QuestionI've had severe, debilitating painful periods since I was 11 years old with vomiting, excruciating pelvic pain, burning hot lower back pain that shoots down my butt and legs, migraines and simultaneous vomiting and loss of bowel control. This happens on the first day of my period. During these "attacks", which always happen in the middle of the night on the first day of my period, I also have what I believe are seizures. I see a visual aura or disturbance, as well as audio auras and then the room goes black and I lose consciousness for a few seconds. Afterwards, my body goes into muscle spasms and I vomit off and on for a few hours, all the while in excruciating pelvic and lower back and leg pain. I go to sleep and when I wake up I am fine except for the pain. I recently read that endometrial tissue can travel (in rare cases) to the brain and cause catamenial seizures. There is barely any information about this either on the internet or in books. The only time this didn't happen to me was when I was on the pill from age 27 - 39. I went off the pill at 39 to try to get pregnant (I have no children). I'm now 47 and over the last 8 years these "attacks" on night #1 of my period have gone from a couple times a year to every single month. My PCP and gyno both say that it is diverticulitis (I have pain in the left ovary area) and they've been very dismissive. Except, my PCP has told me several times to go on the Depo Provera shot to stop my period since I'm so close to menopause. I've heard bad things about Depo. I have two questions: one, where can I find more information on endometriosis in the brain or CNS is your opinion of Depo Provera as treatment? Thank you!
AnswerHi Kathy,
Boy, if you aren't the spitting image of my life with endo! I suffered from all of the above, I even ruptured my stomach twice due to vomiting. I have the aura thing, which is associated with migraines. My gyno at the time, was a wonderful doctor and told me that the reason I felt the way I did after these episodes, was that the severe pain, vomiting and total loss of time during...was a result of my body going into actual shock.
I have not read anything on the brain or CNS...thats not to say it is not a new discovery in the endo field. The best website to go to for an abundance of info is the Endo Research Center-(just type in browser). They can help you with questions and even suggest a specialist in your area.
Now, about the Depo Provera...I hear bad things about this one, too. But the flip side, is it does help.
I'd find a specialist (high risk/fertility) endo doctor before I made that decision.
I hope I've helped...at least you know there is one other person that has been sick as a dog most of her adult life! Still doesn't make it any easier, I know.
Best of luck, take care of yourself.
Happy Holidays!
Martha
