Understanding Endometriosis -- David Redwine, MD -- 04/17/03
By David Redwine
Some have no symptoms, some experience terrible pain; many can treat with home remedies, others need major surgery. Women with endometriosis know that no two cases are alike. We discussed this confusing chronic condition with renowned endometriosis expert David Redwine, MD.
The opinions expressed herein are the guest's alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Hello Dr. Redwine. Welcome to WebMD Live. We have a great number of questions from the members so let's get started.
Member: Dr. Redwine and WebMD, thank you so much for this chat! I hear this from so many women and had it happen to myself, that after laser surgery my pain was worse. Then I had excision surgery and my pain level was virtually gone. What is the difference between excision surgery and laser surgery for endometriosis?
Redwine: Laser surgery has never been studied with respect to how well it eradicates endometriosis. Many times it simply burns too shallowly. Excision allows the surgeon to remove all of disease in any location, regardless of whether it is superficial or deep. Because laser does not always eradicate endometriosis, it can be like trying to run on a sprained ankle. The endometriosis is still there, but it's been irritated by the heat of the laser and can hurt worse for that reason. Also, laser can leave carbon behind, and the carbon can result in a foreign body giant cell reaction, which can be a cause of pain.
Member: If a woman knows she has endometriosis and has blood in her stools, not explained by anything else, can she safely assume that endometriosis has invaded her bowels?
Redwine: No. Most women with endometriosis of the bowel do not have blood in the stool. Endometriosis of the bowel usually does not go through the wall of the bowel, and that's why most women do not have blood in the stool. On the other hand, if a woman has cyclic bleeding in her bowel movements with the menstrual flow each month, that type of bleeding is fairly suggestive of bowel disease.
Member: I was diagnosed two years ago with endometriosis by laparoscopy although I think I've had it for about five. I am currently pregnant, due in June. I have been having some endometriosis pain; not like I used to but I have been having extreme bowel problems that have even landed me in the hospital for five days -- I think it could be endometriosis-related. I thought pregnancy put endometriosis at bay, but I still have a lot of pain.
Redwine: Pregnancy does not eradicate endometriosis. Pregnancy may temporarily relieve the pain of endometriosis, but it brings its own set of discomforts. Because pregnancy does not eradicate the disease, when the pregnancy is over women may start hurting again.
Member: How can you find out if you are a candidate for excision? I was told that because my endometriosis is on the anterior abdominal wall, among other places, that I may not be a good candidate for excision. Are there criteria that help you tell if excision would work for you?
Redwine: Yes. The simplest criterion is that the patient has endometriosis. Excision can be used anywhere in the body, regardless of the location of the disease. And that makes excision the best choice for any patient of any age with any symptom of endometriosis.
Member: How many excision specialists are in the U.S.? How do I find one?
Redwine: Excision has become more popular over the last five years. Though it may be easier to find someone who will excise endometriosis, the problem is that even if a doctor is doing some excision, there still probably fewer than 20 or 25 surgeons in this country who are able to excise endometriosis from anywhere in the body.
Member: What do you say to a doctor you have been referred to, after explaining to him you've had two laser surgeries and Lupron in less than a year and he tells you he won't do excision surgery because he believes you just need birth control pills and pain management.
Redwine: Find another doctor quickly.
Member: What are symptoms to look for to find out if adhesions are obstructing the bowels?
Redwine: Bowel obstruction symptoms are the same regardless of whether the bowel is obstructed by adhesions, endometriosis, or some other type of tumor. The symptoms include:
There can be partial bowel obstruction where the symptoms are mild, and complete bowel obstruction where the symptoms are severe.
Member: Can excision be performed regardless of a person's body weight? Will a full incision have to be made if the person is too heavy?
Redwine: The largest patient that I've performed excision on weighed 313 pounds. A full incision is usually not necessary because of body weight, but may be necessary in a patient of any weight who has extremely severe disease.
Member: I just finished a six-month Lupron injection treatment and it worked wonderfully for me. It reduced all of my endometriosis pain and gave me minimal menopausal symptoms. I wonder if you could tell me what I might expect once the Lupron is totally gone from my body?
Redwine: My guess is that the pain will begin to return within two months and by six months the pain will be back at its former level.
Member: What are your thoughts on Lupron, and from your experience, are there far more side effects than positive results?
Redwine: I have seen hundreds of patients for endometriosis surgery who have been treated previously with Lupron. Since I don't see the Lupron success stories, my impression is that the side effects and expense of Lupron far outweigh any benefits.
The most important thing to remember about Lupron is that it does not eradicate endometriosis. All it does is treat symptoms temporarily. Because of this, Lupron and other forms of medical therapy are a cliche, because society is often asking physicians why don't they treat the cause of disease rather than the symptoms of the disease. The Lupron only treats the symptoms.
Doctors who primarily use Lupron to treat endometriosis are not experts in the treatment of the disease, and I say this because this is what TAP pharmaceuticals, the manufacturer of Lupron, says: Any doctor or nurse can prescribe Lupron and so prescribing Lupron removes the expert from the treatment of endometriosis.
Member: What causes endometriosis? Is it related to other diseases? Is it genetic?
Redwine: The cause of endometriosis is a subject of continued debate. My best guess is that it is a disease that the woman is born with because of a process called embryologically patterned metaplasia. At the moment of conception, a woman is dealt three cards.
And depending on these various cards, which can be quite different from patient to patient, endometriosis, or areas that will become endometriosis, are laid down in the woman's pelvis or elsewhere in the body during fetal formation. When estrogen production begins at puberty, the tracts of tissue that were laid down can become painful and can begin to change into endometriosis. Men can also develop endometriosis for somewhat the same reasons.
We know that endometriosis is not caused by reflux menstruation, because:
Member: If it's determined at conception, then why do there seem to be environmental factors?
Redwine: Environmental factors may aggravate the symptoms of the disease but they have not proven to be related to the cause of the disease. Endometriosis has been around a lot longer than dioxins and other environmental toxins. There probably also is a polygenic effect on the origin of endometriosis. This means that there may be several genes that may be important in its cause.
This is still being investigated, and it's important to remember that while finding some exotic cause of endometriosis may be exciting and may suggest some novel and perhaps very effective treatment in the future, women with endometriosis are dealing with their problems today, and the best treatment for endometriosis today is unquestionably excision.
Member: With severe endometriosis, I've been on Provera for three years now. I'm expecting a hysterectomy soon. My doctor says excision is a "bad" procedure, and because of my uterus position vaginal hysterectomy is out of the question. What can I expect after the hysterectomy?
Redwine: Usually you can expect that the endometriosis will remain in place with a 10%-20% chance of re-operation because of continuing symptoms.
Member: Do you feel that endometriosis causes other diseases, such as rheumatoid arthritis or chronic fatigue, or do you feel that endometriosis just causes similar symptoms?
Redwine: I don't think that endometriosis causes anything else. Endometriosis, however, is associated with chronic inflammation in the pelvis, and this can release inflammatory chemicals, which is normal for the inflammation process. These inflammatory chemicals, including chemokines, cytokines, interleukins, and tumor necrosis factor, can enter the blood stream and be carried around the body with symptoms ranging from fatigue to low-grade fever to muscle aches and pains, and this can either masquerade as another disease or aggravate the symptoms of a coexisting disease. Most women with endometriosis have normal immune symptoms and do not have autoimmune diseases.
Member: Do all women with endometriosis that you operate on have a retroverted uterus? What is your theory on this? Could it be adhesions dragging it down?
Redwine: A retroverted uterus is a normal anatomic variance of uterine position that is found in about 16% of patients, and it is not typically due to the uterus being dragged to the rear by endometriosis or anything else. Some women who have a particularly severe manifestation of endometriosis, called obliteration of the cul-de-sac, are found to have the rectum stuck to the back of the uterus by adhesions. While this may give the appearance that the uterus is tipped to the rear, this is not always the case, even in this severe form of the disease.
Member: What treatment do you recommend after excision has been performed?
Redwine: After excision there is no need for medical therapy. Medical therapy does not prevent endometriosis, it does not treat endometriosis, it has no purpose in "keeping endometriosis from coming back" and the cure rate by excision is between 40% and 50% by one surgery, and rises to over 70% after two surgeries without the need for medical therapy.
Of course if a woman needs birth control pills for contraception, she should take them. In women who have uterine cramping, which may not always respond to the removal of endometriosis, then birth control pills may help such a symptom that was not due to the endometriosis in the first place.
Member: I had a blighted ovum in 2001. The doctor that performed my D&C perforated my uterus. I bled for a year straight, with large clots and parts of the sac, etc., that he did not get out. I never had a problem before the D&C, and I have no family history of endometriosis . Is it possible that I got the endometriosis from the perforation?
Redwine: There is a theoretical possibility, but it seems extremely unlikely. We know that endometriosis has hormone receptors for estrogen and progesterone, and I've operated on many patients who have said that their symptoms seem to start immediately after a pregnancy, so theoretically it's possible that the symptoms of endometriosis may have appeared due to pregnancy, even including a miscarriage.
Member: What are the symptoms of endometriosis on the bladder? Can this mimic other conditions?
Redwine: I've seen over 700 patients with endometriosis on the area of the bladder. Most of these patients have no symptoms at all, because their disease is only on the outer covering of the bladder. If the muscle of the bladder is invaded by endometriosis, some patients may have bladder pain as the bladder fills or empties, and they can have a sense of bladder spasm and urinary urgency. Rarely will endometriosis of the bladder cause blood in the urine. Interstitial cystitis is a disease seen more commonly in women, which also can be a cause of pain and bladder symptoms.
Member: I come from a small community, and the doctors here are only interested in pushing Lupron and birth control pills for endometriosis. It is hard to get them to sympathize and help your pain. Why are so many doctors reluctant to work with endometriosis patients?
Redwine: There are many reasons for that. One is that they don't have the experience or training to treat endometriosis surgically. Another is that a lot of medical meetings for continuing education are funded by drug companies that pay doctors to speak about their drugs. I know some of these doctors make over $100,000 a year speaking on behalf of drug companies.
Another problem is that doctors don't get paid very well for doing surgery. They get paid for delivering babies, which doesn't take much skill. The reason this is occurring is because the American College of Obstetrics and Gynecology decided that if they tried to fight for better payment for both obstetrical services and gynecological services, then they might not get improvement in either. And so they decided to fight for better reimbursement for delivering babies. So gynecology has become the stepchild of ob-gyn. Many doctors practice gynecology almost as a hobby, which they can do because it is subsidized by the money they make from their ob-gyn practice.
Member: What types of questions should I ask a doctor to see if he/she is skilled in excision surgery?
Member: I have a 13-year-old daughter that I am concerned may develop the same problems. What age is the earliest for diagnosis of this?
Redwine: The earliest age of diagnosis of endometriosis was in a girl 10 years old. She was diagnosed after her fifth menstrual flow. Many patients with endometriosis give a history of painful menstrual flows beginning at the onset of menstruation, though it's very common for patients with endometriosis to begin hurting around the age of 13 or whenever the menstrual flow starts.
It's important to realize that the pain of endometriosis is much more than just uterine cramping. So the family and friends and the school nurse should avoid telling the young woman in pain that this is just part of being a woman or that this is just cramps; and if a young woman is missing school regularly because of pain congregated near the menstrual flow, she should see someone about endometriosis.
Member: Is there a specific diet one with endometriosis should try to follow?
Redwine: There is no specific diet that is helpful for endometriosis pain, although there was one study several years ago showing that diets higher in gamma lineolic acids (fish) may help reduce symptoms for some. The only known cure for endometriosis is excision. It can't be cured with diet.
Member: What's the best way to control the pain at home for endometriosis until I have surgery?
Redwine: It's whatever works. It may be anything ranging from heat to cold to pain pills to wine, to massage, to wine, to physical therapy, to wine. There is no one thing; it's just whatever you find that works.
Member: How can we -- the women with endometriosis -- advocate for better understanding, medical treatment, and support for our disease?
Redwine: Well, you would have to have an audience that is receptive for such advocacy, and if you look on television, you will see that patients with endometriosis are not members of a certified identifiable media victim group. The identifiable media victim groups include the elderly, those with breast cancer, Alzheimer's, diabetes, heart disease, those with AIDS, and those with multiple sclerosis, for instance. The list goes on and on.
And even though most of those diseases are less common than endometriosis, they are more visible and more appropriate to talk about, apparently. These are the media victim groups that get billboard space and microphones before congressional panels. So it would be very difficult to break into this set of accepted media victim groups with a disease that cannot be seen, like endometriosis can't be seen.
Moderator: Dr. Redwine, we are almost out of time. Before we wrap up for today, do you have any final comments for us?
Redwine: I think that each woman with endometriosis needs to fight her own battle for herself, armed with the best information. The best information about endometriosis can be summed up in just a few sentences:
So actually the treatment of endometriosis is simple in concept. You have to remove disease from the body. Please visit www.endometriosistreatment.org for more information.
Moderator: Our thanks to David Redwine, MD.
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