Pelvic Pain Mapping and Treatment of Endometriosis and Chronic Pelvic Pain - Part I

Article Conference CoverageFrom ISGE - Montreal, Canada - April, 1999

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Roberta Speyer: "Hi, this is Roberta Speyer, publisher of I have the pleasure today to be bringing you Dr. James Edward Carter, M.D., Ph.D., Medical Director of the Women's Health Center of South Orange County in California. That's outside of San Diego?"

Dr. James Carter: "We're actually half way between San Diego and Los Angeles, accessible in your area."

Roberta Speyer: "You're the president-elect of the Society for Laparoendoscopic Surgeons, president-elect of the International Pelvic Pain Society, and U.S. representative to the governing board of the International Society of Gynecologic Endoscopy, as well."

Dr. James Carter: "Yes, that's correct. We're here in Montreal at our annual meeting of the ISGE."

Roberta Speyer: "Your looking forward to that aren't you?"

Dr. James Carter: "Excited about it."

Roberta Speyer: "What we have here, and I really feel lucky that we're going to be able to share this with viewers and the doctors in the Endometriosis Zone, is the work that Dr. Carter has done on chronic pelvic pain diagnosis and management. Tell them about the pelvic pain meeting next week that you're going to in Connecticut. That will deal with this particular topic, won't it?"

Dr. James Carter: "Yes, it will. We're meeting again next week. Now I'm here at the ISGE in Montreal, but next week in Connecticut the Chronic Pelvic Pain Society is meeting, and that society is going to be dealing with issues relating to chronic pelvic pain, and especially endometriosis, which is a big factor."

Roberta Speyer: "And Dr. C. Paul Perry is going to actually do another interview discussing your whole work here, with regard to chronic pelvic pain and its treatment across the broad spectrum?"

Dr. James Carter: "Yes."

Roberta Speyer: "What we'd like to talk about today is your work with pelvic pain as it relates to endometriosis and surgical and nonsurgical treatment."

Dr. James Carter: "That's correct. We're going to look at the big picture, but we're also going to spend a little time talking about how a patient with chronic pelvic pain interacts with her physician, what the best thing is for her to do, and what has done for both the physicians and the patients by providing them with a new way to communicate."

Roberta Speyer: "We do a lot of work in the Endo Pavilion. We have the endometriosis quilt, and it has over 2,300 women who have now built quilt squares. Part of the questionnaire that they fill out in order to do it tells us how long they went before they were diagnosed. Corroborating what we have collected with the statistics from the Endometriosis Association and Mary Lou Ballweg, it's usually about 7 to 10 years that most of these women go from the time they really start having symptoms that they are aware of to the time they really get a definitive diagnosis, which is usually done by laparoscopy. Have you some things you can share with us that physicians and women need to think about in that period of time? How to minimize it, and what other options they have?"

Dr. James Carter: "I like the term you just used. One of the important things that we need to do, both patients and physicians, is to telescope that time. Why does it take 7 to 9 years to diagnosis a person who has been suffering from endometriosis? Why did they have to go on so long? I think the key, Roberta, is communication. How is the information pulled together, how is it communicated, and how is it then listened to by the physician? Dr. Arnold Kresch did some outstanding work in this area. Dr. Kresch had his own practice up in Palo Alto, California, and was an associate of mine. I learned a great deal from his work."

Roberta Speyer: "He's very well published too."

Dr. James Carter: "He's a pioneer and an excellent thinker, and he came up with the idea of having people use forms as a way of providing information. What I did is organize that in a way which laid it out by organ system, or by type of the disease - musculoskeletal disease, myofascial disease, GI disease, urologic problems, gynecologic problems - so that the questions flowed in a way that a woman could communicate more quickly with her physician about her whole history, because we're talking about a long history. So these forms are now produced on, where you can actually fill them out. This set of questionnaires just asks for symptoms, asks you to grade the symptoms and comment on a scale of 0 to 10, and then the next set of forms go together, and that's the most important part."

Roberta Speyer: "What are these? I know that there's a picture of a woman, here."

Dr. James Carter: "Yes, and these are called 'pain maps.' Pain maps are very important because you need to communicate where your pain is, and drawing it is really the best way to do that. So you download this type of form, and you can then draw this out for your physician, pointing out each pain you identify. Let's say you have a pain in a particular area. You then go to this form and complete the whole thing. You tell your physician or your caregiver, and you identify these things: when did it start, what were you doing, how bad is it, what have you done to treat it, what medicines have you been on, what surgery have you had, and what have you been told the cause is? There are a couple of other forms for you to use to put all the information about your life and your pain together. If you have headaches, put them up here. Any pain that you experience, you want to be able to identify and summarize."

Roberta Speyer: "Is there a lot of reactions to them?"

Dr. James Carter: "Yes. Individuals have many different pain patterns and so you want to try to focus in on the ones, one by one, that you can solve for that person, and this information will be provided for you. What I have found is that if my patients put their information together in this form, they are then able to communicate to me much more effectively. I can then understand what it is that's going on with their bodies."

Roberta Speyer: "Do you ever have an experience where, perhaps, someone is presenting with two unrelated problems?"

Dr. James Carter: "Yes, that happens."

Roberta Speyer: "What do you do about that?"

Dr. James Carter: "To give you an example, an endometriosis patient once came to me, thanks to the work of, through the Internet from Guadalajara, Mexico. She came to my office in Mission Viejo, California. She had been treated for endometriosis, but she still had pain. As it turned out, by having her complete this type of form and then doing a very careful exam that focused on some problems related to muscles and tendons, we found that the other pain that she was experiencing was from long experience in ballet."

Roberta Speyer: "Really, she was a dancer?"

Dr. James Carter: "Yes, she tore a muscle right at the pubic bone, and she developed what we call 'attachment trigger points.' Thanks to the ability of the Internet to help us communicate, she was able to find me, to find someone who would look further than just this one problem to get a complete solution."

Roberta Speyer: "That's interesting. I think this is very exciting and I'm glad we were able to put up the forms that you'll be able to find available in connection with this interview, and with the one you're going to be doing with Dr. Perry next week. What I really think is exciting here is how we can program all of this so that a person can actually work through it online, and not just download the forms, fill them out, and bring them to their physicians. That's something we're going to put you to work on later, when you stop traveling so much."

Dr. James Carter: "I'm excited about that. Now one of the things that I've also found is that when people put this information together, the physician is much more likely to be able to make a correct and accurate diagnosis. And this brings us back to our original point that you asked about, and that is laparoscopy. Is laparoscopy necessary for a person to have a diagnosis of endometriosis? We now know it's not."

Roberta Speyer: "But doctor, that's the gold standard. That's what we hear everywhere we go - laparoscopy is the gold standard. You're here at this meeting, so how can you say that? What do you base that on?"

Dr. James Carter: "Laparoscopy, I would still say, is the gold standard if you want to be 100% sure that that is, in fact, the person's disease, or that endometriosis is there. Laparoscopy still may miss it though, because it may be hidden in a place the doctor can't see. So even though it's the gold standard when it's positive, it's not necessarily the gold standard when it's negative."

Roberta Speyer: "Patients could still have it?"

Dr. James Carter: "They could still have it and the physician, in fact, may be able to diagnose that disease better by an examination then by laparoscopy. Let me give you an example."

Roberta Speyer: "Please do."

Dr. James Carter: "Dr. Dan Martin published some work where nodularity found in the uterosacral ligament was endometriosis 83% of the time when an individual had a nodule that was tender and they did a laparoscopy. But to do that laparoscopy, they had to actually go into the uterosacral ligament and biopsy it, not just look at it. Laparoscopy, generally, is a diagnostic look, not necessarily involving biopsies or taking out uterosacral ligaments, and not necessarily going into the rectovaginal septum. In some of those areas, you can feel better. So a physician, with your data put together like this and doing a careful exam, may be able to actually arrive at your diagnosis. In fact, we've had 80% accuracy finding endometriosis without the laparoscopy."

Roberta Speyer: "Dr. Carter, what about side effects? You have these choices that you're outlining for the endometriosis patient concerning whether they decide to live with the problem, which is probably the reason they came to you. So it is a problem, and maybe that's not what they'd like to do. But then they have other choices, but those choices are going to have side effects. Could you share with us what they are, and how you explain them to your patients?"

Dr. James Carter: "Roberta, that's a good point. People go to doctors to find out answers to problems that they have. They have problems with suffering from endometriosis, or suffering from chronic pelvic pain, and they'd like a solution. So the status quo generally isn't really an acceptable option, but it's something that needs to be considered concerning the side effects - or the risks, we could call them - of medical therapy or surgical therapy. So let's deal with surgical therapy first. That's the easier one. If you go in for surgery, your doctor has to tell you there's a risk that's pretty severe. Anesthesia risk can lead to some serious complications. I have my patients sign a consent form that says they understand that death is a possible result. It's unfortunate to say, but surgery has risks."

Roberta Speyer: "But those are very few cases."

Dr. James Carter: "Very few cases. I have to tell people that if a surgery is necessary, they want to make a judgement between the risk of the surgery and the benefits that they're going to derive from that surgery. Coming out of that surgery with little or no pain is a remarkable and thankful event. But still, it always has to be considered, and some people would rather choose the status quo against surgery because they would rather choose the pain they have against the risk that they might not get better, because surgery is not a 100% guarantee. Not everybody gets better from it, and they might even be damaged from the surgery, so that's a reasonable choice."

Roberta Speyer: "Is living with the pain they have a choice because endometriosis, unlike some other things they might present with, is not necessarily going to kill them?"

Dr. James Carter: "It may not kill them physically, but it can certainly kill the spirit, and I believe that's where those choices come in."

Roberta Speyer: "Then it has to be considered."

Dr. James Carter: "If the spirit is just being drained, then you may have to risk your body, your self, to make that correction."

Roberta Speyer: "But if someone presents with, let's say, a cancer problem, then you tell them surgery is a choice that they really have to consider immediately."

Dr. James Carter: "This is still a very personal choice on the individual's part. Some people may reject surgery for cancer, and that's understandable if they choose this. If they make that choice, that's an individual's choice, assuming they're given the knowledge and the way to make that choice, and so you look at those risks. So let's look at the medical risk.

The primary medicine that's used is called GnRH agonists. That's a medicine that suppresses the estrogen levels. The estrogen levels go down, then the endometriosis is eradicated, mostly by our own immune system, we believe. That's the way the system works - at lower estrogen levels you can have your immune system, which should be functioning to get rid of the endometriosis, revved up and going to work and getting rid of that disease. It's a self-healing process, so the medicine helps the body heal itself. Now, what is the side effect of the medicine?

The primary side effect of the medicine is the same as its main effect - it lowers estrogen - and the side effects of low estrogen are hot flashes, bone loss, menopause-type symptoms. So what do we do about that? An individual might find those side effects to be unacceptable. In fact, I have found - and most of those of us who study this disease have found - that we do not have to keep the estrogen levels so low that the patient suffers all of those side effects. We use what Dr. Surrey out in California calls add back therapy. Dr. Surrey has found that if you give women .3 milligrams of Estradiol, or even progesterone substitutes, you can minimize the side effects, and yet still get the major effect of the medicine, which is the destruction of the endometriosis. So then what do we do?

We say you have these choices, and that you can choose surgery, medicine, or the status quo. But what's the chance of success with each of those choices? With the medicine, we now know that you have long-term success rates of about 50%, and that is out five years. With the surgery, even in the best of hands, at five years we're down to 70%, and maybe lower in most people's hands. There's not a big difference at five years out. We've looked at this and come up with a model and the idea is simple: do the safest thing first.

What I recommend to my patients is that they do the following... Try the medicine first. First we make the diagnosis, but we can make that with your history and a careful examination using concepts like the tender nodule of Dr. Martin. We can make that diagnosis as clinicians - we call it a clinical diagnosis. So try the medicine, and within three months you will know if the medicine is working.

What is the risk if you're given the add back? I have found very minimum side effects in my patients. They have very minimal complaints of the medicine, and I do not see the same problems that can emerge from sudden drops of your estrogen level to practically zero, which could be an intolerable situation for a person. At three months, if you're better, you continue with the medicine. If you're not better, then surgery is still an option, but the best option before surgery is to re-evaluate whether there is another problem. Maybe the medicine is working for your endometriosis, but you have a mild fascial problem like my friend from Mexico who was surgically treated for her endometriosis. It was gone, but her problem was from a trigger point tear on the pubic bone that resulted in what we call a mild fascial attachment trigger point. It was treated, and now she's better. So re-evaluate first, and then surgery becomes an appropriate option."

Roberta Speyer: "If the medical treatment with the GnRH agonists and the add back works, what does that tell you?"

Dr. James Carter: "If it works, it tells us that the patient had endometriosis, because that's all it works for."

Roberta Speyer: "That's all, none of these others?"

Dr. James Carter: "We have some evidence that GnRH agonists will work with what's called irritable bowel syndrome, but when we look into that evidence, those are people with endometriosis, which is probably irritating the bowel anyway. So even for patients with irritable bowels, when we find that GnRH agonists are successful, it's because it's treating the underlying cause. It's the silver bullet for endometriosis, and that's another way of making the diagnosis of endometriosis besides laparoscopy. We call it a 'therapeutic trial.' You give them the medicine, and if the disease gets better and the patient feels better, then the medicine was appropriate for the disease."

Roberta Speyer: "So you go through the steps, use the charts and the graphs, interact with the patient, and make a very controlled mechanism - which is what you're doing here for the endometriosis sufferer or other sufferers of chronic pelvic pain - in order to present the information to the physician, and this gives the physician a very well collected way of exploring those options. Do you believe that this then enables the physician to try these therapeutic options, besides just going immediately to surgery?"

Dr. James Carter: "I believe so, and in fact, Dr. Frank Ling from Tennessee just completed a study which he published in the Green Journal, or what we call the Journal of Obstetrics & Gynecology, looking at medical therapy based on the clinical judgment of the physician. He found that, in fact, what you said is true, that we can make those judgments. We can provide the medicine as a therapeutic trial, and it is an effective approach to the treatment of chronic pain from endometriosis.

Now, in addition, what does that do for the patient? I also have to tell my patients that if I do surgery, I'll do it on Friday, but they're probably not going to be able to go back to work on the following Monday. They're going to have to take time off from work, and that's a big cost for my patients, Roberta. My patients have to work, they have children to take care of, they have responsibilities, there are many things going on their lives, and taking time out for surgery is not in their plans. With medical therapy, they can come in once a month for an injection, and we have them under control, the treatment is done. If they get better, they don't lose that time from work. They can keep control of their lives. So I believe the medical therapy keeps control in the patient's realm, rather than the physician's, and they are still in control of their lives. If they have surgery, they're going to face the risks of surgery, and they're going to have to take time out from their schedules.

We also looked at it from the insurers' point of view. I've had insurers who ask, 'if you do the medical therapy, aren't you still going to have to do the surgery?' No, and we've already demonstrated that. In about 50% of the cases you won't need the surgery, and it ends up saving them money, too. So it's a win-win situation. The insurance companies, if they look at their own data, will find that laparoscopy is expensive. So not only is it expensive for them, it's expensive for the patient, and it has certain dangers associated with it. But do I do it? Yes, I love it. It's my life. I'm a surgeon, and I love doing laparoscopy. I love being in there, getting rid of the disease. Are we successful at it? Yes, and perhaps we're a little more successful with laparoscopy then we are with medicine, but in the end it's really more beneficial to the patient to try the medicine first. If someone asked me, 'if your sister had endometriosis and you were treating her, what would you suggest to her?' As I tell my patients, I would suggest she use the medicine first. Only if she fails on the medicine should she go through the surgery."

Roberta Speyer: "I really appreciate you taking the time to talk to us about this. I'm looking forward to Dr. Perry's in-depth discussion with you that will be more targeted toward the clinician, and I am thrilled and delighted that we had this opportunity. I hope you have a nice time this week at the conference here in Montreal."

Dr. James Carter: "Roberta, it's been wonderful, here in Montreal. The weather's great and we're going to have a very good time. Thank you again."

Roberta Speyer: "We're going to get this guy to help us put these forms online with a decision tree so you don't even have to write as much, you can just go click, click, click. What do you think...?"*Dr. James Carter: "I think it's a great idea."

Roberta Speyer: "...then just print it out."

Dr. James Carter: "With your abilities, we'll do it."

Roberta Speyer: "Thank you doctor."

*The forms referred to in this interview are available here

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