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Why Do I Need To Know About Endometriosis?

Endometriosis is a common disease that can affect any menstruating woman from the time of her first period to menopause. Sometimes, the disease can last after menopause.

What is endometriosis?

When a woman has endometriosis, the tissue that lines her uterus, called the endometrium, grows outside of the uterus. No one is sure why this happens. When this tissue grows outside of the uterus, it is mostly found in the pelvic cavity, usually in one or more of these places: on or under the ovaries, behind the uterus, on the tissues that hold the uterus in place, or on the bowels or bladder. In very rare cases, endometriosis areas can grow in the lungs or other parts of the body.

As the tissue grows, it can develop into growths, also called tumors or implants. These growths are usually benign (not cancerous) and are rarely associated with cancer. Growths can cause mild to severe pain, infertility , and heavy periods.

The endometriosis growths are affected by the monthly menstrual cycle. Each month, the lining of the uterus thickens to get ready for pregnancy. If a woman does not become pregnant, the lining of the uterus sheds and the woman bleeds. When a woman has endometriosis, the growths outside of the uterus also bleed during her period. Because there is no way for the blood to leave her body, inflammation and scar tissue can develop. Blockage or bleeding in the intestines and problems with bladder function may also occur.

What are the symptoms of endometriosis?

A common symptom of endometriosis is pain, mostly in the abdomen, lower back, and pelvic areas. The amount of pain a woman feels is not linked to how much endometriosis she has. Some women have no pain even though their disease affects large areas, or there is scarring. Some women, on the other hand, have severe pain even though they have only a few small areas of endometriosis.

General symptoms of endometriosis can include (but are not limited to):

Extremely painful (or disabling) menstrual cramps; pain may get worse over time

Chronic pelvic pain (includes lower back pain and pelvic pain)

Pain during or after sex

Intestinal pain

Painful bowel movements or painful urination during menstrual periods

Heavy menstrual periods

Premenstrual spotting or bleeding between periods

Infertility (not being able to get pregnant)

Also, women who have endometriosis may have gastrointestinal symptoms that are like those of a bowel disorder, as well as fatigue.

How would I know if I have endometriosis?

If you think you might have this disease, talk with your OB/GYN (obstetrician/gynecologist), since he or she is the only type of doctor trained to look for this condition. There are a number of tests a doctor can perform to try to find out if you have endometriosis. Sometimes, imaging tests are used to make a “picture” of the inside of the body, which allows a doctor to locate larger endometriosis areas. The two most common imaging tests are ultrasound, a machine that uses sound waves to make the picture, and MRI (magnetic resonance imaging), a machine that uses magnets and radio waves to make the picture.

The only way to know for sure if you have endometriosis is to have a laparoscopy. This is a surgery with general anesthesia in which a tube with a light is placed inside your abdomen. The surgeon can then check your organs and see any growths or tissue from endometriosis. This procedure will show the location, extent, and size of the growths and help you and your doctor make better treatment decisions. Before surgery, you will need to discuss your medical history with your doctor, and have a physical (pelvic) exam.

What causes endometriosis?

No one knows for sure what causes this disease. One theory is that during menstruation some of the menstrual tissue backs up through the fallopian tubes into the abdomen, where it implants and grows. Another theory suggests that endometriosis may be genetic, or runs in families.

Researchers are also looking at the role of the immune system and how it either stimulates or reacts to endometriosis. It may be that a woman’s immune system does not remove the menstrual fluid in the pelvic cavity properly, or the chemicals made by areas of endometriosis may irritate or promote growth of more areas. Results from a recent study showed that women who have the disease are more likely than other women to have immune system disorders in which the body attacks its own tissues. This study also found that women with endometriosis are more likely to have chronic fatigue syndrome and to suffer from fibromyalgia syndrome-a disease involving pain in the muscles, tendons, and ligaments. These women are also more likely to have asthma, allergies, and the skin condition eczema. Therefore, researchers feel that further study of the immune system in endometriosis may give important clues to finding the causes of and treatment for the disease.

Other researchers are looking into endometriosis as a disease of the endocrine system, the body’s system of glands, hormones, and other secretions, since estrogen appears to promote the growth of the disease. Other research is looking at whether environmental agents, such as exposure to man-made chemicals, cause the disease. More research is trying to understand what, if any, factors affect the course of the disease.

Another important area of research is the search for endometriosis markers. These markers are substances in the body made by or in response to the disease, and can be measured in the blood or urine. If markers are found by a blood or urine test, then a diagnosis for endometriosis could be made without surgery.

What is the treatment for endometriosis?

The medical world believes endometriosis is not curable. This is not true. We have data published as a poster at the American Society for Reproductive Medicine and an ongoing study with clear evidence supporting a cure with resection of endometriosis. For many reasons too numerous to discuss here, only a handful of physicians worldwide perform complete excision of endometriosis. Traditionally, the lesions are simply cauterized or lasered which clearly does not cure the disease. Therefore, all studies that have looked at surgical treatment show short lived relief and minimal results. This is the only disease that I know of where treatments, both surgical and medical, are promoted that don’t cure the disease. If you have a bowel or skin tumor, for example, you don’t take medicines or do an incomplete surgery, you remove them. The same should be true for endo. Sadly, this was standard of care from 1900-1975 or so when open surgery was used to evaluate and treat endo. Only with the advent of the “newer, minimally invasive surgery” called laparoscopy did the inferior treatment method emerge. One of the few examples of technological advances actually setting back medical care.

With that said, excision does treat the disease of endometriosis. Our belief is that anyone with endo should be treated at the first suspicion of the disease. The inflammation that is caused by endo likely slowly damages the ovaries removing eggs at a faster than normal rate – hence infertility and earlier menopause. So instead of birth control pills for the adolescent, surgery with complete excision by a very experienced operator is the best course of action. The trick is that the visual appearance of endo is very subtle in youngsters and wider areas should be resected from the typical distribution pattern. It is possible to miss some microscopic disease utilizing this method, often a lesion or two on the tube or uterine surface. Even then though, the disease is dramatically reduced to a negligible amount that likely would cause no symptoms. Proof that this early intervention will prevent fertility problems or lengthen normal hormone production will be difficult and would take a 40 year longitudinal study that would be very difficult to accomplish. Based on our observations this positive outcome would be very likely. There is support however both in the literature (studies) and in our experience that endometriosis excision improves the pregnancy rate immediately. This is most likely due to the removal of the intense inflammatory response in the pelvis that is consistently present throughout a woman’s life unless treated.

Lastly, to address pain. Another great confusion in the discussion of endometriosis is the idea that pain = endometriosis. The assumption has clouded the issue and especially the research into the disease for years. We see and know of multiple causes of pain that are potentially related but not endometriosis. Below are listed some other conditions that cause pelvic pain and if not addressed properly will result in persistent pain:

1. Adenomyosis (uterine muscle endometriosis)
2. Pelvic floor spasms
3. Inguinal pain (occult inguinal hernias)
4. Interstitial cystitis
5. Abdominal wall syndrome
6. musculoskeletal abnormalities

Many patients have multiple components to their pain. It is important to understand how endometriosis progresses in a woman over time with no treatment. This is what most would experience. Severe pain with periods as a teenager followed by a decrease in pain in the early to mid 20’s. Pain with periods will increase in the early to mid 30’s but now caused primarily by adenomyosis or uterine endo. Some younger patients with severe disease will have pain with intercourse and certainly adenomyosis (tender uterus) causes pain with intercourse. This is obviously an overview and other related symptoms do occur in individual patients. The “later hysterectomy” comes as a result of adenomyosis which we believe exists to some degree in all endo patients and can be worsened by delivery of pregnancies.

How does one know she has endometriosis?
Several years ago we performed a study that showed a 99% incidence of endometriosis at laparoscopy if the patient reported “bad pain with periods as a teen.” This was defined as missing school, “should have missed school,” or worse than peers. If you have had this problem or the mother of a teen with this problem, you can be assured that endo is present. Again, be careful in the “reassurance” given by the significant pain relief that birth control pills offers these young women. The difficulty lies in the fact that not all patients with endo have severe teenage pain.

Other strong indicators in older patients that may not have had teenage period pain include:
1. Infertility (may exist in >75% of women seeking care)
2. Shortened cycle intervals (less than 27 days)
3. Moderate to severe PMS (mood changes, bloating, headaches)
4. Mother’s age at menopause < 46
5. Family history of endo
6. Early onset of gray hair < 35 years (this is often familial also)

It is sad that such a pervasive disease in our population has been totally derailed by technology and now is so poorly understood. We certainly don’t have all the answers but after careful study and attention to these details, we have been extremely successful in treating both infertility and pain in these patients. Procedures such as inguinal hernia repair for lateral pain and pre-sacral neurectomy (cutting the uterine sensory nerve) have greatly improved the quality of life in patients with this disease. It is important if hysterectomy is planned, to make sure to excise all of the endometriosis including bowel disease, and to address inguinal pain at the same time. We see a fair number of patients who have hysterectomies but continue with their pain. Again, pain does not always equal endometriosis.

As a final note, due to the decline in ovarian function in endo patients, estrogen levels are low and most highly benefit from low level estrogen supplementation in their mid 30’s and certainly by late 30’s. With early hysterectomy, estrogen replacement is critical to prevent the potential for system wide aging in these women. We are happy to discuss these issues by consult in the office, phone, or Skype.