---

I wanted to make certain I had a specific page dedicated to telling you all about endometriosis, as well as some helpful hints to help you live with the disease. Below you will find endometriosis facts, definitions, questions to ask your doctor and tips on communicating with your doctor.

FACTS 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. As part of NICHD's mandate in the reproductive sciences, NICHD has established a Reproductive Medicine Network linking several institutions across the country. While this cooperative effort focuses on other important issues such as infertility and various male and female reproductive disorders, 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.

"Staging endometriosis is vitally important because all women with endometriosis are not the same." -- NICHD Researcher

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.

"While endometriosis is not a malignant disease, it does cause a lot of suffering and pain." -- NICHD Researcher

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.

"We do not have a clear understanding of the cause-effect relationship of endometriosis and infertility." -- NICHD Researcher

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 away.

Whatever the cause of endometriosis, its progression is influenced by various stimulating factors such as hormones or growth factors. In this regard, NICHD investigators are studying 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.

"Endometriosis is a long-standing disease that often develops slowly." -- NICHD Researcher

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 progesterone alone, or a combination of estrogen and progesterone such as oral contraceptives.

"We are finding good medical options without surgery. " --
NICHD Researcher

Danazol has become a more common treatment choice than either progesterone 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.

STAGES OF ENDOMETRIOSIS
Stages of endometriosis is determined by the sizes and amount of endometriosis found. Some women with advanced stages have had no pain, and some with minimal disease are incapacitated by pain or infertility.

Stage I - Minimal, (1cm - 5cm)
Stage II - Mild, (6cm - 15cm)
Stage III - Moderate, (16cm - 40cm)
Stage IV - Severe, (40+ cm)

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.

Because these decisions can be difficult and confusing, there are organizations that provide information and offer support and help to those who are affected by this disease.

---

YOU AND YOUR DOCTOR
You should approach your health provider with a sense of self and self-dignity. After all, you are a competent individual who is aware of her own body. You should be armed with knowledge of your particular concerns and feel comfortable to speak freely and easily with your provider.

To be your own advocate, you must overcome certain prevailing realities. As much as your physician would like to, she or he may not be current on all of the newest and most effective technologies and developments associated with your situation. Do your own research and be able to understand what your options are.

Utilize the physician as you would a friend, not a God. Patient and physician must create a mutually effective relationship. As much as doctors can lead us to information and work with us, they cannot work entirely for us. Empower yourself by being an active participant in your health care. Your doctor will appreciate and respect you more. Knowing your options comes only out of doing your homework before meeting with your doctor. Doing your own research is fundamental to receiving the best care. To further improve your knowledge, bring a paper and a pencil with you to write down the topics of discussion. You may also opt for a small recorder if you want to listen to what your doctor said in full detail later. Some women benefit from keeping all their appointments and research in one notebook. Keeping a diary also prompts questions you may want to pose to your doctor

Sample Questions Include:

a) What are the benefits of doing this?
b) What are the risks?
c) What are my other options?
d) What should I do first?
e) What are the probable outcomes of each situation?
f) What is the probable outcome if I decide not to have this treatment?

Let your doctor know if you are uptight during an exam. Maybe your doctor hasn’t noticed that you’re clinging to the ceiling. My former gynecologist had Where’s Waldo pictures on the ceiling and it really helped.

But pain can’t be ignored or averted with a cartoon character. During the exam, if I wasn’t in the stirrups I surely would have knocked the doctor out with one fail swoop. It’s O.K. to ask your doctor to stop the exam. It’s your body and your pain.

The doctor will invariably ask what your pain is like and where it is located. Be prepared. Keeping a pain log can be helpful to both you and your doctor. It is important to know when and where your pain is localized. This information can help determine which times of the month and places you are most sensitive.

In short, Help your doctor help you. Be a an active health partner and you will notice a difference in how you feel as far as having a say in your health.

CONTRACT BETWEEN YOU AND YOUR DOCTOR
I got this piece of information from a fellow endometriosis sufferer. She put this together this list of what to each of you can expect fro a doctor/patient relationship.

I recomend printing this out and taking it with you when you are interviewing a doctor that might treat you and your disease. You may even go as far as printing it up and the Doctor, Office Manager, and you as the patient sign it and then one copy goes into your chart and you keep a copy.

WHAT YOU CAN EXPECT FROM ME THE PATIENT

• I will answer all questions as honestly as I can
• I will report all medications, vitamins, and whatever other treatments I am currently using
• I will only take the medications you prescribe me for the pain that goes along with this disease
• If the medications you prescribe for some reason dose not work I will call you immediately
• I will report all appointments that I have with other doctors. I will have any results of tests done at other facilities transfered into my file with this office
• I will listen to your advice. I will try to be open to trying new treatments when there is medical evidence that they may be helpful
• I am open to any new tests (or re-tests) you may want to try. However, I will not expect you to order tests unless there is sufficient reason to believe they should be tried. I do not expect, nor do I want, every test to be tried at random
• I do not expect a quick fix
  I will accept it when you do not know what is wrong
• I will stay informed as to what is going on in research of this disease
• And I will inform you of anything that sounds like it might help me
• I will inform you of all possible side effects or pains from this disease I will not discount anything
• I will try to be patient with you, but understand this disease is very hard to live with. Patient/Doctor Contract
  
  

WHAT I HOPE I CAN EXPECT FROM YOU IS:

• You must be willing to accept a complex case with many unknowns
• You must be willing to work in a partnership with me. You must be willing to listen if I have information that may be related to my illness. We might disagree, but you should first listen to the information that I have
• You must accept that I am the final arbiter of what medicines I will take or treatments I will try
• You must be willing to consider an occasional referral outside the health care plan
• You must agree to fill out occasional forms if necessary. I will pre-fill out the forms to make them as painless as possible for you, of course they will be minus the information you must fill out
• You should not expect to fix me if you cannot. You must not become frustrated if and when I continue to be uncured
• You must keep up to date on any information concerning my disease and the treatments for it
• You must always be totally honest with me at all times
• You must always make sure that my medications will take care of the pain I am having
• You must never be short with me, on talk down to me in a time of crisis or pain
• You must understand that my husband or significant other is to be part of all of the decisions to be made in my case
• Finally, I hope you will persevere and will not give up even if we don't find any answers

Click here to find endometriosis definitions and glossary.