surgery easier, and with less bleeding to cause more
adhesions.
Is there any else you can suggest I consider, ask my Dr. about,
"demand" that he do (o;, or anything else you can think of that would
help me lower my risk of forming more adhesions after my female organs
are gone, and any remaining visible endo has been removed. If I have
pain then ... it will more than likely be from "just the adhesions."
Here's my history (if you are interested):
I'm sure I've had endo all my life. I've had horrible cramps since
cycle one -- at age 12.
I had my first diagnostic lap in May 1989. Two external fibroids were
found. No endo was observed then, but I'm sure it was there. (I have
small patches, with deep implants, and no adhesions from the endo.) I
decided to watch and wait (and suffer) to "preserve my fertility."
I had a lapartomy/myomectomy in preparation for fertility treatment in
May 1997. 43 small fibroid tumors were removed, and many patches of
mild endometriosis (in other words, small lesions, no scar tissue, clear
tubes, and no endometriomas on ovaries).
Went back in for laparoscopy in Sept. 1997 when pain got worse after
healing from surgery. Found scar tissue on left ovary (adhered to
pelvic wall), and inflammation around the adhesion barrier he used to
cover the uteruine incisions (called "Preclude," teflon I believe --
it's a leave in place, and while it prevented scar tissue, it caused a
terrible inflammation.) He cauterized off the Preclude to remove it, and
I believe, left the raw surface open.
I began fertility treatments, with Clomid first, and later Repronex.
Took hCG shots for ovulation, and progesterone for luteal support. My
hormones basically all came from the pharmacy -- and made my endo and
fibroids worse. But it was "for the baby" -- which never came.
I had a 2nd follow up laparoscopy when the pain became unbearable again
in May 1999 -- this time the Dr. found the ovary, again adhered to
pelvic wall, and my uterus adhered to my bladder (where the Preclude had
been). He also excised all visible patches of endo, and did a
utereo-sacral transection to prevent it coming back. I was pain free
(with vicodin) for the first time in years! But only for four months.
I continued trying to conceive. About six months later the pain
returned ... and has gotten continually worse since then. It's a
burning, searing midline pain, and direct ache in left ovary. My
bladder feels full and aches all the time . When full it REALLY hurts.
If bladder or bowels are filled with gas, liquid or solid, I often get a
short duration excrutiating pain in mid-ab until it passes. No
irritable bowel symptoms to speak of ... I just have to watch my diet
to avoid food that I do not digest well, or take a long time to digest.
I can only hope the Lupron works ... but I am skeptical. I believe a
hysterectomy is inevitable. I hope good surgical technique will make it
my last surgery. If it works, I'll be grateful and relieved. But I
know, all to well, there's a chance I'll end up with more scar tissue
and pain.
So I'm looking to hear your experiences ... knowledge is power ...
thank you for sharing with me.
Hugs,
Robyn
--
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Robyn Myers
American Canyon, CA
Email: robynlmyers@earthlink.net
http://ice.ucdavis.edu/~robyn
KAIEWA -- A Hawaiian word meaning
"To take life philosophically as it comes,
sometimes in poverty, sometimes in wealth."
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