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Endometriosis: The Diagnosis Your Doctor Could Miss
Family Digest magazine, Fall 1999
Reprinted with permission from Family Digest Baby

Endometriosis is a condition in which the cells that line the uterus, the endometrium, somehow get outside of the uterus and implant in the pelvis. The endometrium is the lining of the uterus which is shed at each menses. This displaced endometrium will continue to respond to the hormonal changes in your body resulting in pain, scarring, and infertility. There are several different theories as to how endometrium cells get outside of the uterus. Explanations range from the back flow of menstrual blood, genetic predisposition, auto immune problems or a combination of all three. Typically the endometrial implants involve the ovaries, tubes, pelvic sidewalls, or the space between the vagina and rectum.

Who gets endometriosis?
A previous misconception was that African American women rarely got this disease, it was thought to be more common among "goal oriented" women. It is now known that 3-10% of reproductive age women of all races and 25-35% of infertile women have this problem. Unfortunately there is no way to prevent this disease.

What are the symptoms?
Symptoms for endometriosis can range from nothing to severe pelvic pain. Typically women will have worsening painful periods, painful intercourse, and or infertility. Specifically endometriosis should be suspected if painful periods develop years after pain-free menses or while on birth control pills. Eventually those with endometriosis may develop pelvic pain not related to their menses. Worsening painful intercourse with deep penetration is also a symptom. Infertility is more common in those women with endometriosis.

How is endometriosis diagnosed?
Endometriosis is diagnosed definitively by a surgical exam. A doctor may suspect endometriosis based on symptoms and or a pelvic exam. During this exam the ovaries or the area behind the uterus is painful to the touch or nodularity is felt in the space between the uterus and the rectum. If mild disease is suspected the diagnosis may be presumed and treatment begun to avoid surgery initially. Laparoscopy (minimally invasive surgery) is the usual surgical approach to determine if endometriosis is present. This involves making a small incision at the belly button and inserting a scope with a camera to look for endometriosis lesions.
A pelvic sonogram or ultrasound can detect endometriosis cysts of the ovaries but cannot detect implants of endometriosis in the pelvis. Unfortunately endometriosis can look similar to other kinds of ovarian cysts on sonogram . Thus a surgical evaluation is required if the cyst persists throughout 2 menstrual cycles. Endometriosis does not always involve an ovarian cyst.

How does endometriosis effect fertility?
Involvement of the ovary or tubes can cause scar tissue that blocks the tubes or interferes with their ability to pickup the egg. 40% of infertile women have endometriosis noted on Laparoscopy whereas only 5% of fertile women have this finding. However the long term fertility rates of women with minimal or mild endometriosis are high even in those not treated. Those patients with moderate to severe disease can expect a pregnancy success rate of 60 % to 35% respectively, after surgical treatment.

How is endometriosis treated?
Treatment for endometriosis depends on the severity of disease, the symptoms and the fertility desires. Keep in mind that some cases of endometriosis are detected as an incidental finding. For example, it may be found at the time of a tubal ligation in a patient with no symptoms. In those scenarios it is not clear that treatment will definitely help the patient. But given that the disease can progress, many doctors will treat if it is seen.
Medical or Hormonal treatment of endometriosis involves suppression of ovulation and or temporary shrinkage of the endometrial tissue. This can be accomplished by either birth control pills or medications which make the body think it is in menopause (Gnrh Agonist). The Gnrh agonist can only be used for 6 months consecutively due to the possibility of osteoporosis after more prolonged use. Progesterone has also been used to treat endometriosis. Daily use is thought to cause shrinkage of endometrial implants. These medications simply suppress the symptoms rather than cure. Though it is thought that these medications will essentially halt the process. The side effects of these medications range from water retention, irregular bleeding, and fluid retention to hot flashes, vaginal dryness and sleep disturbance (gnrh agonist). The choice of which medical treatment depends on the medical history, severity of symptoms, contraceptive needs, and patient tolerance.

Surgical treatment of endometriosis involves the restoration of normal anatomical relationships, and excising or burning as much of the endometriosis as possible. The recurrence rates are usually below 20%, but when it does come back second surgeries to aid in fertility have a limited chance for success.

How do I know if I have endometriosis?
This can be a difficult disease to detect especially as pelvic pain becomes an expected part of ones life. Gradually worsening menses to the point of debilitating pain is abnormal. Debilitating pain can be defined as such when it interferes with an individuals ability to perform her usual daily activities If a few doses of over the counter medications is not sufficient to bring the discomfort to a tolerable level and your pelvic exams are always normal then endometriosis is a definite possibility. If the discomfort continues despite birth control pills then endometriosis could be the cause. A normal pelvic exam and a normal pelvic ultrasound does not mean endometriosis has been ruled out. Any of the above symptoms combined with infertility (no conception after 1 year of unprotected sex) possibly indicate disease.
The path to diagnosis may not be quick but continued work with your doctor can eventually result in an improved quality of life.

Adapted from an article in Family Digest magazine. Copyright 1999. All Rights Reserved. Subscribe to Family Digest Baby magazine today!

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