Wow!! that's pretty messed up!!!! I just had a major excision surgery two weeks ago, and told myself that this was the last time i would do this... 10th surgery... no reporductive organs left, so... i don't even know what to think about it anymore.... ive had this 23 years.... one of the worst cases, and longest....depressing

Good article. Thanks.
One of the things that popped out at me was "Endometriosis, medically speaking, is a benign form of cancer..." I remember when my aunt took me to the RE, and she asked the Dr. to describe endo to her. The Dr. said something like, its cancer that doesn't kill you, it can be as painful, or more, as exhausting, and make you as sick as people with stage IV cancers (like your niece). Her jaw dropped. That was it. No more BS with my disease, no more non believers. I think when endo is explained with the "C" word, it lets people know how serious it is.

My aunt has it in her lungs. She had a stroke from complications from endo, Im not completely clear on it all to medically describe it, But it was scary. Shes only in her 40's, and she almost died. I cant be around her, its depressing and scares me.

I am to have a X ray of my chest as well, and I have not gotten to it yet! But, endo can grow anywhere, and I imagine, like the article said, if it grows somewhere like the heart, brain, or lungs, and other places, it, of course can be deadly.

Thanks for the article!

I've always been bothered by the fact endo isn't treated more like a cancer. I've asked drs about it a lot and the only thing they can tell me is that the difference between endo and cancer is that cancer is a mutated cell and endo is a normal cell in the wrong place. Still, it's always sounded a lot like cancer to me.

This article actually bothered me quite a bit, in 2011 I had surgery where the "scar tissue" had built itself so remarkably that it simply looked as if I was born with no right ovary. My dr stopped my surgery and checked my medical records and with my family to see if I had it removed. The scar tissue had basically just re-shaped my entire abdominal cavity so that the right ovary was buried under so much of it that it looked like it wasn't there (I have image of this and it's rather disturbing).

Later that year I had gallbladder surgery, and my surgeon took pictures of other organs knowing I had problems in the past and it was clear where the scar tissue was starting to consume my ovaries again, both this time.

In 2012 I had surgery again and the surgeon said that the scar tissue had formed almost a film like substance that was coating my ovaries and would probably continue to do so.

Wow thats crazy!!! Always thought the doctors never seemed too phased by endo like its nothing..I actually yelled and cried at the doctor the other night for acting like its nothing..

During my ultrasound at Dr Dulemba's office they showed me places where the Endo had created its own blood supply. I just kept thinking (hint: Frankenstein) "It's Alive!."

My mother was with me for that visit. She finally realized there is no cure and that it was indeed a serious condition. The doctor told her the same thing. "It's like cancer. It doesn't kill you but it takes your ability to live."

Sadly, we don't know enough about Endo. Mostly articles are written by women who suffer it, which is a needed source of information. But there are just not enough scientists examing this condition. I feel like we're still in the dark ages of medicine, especially when it comes to Endo.