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CHRONICPAIN: lifelong severe primary dysmenorrhea (i.e., no endo)From: carolyn johnson (anonymous@obgyn.net)Sat May 17 09:51:39 2008
hello: my situation seems to be unusual but i know that there must be others out there like me! I am 47 years old, and have had disabling primary dysmenorrhea since getting my period at thirteen. never given birth, have had a laparoscopy (around age 41) which ruled out endo. in terms of bleeding, my periods have never been heavy. as a teenager, i was taken to the emergency room a couple of times with the pain before my family and i understood that it was menstrual cramps, and the doctor prescribed oc's. thankfully, this helped tremendously for most of my young adulthood. in my early 30's, however, those beneficial side effects ended -- my dysmenorrhea came roaring back and grew steadily worse, to the point where i was in bed several days a month and even had uterine cramping during the month without bleeding. this cramping was very intense, and i have been forced to, for example, lie down in public (on park benches, etc) until i could walk again. NSAIDS are not even slightly effective in lessening the pain of these contractions. in particular, this between-period cramping could be brought on by exercise. (i'm an active person, but had to give up running because a few minutes into a run, i would be on the ground in pain.) my doctor has begun to try a couple of different treatments for me since i was thinking that surgery of some kind was my only recourse. lupron for a year completely stopped my periods and the pain -- that was the very best year i had had in a long time! but my doctor felt concerned about long-term use of lupron, even with add-back. currently i am taking aygestin alone (5 mg per day). This is just as effective as the lupron was (interesting since the combined oc's aren't effective for my cramping). i've taken it for about 6 months. So there's my story! my doctor says that i am the only patient like this whom she has seen -- i suppose there is something idiosyncratically strange about my reproductive system. Questions: any thoughts about what's going on with me? and is there any harm in my continuing to take the aygestin long-term, given that it is working? if so, any suggestions as to what direction to go in next? great thanks for your consideration....
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