Re: CHRONICPAIN: lifelong severe primary dysmenorrhea (i.e., no endo)
From: AmyAngel (anonymous@obgyn.net)
Thu, 29 May 2008 04:07:14 -0500 (CDT)
Hi Carolyn,
I can't offer much in the way of suggestions of what's wrong with you,
or directions to take, but I just wanted to post to say that I've been
going through a rather similar situation, just over less years.
I'm 24, and although I had dysmenorrhea right from the start of my
periods (at 12), I've had increasing and changing pain since just before
I was 16. I too have had a laparoscopy (at 16) which didn't reveal any
endo. I've tried oc's, however they failed to have any effect on the
pain. I too have had pain during the month outside of periods, and I
understand what you mean about having to lie down in public until you
can walk again...
You're lucky though to have a doctor who wants to help you....because
I'm young, I've had trouble getting any doctor to take me seriously.
I hope that someone else can post an answer that helps you (and perhaps
me as well!) or that you can get some relief soon!!
At Sat, 17 May 2008, carolyn johnson wrote:
>
>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....
--
AmyAngel
Social Work student with multiple medical conditions
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