endo after a hysterectomy
Gail Gunberg
(including ovaries) and if so, what was the treatment? Thanks in
advance.
Gail
Suzanne
fact it was not all removed to begin with. I did have several months of
bliss after the hyst, but then the symptoms returned, one by one. I had
additional surgery with a specialist in which he excised endo from my
bowels, bladder, recto-vaginal, ligaments, etc. etc.
I have read the statistics are 40% or more of women who have complete
hyst for endo continue to have endo problems.
If you are considering hysterectomy, make sure that your doctor
addresses all the endo in your pelvis, not just the endo located on/in
the female organs. There is an article by one of the endo specialists
that sums this up - Removing Disease, Not Organs, Key to Long Term
Relief. I recommend reading this article located at
http://www.scmc.org/html/reprint7.html
suzanne
Gail
going to it, it stated document not found. Thanks for your response.
Gail
Aldee
> Hi Suzanne: Can you re-post the address of that article? When I tried
> going to it, it stated document not found. Thanks for your response.
> Gail
http://www.scmc.org/endo/html/reprint7.html
If that doesn't work, go to www.scmc.org and type "key to long term relief"
in the search box on the right... the first result is the one you want :-)
Donna
Aldee
news:3C2B3062...@nac.net...
> Has anyone had recurrent endometriosis after a complete hysterectomy
> (including ovaries) and if so, what was the treatment? Thanks in
> advance.
Hi Gail,
There are many women in this position. Most of them have been led to believe
that a total hyst was a cure for endo, so are convinced that they are either
crazy or unique when they feel familiar pains...
Treatment for post-hyst endo isn't that different to treatment pre-hyst,
although some of the drug treatments aren't used, and surgery is more
complicated. Progesterone treatment might be prescribed to oppose any
oestrogen (the ovaries are not the sole source of oestrogen - it is
manufactured by endo implants, the brain, skin, fat etc...). Surgical
treatments to remove endo, such as laser or excision are imo the best way to
go, but it is much harder to find endo after a hyst - scar tissue etc
complicate things.
There are some studies about aromatase inhibitors that seem to be fairly
helpful. These actually block all oestrogens in the body, but with inherant
risks. Try searching pub meds for articles relating to aromatase and
endometriosis (SE Bulun is an authority)
http://www4.ncbi.nlm.nih.gov/PubMed/
I hope that helps. The important bit is that you aren't the only one -
thousands of women have endo after hyst!
--
Donna
http://n.e.endo.tripod.com/support
alt.support endo FAQs:
http://a.s.e.faqs.tripod.com/altsupportendometriosis
Aldee
Useful article on aromatase, oestrogen and endometriosis. It is very hard
reading, but the summary is helpful ;-)
Gail
and become absolutely debilitated without estrogen. I had to d/c work when my
estrogen was too low (nausea, vomiting, pains in head, etc). I am also very
sensitive to medications and worried about that as well (progestin, etc).
Again, many thanks for your help and support.
Gail
Gail
nodule between the vagina and rectum which she thinks is recurring endo.She did a
biopsy and I am awaiting the results.
Gail
Suzanne
Incidentally, I did not know I had endo going into hyst, rather my dx was
ovarian cancer & fibroids and when I awoke found out I had stage iv endo,
adhesions and adenomyosis.
Good luck and take care, suzanne
Suzanne
also. I did forgo estrogen replacement after the hyst, but it did not make too
much of a difference endo painwise. My allergist discovered that I was allergic
to progesterone and I cannot tolerate it in any form.
After the remaining endo was excised 2/00 I have been on Vivelle dot .1 and very
comfortable. Some weight gain is my only complaint about hrt.
suzanne
Gail
how long afterwards? I had my hysterectomy in 1996 and now my gyn thinks this nodule
that I have is recurring endo. She is thinking of d/c my estrogen, which is
debilitating to me. I think I may seek a second opinion. I don't have pain from the
endo, just spotting. Will it spread even though I have no ovaries or uterus? Thank
you for your help.
Gail
Linda Scheimann
They do more than fertility consults, they also balance hormones. There
should be an option short of discontinuing estrogen replacement altogether,
although it might take a while to get the right dosage for you.
Linda
Debbie
information regarding recurrent endo after hysterectomy as I feel it
is quite pertinent and very useful.
I recently read a question from someone looking for information on
endometriois recurring after hysterectomy. I wanted to share this
information as it is very informative. If anyone has questions,
please don't hesitate to write me at Tigge...@aol.com
Unfortunately endo after a hyst is not an uncommon occurrence.
Finding help for it is another story altogether. I work for Dr. Cook
and Dr. Metzger, we see patients with this problem on a routine basis.
Here's an excerpt from Dr. Andrew Cook's website, www.pelvicpain.com,
that talks about this subject. If you'd like to talk further, please
don't hesitate to write back to me at Tigge...@aol.com.
All my best,
Debbie
Ask Dr. Cook Archives
"Ask Dr. Cook" is a series of questions and answers regarding
endometriosis. The current subject and answer can be found on Current
Ask Dr. Cook web page. The questions may represent a summary of
questions I have been asked by several different patients. I hope you
find this information helpful. If you have a question you would like
answered, please Submit A Question.
Recurrent Endometriosis After Hysterectomy Question:
I have been through several surgeries for endometriosis. The pain kept
coming back so my doctor told me I should have a complete hysterectomy
to get rid of the pain. I had the hysterectomy, but now a lot of the
same symptoms, including the pain, are back. My doctor says that since
everything has been removed it can't be endo and wants to send me to a
bowel doctor and a psychiatrist. I can I still have endometriosis
after having my uterus and both ovaries removed? Answer:
Yes, but this can be one of the most difficult situations encountered
with endometriosis. It can be difficult from the patient's standpoint,
because, not uncommonly, she is dealing with a medical profession,
family etc. who is really starting to question the legitimacy of her
pain. From a physician's standpoint, this can be the most difficult
type of surgery encountered by a gynecologist and thus the most likely
not to be correctly or completely treated resulting in "treatment
failure" with recurrence of symptoms. There is no question that
endometriosis can be present in a woman who has undergone a
hysterectomy and removal of both ovaries (even more likely if the
ovaries remain). Performing a hysterectomy does not in itself treat
endometriosis. It may reduce the chance of future recurrence of
endometriosis, reduce non-endometriosis related cramps, bleeding etc.
The key point is that endometriosis, for the most part, does not grow
on the uterus, it grows behind the uterus, on the bowel, in the
rectovaginal septum, in the pararectal spaces, under the ovaries,
around the ureters, on the bladder, etc. If a hysterectomy is part of
the agreed upon treatment plan between you and your physician that is
fine, but ONLY AFTER the endometriosis has been completely removed
from all of the areas which will not be taken out with the uterus. If
you have undergone a hysterectomy alone for the treatment of
endometriosis (the endometriosis was not treated just prior to the
hysterectomy) there is a good chance you will have persistent or
recurrent symptoms. The most common symptoms include constant pain,
pain with bowel movements, pain with intercourse (usually deep
penetration, like he is hitting something inside) and occasionally mid
back pain (secondary to ureteral involvement). You can also experience
the emotional changes we have seen with endometriosis including
moodiness, depression, etc. Now, assume for a minute that everyone
understands your situation (your doctor, significant other, employer
etc.) and your gynecologist surgeon is standing there ready to go
after the endometriosis. What are the pitfalls? In my experience, by
the time a patient has gotten to this point she has undergone so many
surgical procedures that is impossible to tell what is and what is not
endometriosis. The anatomy is distorted, fairly extensive scar tissue
and fibrosis (tough leathery tissue) is present, and often
endometriosis is buried out of sight in a patient who has had a
hysterectomy performed. The endometriosis gets buried when the surgeon
clamps, cuts and ties the tissue during the hysterectomy. The
endometriosis that is present get wadded up and buried in this
process. After this area heals following the surgery it can be
impossible to see endometriosis without dissecting the areas in which
endometriosis is known to grow. Another common area for residual
endometriosis is the vaginal cuff. Unless all of the endometriosis is
removed from the rectovaginal septum prior to the hysterectomy, it can
be easily sewn into the vaginal cuff. We have seen and treated more
than 200 women with residual endometriosis after undergoing a
hysterectomy. If you are experiencing this situation, you are not
alone. In my experience there are several key factors in successfully
treating this type of case. First, this is probably the most
technically challenging surgery a gynecologist will face. It is
important to seek out a surgeon who is technically good and has
experience in dealing with this situation. Second, since it can be
impossible to determine what is and what is not endometriosis, all
abnormal tissue must be removed and the areas in the pelvis where
endometriosis is know to grow must be dissected out. It is not
uncommon for an area to look normal on the surface, but to have deep
endometriosis when opened up. In my experience, all areas need to be
dissected down to normal tissue (endometriosis until proven normal)
which requires a laparotomy (bikini incision) and an operating
microscopic with an integrated CO2laser. Depending on the specific
situation a small portion of the vaginal cuff may need to be resected.
In summary, you can have endometriosis and the associated symptoms and
pain even if you have had a hysterectomy. Treatment of this condition
is technically challenging and requires the ability, expertise, and
equipment to dissect and laser all of the pelvic areas deep down to
normal tissue. In my opinion, a surgeon can not get all of the
endometriosis and scar tissue by just spot treating or selectively
excising lesions. In my experience, once all of the pelvic area is
explored and all the abnormal tissue is laser out, the patient feels
better.
Suzanne Livingston
not lucky as you having 5 years of endo free, within 4 months I was in
pain again with bowel and bladder symptoms too. I just wanted it all
out of my body and to be able to go on hrt and proceed with surgical
menopause in peace.
Some women having hyst for endo do forgo hrt for a period of time and
in some cases causes the remaining endo into remission. But for many
of these women when they do begin hrt causes the endo to reactivate.
The resulting adhesions caused by the endo can spread and often
without a uterus head for the bladder, though your endo appears to be
lower in your pelvis so this may not be a factor. Endo can be a very
invasive disease and the rectal nodule you speak of could further
infiltrate your rectum or vagina over time.
I highly recommend getting a second or third opinion. Find a skilled
doctor who is experienced in the removal of endo in the recto-vaginal
area and one who has your long-term health concerns as #1 priority.
Take care and feel free to e-mail me anytime. suzanne
Gail <pa...@nac.net> wrote in message news:<3C2D1AA0...@nac.net>...
Gail
Gail