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Endometriosis Resources
 Portrait of the Barone by Marie Laurencin |
Endometriosis can affect women of all races at any time during their reproductive years. An estimated 5 million women in the United States alone are affected. Some teenagers display symptoms from the time of their first menstrual cycle. 47% of women who are diagnosed with the disease had symptoms before the age of 20. The cause of endometriosis is unknown, but it is known the course of the disease is relentless without treatment. Scar tissue, inflammation, pain and other problems gradually become worse. If you suspect you or someone you know is afflicted with this disease, good medical care should be sought immediately. Doctors who are knowledgeable can slow the progress of the disease and help devise a plan for relief. In addition, support groups are available for information and understanding.
Symptoms That Could Indicate Endometriosis
Spasmodic/stabbing menstrual cramps and pain
Pain at ovulation (midcycle)
Premenstrual pain (up to two weeks prior)
Excessive menstrual bleeding
Premenstrual spotting
Menstrual irregularity
Pelvic pain
Low back pain
Painful intercourse
Infertility
Constipation, painful bowel movements, diarrhea
Rectal bleeding (especially with menstruation)
A sense of rectal fullness
Abdominal pain, swelling, vomiting
Urinary frequency, pain on urination
Blood in the urine during menstruation
Faintness, dizziness
Headache
Pain in inner thighs
Hot and cold sensations
Ongoing Fatigue
Bloody cough
Nodules under the skin
Low resistance to infections
What to do if you suspect you have endo
 Cafe Du Theatre by M. Dulon |
I am a current/former patient of your medical facility. This letter is to request a copy of my complete medical records, including, but not limited to, all reports, notes, lab results, transcripts, videos, photographs, Operative Reports (Doctor's), Hospitalization Reports, Pathology Reports, Anesthesiology Notes and office visit summaries. I believe it is important that I receive copies of all information you may possess concerning my medical health.When you receive these copies, organize them into files and review them for inappropriate remarks.
One woman, who suffered severe pain, found notations that indicated she might be an addict of a certain painkiller because she insisted on that particular prescription and no other. She had previously found, through trial and error, she was either allergic to or received no relief from the other painkillers suggested by the doctor. She insisted these notations be changed so there would be no adverse consequences from others who might see the records and misunderstand the situation.
2. Based on these records, prepare a short history of your symptoms, the approximate time periods involved, the doctors you have seen, the results of the suggested treatments, and any other information which may seem important. Keep this history up to date.
3. Create a calendar to keep a record of your current symptoms, their duration, and other things that occur which might affect these symptoms. For instance: starting or stopping vitamins or herbal remedies, a stressful situation, weight gain or loss, pain, depression or other illnesses such as the flu or a cold. All of these could play a part in the severity of the symptoms or help your doctor pinpoint the cycles of your disease. Keep this chart up to date also.
4. Provide your current doctor with a copy of any of these records that may be important for a proper diagnosis. Ask for a thorough review of all the records you provide and discuss them with the doctor. Be sure you understand the importance of each symptom and what it indicates.
5. When you decide to select a new doctor, look for one who has prior experience with endo. Do a short interview over the telephone concerning qualifications and references. Try to get specifics. What special training has the doctor received? Is it current? How many of his patients are being treated for this disease? If he cannot find the diagnosis for your symptoms, will he give you a referral to another doctor who specializes in this disease?
6. Before you visit a new doctor, ask the doctor or medical staff which files would be important and provide a copy for them on your first visit. If you are unable to copy a particular record, have it ready for the doctor's review, but do not leave it in the office. This is your medical history, and it is important for you to keep a complete record. Let the new doctor know you want to receive complete copies of all records at his facility also.
7. When you make your doctor's appointment, let his staff know you will want some extra time with the doctor for questions. Write down these questions in advance and make a promise to yourself to get answers to each of them. You have a right to information concerning the medical decisions you need to make. Do not let the doctor make these decisions for you without understanding these basics:
What disease do the symptoms indicate?A second opinion should be requested if you still have doubts about the procedure or if your doctor recommends a surgical procedure for removal of any body organ.
Could they indicate other problems as well?
What is the actual procedure being proposed?
Will the recommended procedure try to diagnose or cure the symptoms?
What is the reason this particular procedure is being recommended?
What are the expected outcomes?
What is the expectation of success if the procedure is done?
What would happen if this procedure was not done?
What are the alternatives and why are they not the #1 recommendation?
How many times has the doctor successfully performed this procedure?
8. Stay involved in your own medical care. No one else can know when the symptoms start, when they leave, which drugs or procedures make you feel better or worse, or make informed consent on your behalf. The more you know about your body, this disease and the current treatments, the sooner you will find relief.
Recommended Endo-related reading
Fibroid Tumors and Endometriosis by Susan Lark, MD., Westchester Publishing Company, $ 12.95 ISBN 0-917010-54-X
The Endometriosis Answer Book, by Niels H Lauersen, M.D., Ph.D, and Constance de Swaan, Fawcett Books $ 12.00
The Hysterectomy Hoax, by Stanley West, M.D. with Paula Dranov. Publisher: Doubleday, 1994, ISBN 0-385-46820-2, $17.95 Can/$ 12.95 US (has a chapter on endo)
Alternatives for Women With Endometriosis: A Guide by Women for Women, Ruth Carol, editor.
Other recommended resources
WITSENDO Mailing list (an online support group).
Description: Discussion of endometriosis and the sharing of remedies.
To sign up: send a subscription request to: listserv@listserv.dartmouth.edu
The first line of the message should read: subscribe Witsendo last name, first name
Endometriosis Association
8585 N. 76th Place
Milwaukee, Wisconsin 53223 USA
(800) 992-3636 US, Puerto Rico, The Virgin Islands, and the Bahamas
(800) 426-2END Canada
(414) 355-2200
FAX: (414) 355-6065
Overcoming Endometriosis: New Help from the Endometriosis Association can be ordered from the Association for $9.95 U.S./$12.50 Canada. The Association also has available educational videotapes, cassette tapes of speeches by leading experts on the disease, booklets, kits, and newsletters. For a free information packet including their "Materials To Help You" catalog, call or write to them. If you are not diagnosed with endometriosis but wonder if you might have it, you can order "How Can I Tell If I Have Endometriosis?" Kit. Send $ 3.75 U .S. /$4.75 C for the kit.Endometriosis Care Center
4575 N. Shallowford RoadAtlanta, GA 30338
The American College of Obstetricians and Gynecologists (ACOG)
409 12th Street, S.W.
Washington, D.C. 20024-2188
(202) 638-5577
