• The survey results comprise responses from 4,000 members of the Endometriosis Association.
• 96% of respondents experienced pain, 95% with the menstrual period, 83% pain at ovulation, 75% pain at other times.

• When asked to rank severity of pain, 71% of the women rated their pain between moderate and severe.
• The most common symptom of endometriosis is pain at the time of menstruation (95%), followed by fatigue/exhaustion (87%), diarrhea/painful bowel movements at the time of the period (85%), abdominal bloating (84%) and heavy bleeding (65%).

• When asked whether they were able to carry on normal work and activities, 79% of the respondents indicated that they were not, with a quarter being incapacitated for between two and six days.
• As expected with such a sample, 96% of respondents had been diagnosed, of which 82% had been diagnosed through a laparoscopy (see endometriosis background for information).

• 65% of the sample visited their doctor specifically because of their symptoms, although when first experiencing them, 58% of the sample thought that they were normal, with three-quarters not suspecting that they had endometriosis.
• Most information on endometriosis seemed to have been gleaned from newspapers and magazines, or from a friend or relative.
• 47 % of sufferers indicated that they had had to see a doctor five times or more before they had received a diagnosis or referral.

• The delay in diagnosis was recorded at 9.28 years; this includes a delay in the patient seeking help from a physician for an average 4.67 years and a delay of 4.61 years in the doctor making a diagnosis of endometriosis.

• Part of the reason for the delay in seeking medical help by the patients is the fact that half were under 25 years old when symptoms began. (21% were under 15; 38% were under 20.)
• Of the 4,000 women surveyed, 61% were told that there was nothing wrong with them when they first consulted a doctor.

• One in three women stated that their doctors took their symptoms "not very seriously" and a quarter "not at all seriously." However, verdicts on the helpfulness of doctors were divided. .

• Painkillers and the oral contraceptive pill were given to about three-quarters of those surveyed to treat the condition. 59% were prescribed a GnRH drug (Zoladex, Lupron, Synarel, Suprefact).
• Alternative treatments such as vitamins and minerals (38%), making changes to diet (35%), and exercising (35%) were also tried with varying degrees of success.
• Surgery is also used to treat endometriosis and over two thirds of the sample had had a laparoscopy for the removal of endometriosis and 28% had had a laparotomy (major open abdominal surgery) with a quarter having surgery for adhesions. Seventeen percent had had a hysterectomy; 19% had had their ovaries removed.
• 57% of the sample indicated that they had an allergy, with many citing hay fever type allergens such as pollens (41%)-compared to only 13% of the general population- grasses (29%) and trees (25%).
• Fourteen percent were diagnosed with asthma compared to six percent in the general population.

For further information, contact: Mary Lou Ballweg, President/Executive
Director, International Headquarters, 85485 N. 76th Place, Milwaukee,
Wisconsin 53223, USA
Tel: (414) 355-2200
Fax: (414) 355-6065
e-mail: endo@endometriosisassn.org
Web site: http://www.EndometriosisAssn.org