I'm sitting here, dying of cramps, and I just wondered how many of us here have it?  After years of being told I was crazy by an OB/GYN, another doctor found endometriosis on my uterus during my c-section.  He removed it, and when it seemed to come back 4 months later, I did a 6 month round of Lupron.  It stayed away for a while, and it IS better over-all, but there are still days that I'd love nothing more than to curl up with a vat of BC powder and a heating pad - and proceed to die. 

Its suspected that I also have adenomyosis, but the insurance refused to pay for a partial hysterectomy in order to find out because I was too young.  Yeah, sure.  I'm young, but I'd gladly give up my uterus to not have to endure this month after month.  I'll be 30 on 9-11 and I've been dealing with this almost monthly since I was TWELVE.    Its been old for a long time now!!  Enough already!

A friend of mine suspected for YEARS that she had it. Her doctors basically kept telling her she was being a baby. Just not in so many words ya know. She finally found a doctor that did a laporoscopy(sp). She had fibroids ALL OVER her insides. Idiot doctors. I suffered for years with horrible periods but no endo. I mean HORRIBLE. Won't go into details to protect our male members. After Jenna was born I started hemorraging uncontrollably. D&C's didn't stop it so they had to do a thermal ablation. Wow. A whole different world. It essentially kills the lining of the uterus. Is that an option for endo?

I have it and I had it lasered when I was about 20, then I have been on the pill forever.  The pill really does help.   That is what I would suggest if you are not already on it.

Posted By susannasmommy on 08/28/2008 9:52 PM
The pill and I do NOT get along. It either makes me totally crazy, or the hormones just aren't strong enough, and um, weird things happen all month. I think I've tried them all, except for a few new ones that have come out. They've all just made it worse in the end.
The next time I go to the OB, I'm going to push for something. The thermal ablation sounds cool, but I think my only option that will work long term is to remove my uterus, which no one will do. They can't prove I have adenomyosis until they remove it and biopsy it in little slivers. That sounds ridiculous, LOL.
Lupron was a god-send (other than the hot flashes, awful mood swings and joint achiness), but its just over $1000 a shot and the insurance we've got now won't cover it And I'd need at least 6 months of it. So, I'm out of luck on that!! I did take a BC pill while on Lupron to help with the symptoms, and it was the only time I've ever taken birth control and it did what it was supposed to do for me.
I've had cramps so bad that I've passed out, and to whoever it was who throws up, I feel your pain on that one. My pain tolerance is honestly through the roof; the cramps that I consider minor keep normal people in bed for the day, but there are times I just can't take it. I had a doctor evaluate me once while I was cramping, and he said that everything (not just my fallopian tubes) was cramping up and contracting like I was in hard labor.
I think what REALLY frustrates me in the end is that it just wears me slap out. If I get a good round of cramps, I can sleep for 24 hours, no problem...but I've got a kid to take care of, and that's impossible!!
I feel horrible the week before, the week of, and then it takes me a week or 2 to recover from just being exhausted. I'm getting one good week a month. I'm about to pull my hair out!!
Lisabeth, my sister has PCOS. She had a cyst rupture once and she thought for sure she was dying! And I'm actually jealous of her 2 or 3 cycles a year (though I don't want PCOS, either!!). I would kill for that aspect of the disease. You know, she suffers from migranes. She's not on the pill or anything (she's pregnant) but I wonder if PCOS has anything to do with it?

Tabitha, Have you tried Seasonal?  It's a pill that you stay on for 3 months in a row...so you only have 4 period's a year.  I have a sister who had endometriosis and hormone induced Migraines.  She stays on her pills without ever taking a week off.  This helps with her migraines and cramps tremendously.  I know you said you tried it all, but maybe there are some new ones out there that could help.  The pill probably makes me crazy too, but I've been on it so long....I've just accepted that I'm crazy! 

The uterine ablation I had several years ago was the best thing that ever happened to me! 

OMG Tabitha. What you describe is EXACTLY what I used to go through EVERY month since I was 12. It was God awful. Pills only made it worse for me too. Same with Depo or any other kind of hormone therapy. Make an appt with your OB to discuss thermal ablation. For me if that didn't work a hysto was the next step. I am SO glad I did it.