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Endometriosis pain: cause or causation?
Charles
Miller MD
and David Redwine MD David Redwine MD:
I’m David Redwine, Director of the
Endometriosis Institute of Eastern Interior Oregon. Charles Miller MD: I’m
Chuck Miller and I’m involved in private practice in Metropolitan Chicago and
do a lot of work in endometriosis as well. Lone Hummelshøj:
This morning we’re going to talk about pain and endometriosis: cause or
causation. Chuck Miller has just done a presentation of that at the Fifth World
Congress on Controversies in Obstetrics, Gynaecology and Infertility. Would you
like to give us a summary of your talk? Charles Miller MD: I’ll
start by saying that it’s a rather confusing issue. At the end of the day
there’s a paucity of information that really allows us to correlate pain and
endometriosis. Looking at the past, we understand that there are many women who
present to us with severe pain, and have little endometriosis. By the same
token, there are women who present to us with no pain at all, and have stage IV
endometriosis. It’s really difficult looking at the literature at the present
time to try to decipher why that is. David Redwine MD:
Another thing is that even if a woman has
biopsy or laparoscopically proven endometriosis, she could still have some other
cause of all the pain, like interstitial cystitis, adhesions, musculoskeletal
syndromes and other things like that. This will further muddle the issue beyond
just the confusion about endometriosis itself. Charles Miller MD: I
think that’s a really important topic, David, because I think that while we
learn in medical school that a woman who has severe pain, prior to menses and
with menses, must be thought of as having endometriosis. Over the years I’ve
learned, and have seen women presenting with issues such as irritable bowel,
interstitial cystitis even pelvic congestion, pelvic hypertension, however you
want to call it, who present in very similar fashions. It really behoves us to
talk with that patient about the symptoms that she is having in order to try to
push us in the right direction. David Redwine MD:
That’s true, and underneath all of that I
still would make the plea to have gynaecologists have endometriosis at the top
of the list because it is so common, and we’re still not doing an excellent
job on it as a profession. Keeping the other things in mind, particularly in patients
who failed to respond to good, aggressive surgical excision, when I operate on
somebody and I’m through with their surgery, and then they have recurrent or
persistent pain, that always tells me that there’s very likely something else
going on that surgery didn’t identify, and therefore could digress or is not
related to endometriosis necessarily. Or, maybe part of their pain is gone with
the endometriosis surgery, and part of the pain remains because it’s due to
something else, but that doesn’t mean that the endometriosis surgery failed,
it’s just means that other things are causing the pain. Charles Miller MD: I
think that that’s important. In my other lecture on endometriosis and the
adolescent, we look at a real analgorithm in terms of determining where we go
with those patients. I look at that population and if they’re not responding
first to non-steriodals, anti-inflammatories, and then onto birth control pills,
I feel that it is imperative that we look at those patients by laparoscopy, and
then to make our diagnosis of endometriosis. And I agree with you David; it’s
only after those patients come back to us and still have concerns of pelvic pain
that I think it is important to look at these other factors as well. David Redwine MD: Sometimes
the other factors might stick out like a sore thumb, although I think that’s
fairly rare. For that reason, endometriosis, in my practice, still is at the top
of the list, even though I might have these other factors of pain in the back of
my mind. But if they have a characteristic history, and characteristic findings
on exam, where tenderness, pain and nodules already are present, then that woman
almost 100% of the time has endometriosis. One thing, speaking of the
adolescent with endometriosis, is that in terms of examining the amount of
endometriosis that I find in re-operated patients, the age group that is most
difficult to cure; and when I’m saying cure, I mean that when I re-operate
they don’t have any endometriosis, the age group that is most difficult to
cure of their endometriosis is teenagers. I think that’s because they are
still forming their endometriosis by metaplasia, or whatever, until the early to
mid-twenties. By that time, most women have formed virtually all the
endometriosis they’ll ever have. They may still have local invasion. They may
still have accumulation of cystic fluid and endometrioma cysts, but they have
kind of laid down all the endometriosis they will ever have by their early to
mid-twenties, and that’s why it’s more difficult to cure teenagers. This is
what I found. Charles Miller MD: I
think you’re very right in that. It brings me back to two points; one point is
that it is a particularly hard group. When I look through literature, the one
thing that I have felt when we were able to correlate is dysmenorrhoea and
cul-de-sac, or adnexal, adhesions; and that most likely is secondary to the
issue of endometriosis and the inflammatory reaction that is set up. When it
comes to dyspareunia, there seems to be a very good correlation in terms of deep
implants on the uterosacrals, and then the cul-de-sac you’re talking about is
of course the nodularity that we see. That seems to go out the window in our
younger patients who may present with similar kinds of symptoms, and have only
minimal to mild disease. The second issue when we talk
about those patients, particularly younger patients, in particular those who are
interested in future fertility. In my mind it is important to discuss a
long-range plan with these patients as well, and to really, at times, use a
combination of therapies. Obviously we’ve dealt with and talked about the
surgical therapy but there is medical therapy as well. Medical therapy may not
be just directed toward the endometriosis itself, but supportive therapy in
terms of pain, and even go on to adjunctive therapy from there with behavioural
modification, etc. to try and be able to cope with this very, very difficult
disease entity. David Redwine MD:
The nature of my practice is that the
patient flies in to Bend to have surgery,
then flies out within five or six days, so I don’t have the luxury of mapping
out long-term treatment strategy. But in talking with patients by phone, who may
not being doing well later, I try to ferret out whether we are talking about
musculoskeletal syndrome, should they see a physical therapist, or are we
talking about interstitial cystitis, should they see a urologist? You are right.
Patients like to have a plan. Because without a plan patients feel like
they’re just treading water on their own with no help, and of course they’re
not doctors. We disguise ourselves as doctors, and hope that we make sense, but
we don’t always. A plan is important because it gives a patient hope. It
sounds corny, but sometimes hope is one of the best things you can give,
sometimes it’s the only thing you can give. Charles Miller MD: That
is absolutely true. When you say the luxury of being able to follow-up these
patients post-surgery, I think you have the luxury of being able to do surgery,
and then have them travel back to New York or Chicago or Dallas or wherever. One question I have for you
David. I know in the past you’ve not been a big fan of GnRH agonists in terms
of patients, certainly pre-operatively. If a young patient, or for that matter,
a patient who is having severe pain, and you’ve done one of your wonderful
dissections on them, how do you feel about, for long-term, using a short-course
of agonists in these patients? Or how would suggest managing these patients? David Redwine
MD:
Most
of the patients who come to see me have already been on GnRH agonists, and/or
Danazol, and/or birth control pills, and/or Depo Provera, or all combined. Most
of them are not interested in ever taking the medicines again, so it would be
difficult for me to try and convince them to take them, even if I believed in
their utility. The question of usually never comes up. When it does come up I
tell my patients, and this is an important point I think in terms of surgical
follow up, that if I put all of my patients on three months, six months, nine
months or indefinite regimens of GnRH agonists, then I would not be able to tell
results of surgery from the results of medical therapy. I think that’s a very
important issue because when you read a publication of mine you can be sure that
we’re talking about surgical results. We’re not talking about medical
therapy combined with surgery. I have no qualm about doctors treating patients
with any medicine for pain, if it seems to relieve the pain with reasonable
side-effects, and particularly if surgery has failed. But I don’t have a place
for it in my practice. Charles Miller MD: I
certainly have followed your recommended tenets in terms of deep excision, wide
excision, and that indeed this is the way that our patients do best.
Certainly if one looks at your data and looks at the data of Ray Garry we
know that patients do much better with very aggressive surgical excision of
endometriosis. The one aspect that I do think
we differ on, and I certainly understand your reasoning for them if you really
are the evaluator of those surgical procedures, but in everyday life the fact is
that I do, as part of my therapy, recommend agonists with patients from time to
time. Not in every patient. Certainly we want to see how that patient is doing.
I think it’s very important to look at what interest is in future fertility;
is it immediate, is it much in the future. The one thing that you and I know is
that agonist therapy is very difficult for many patients because of the
hypo-oestrogenic symptoms. I have seen that the compliance
rate has really soared if we utilise an add-back therapy. And not just a
progestin. I do give them a small amount of oestrogen as well, so my typical
regimen is to use a half mg of Estrace as well as 2.5 mg of medroxyprogesterone
acetate, Depo Provera, as well. I use that for a short period of time. Then I
watch those patients to see how they do, whether it be going on continuous birth
controls pills or using cyclic birth control pills, and follow them up. If
indeed the patient is having recurrence of pain, I think it is very important to
investigate those aspects of alternative reasons for the pain, such as
interstitial cystitis, pelvic congestion, irritable bowel, etc. if we not look
before. I think it is very important that we look otherwise, particularly in the
younger population, where endometriosis is continuing to move on. It may be
worthwhile looking back laparoscopically. David Redwine MD:
One thing that I notice from not treating
patients, and this could be viewed as a reason to treat them briefly after
surgery, is that after aggressive excision, even if the patient ultimately does
have complete pain relief, the first menstrual flow or two could be unusually
painful. Some other doctors that have noticed that have said, “Ok well, I
don’t really believe either in long-term medical therapy, but for a couple of
months to suppress whatever congestion, plus surgical injury resulting in pain
that is going on, it’s the humane thing to do for patients.”
There may be a bigger arena for that type of short-term therapy just to
get over the healing pain. Charles Miller MD: I
hate to say it there also may be, although we tend to run away from it, a
tremendous placebo effect, that we’re basically breaking that pain cycle in
these patients, and giving them the feeling that yes, this is working. You are
right, whether it be due to the inflammation, or congestion, etc. we do see
tremendous pain after these kinds of situations. David Redwine
MD:
With
the menstrual flow. Charles Miller MD: With
the menstrual flow, exactly. David Redwine MD:
They
seem to be pretty fine away from the flow, but they call in and say, “Well, I
knew that you said it was going to be painful but I didn’t know it was going
to be this painful.” We told them to expect the worst pain they ever had in
their lives. Charles Miller MD: Exactly,
right. One more aspect, just in brief. How do you feel about presacral
neurectomy? David Redwine MD:
I
have done presacral neurectomy since 1988. I do them frequently, in about one
out of every six patients. They have several observational and randomised
control trials supporting their use. I stopped doing LUNA procedures back in the
1980s because I figured out in my own patients that they weren’t working, so I
highly recommend presacral neurectomy to women, who can differentiate that they
have severe or debilitating uterine cramps with their menstrual flow. Of course,
that means maybe different things to different patients. But I don’t have a
uterus, I have to depend on their assessment; that yes, they can distinguish
uterine cramping with their menstrual flow in addition to endometriosis type of
pain. So I highly recommend it. Charles Miller MD: I
will recommend it, particularly when it is midline pain, dysmenorrhea, and
occasionally with dyspareunia. I do think that for midline pain we do quite well
with it. I am yet to be impressed with adenomyosis. I’m doing really well
without it. David Redwine MD:
I
agree, and of course, bringing up those points, if you use it for midline pain
and dysmenorrhea, how do you present those aspects to the patient? If you say,
“You have dysmenorrhea”, they say, “What is that?”, or “You have
midline pain”, they say, “what do you mean?”
I try to simplify it down to, “Do you perceive that your uterus, down
there low, in front on your pubic bone, is causing intense cramps?” The uterus
is notorious for radiating pain to the lower back, down the front of the legs,
and up to the belly button, so I sometimes question them in that wider manner
trying to identify, that the uterus is part of the problem, apart from
endometriosis, so a presacral neurectomy is indicated. Charles Miller MD: I
think that’s a very good point. Lone Hummelshøj:
Well, you certainly managed to cover quite a few topics over the last 15
minutes. Thank you very much Dr. Miller and Dr. Redwine. David Redwine MD:
You’re
welcome. Charles Miller MD: Thank you. See also Charles Miller's presentation on endometriosis
and pelvic pain and the EndometriosisZONE section
on endometriosis and pain
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