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CPT Survey
In January 2005, we put together a questionnaire that could be used to document the experiences of so many of you who have written to us. Our goal was to combine the specifics of your individual conditions, and to report those trends on this survey page. In order to preserve your privacy, your identities are known only to us. Your responses are integrated with other surveys submitted, and the data presented in a statistical format.
NEW For 2008: The Survey is now on-line, and easy to complete in about ten minutes!
If you have experienced CPT, we would really appreciate your participation. Please send us an e-mail, and request the link. Your survey responses can be instrumental in helping other ladies make more informed treatment choices for themselves.
The survey presents information in three parts:
Menstrual History (Symptoms, Diagnosis, Treatment)
CPT History (Symptoms, Diagnosis, Treatment)
Current Status / Future Treatment Plans
Survey Results as of: April 2008
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Number of Respondents: 29
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Results are presented as the total number of responses for each answer, and in some cases as a percentage of the total number of ladies who completed the survey. Percentages are rounded to the nearest whole number.
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Reported Age when Menstruation began
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Reported Number of Pregnancies
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Reported History of Breastfeeding
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Reported History of Complications During Pregnancy
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The Total # of respondents are the number of ladies who reported the complication. The Total % of respondents is the percentage of the total number of ladies who completed the survey.
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Complication
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Total # of respondents
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Total % of respondents
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Gestational diabetes
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1
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3%
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Blood platelet disorder
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1
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3%
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Thrombophilia
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1
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3%
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Miscarriage
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1
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3%
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Reported History of Menstrual Symptoms by Age
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Each answer is displayed as the total number of ladies who indicated a symptom in a given age range. The final column displays an overall percentage of ladies who reported each symptom, regardless of the age at which the symptom was experienced.
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Menstrual Symptoms
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10-12 yrs
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13-15 yrs
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16-18 yrs
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19-21 yrs
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22+ yrs
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Total % of respondents
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Irregular cycle
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1
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5
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1
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5
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41%
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Pelvic pain
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2
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2
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3
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1
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5
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45%
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Severe cramping
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4
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7
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3
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4
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3
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72%
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Heavy flow or clotting
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1
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4
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1
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2
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11
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66%
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Pre menstrual syndrome (PMS)
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3
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5
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2
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6
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55%
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Fatigue
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4
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3
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2
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8
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59%
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Migraine headaches
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1
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1
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2
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1
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4
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31%
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Dizziness / light-headedness
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1
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1
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1
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5
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28%
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Depression
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1
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1
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7
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31%
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Anxiety
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2
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4
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21%
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Nausea or vomiting
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2
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1
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3
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3
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31%
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Constipation
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1
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2
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2
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3
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5
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45%
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Bowel pain
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1
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6
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24%
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Bloody stool (during cycle only)
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1
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4
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17%
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Bloating
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1
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4
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3
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1
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10
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66%
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Abdominal pain
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1
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3
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1
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7
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41%
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Pica (chewing on ice)
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1
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2
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10%
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Restless leg syndrome
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1
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2
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3
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21%
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Low blood sugar / fainting
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3
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2
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1
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3
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31%
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Lower back pain
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1
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3%
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Low iron
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1
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3%
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No menstrual symptoms
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0%
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Reported Diagnosis of Menstrual Conditions by Age
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Each answer is displayed as the total number of ladies who indicated a diagnosis in a given age range. The final column displays an overall percentage of ladies who reported each diagnosis, regardless of the age in which the diagnosis was received.
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Menstrual Diagnosis
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16-20 yrs
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21-25 yrs
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26-30 yrs
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31-35 yrs
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36+ yrs
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Total % of respondents
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Endometriosis
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1
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6
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1
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6
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48%
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Uterine fibroids
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2
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6
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28%
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Ovarian cysts
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1
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1
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5
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2
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2
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38%
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Cervical dysplasia
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2
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1
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1
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14%
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Infertility
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4
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2
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1
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24%
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Fibrocystic breasts
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1
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1
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1
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1
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14%
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Hypoglycemia
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1
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3%
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Anemia
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1
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1
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1
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10%
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Fibromyalgia
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0%
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Chronic fatigue syndrome
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0%
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Irritable bowel syndrome
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2
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7%
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Dysmenorrhea
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1
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3%
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No menstrual diagnosis
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14%
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Reported Surgical, Laparoscopic or other Procedures by Age
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These procedures were performed in order to treat, resolve or repair a menstrual abnormality or condition, prior to CPT diagnosis. Each answer is displayed as the total number of ladies who indicated a procedure in a given age range. The final column displays an overall percentage of ladies who reported each procedure, regardless of the age in which the procedure was endured.
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Surgical / Laparoscopic or other Procedure
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16-20 yrs
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21-25 yrs
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26-30 yrs
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31-35 yrs
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36+ yrs
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Total % of respondents
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Laparoscopic removal of endo
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1
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3
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1
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3
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28%
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Fibroid removal
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3
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10%
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Cervix cryosurgery
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1
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1
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1
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10%
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Ovarian cyst removal
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2
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1
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2
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17%
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Uterine prolapse repair
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1
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1
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7%
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D&C or Ablation procedure
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1
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1
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2
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1
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17%
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Tubal ligation
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1
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3%
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Partial Oophorectomy (one ovary removed)
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1
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1
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7%
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Partial Hysterectomy (uterus removed, ovaries retained)
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1
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3%
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Full Oophorectomy (both ovaries removed)
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0%
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Full Hysterectomy with Oophorectomy
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0%
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No surgical / laparoscopic procedures performed
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52%
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Reported Medications by the Number of Months Taken
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These medications were prescribed in order to treat or resolve a menstrual condition, prior to CPT diagnosis. Each answer is displayed as the total number of ladies who indicated a medication in a given time frame. The final column displays an overall percentage of ladies who reported each medication, regardless of how long the medication was taken.
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Medications prescribed
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1-3 mos
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4-6 mos
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7-12 mos
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1-2 yrs
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3+ yrs
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Total % of respondents
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Oral contraceptives (ethinyl estradiol + progestin)
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1
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1
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10
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41%
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Mirena coil (intra-uterine progestin)
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2
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7%
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Depo Provera (medroxyprogesterone)
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1
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1
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7%
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Zoladex (goserelin, GnRH agonist)
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1
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3%
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Lupron (leuprolide, GnRH agonist)
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1
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3%
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Dimetriose (gestrinone, GnRH agonist)
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1
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3%
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Fertility hormones
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1
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3%
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Tamoxifen
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1
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3%
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Prometrium (micronized progesterone)
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0%
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Bio-identical progesterone cream
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1
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3%
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No medications prescribed
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52%
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Reported CPT Symptoms by Age
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Each answer is displayed as the total number of ladies who indicated a symptom in a given age range. The final column displays an overall percentage of ladies who reported each symptom, regardless of the age at which the symptom was experienced.
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CPT Symptom
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<32 yrs
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33-35 yrs
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36-38 yrs
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39-41 yrs
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42-44 yrs
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45+ yrs
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Total % of respondents
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Chest pain
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9
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1
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4
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4
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3
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72%
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Back / shoulder blade pain
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8
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1
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6
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6
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2
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1
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76%
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Shortness of breath
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6
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1
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5
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3
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1
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1
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59%
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Dizziness
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4
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1
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2
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24%
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Crackling sound with inhalation
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4
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3
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7
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4
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62%
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Feeling of "bubbles" or lung movement with bending
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5
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1
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2
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6
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3
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59%
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Fatigue
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1
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1
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7%
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Shoulder pain
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1
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1
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2
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2
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21%
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Cough
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1
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3%
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Side pain
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1
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3%
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Coughing up blood
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1
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3%
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No CPT symptoms experienced
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14%
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Reported Age at the time of First Collapse
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Reported Involvement of One or Both Lungs
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Reported Types of Collapses
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Reported Techniques used to Confirm / Verify Collapses
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Reported CPT Treatments by Frequency
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Each answer is displayed as the total number of ladies who indicated each treatment by the number of times she endured each one.
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Reported Final Surgical or Continuing Hormonal Treatment
and Length of Collapse-free Status
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Each answer is displayed as the total number of ladies who indicated the treatment as her last by the number of months she has remained collapse-free, following the reported treatment. The final column displays an overall percentage of ladies who reported the treatment as her most recent, regardless of the length of time she has been collapse-free. (For this table, VATS and Thoracotomy are understood to be the surgical means by which the surgeon performs a repair procedure, but are not treatments in of themselves.)
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Future Treatments being Considered
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The Total # of respondents are the number of ladies who reported the treatment being considered. The Total % of respondents is the percentage of the total number of ladies who completed the survey.
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Future Treatments Considered
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Total # of respondents
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Total % of respondents
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Full Hysterectomy or Full Oophorectomy
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6
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21%
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Lupron or other GnRH agonist therapy
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2
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7%
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Mirena coil
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1
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3%
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Continuous oral contraceptives (progestins)
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0%
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Alternating regimen of GnRH agonist / continuous birth control pills
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2
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7%
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Tubal ligation
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1
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3%
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Prometrium or bio-identical progesterone
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2
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7%
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Thoracotomy
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3
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10%
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Pleurectomy
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1
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3%
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Avoiding progestins, due to blood clots following use
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2
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7%
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Waiting for menopause
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1
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3%
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Survey Summary
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*For CPT patients* Please note that we are not physicians and are not providing medical advice. Results presented in this survey are reflective of the conditions of the ladies who have responded. We do not mean to imply that their treatment history will be the same for you. We present this data so that you can be better informed about treatment options, and be able to discuss those options with your personal physician.
Survey results indicate that treatments which discontinued the menstrual cycle were more successful than other reported treatments. 12 of 29 respondents reported a collapse-free status of over one year. Of those, 3 had reported diaphragm repair or pleurodesis as their final treatment, while 9 were no longer menstruating due to surgical or chemical menopause.
Many ladies indicated VATS or thoracotomy with diaphragm repair and/or pleurodesis. However, only 3 reported this treatment as her last, having achieved collapse-free status for at least one year. Most ladies continued to experience collapses after thoracic surgery, leading to further surgery or hormonal treatment. This would indicate that thoracic surgery alone, which does not address the underlying hormonal cause, is not a long-term solution.
Although 4 ladies had reported success with the use of GnRH agonists/continuous progestins, 9 others currently using this treatment reported a collapse-free status of six months or less. Women who reported total hysterectomy (with ovaries removed) experienced the best success.
As expected, many of the women had a long history of pelvic endometriosis and related menstrual problems. Many experienced menstrual symptoms in their teens and 20's before being diagnosed with abnormalities in their late 20's or 30's. Approximately 55% of respondents had used birth control pills or other progestins to treat menstrual problems. Pregnancy was reported in about 66% of the women and about 48% of ladies reported breastfeeding.
As the levels of estrogen and progesterone are effected by pregnancy, breastfeeding and synthetic hormone use, the comparison of hormone levels between healthy women and those with endometriosis would be an interesting topic for further study.
For now, we hope these results give you and your doctor something to talk about. We greatly appreciate the ladies who took the time to share their stories with us, so that we could share them with you! April 2008
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We will update the survey page as new surveys are submitted and the results are integrated with those reported here.
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