CPT Survey

CPT Survey

In January 2005, we developed 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.

If you have HAD YOUR LUNG COLLAPSES VERIFIED and have RECEIVED TREATMENT for catamenial pneumothorax, we would really appreciate your participation. Please access the link below to complete the survey. Your survey responses can be instrumental in helping other ladies make more informed treatment choices for themselves. If you have not yet had collapses verified and/or have not been treated for CPT, please wait to complete the survey until you have a treatment history to report. Additionally, if you have already completed your survey and wish to update your status, please do not complete a second survey, but send us an e-mail and we will see that your information is updated.

The Survey is available on-line through Survey Monkey.com, and can be completed in about ten minutes! Please click here to activate the link.

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: January 2011

Number of Respondents: 91

Results are presented as the total number of responses for each answer, and in some cases as a percentage of the total number of women who completed the survey.

Reported Age when Menstruation began

Reported Number of Pregnancies

Reported History of Breastfeeding

Reported History of Complications During Pregnancy

The Total # of respondents are the number of women who reported the complication. The Total % of respondents is the percentage of the total number of women who completed the survey.

Complication	Total # of respondents	Total % of respondents
Gestational diabetes	3	3%
Blood platelet disorder	1	1%
Thrombophilia	1	1%
Miscarriage	5	5%
Placenta previa	2	2%
Tubal pregnancy	1	1%
Preeclampsia	1	1%
Anemia	1	1%
Premature labor	1	1%
Hypertension	1	1%

Reported History of Menstrual Symptoms by Age

Each answer is displayed as the total number of women who indicated a symptom in a given age range. The final column displays an overall percentage of women who reported each symptom, regardless of the age at which the symptom was experienced.

Menstrual Symptoms	10-12 yrs	13-15 yrs	16-18 yrs	19-21 yrs	22+ yrs	Total % of respondents
Irregular cycle	5	22	2	3	12	48%
Pelvic pain	7	12	9	5	15	52%
Severe cramping	10	22	14	7	8	67%
Heavy flow or clotting	5	16	11	6	28	72%
Pre menstrual syndrome (PMS)	5	17	11	8	17	63%
Fatigue	2	14	10	8	15	64%
Migraine headaches	3	3	7	4	14	34%
Dizziness / light-headedness	2	6	7	3	15	36%
Depression	1	7	8	1	13	32%
Anxiety	2	3	6	2	15	30%
Nausea or vomiting	3	9	6	4	7	31%
Constipation	6	11	7	5	13	46%
Bowel pain	4	11	4	4	12	30%
Bloody stool (during cycle only)	2		3		8	14%
Bloating	6	11	14	6	20	62%
Abdominal pain	6	17	7	8	17	60%
Pica (chewing on ice)	1	1			5	7%
Restless leg syndrome	2	1	5		14	24%
Low blood sugar / fainting	3	11	5	2	8	31%
Lower back pain			1			1%
Low iron					1	1%
Loose bowels				1		1%
Bleeding gums during menses					1	1%
Breast pain			1			1%
Cervix pain					1	1%
No menstrual symptoms						2%

Reported Diagnosis of Menstrual Conditions by Age

Each answer is displayed as the total number of women who indicated a diagnosis in a given age range. The final column displays an overall percentage of women who reported each diagnosis, regardless of the age at which the diagnosis was received.

Menstrual Diagnosis	16-20 yrs	21-25 yrs	26-30 yrs	31-35 yrs	36+ yrs	Total % of respondents
Endometriosis	2	7	15	7	15	49%
Uterine fibroids			3	7	11	23%
Ovarian cysts	1	7	10	6	6	32%
Cervical dysplasia	2	7	2	2	1	15%
Infertility		4	9	6	2	23%
Fibrocystic breasts	1	5	6	3	2	18%
Hypoglycemia	1	2	1	1	1	6%
Anemia	7	3	6	2	3	23%
Fibromyalgia				1	1	2%
Chronic fatigue syndrome						0%
Irritable bowel syndrome	2	2	1	4	2	12%
Dysmenorrhea	1					1%
Adenomyosis					1	1%
Uterine prolapse		1				1%
Breast cancer					1	1%
Anovulation		1				1%
No menstrual diagnosis						19%

Reported Surgical, Laparoscopic or other Procedures by Age

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 women who indicated a procedure in a given age range. The final column displays an overall percentage of women who reported each procedure, regardless of the age at which the procedure was done.

Surgical / Laparoscopic or other Procedure	16-20 yrs	21-25 yrs	26-30 yrs	31-35 yrs	36+ yrs	Total % of respondents
Laparoscopic removal of endo	1	6	9	6	3	27%
Fibroid removal			1	1	4	6%
Cervix cryosurgery	1	5	3	1		10%
Ovarian cyst removal			3	5	4	12%
Uterine prolapse repair				1		1%
D&C or Ablation procedure	2	5	3	3	2	16%
Tubal ligation					1	1%
Breast cyst removal			1			1%
Partial Oophorectomy (one ovary removed)			1		1	2%
Partial Hysterectomy (uterus removed, ovaries retained)						0%
Full Oophorectomy (both ovaries removed)						0%
Full Hysterectomy with Oophorectomy						0%
No surgical / laparoscopic procedures performed						52%

Reported Medications by the Number of Months Taken

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 women who indicated a medication in a given time frame. The final column displays an overall percentage of women who reported each medication, regardless of how long the medication was taken.

Medications prescribed	1-3 mos	4-6 mos	7-12 mos	1-2 yrs	3+ yrs	Total % of respondents
Oral contraceptives (ethinyl estradiol + progestin)	7	2	2	6	23	43%
Mirena coil (intra-uterine progestin)	2					2%
Depo Provera (medroxyprogesterone)	4	2		1	1	8%
Zoladex (goserelin, GnRH agonist)		1				1%
Lupron (leuprolide, GnRH agonist)	1	2	1	1		5%
Dimetriose (gestrinone, GnRH agonist)		1				1%
Fertility hormones		1	1			2%
Tamoxifen				1		1%
Tranexamic acid				1		1%
Prometrium (micronized progesterone)	1					1%
Bio-identical progesterone cream	1					1%
No medications prescribed						50%

Reported CPT Symptoms by Age

CPT Symptom	<32 yrs	33-35 yrs	36-38 yrs	39-41 yrs	42-44 yrs	45+ yrs	Total % of respondents
Chest pain	31	4	12	6	7	5	71%
Back / shoulder blade pain	35	5	12	7	8	5	79%
Shortness of breath	27	3	11	3	4	6	59%
Dizziness	20	1	3	3	4	3	37%
Crackling sound with inhalation	24	3	9	7	7	6	61%
Feeling of "bubbles" or lung movement with bending	27	5	10	7	6	6	67%
Fatigue		2		1			3%
Shoulder pain	1	2	2	2			7%
Cough	1		1			1	3%
Side pain			1				1%
Coughing up blood					1		1%
No CPT symptoms experienced							9%

Reported Age at the time of First Collapse

Reported Involvement of One or Both Lungs

Reported Types of Collapses

Reported Techniques used to Confirm / Verify Collapses

Reported CPT Treatments by Frequency

Each answer is displayed as the total number of women who indicated each treatment by the number of times they endured each one.

Reported Final Surgical or Continuing Hormonal Treatment

and Length of Collapse-free Status

Each answer is displayed as the total number of women who indicated the treatment as their last by the number of months each has remained collapse-free. The final column displays an overall percentage of women who reported the treatment as their most recent, regardless of their collapse-free status. (For this table, VATS and Thoracotomy are understood to be the means by which the surgeon performs a repair procedure, but are not treatments in of themselves. In cases where multiple thoracic procedures were performed concurrently, the result was recorded as the most aggressive of the combined treatments. For example, "diaphragm repair" or "diaphragm repair combined with pleural abrasion" would both be listed as diaphragm repair. In cases where hormonal treatment was applied concurrently with thoracic surgery, they are so designated).

Final or Continuing Treatment	1 mo	3 mos	6 mos	12 mos	18 mos	2 yrs	3+ yrs	Total % of respondents
Oxygen only	3	1	1	1			1	7%
Aspiration / Chest tube	2	1						3%
Chinese medicine			1					1%
Pleurodesis alone (all kinds)	6	2	1					9%
Bleb repair / removal	1	4	1		2		4	13%
Lung sections removed	2		1					3%
Diaphragm repair - suture/stapling	1			3		1		5%
Diaphragm repair - poly mesh						1		1%
Diaphragm repair - abdominal side	1					1		2%
Pleurectomy (removal of pleura)		1		2	1	1		5%
Continuous birth control pills (BCPs)		1	2	1		2		6%
Continuous BCPs + thoracic surgery	1					1	1	3%
Continuous BCPs + Lupron				2		2		4%
Lupron (GnRH agonist)				1		2	1	4%
Lupron + thoracic surgery			1			1		2%
Depo Provera (Progestin)			1			2		3%
Zoladex (LHRH angonist)	1							1%
Cyproterolone (anti-androgen)							1	1%
Mirena coil						1	1	2%
Prometrium / bio-ident progesterone							1	1%
Sottopelle bio-identical implants							1	1%
Partial Oophorectomy (one ovary removed)								0%
Partial Hysterectomy (uterus removed)								0%
Full Oophorectomy (both ovaries removed)	1			1			2	4%
Full Hysterectomy (both uterus and ovaries removed)				1	1	1	8	12%

Future Treatments being Considered

The Total # of respondents are the number of women who reported the treatment being considered. The Total % of respondents is the percentage of the total number of women who completed the survey.

Future Treatments Considered	Total # of respondents	Total % of respondents
Full Hysterectomy or Full Oophorectomy	18	19%
Lupron or other GnRH agonist therapy	6	6%
Mirena coil	1	1%
Continuous oral contraceptives (progestins)	2	2%
Tubal ligation	1	1%
Prometrium or bio-identical progesterone	1	1%
Pleurodesis	1	1%
Pleurectomy	1	1%
VATS / Diaphragm repair	2	2%
Waiting for menopause	1	1%
Pregnancy	2	2%
Chinese medicine	1	1%
Acupuncture	1	1%

Survey Summary

*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.

The most surprising result was a change in the most often reported age range for first collapses. From 91 respondents, 31 women reported this age as less than 32. This option was selected by a margin of two to one over all other options. Just two years ago, the most commonly reported age was 39-41 years, which was consistent with the scientific literature. Now it appears that women are being diagnosed much earlier than just a few years ago. A similar trend was seen in the age at which women are reporting CPT symptoms. With the vast amount of information on-line, it is reasonable that both patients and their doctors are more familiar with the condition, so that women are being diagnosed at an earlier age.

Survey results continue to indicate that treatments which include a plan to address the endometriosis are more successful than treatments which involve thoracic surgery alone.

38 of 91 respondents reported a collapse-free status of 6 months or less. Of these, 5 reported no treatment, 25 reported thoracic treatment alone as their most recent, 2 reported thoracic surgery combined with hormonal treatment, and 3 were no longer menstruating due to surgical or chemical menopause.

53 of 91 women reported a collapse-free status of one year or more. Of these, 2 reported no treatment, 16 reported thoracic treatment alone as their most recent, 3 reported thoracic surgery combined with hormonal treatment, 2 reported bio-identical hormone therapy and 30 were no longer menstruating due to surgical or chemical menopause. Of the 16 who reported thoracic treatment alone, 3 noted that while they remain collapse-free, they continue to have monthly chest/back pain.

As mentioned above, 2 women reported the use of bio-identical hormone therapy in order to treat endometriosis by balancing the hormones. One reported the use of pharmacy compounded bio-identical progesterone. The second reported the use of the Sottopelle bio-identical hormone implants. Both women reported a collapse-free status of 3+ years without pain, although they continue to menstruate.

26 of 91 women reported the use of synthetic hormones to stop menstruation (Lupron, Zoladex, Depo Provera, continuous birth control pills, etc). Of these, 15 reported a collapse-free status of 2-3 years.

15 of 91 women reported either a full oophorectomy (both ovaries removed) or a full hysterectomy (both ovaries and uterus removed). Of these, 4 reported a collapse-free status of 1-2 years and 10 reported a collapse-free status of 3+ years. The one women who reported a collapse-free status of 1 month also reported that she started on synthetic hormone replacement therapy (HRT) immediately following her oophorectomy, and has since continued to have collapses. A second woman in the one- year category also corresponded with us, reporting that she too continued to have collapses when HRT was taken immediately following surgery. Since discontinuing HRT therapy, she has remained collapse-free. A third woman in the three-year category also reported that four months after her oophorectomy she had to have a second surgery to remove ovary remnants which had inadvertently been left and had caused menstruation to resume. This example further illustrates the importance of complete ovary removal for the purpose of treating CPT.

As can be surmised by the treatment choices of many women who have taken this survey, suppression of endometriosis by stopping the menstrual cycle remains a key point. Whether it be with Lupron or ovary removal, the goal seems to be estrogen suppression. Many doctors understand this purpose in performing an oophorectomy, and encourage patients to wait at least 6 months before starting on any HRT. However, some obviously do not understand the dynamics of endometriosis, and prescribe estrogen therapy immediately following surgery, thereby defeating the whole purpose of removing the ovaries in the first place.

Overall, surgical menopause still shows the best success rate in preventing collapses if HRT is initially withheld. Of the 14 women who followed this treatment, all of them remain collapse-free, most well over the 3-year mark.

Additional survey results showed, as expected, a trend of pelvic endometriosis and related menstrual problems. Many women experienced menstrual symptoms in their teens and 20's before being diagnosed with abnormalities in their late 20's or 30's. Approximately 43% of the respondents had used birth control pills or other progestins to treat menstrual problems.

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!

January 2011

We will update the survey page as new surveys are submitted and the results are integrated with those reported here.