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The Endometriosis Connection
Condition is More Common in Women with Autoimmune Disease

from Mary Shomon

While almost all women have experienced pain with their menstrual cycle, only half have ever discussed it with their doctors, according to a March 2002 national online survey conducted by the National Women's Health Resource Center (NWHRC). The reason: most women don't believe or don't know that doctors can do something about the pain.

The survey assessed the current experiences and attitudes of the impact period pain has on the lives of more than 1,000 women over the age of 18. Period pain can be a sign of a more serious condition-such as endometriosis-one of the most common gynecological conditions that is estimated to affect six million women in the United States.

Other survey findings indicate that more than three out of four women (76 percent) who experience menstrual pain say that it has affected their ability to participate in normal activities in work or personal life. Approximately 45 percent have missed out on social activities with friends; 39 percent have missed days of work or school.

National Survey Indicates That Many Women Are Living With Unnecessary Pain

Among Women Experiencing Period Pain...

  • 48% experienced loss of sexual desire/function
  • 45% missed social activities
  • 39% missed work or school
  • 37% impacted negatively on work or school performance
  • 25% missed family obligations
  • 20% had increased medical visits/expenses
Source: National Women's Health Resource Center online national survey / March 2002

In an effort to increase awareness about endometriosis, actress and model Karen Duffy -- a sufferer of the autoimmune condition sarcoidosis -- has collaborated with the NWHRC to share her personal experiences with the condition and encourage women to take charge of their period pain.

"I did what too many women do -wrote off the pain as just part of being a women-until I took charge of my pain and talked to my doctor," said Duffy. "It turned out my period wasn't the problem -endometriosis was."

Based on survey findings, the NWHRC developed a patient education tool, "Making the Cramp Connection," to help educate women about cramps, chronic pelvic pain and endometriosis and to encourage women to monitor and track their period pain and symptoms. The tool also provides tips on ways to make it easier to talk about period pain with health care professionals. "Making the Cramp Connection" is available free of charge by calling 1-866-FOR-ENDO.

In addition, the NWHRC has also launched national television and radio public service announcements featuring Karen Duffy. The public service announcements, which began airing this year, strongly encourage women to re-examine period pain and discuss symptoms with health care professionals, with an eye toward identified undiagnosed cases of endometriosis.

About Endometriosis

Endometriosis is a common yet poorly understood disease. It can strike women of any socioeconomic class, age, or race. It is estimated that between 10 and 20 percent of American women of childbearing age have endometriosis. While some women with endometriosis may have severe pelvic pain, others who have the condition have no symptoms. Nothing about endometriosis is simple, and there are no absolute cures. The disease can affect a woman's whole existence-her ability to work, her ability to reproduce, and her relationships with her mate, her child, and every one around her.

The National Institute of Child Health and Human Development (NICHD), part of the Federal Government's National Institutes of Health (NIH), conducts and supports research on the various processes that determine the health of children adults, families, and populations. Developing an optimal treatment for endometriosis is one of its primary goals.

What Is Endometriosis?

The name endometriosis comes from the word "endometrium," the tissue that lines the inside of the uterus. If a woman is not pregnant this tissue builds up and is shed each month. It is discharged as menstrual flow at the end of each cycle. In endometriosis, tissue that looks and acts like endometrial tissue is found outside the uterus, usually inside the abdominal cavity.

Endometrial tissue residing outside the uterus responds to the menstrual cycle in a way that is similar to the way endometrium usually responds in the uterus. At the end of every cycle, when hormones cause the uterus to shed its endometrial lining, endometrial tissue growing outside the uterus will break apart and bleed. However, unlike menstrual fluid from the uterus, which is discharged from the body during menstruation, blood from the misplaced tissue has no place to go. Tissues surrounding the area of endometriosis may become inflamed or swollen. The inflammation may produce scar tissue around the area of endometriosis. These endometrial tissue sites may develop into what are called "lesions," "implants," "nodules," or "growths."

Endometriosis is most often found in the ovaries, on the fallopian tubes, and the ligaments supporting the uterus, in the internal area between the vagina and rectum, on the outer surface of the uterus, and on the lining of the pelvic cavity. Infrequently, endometrial growths are found on the intestines or in the rectum, on the bladder, vagina, cervix, and vulva (external genitals), or in abdominal surgery scars. Very rarely, endometrial growths have been found outside the abdomen, in the thigh, arm, or lung.

Physicians may use stages to describe the severity of endometriosis. Endometrial implants that are small and not widespread are considered minimal or mild endometriosis. Moderate endometriosis means that larger implants or more extensive scar tissue is present. Severe endometriosis is used to describe large implants and extensive scar tissue.

What Are The Symptoms?

Most commonly, the symptoms of endometriosis start years after menstrual periods begin. Over the years, the symptoms tend to gradually increase as the endometriosis areas increase in size. After menopause, the abnormal implants shrink away and the symptoms subside.

The most common symptom is pain, especially excessive menstrual cramps (dysmenorrhea) which may be felt in the abdomen or lower back or pain during or after sexual activity (dyspareunia). Infertility occurs in about 30 to 40 percent of women with endometriosis. Rarely, the irritation caused by endometrial implants may progress into infection or abscesses causing pain independent of the menstrual cycle. Endometrial patches may also be tender to touch or pressure, and intestinal pain may also result from endometrial patches on the walls of the colon or intestine.

The amount of pain is not always related to the severity of the disease-some women with severe endometriosis have no pain; while others with just a few small growths have incapacitating pain.

Endometrial cancer is very rarely associated with endometriosis, occurring in less than 1 percent of women who have the disease. When it does occur, it is usually found in more advanced patches of endometriosis in older women and the long-term outlook in these unusual cases is reasonably good.

Take the Endometriosis Association's Self-Test now.

How Is Endometriosis Related To Fertility Problems?

Severe endometriosis with extensive scarring and organ damage may affect fertility. It is considered one of the three major causes of female infertility. However, unsuspected or mild endometriosis is a common finding among infertile women and how this type of endometriosis affects fertility is still not clear. While the pregnancy rates for patients with endometriosis remain lower than those of the general population, most patients with endometriosis do not experience fertility problems.

What Is The Cause Of Endometriosis?

The cause of endometriosis is still unknown. 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 a genetic process or that certain families may have predisposing factors to endometriosis. In the latter view, endometriosis is seen as the tissue development process gone awry.

Endometriosis is increasingly being labeled as an autoimmune condition however, and women with endometriosis are more likely than women without the condition to suffer from various autoimmune diseases. The opposite it also true, as women with one autoimmune condition have a higher risk of also having endometriosis than a woman who does not have autoimmune disease.

Women with endometriosis are also more likely to have:

  • abnormally low thyroid function (hypothyroidism)
  • chronic fatigue syndrome
  • fibromyalgia
  • lupus
  • multiple sclerosis
  • asthma
  • allergies
In one survey, as many as 12% of the women with endometriosis had lupus or MS (vs. 2% in the general population) and 42% of the women with endometriosis had underactive thyroid glands, versus approximately 5% in the general population.

Whatever the cause of endometriosis, its progression is clearly influenced by various stimulating factors such as hormones or growth factors. In this regard, NICHD investigators are study- ing the role of the immune system in activating cells that may secrete factors which, in turn, stimulate endometriosis.

In addition to these new hypotheses, investigators are continuing to look into previous theories that endometriosis is a disease influenced by delayed childbearing. Since the hormones made by the placenta during pregnancy prevent ovulation, the progress of endometriosis is slowed or stopped during pregnancy and the total number of lifetime cycles is reduced for a woman who had multiple pregnancies.

How Is Endometriosis Diagnosed?

Diagnosis of endometriosis begins with a gynecologist evaluating the patient's medical history. A complete physical exam, including a pelvic examination, is also necessary. However, diagnosis of endometriosis is only complete when proven by a laparoscopy, a minor surgical procedure in which a laparoscope (a tube with a light in it) is inserted into a small incision in the abdomen. The laparoscope is moved around the abdomen, which has been distended with carbon dioxide gas to make the organs easier to see. The surgeon can then check the condition of the abdominal organs and see the endometrial implants.

The laparoscopy will show the locations, extent, and size of the growths and will help the patient and her doctor make better-informed decisions about treatment.

What Is The Treatment?

While the treatment for endometriosis has varied over the years, doctors now agree that if the symptoms are mild, no further treatment other than medication for pain may be needed. For those patients with mild or minimal endometriosis who wish to become pregnant, doctors are advising that, depending on the age of the patient and the amount of pain associated with the disease, the best course of action is to have a trial period of unprotected intercourse for 6 months to 1 year. If pregnancy does not occur within that time, then further treatment may be needed.

For patients not seeking a pregnancy where treatment specific for the management of endometriosis is required and a definitive diagnosis of endometriosis by laparoscopy has been made, a physician may suggest hormone suppression treatment. Since this therapy shuts off ovulation, women being treated for endometriosis will not get pregnant during such therapy, although some may elect to become pregnant shortly after therapy is stopped.

Hormone treatment is most effective when the implants are small. The doctor may prescribe a weak synthetic male hormone called Danazol, a synthetic progestin alone, or a combination of estrogen and progestin such as oral contraceptives.

Danazol has become a more common treatment choice than either progestin or the birth control pill. Disease symptoms are improved for 80 to 90 percent of the patients taking Danazol, and the size and the extent of implants are also reduced. While side effects with Danazol treatment are not uncommon (e.g., acne, hot flashes, or fluid retention), most of them are relatively mild and stop when treatment is stopped. Overall, pregnancy rates following this therapy depend on the severity of the disease. However, some recent studies have shown that with mild to minimal endometriosis, Danazol alone does not improve pregnancy rates.

It is important to remember that Danazol treatment is unsafe if there is any chance that a woman is pregnant. A fetus accidentally exposed to this drug may develop abnormally. For this same reason, although pregnancy is not likely while a woman is taking this drug, careful use of a barrier birth control method such as a diaphragm or condom is essential during this treatment.

Another type of hormone treatment is a synthetic pituitary hormone blocker called gonadotropin-releasing hormone agonist, or GnRH agonist. This treatment stops ovarian hormone production by blocking pituitary gland hormones that normally stimulate ovarian cycles.

These hormones are currently being tested using different methods of administration. One such treatment involves a drug that is administered as a nasal spray twice daily for 6 months and works by suppressing production of estrogen, which controls the growth of the endometrial tissue. Other treatments being developed in this category include daily or monthly hormone injections. One concern is the loss of bone mineral which occurs with this type of hormone therapy. This may limit the duration and frequency of this type of treatment.

While pregnancy rates for women with fertility problems resulting from endometriosis are fairly good with no therapy and with only a trial waiting period, there may be women who need more aggressive treatment. Those women who are older and who feel the need to become pregnant more quickly or those women who have severe physical changes due to the disease, may consider surgical treatment. Also, women who are not interested in pregnancy, but who have severe, debilitating pain, may also consider surgery.

Conservative surgery attempts to remove the diseased tissue without risking damage to healthy surrounding tissue. This surgery is called laparotomy and is performed in a hospital under anesthesia. Pregnancy rates are highest during the first year after surgery, as recurrences of endometriosis are fairly common. The specifics of the surgery should be discussed with a doctor.

Some patients may need more radical surgery to correct the damage caused by untreated endometriosis. Hysterectomy and removal of the ovaries may be the only treatment possible if the ovaries are badly damaged. In some cases, hysterectomy alone without the removal of the ovaries may be reasonable.

New surgical treatments are being developed that further utilize the laparoscope instead of full abdominal surgery. During routine laparoscopy, the surgeon can cauterize small areas of endometriosis. Other evolving techniques include using a laser during laparoscopy to vaporize abnormal tissue. This involves a shorter recovery time. Laparoscopy treatment is possible, however, only if the surgeon can see pelvic structures clearly through the laparoscope. These newer techniques should be performed by surgeons specializing in such delicate procedures. Although these techniques are promising, more study is needed to determine if they yield results comparable to conventional surgical management.

Where To Look For Answers...

Because endometriosis affects each woman differently, it is essential that the patient maintains a good, clear, honest communication with her doctor. For the single truth about endometriosis is that there are no clear-cut, universal answers.

If pregnancy is an issue, then age may affect the treatment plan. If it is not an issue, then treatment decisions will depend primarily on the severity of symptoms.

A number of organizations provide information about the diagnosis and treatment of endometriosis and offer support to women affected by this disease and their families.

Endometriosis Association
8585 North 76th Place
Milwaukee, Wisconsin 53223
(414) 355-2200

The American College of Obstetricians and Gynecologists
409 12th Street, SW
Washington, DC 20024-2188
(202) 638-5577

American Society for Reproductive Medicine (ASRM)
1209 Montgomery Highway
Birmingham, Alabama 35216-2809
(205) 978-5000

Resources: Endometriosis is covered in the free email newsletter, The Autoimmune Report. Subscribe now (or see the Newsletters Signup page for more information.

book2.jpg - 175048 BytesIdentifying and healing autoimmune conditions is also the topic of the new book from Mary Shomon, Living Well With Autoimmune Disease, coming in October 2002. Find out more about the book now, and you can even pre-order an advance copy for delivery hot off the press.

For a free booklet containing information on cramps, chronic pelvic pain and endometriosis, call 1-866-FOR-ENDO (1-866-367-3636) or visit

For more information on endometriosis, see the Endometriosis Association or go to

Sources: NAPSI, National Institute of Child Health and Human Development, NIH Publication number 91-2413

Sticking Out Our Necks and this website are Copyright Mary Shomon, 1997-2003. All rights reserved. Mary Shomon, Editor/Webmaster
All information is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. You should seek prompt medical care for any specific health issues and consult your physician or health practitioner before starting a new treatment program. Please see our full disclaimer.