by David B.
Endozone Advisory Board Member
Most patients with endometriosis do not have intestinal (GI) involvement. Among
the difficult cases of endometriosis I see from around the world, only 27% have
GI involvement. Since over 1900 patients with endometriosis have undergone
surgery at St. Charles, that means I’ve operated on over 500 patients with GI
The symptoms of GI involvement depend on the severity and location of the
disease. The severity of disease depends on the depth of invasion into the bowel
When endometriosis invades the bowel wall deeply, it causes a lot of scarring
and retraction and can form a tumor which partially obstructs the bowel wall.
When disease is very superficial, it usually causes no symptoms at all. There is
a long continuum of disease severity from very superficial to very bulky and
invasive, and some patients can have both superficial disease in one area of the
bowel, and bulky invasive disease in another.
The location of GI endometriosis follows well-defined patterns. The lower
rectosigmoid colon is most commonly involved, followed by the last part of the
ileum (the small intestine), the cecum (the first part of the large bowel), and
the appendix (which hangs off of the cecum). Thirty percent of patients have
more than one GI area involved. Superficial disease in any of these areas
usually causes no symptoms, but bulky, deeply invasive disease can cause real
When the rectum is involved by endometriosis, it frequently scars forward to
the back of the uterus, causing what is known as obliteration of the cul de sac.
This indicates the presence of deeply invasive disease in the uterosacral
ligaments, the cul de sac, and usually the front wall of the rectum itself with
what is called a rectal nodule. The disease can occasionally invade the rear
wall of the vagina as well.
Interestingly, although you might think vaginal endometriosis would be
obvious on speculum exam in the office, it is usually missed because most
physicians don’t think to look just behind the cervix; they are more intent on
seeing the cervix so they can do a PAP smear. Frequently the doctor may be able
to feel nodularity behind the cervix on exam, and this area can be very painful.
A rectal nodule with obliteration of the cul de sac can cause painful bowel
movements all month long, rectal pain during intercourse or while sitting, and
rectal pain with passing gas. It can also cause constipation, although diarrhea
can be present during the menstrual flow. When the sigmoid colon is involved by
bulky disease, patients can have constipation alternating with diarrhea and
intestinal bloating and cramping. Bulky endometriosis invading the ileum can
result in right lower quadrant pain, bloating, and intestinal cramping. Disease
of the cecum and appendix usually causes no specific symptoms at all. Most
patients with GI endometriosis do not have rectal bleeding, although when rectal
bleeding and painful symptoms occur during the menstrual flow, this raises
suspicion for GI involvement.
GI x-rays and colonoscopy are rarely useful in diagnosing GI endometriosis
because the disease usually doesn’t penetrate all the way through the bowel,
but remains in the muscular wall of the bowel. Most patients will have negative
GI workups, and GI endometriosis requires surgery for its diagnosis. Laparoscopy
is adequate for diagnosing GI disease provided that the surgeon takes the effort
to look at the areas which can be involved and also knows what GI disease can
look like (it’s most commonly white because of scarring surrounding the
disease). Most gynecologists do not look at the intestines very closely, so many
laparoscopies are useless for ruling out GI disease.
Looking at GI endometriosis will not make it go away, and now the question
about treatment comes up. Fortunately, this is a simple topic. Medical therapy
has never been studied with respect to intestinal endometriosis. Medical therapy
does not eradicate endometriosis of any stage or location anyway and is not
FDA-approved for treating infertility associated with endometriosis. The only
indication for medical therapy in treating endometriosis of the pelvis or GI
tract is to attempt to achieve temporary pain relief if the patient must wait a
long time for surgery. Surgery is the only way to eradicate GI endometriosis.
Many patients who have had GI disease diagnosed have hysterectomy and removal of
the ovaries recommended to them, even though these organs may be uninvolved by
While it is true that depriving the patient of estrogen stimulation of
endometriosis by such surgery will often reduce or eliminate pain, it makes much
more sense in many patients to remove the disease first and see what that does
for pain. If the uterus is causing problems because of fibroid tumors or
adenomyosis, and if the patient has completed her childbearing career and simply
is tired of putting up with pain and repeated surgeries, then removal of the
pelvic organs may add to the relief of removing all endometriosis. However, it
is rarely necessary to consider removal of the uterus, tubes and ovaries to
treat pelvic or GI endometriosis since removing those organs doesn’t eradicate
the disease. While many surgeons like to use laser vaporization or
electrocoagulation to treat pelvic endometriosis, it is unsafe to burn at the
bowel (although some surgeons occasionally do this) because a hole could be
created which is not obvious and which can cause serious complications. Excision
of the endometriosis with suture or staple repair of the bowel wall is necessary
to safely and completely remove GI disease.
At St. Charles,
we have pioneered surgical treatment of GI endometriosis, and it is now possible
to treat most cases of GI involvement with the laparoscope. Most patients do not
require a segmental bowel resection where the diseased segment is removed and
the 2 ends of the bowel are put back together. Even if this is necessary,
laparotomy is not always required.
In a new twist for those who do require laparotomy, I have found that if the
laparoscope is used to treat all pelvic disease and then to isolate the segment
of bowel to be removed, that the incision can be kept quite small.
One patient recently had full thickness resection and repair of a rectal
nodule, but I also saw nodular disease of her sigmoid and ileum. By isolating
the sigmoid nodule laparoscopically, I was able to make a small 3 inch incision
and we were able to do segmental bowel resections on both the ileum and sigmoid
through this tiny incision. The patient was dreading seeing her incision, but
when I took the dressing off two days later, she looked at it and said
"That’s not so bad. I can still wear my bikini."
Colostomy is not necessary in any patient to treat GI endometriosis. We have
had only one serious complication in over 500 patients. A patient developed a
leak from her suture line a few days after surgery and required a temporary
colostomy for healing. This has since been reversed and she is having normal
bowel movements once again. Another patient developed a stricture requiring
dilation of the bowel.
To our knowledge, the endometriosis treatment team at St.
Charles has more experience than any center in the world in treating GI
involvement. I personally do most of the bowel surgery and enlist the aid of Dr.
Dean Sharpe or Dr. Marinus Koning when the occasional segmental bowel resection
is necessary. GI endometriosis doesn’t need to be frightening or mysterious.
Like pelvic endometriosis, it is actually straightforward when the disease is
understood. Doctors sometimes tend to make things sound more complicated than
they really are because they may not have much experience treating