[QUOTE=Laurierace;5525630]
Fingers crossed that this is the answer you were looking for.[/QUOTE]
I haven’t had to take any pain meds at all today. It’s amazing how fast I can get back to normal when the endo backs off the nerve. The good news is this isn’t a magic trick like the Topamax. I just hope it stays gone after the treatment stops in 6 months.
Even better! Topamax is the devil in pill form.
[QUOTE=Laurierace;5527435]
Even better! Topamax is the devil in pill form.[/QUOTE]
I can’t say I care for it. I’m trying to get off of it now that the Lupron is working, but I can’t just stop taking them. I think my favorite side effect is tingling tongue - where it feels like there is a hair in my mouth. Lovely.
Just another update on Lupron. My pain is completely gone. A year ago today, was my first visit to the ER for what turned out to be Endo.
I know it’s not right for a lot of of people, but it has definitely worked for me. So far, I have not had any of the evil side effects, but they may just not have shown up yet.
But, I also think a hysterectomy is in my future. I doubt this stuff will stay gone after I stop taking Lupron.
I’m trying to build up the nerve to go sit on my horse today.
[QUOTE=GotGait;5537879]
Just another update on Lupron. My pain is completely gone. A year ago today, was my first visit to the ER for what turned out to be Endo.
I know it’s not right for a lot of of people, but it has definitely worked for me. So far, I have not had any of the evil side effects, but they may just not have shown up yet.
But, I also think a hysterectomy is in my future. I doubt this stuff will stay gone after I stop taking Lupron.
I’m trying to build up the nerve to go sit on my horse today.[/QUOTE]
Congrats on the “good news” Now go out and get on that pony!
Wow. There has been some serious action here since I’ve last checked in and all I can say is that I’m sorry. I’ve been in that sort of pain with the migraines (the sort where you tell them that if they can’t fix it you will permanently fix yourself) and yes, you do quickly realize that you need to be very careful who hears that coming out of your mouth. Fortunately I have a DH who advocates for me very well. Without him around…well, a padded room awaits 
OT, but since I asked the question here originally I thought I’d give the brief but excellent update. I’ve been on Topamax since March 10 and have not had one. single. solitary. whisper. of anything that even thought of becoming a migraine, and I was climbing back up to 2-3 per week. I have some mild paresthesia in my fingers and toes (mainly the outer ones…think 4th/5th fingers and 4th/5th toes) that is more curious than bothersome, and sodas taste bad. Crazy metallic. Well, they are calorie laden sugar minefields anyway, and I rarely had more than one or two in an entire week. I might be eating slightly less (real bummer, huh?) and I’m not having any issues with fatigue, and I would definitely notice. So to say I am THRILLED would be an understatement.
Back on-topic - I hope the insurance companies and physicians involved in your endo cases pull their collective heads out of their asses and help you.
[QUOTE=asb_own_me;5538470]
Wow. There has been some serious action here since I’ve last checked in and all I can say is that I’m sorry. I’ve been in that sort of pain with the migraines (the sort where you tell them that if they can’t fix it you will permanently fix yourself) and yes, you do quickly realize that you need to be very careful who hears that coming out of your mouth. Fortunately I have a DH who advocates for me very well. Without him around…well, a padded room awaits
OT, but since I asked the question here originally I thought I’d give the brief but excellent update. I’ve been on Topamax since March 10 and have not had one. single. solitary. whisper. of anything that even thought of becoming a migraine, and I was climbing back up to 2-3 per week. I have some mild paresthesia in my fingers and toes (mainly the outer ones…think 4th/5th fingers and 4th/5th toes) that is more curious than bothersome, and sodas taste bad. Crazy metallic. Well, they are calorie laden sugar minefields anyway, and I rarely had more than one or two in an entire week. I might be eating slightly less (real bummer, huh?) and I’m not having any issues with fatigue, and I would definitely notice. So to say I am THRILLED would be an understatement.
Back on-topic - I hope the insurance companies and physicians involved in your endo cases pull their collective heads out of their asses and help you.[/QUOTE]
Yeah, Topamax imparts such a delightful taste to everything. Glad it’s working for you. I’m trying to get off of it and it’s slow going - can’t just quit, of course.
I haven’t noticed an odd taste to anything besides soda. Lucky I guess. Hope you find something…anything…that makes things bearable for you 
[QUOTE=asb_own_me;5539762]
I haven’t noticed an odd taste to anything besides soda. Lucky I guess. Hope you find something…anything…that makes things bearable for you :)[/QUOTE]
Oh, I’m almost 100% now. I may be the only person in the world who LOVES Lupron. I’ve had 0 side effects. I honestly don’t get it, but whatever, it works! :winkgrin:
GREAT news
Well, the Lupron ended up not working so great the second time around and now I am post-op from surgery #5.
The second shot caused a flare up that went on for almost 3 weeks. I tried to keep working, but the pain was so bad I couldn’t move without crying. I stopped eating, my blood sugar dropped, I had trouble breathing and my hands and feet went numb. I honestly thought it was going to kill me.
I ended up having my remaining ovary removed. My doc was only able to find one spot of Endo (on the wrong side) and said the rest must be so deep, he couldn’t find it. I figured it would be all over me, but he said it wasn’t. Where ever it is is just in a very bad place. Even during the few times we were able to control it, I always had a spot of pain near that ovary. He’s going to biopsy it, and I hope that it gives us some answers.
I’m feeling better already apart from the “holes”. I just can’t wait to ride again.
If anyone else is suffering from this stuff, I’m happy to be a shoulder to cry on. It’s been hard for me because no one I know personally understands what I’m going through - or can fathom the amount of pain. Some of them think it’s like a hang nail or a “cramp”.
I started carrying this pain chart around with me: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html
Ouch. I hope this does the trick and you can put it behind you now.
I have great empathy for you guys. Having had a few biopsys myself, and ultrasounds, even that just sucks.
The reason I am posting though is an experience I had in graduate school in the mid-90s. I took a cultural studies class on the theme of “the personal is political” and one of the more common personal problems in the class was endometriosis (we all had to pick a personal problem and write about it in terms of how it was viewed by society). The frustration expressed by three of the class members on this issue was eye-opening to share. They all talked about how the medical community didn’t believe in the amount of pain they were in, and in the case of one girl, the shame she felt because some doctors believed it was caused by sexual behavior!
So ladies, you are not alone in your frustration in the manner in which the medical community treats this disorder. Good luck!
Lots of anorexic girls in the class, too, by the way.
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