"About Endometriosis:

With Endometriosis, tissue like that which lines the uterus (the endometrium) is found outside the womb in other areas of the body. Normally, the endometrium is shed each month through menses; however, with Endometriosis, these implants have no way of leaving the body. The implants still break down and bleed, but result is far different than in women and girls without the disease: internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue result. In addition, depending on the location of the growths, interference with the normal function of the bowel, bladder, intestines and other areas of the pelvic cavity can occur. Endometriosis has also been found lodged in the skin – and even the brain.

Symptoms include chronic or intermittent pelvic pain, dysmenorrhea (painful menstruation is not normal!), infertility, miscarriage(s), ectopic (tubal) pregnancy, dyspareunia (pain associated with intercourse), nausea / vomiting / abdominal cramping, diarrhea / constipation (particularly with menses), painful bowel movements, painful or burning urination, urinary frequency, retention, or urgency; fatigue, chronic pain, allergies and immune system-related illnesses are also commonly reported complaints of women who have Endo. It is quite possible to have some, all, or none of these symptoms. Endo symptoms are varied and often nonspecific, so they can easily masquerade as several other conditions, including adenomyosis ("Endometriosis Interna"), appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID.

Despite today’s age of medical advances, researchers remain unsure as what causes of Endometriosis. There is NO CURE, despite the continued propagation of such myths by the uninformed who still mistakenly believe that hysterectomy, pregnancy and/or menopause can "cure" the disease. Invasive surgery remains the gold standard of diagnosis, and current therapies continue to remain extremely limited, often carrying side effects.

Mistakenly minimized as "painful periods," Endometriosis is more than just "killer cramps." It is a leading cause of female infertility, chronic pelvic pain and gynecologic surgery, and accounts for more than half of the 500,000 hysterectomies performed in the US annually. Despite being more prevalent than breast cancer, Endometriosis continues to be treated as an insignificant ailment. Recent studies have even shown an elevated risk of certain cancers and other serious illnesses in those with the disease, as well as malignant changes within the disease itself.

Research has shown that genetics, immune system dysfunction, and exposure to environmental toxins like Dioxin may all be contributing factors to the development of the disease. Endometriosis knows no racial or socioeconomic barriers, and can affect women ranging from adolescence to post-menopause. The disease can be so painful as to render a woman or teen unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. It can negatively affect every aspect of a woman’s life; from her self-esteem and relationships, to her capacity to bear children, to her ability to be a contributing member of society.

The disease can currently only be diagnosed through invasive surgery, and the average delay in diagnosis is a staggering 9 years. A patient may seek the counsel of 5 or more physicians before her pain is adequately addressed.

Once diagnosed, it is not unusual for a patient to undergo several pelvic surgeries and embark on many different hormonal and medical therapies in an attempt to treat her symptoms. None of the current treatments are entirely effective, and virtually all synthetic therapies carry significantly negative side effects; some lasting far beyond cessation of therapy. The exception to this is excision; see http://www.centerforendo.com to learn more about excision as the leading treatment.

Though Endometriosis is one of the most prevalent illnesses affecting society today, awareness is sorely lacking and disease research continues to remain significantly under funded. For instance, in fiscal year 2000, the National Institutes of Health planned to spend $16.5 billion on research. Of that funding, only $2.7 million was earmarked for Endometriosis – amounting to approximately $.40/patient. This is in stark contrast to other illnesses such as Alzheimer’s and Lupus, which received approximately $105.00 and $30.00 per patient, respectively. American businesses lose millions of dollars each year in lost productivity and work time because of Endometriosis. The cost of surgery required to diagnose the disease in each patient alone adds greatly to the financial burden of both consumers and companies alike.

Once erroneously believed to be a disease of “Caucasian career women who have delayed childbearing,” we know that in fact, Endometriosis affects women of all ages, races and
socioeconomic status. Endometriosis also can and does exist in the adolescent female population. Far from the “rare” incidence once believed, studies have found that as many as 70% of teenagers with chronic pelvic pain had Endometriosis proven by laparoscopy. Other reports indicate that as many as 41% of patients experienced Endometriosis pain as an adolescent. The illness can be quite disruptive and cause significant dysfunction, especially at a time in life when self-esteem, school attendance and performance, and social involvement are all critical. Many adolescents with Endometriosis find themselves unable to attend or participate in classes, social functions, extracurricular activities, and sports due to significant pain and other symptoms of Endometriosis. Sometimes, teens and young women lack support and validation from both the home and the school; told the pain is “in their head,” that they are “faking it,” that their debilitating cramps are “normal” and “a part of womanhood,” that they are merely suffering from “the curse,” or that they should just “grin and bear it.” Their symptoms may also be dismissed as a sexually transmitted disease, which Endometriosis absolutely is not. Failure to acknowledge and address symptoms early in the disease process can lead to significant delays in diagnosis and necessary, subsequent treatments. Lack of support from family and loved ones can also add to the patient’s pain and fear – at any age.

Recent studies have also shown that Endometriosis may in fact have an even bigger impact on younger patients than older women. One such study discovered that in patients under 22 years of age, the rate of disease recurrence was
double that of older women (35% versus 19%). The study also revealed that the disease behaves differently in
younger women; leading some researchers to believe it is a
different form of Endometriosis altogether. Surgery, considered necessary to accurately diagnose and
effectively treat the disease, is often withheld from younger patients based on the injudicious belief that early surgery somehow negatively influences a young woman’s fertility. Extensive, cumulative research has shown this concern to be unfounded. What can impact fertility, however,
is neglecting effective treatment of the disease. Some
researchers also feel that symptomatic, adolescent-onset
Endometriosis is most often a lifelong problem that will
progress to severe fibrotic disease.

While it is possible to become pregnant with Endometriosis, the key is to obtain early, effective treatment such as that offered by specialty treatment centers like the Center for Endo Care (see http://www.centerforendo.com to learn about the success of excision as treatment). Hysterectomy is not a cure for Endometriosis. Any disease left behind by the surgeon (whether by design because he or she ‘couldn’t get it all’ or accident because they don’t recognize the disease in all manifestations) will continue to thrive and cause pain and symptoms. It does not matter if the ovaries are removed or if HRT is withheld; Endo produces its own estrogen-synthesizing enzyme known as aromatase. Thus, it enables it’s own vicious life cycle and sustains the disease process. You would be better off getting all disease truly excised from all locations at a specialty center like the CEC (www.centerforendo.com).

Due in part to the efforts of foundations like the ERC, research is ongoing in some places as to the causes of Endometriosis and potential cures for the disease. Our organization will continue to push for more widespread research into the many facets of the disease, and ultimately, a cure.

For more information:

http://www.endocenter.org/

Endo Self Test:

Not sure if you have Endometriosis? While pelvic surgery is the only current way to definitively diagnose it, symptoms can lead you and your doctor to suspect the disease. Review the following and consider if any of these common symptoms apply to you. Review your answers with your gynecologist for further discussion.

Do you experience so much pain during or around your period that you find yourself unable to work, attend school or social functions, or go about your normal routine? _____YES / _____ NO

Do you have any relatives diagnosed with Endometriosis? _____YES / _____ NO

Do you find yourself with painful abdominal bloating, swelling or tenderness at any time in your cycle? _____YES / _____ NO

Do you have a history of painful ovarian Endometriomas ("chocolate cysts")? _____YES / _____ NO

Do you have a history of miscarriage, infertility or ectopic pregnancy? _____YES / _____ NO

Do you experience gastrointestinal symptoms during your cycle, such as nausea or vomiting and/or painful abdominal cramping accompanied by diarrhea and/or constipation? _____YES / _____ NO

Do you have a history of fatigue and/or a lowered immunity (i.e., "sick and tired" all the time)? _____YES / _____ NO

Do you have a history of allergies, which tend to worsen around your periods? _____YES / _____ NO

If sexually active, do you experience pain during sexual activity? _____YES / _____ NO

Do you suffer from autoimmune diseases or other conditions (i.e., thyroid disease, rheumatoid arthritis, lupus, fibromyalgia, multiple sclerosis, chronic migraines)? _____YES / _____ NO

Have you ever undergone pelvic surgery like a laparoscopy, in which Endometriosis was suspected but not definitively diagnosed?
_____YES / _____ NO

If you have answered "yes" to one or more of these questions, you may have Endometriosis. Talk to your doctor about getting an accurate diagnosis and effective treatment today. Dull aching and cramping can occur during menstruation in many women and teens, due to uterine contractions and the release of various hormones including those known as prostaglandins. However, period pain that becomes so debilitating it renders you unable to go about your normal routine is not ordinary or typical! Pain is your body’s way of signaling that something is WRONG. If you are suffering from pelvic pain at any point in your cycle, an Endometriosis diagnosis should be considered.

Know the Facts:

- Endometriosis can affect women and teens of all ages, even those as young as 10 or as old as 85!
- Hysterectomy, menopause and pregnancy are NOT cures for Endometriosis; in fact, there is no definitive cure!
- Delayed childbearing is NOT what causes Endometriosis; in fact, no one really knows for sure what causes the disease, but research points to multi-factorial origins like heredity, immunology and exposure to environmental toxicants!
- Endometriosis can only be accurately diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive!
- GnRH therapies like Lupron should never be administered in those patients younger than 18 yrs. of age or before a surgical diagnosis!
- You CAN live well in spite of Endometriosis. WE ARE HERE TO HELP!" ~ http://www.endocenter.org
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Also try to eat a lot of vegetables and take a multivitamin that will help your body cope with what’s going on. Different things work for different women. Just experiment till you find something that works. I was on the Depo shot and will never consider it again. I gained 45 pounds on it and became really emotional. I was on probably 10 different forms of the pill they usually worked for a short time. I also had the lap surgery and that helped a lot although initially after the surgery I was still in pain for about a month and half.

Please do a lot of research if you decide to have a hysterectomy. Some women still have reoccurrence after surgery and they recently came out with research that says it is important to keep your ovaries.

Endometriosis is a tough path to travel. I found only I was the person who knew the most about my endo situation and thus started doing all my own research and telling doctors what I was and wasn’t willing to try. I’d also keep looking for a better doctor. A specialist if there is one in your area. I wish you the best of luck in finding something to help.
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Check out these websites:
-www.endometriosis.org
-www.endo-online.org
-www.endozone.org
-www.endosupport.com
They have good research and suggestions.
Also 2 good books just came out:
-Endometriosis: A Holistic Healing Guide
-Living Well with Endometriosis.

Doctors told me when i was 18 that getting pregnant helps it and i couldn’t believe they were telling me this but i did have a baby when i was 21. I am now 26 and i still hurt that way still yet.

Maybe having a hysterectomy would help you but you are so young and i am sure you want kids so maybe you should go to another doctor.

I know a wonderful doctor that treats endo….when you visit his website don’t think all he does is untie women’s tubes. I went to him for my endo and i couldn’t go back because of the lack of insurance i had.
Dr. Richard Levin http://www.babies-by-levin.com
(call and ask about it)

Good luck and i hope your pain goes away…I know how it is.
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In the meantime, at home, use ibuprofen, motrin or advil for the pain (NSAIDs) due to their anti-inflammatory effect. Take them on a regular schedule as prescribed on the bottle. Apply heat to your lower abdomen in the form of a hot water bottle, hot bath or heating pad. Lie down! If on your back, put a pillow under your knees. If on your side, curl your knees up to your chest. Get regular exercise.

If you have any questions, please don’t hesitate to email me. Just click on my avatar.
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I’m an R.N.

I really am at a loss for anything that might help, as I am sure you have tried everything in a vain attempt at relief.

But I send my blessings.
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