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Endometriosis Q & A
See also "Understanding a Complex Disease"

What is it?

The clinical definition of endometriosis is the presence of tissue resembling - but not histologically identical to - the endometrium, including both glands and stroma, found outside the uterus in an ectopic location. What that means is, tissue similar to the lining of the uterus (the endometrium) is found thriving elsewhere in the body - usually in the female pelvis, but sometimes even in remote locations (even the brain, though this is extremely rare). Traditionally, both glands and stroma must be present for a diagnosis of endometriosis, but recent studies by Abrao et al suggest ectopic endometrium alone without stroma is enough to make a diagnosis. 

Where is it?

In the vast majority of cases, endometriosis is found in the female pelvis. Specific locations of endometriosis (sometimes called lesions) have been found on every pelvic organ, including the uterus, ovaries, tubes, ligaments, ureters, bowel, bladder, and other peritoneal surfaces. Endometriosis has also been found elsewhere in the body, including brain, diaphragm, lungs - and even remote locations like the back of the knee (again, this is highly uncommon).  The location of the lesions, the depth to which they penetrate the tissue they rest upon, and their overall size contribute to the unique nature of this disease. Although there are many differing opinions concerning aspects of endometriosis, one thing everyone agrees on is that every case of endometriosis is different from every other case. We may find similar cases, but none that are exactly alike.  There are 4 stages of endometriosis: minimal, mild, moderate, severe. However, stage was primarily developed to assess fertility and has no bearing on pain or symptoms. A woman in stage 1 can suffer in the extreme while a woman in stage 4 does not experience any pain (though higher stages often present with painful, fibrotic and deep disease).

What does it do? 

The magnitude of endometriosis pain depends in part on where it is and how much you have. A spot (focus) of endometriosis may stay small and relatively inactive for many years. However, even the tiniest lesion can cause incapacitating pain if it irritates a nearby nerve. Additionally, the disease creates an inflammatory response. This means increased blood supply and congestion; release of multiple immune response cells (like T cells, plasma cells; as well as arachidonic acid, cytokines, and TNF (tumor necrosis factor). All these factors and more are part of the local response to lesions. Larger areas of disease can become locally invasive as they respond to hormone stimulation. The tissue surrounding the lesion can begin to break down and bleed. The body's natural reaction is to try to cover this raw area with scar tissue (also called adhesions). But if active endometriosis becomes trapped beneath adhesions, pain and pressure can result. A large walled-off area (frequently an ovary) can lose its central blood supply. Then degeneration and destruction of the localized blood can create a cystic mass called an endometrioma. An endometrioma can be quite small, like a pea. They can also grow very large. We have seen endometriomas the size of softballs. Invasion of nearby structures including the bowel, bladder and ureters can occur. Advanced endometriosis can result in a pelvis frozen with adhesions. This means that organs designed to float freely within the pelvis are stuck together. Then, any movement of any one of those structures (such as ovarian movements during ovulation, movements during sexual intercourse, or moving material through the bowel) can result in enormous pain.

What does it feel like?

This question has no universal answer. Dr. Albee and Dr. Sinervo have cared for advanced-stage patients who had no pain, and cared for patients with minimal disease who were incapacitated by pain. We have seen every degree of misery between those points. Pain is the most common symptom.  

Other symptoms include:

severe menstrual cramps

pelvic pain apart from menses

backache

painful intercourse or pain associated with sexual activity

painful bowel movements

fatigue

bloating

constipation

menstrual diarrhea

pain with exercise

painful pelvic exams

painful and frequent urination

sciatic pain

Of course, not every woman has every symptom and some will have those not listed; these are among the most common ones.

How is it diagnosed? 

The only 100% sure way to diagnose endometriosis is to look at it under the microscope and see the glands and stroma. Practically speaking, that means that looking in the pelvis during surgery and removing suspect tissue for microscopic examination. No medical therapy or imaging tests will confirm a diagnosis of endometriosis.

But what if you haven't had surgery? Or what about a young teenager just starting her periods? How do you get a diagnosis then?

In the early stages of the disease before the pelvic exam begins to change very much, a careful and thorough history may be the most important clue to correct diagnosis. As the disease progresses it can create some very definite physical findings that can be noted by a physician who is looking for the disease and who has some experience in recognizing it. Ultrasound, CT, and MRI can give limited information about cysts, but not all women with endometriosis have cysts, and not all cysts are endometriosis. CA 125 levels in the blood may indicate endometriosis or one of several other pelvic problems but this test is very limited in its diagnostic capability.

Surgery remains the only certain way to diagnose endometriosis. The disease should be treated at the time of diagnosis. Here at the CEC, we are prepared to remove all disease from all areas at the time of surgical diagnosis.

Who gets it?

There are approximately 176 million women and girls living with endometriosis globally, according to the World Endometriosis Research Foundation.  Some researchers believe that genetic factors can predispose a woman to endometriosis. Several studies are ongoing to isolate the 'endometriosis gene'.  Generally accepted figures for incidence of endometriosis are 12-15%. To illustrate how high that rate is, consider that the average person is acquainted with about 250 people. Therefore, statistically speaking, the average person knows 30-38 women with endometriosis! Not all of those women know they have it, because some women haven't been diagnosed, and others have no symptoms.

What causes it?

The simple answer is, we don't know for sure. However, there are several theories:

Sampson's Theory

The oldest and most widely taught theory is that menstrual blood sometimes flows backwards into the pelvis. That is, instead of draining out of the body through the vagina, the theory holds that the menstrual fluid backs up the fallopian tubes and drips into the pelvis, where it attaches to any surface and establishes a blood supply. If Sampson's theory is correct, endometriosis is not possible until a girl's first period occurs - something that simply isn't true. There are significant flaws with Sampson's ideology, and the continued propagation of this theory has led to countless cases of poorly treated disease. Read Who is Sampson and what does he have to do with Endometriosis? to learn more.

Metaplasia Theory

In the embryo, cells with the potential to mature multiple ways develop in the wrong way in the wrong location. These misplaced cells are present at birth and later change.

Congenital Theory

In the embryo, cells that are intended to form the uterus get left out when the uterus closes before they arrive. The leftover cells are generally found along the coelomic ridge, and are present at birth.

Vascular Theory

This theory holds that the lining of the uterus (the endometrium) moves through the body via blood vessels. It reaches various tissues and then implants and survives.

What do Dr. Sinervo, Dr. Albee and the CEC team believe?

We believe that multiple etiologies exist, and emerging data on stem cells as related to endometriosis may unlock more mysteries as the scientific research progresses. Generally, we believe more than one theory may prove to be correct.

When we see endometriosis in an abdominal scar after a cesarean section, we must invoke a theory that includes transplantation. Also, certain research with primates shows that when the animal's cervix is blocked so menstrual fluid can't escape, endometriosis inevitably develops. These instances add a little weight to Sampson's theory – but it is estimated that more than 70% of all women experience some degree of retrograde menstruation, but only 12-15% of women have endometriosis. So how do we account for all the other cases?

Also, when we review a woman's videotapes of multiple previous surgeries, we rarely see disease in a new area. That is, for example, if bladder disease is present at surgery A, it may persist through subsequent operations (if it was not completely removed). On the other hand, if bladder disease is not present at surgery A, it does not suddenly appear at surgeries B, C, D, etc. If Sampson's theory of retrograde menstruation is correct, it is reasonable to expect to see new disease in new areas. But, in Dr. Albee and Dr. Sinervo’s experience, this does not happen.

It has been our experience with thousands of cases that, if all a woman's endometriosis is completely removed at surgery, she has better than a 85% chance that it will not recur. This evidence favors a metaplastic or congenital theory because it suggests endometriosis is a finite disease. That is, a woman has as much as she has (whether a little or a lot) and that if it is completely excised, it will not "grow back."  Other points that contradict Sampson's theory are that endometriosis has been found at autopsy of infants, who clearly have not ever menstruated. Also, because most of the menstrual flow involves the vagina and vulva, a logical extension of Sampson's theory would predict a high incidence of endometriosis in those locations. In fact, vaginal and vulvar endometriosis are rare. 

Evidence of endometriosis in spots far from the pelvis (such as the brain and lung) suggests either a metaplastic theory or implantation by vascular spread.  All in all, there is no denying that transplantation can be a source for endometriosis. The concern is the leap of faith taken when we allow that idea to foster the assumption that endometriosis can never be cured. A meticulous approach to surgery and totally excising every visibly abnormal area of peritoneum seems to result in long-term symptom relief in more than 85% of our patients.

How is it treated?
Although many variations exist, all treatments for endometriosis can be classified into the following four categories:

Observation

Pregnancy

Medical suppression

Surgery

Observation: A woman and her physician may choose to observe endometriosis without treatment. This may occur when a diagnosis of endometriosis is first considered. Before beginning aggressive treatment, a watchful "wait and see" period may be useful to see if symptoms subside on their own. Close attention to symptoms and frequent examinations by a physician with considerable experience with endometriosis will lead to appropriate treatment at the right time. Observation is not a good option when symptoms are significant or the pelvic exam shows progressive changes.

Pregnancy: Pregnancy figures in one of the myths surrounding endometriosis. Women have been told, "you can't get pregnant if you have endometriosis" as well as, "if you get pregnant you will cure endometriosis." Neither statement is true. First of all, endometriosis is a disease of fertile women. Most women with endometriosis who want to have children, have children. Secondly, pregnancy is not a cure for endometriosis.  Here is what happens: During pregnancy, ovulation stops. The endometriosis generally become less active, and may get smaller and less tender. This seems to be the result of the hormonal changes pregnancy brings. These include high levels of progesterone, the presence of HCG (human chorionic gonadatropin) and prolactin, among others. Menstruation stops, and many women with endometriosis feel much better while they are pregnant. In addition, an enormous psychological impact occurs. Pregnancy is something a normal, healthy woman's body does. A woman who has suffered with endometriosis and then conceives feels that, finally, she is like other women. She feels normal for perhaps the first time since puberty. It is a liberating, positive experience. However, the disease does not go away during pregnancy. After pregnancy and nursing (and sometimes before then), the symptoms return, sometimes with a vengeance. It is heartbreaking to see a new mother struggle to cope with a debilitating disease at a time that should be joyous (if exhausting).

Medical Suppression: This form of treatment can bring about temporary improvement in symptoms for some women or girls. BUT - it clearly does not make the disease go away! Drugs can be used to affect the amount of estrogen stimulation the endometriosis receives. Theoretically, the less stimulation the tissue receives, the less cell activity occurs in the lesions. This, in turn, slows the rate of progression and the amount of local injury. The price you pay is in side effects from the medicine, the cost of the drugs, and the fact that the endometriosis is still there.  Oral contraceptives offer a regulated, low-dose combination of estrogen and progesterone to prevent ovulation. Because ovulation is difficult for many women with endometriosis, this can be a big plus for OCs. Also, women who stay on the pill often have reduced menstrual flows and fewer cramps. Mild disease can remain quite stable for long periods of time. Side effects are relatively minimal for most women, and expense is not great. 

Progesterone is usually given in a long-acting depot form via injection (depo-provera). Progesterone can also prevent ovulation and reduce circulating estrogen levels. Side effects include irregular bleeding, bloating, weight gain, and more. Expense is reasonable. In Dr. Albee’s and the CEC’s opinion, depo-provera is not a good choice for women who have not completed their childbearing. A small percentage of women who take depo-provera never ovulate again.GNRH analogs (Synarel, Lupron, Zoladex and Danocrine) are drugs that stop virtually all ovarian activity (hormone production and ovulation). The results are very similar to menopause, with some differences in the FSH and LH levels. This class of drugs is very effective in reducing activity of the endometriosis, but they are extremely expensive. They also cause significant side effects, including hot flashes, palpitations, headache, sleep disturbances, vaginal dryness, depression, decreased libido, bone demineralization, weight gain, mood swings, and much more.  These drugs do not cure endometriosis, and we do not prescribe them, only in a few specific circumstances. Aromatase Inhibitors, anti-estrogens, and SERMS (selective estrogen receptor modulators) are other forms of suppressive therapy which use different means to reduce the estrogenic (hormonal) stimulation of endometriosis. None are commonly used for a variety of different reasons which include unproven effectiveness, significant side effects, and/or significant cost.

Surgery: The surgical approach to endometriosis can be split into four levels: diagnostic, very conservative, aggressive conservative, and radical.  Diagnostic surgery has diagnosis as its highest priority. That is, the whole point of the operation is to diagnose what's going on with the patient. No attempt is necessarily made to treat any disease that may be found. We see many patients who believe their prior surgery was a failure when in fact, the surgeon's desire was to diagnose without treatment. Therefore, the woman may be given a name for her problem (endometriosis) although when her surgery is over she has as much disease as she did beforehand.

Very conservative surgery is one in which a surgeon might treat very large, obvious, or easily treatable disease. For example, a leaking endometrioma might be drained, or an area of powder-burn lesion ablated. Other areas of disease may, by design, be left untreated. Laser ablation, cauterization, and fulguration treat lesions on the surface of the pelvic organs. These techniques are generally discontinued when the visible superficial portion of the endometriosis is no longer recognizable. Unfortunately, this means deeper disease can be left behind to cause more problems. Physicians who believe that endometriosis can never be controlled and will always come back often do this type of surgery.

Aggressive conservative surgery removes all disease while preserving all organs. The emphasis is on removing all areas of endometriosis and possible endometriosis, while maintaining fertility. Although many surgeons attempt to treat endometriosis using ablative technique, in the CEC’s opinion this is much less effective than excision.  Aggressive conservative surgery is performed here at the Center for Endometriosis Care. It is important to remove the disease from the organs, not the organs from the woman.

Radical surgery describes the removal of the reproductive organs (i.e. uterus, tubes, ovaries). Certainly there are some women who have benefited from this approach, but in our experience the majority of women can attain profound and long-lasting pain relief without resorting to such drastic measures. In addition, there are a host of reports of endometriosis persisting after hysterectomy. Removing a woman's uterus but leaving endometriosis behind often does not relieve her pain.

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