Putting the “Me” in Endometriosis!
Doctor’s appointment yesterday was dreadful. Period still hasn’t shown up, not because I am pregnant but because of progestin-only pills (off combined pills because estrogen was making my migraines worse, Dr. wanted to avoid pesky stroke) not suppressing things properly, hence renewed pain, lengthening/possibly anovulatory cycles, etc. Laparoscopy consult scheduled for September 1st. Thanks to Akeeyu for recent post, which will probably come in quite handy. Doctor was humorless, as evidenced by the following excerpt from our conversation:
Note: Doctors frequently suggest keeping track of endometriosis pain in notebook which can later be reread for sad form of recreation. I have never done this, as am extremely lazy.
Doctor: “Have you been keeping a pain journal?”
Alexa: “Well, my diary isn’t very cheerful, but I don’t know that I’d call it a ‘pain journal!’”
Doctor: “___”
The Nearly Fiance says the Doctor didn’t laugh because I have the sense of humor of an 85-year-old former vaudevillian.*
Anyway, returned to work for second opinion from Dr. Google, and found this quote on Endometriosis.org:
“The fact that there is no non-invasive, definitive diagnostic method for endometriosis is as frustrating for clinicians as it is for women with the disease.”
Had mild case of hysterics, editor in adjacent cubicle demanded to know What Was So Funny. Oh, nothing. Poor Clinicians! Perhaps they should keep pain journal as well?
*During the genetics unit (Mendel’s Peas) in 7th grade biology, we were required to note the genetically linked traits of our lab partners, i.e.: “free” or “attached” earlobes, clockwise or counterclockwise hair whorls etc. My partner’s hair whorl was kind of both, and I remarked that she had “The best of both Whorls!” which I found so hilarious I was unable to stop giggling for the rest of class. Lab partner, all other 13-year-olds in the vicinity were completely unamused.


One Comment
Hi Members,
Invitation to Endometriosis Patient Market Research Study
Datamonitor, a healthcare research firm in New York, is currently conducting research to help identify unmet needs of endometriosis treatment and also help drive improvements in endometriosis patient care.
We would like to invite endometriosis patients who have experience with either Lupron or Depo Provera/Depo SubQ Provera to participate in this market research study.
Through our research, we are seeking to understand patients’ perceptions of their treatment as well as responses to a profile of a potential new product.
We would like to invite any interested patients to participate in a brief online survey (requiring approx. 20-30 minutes) during the weeks of October 16th and October 23rd. Patients must meet the following criteria:
• Women aged 18-55 years
• Diagnosed with endometriosis within thelast 3 years
• Experience with either Lupron or Depo Provera/Depo-SubQ Provera
o OR patients who have not yet received any treatment for their endometriosis
Participating patients will receive $100.
If you meet the criteria outlined above and you are interested in participating in this study, please contact Datamonitor at the email address or telephone number below:
Shay McLean
smclean@datamonitor.com
212-652-5392
Regards
Nawaz