Last time they went in it was on my intestines, bladder, one ovary, and scar tissue has everything cemented together... I can't stand up fast after sitting!!! It kills me!!! And that never goes away. The BAD pain only lasts a couple weeks a month...
Posted on my facebook!!! I have it too . Its horrible and more people need to know about it and what causes it! Toxins are in most of our food, vaccines, air, water...and most girls are told like I was "deal with it" "its normal"... Yeah right!!! I lived with it all my life and finally got diagnosed during surgery in 1999. Had surgery twice and it just keeps coming back worse. I might have to get a hysterectomy.It helps to know I'm not alone!!!
great job on the video! I posted this on my FB page, many of my friends and family don't entirely understand what I was going through and why I had to resort to a hysterectomy in January. Your video is great at describing what we have gone through. There is something healing in Dr Fraser's comments, thank you for that as well.
@kirsten62975 - Thanks for sharing this! And yeah, when I found Dr. Fraser's lecture, it blew me away. I talked to my GYN at UCSF and she is on board with his findings. Let's hope that all doctors get on board with that, and begin to treat us more humanely and offer more pain management options to us!
A question - did the hysterectomy rid you of the pain? Where was your endo located before you got the hysterectomy? Doctors are still telling me I should consider hysterectomy.
@stephlwe the short answer is yes. The constant "grinding" is definately gone, it was gone as soon as I can remember post op. A couple other issues emerged in settling the hormones, but they have been managed. A coworked commented this week that she can *see* how much better I feel, I walk upright all the time.
Over the years (5 laps from 18 to 34) it has been on my bowels, my bladder, and I had endometriomas twice. By the time I had the hyster, my ovaries were completely obliterated.
I was just diagnosed a few days ago at childrens hospital Boston. I've been suffering with pain for 3 years and they finally found whats wrong. This is a terrible thing we have to deal with. I had the laperscopic surgery done and its been growing in several places..this is a great video explaining what endo is. I hope someday there's more options out there. I'm glad I'm not alone with this. We're all pretty tough dealing with this.
@lolasims123 - I am so glad you were able to get a diagnosis after only 3 years, as it usually takes 10 years before doctors believe a woman's pain. I can't wait until women don't have to wait at all to be believed and diagnosed.
You are truly not alone! We all need to remember that although we go through the physical pain alone, we still have each other to network with - women who believe you, understand you, and can ease the emotional trauma of living with endometriosis.
Thank you so much for making this vid Steph! Ya know, I was one of those women suffering at the hands of ill-informed doctors. Now that I've excaped their grips... I'm lost again.
Exceptional video, One day we will have better treatments and one day a cure. Doctors knowing the disease off the bat and not seeing us a drug seekers or crazies.
I hate to hear that!
jhk11774 1 year ago
Last time they went in it was on my intestines, bladder, one ovary, and scar tissue has everything cemented together... I can't stand up fast after sitting!!! It kills me!!! And that never goes away. The BAD pain only lasts a couple weeks a month...
jhk11774 1 year ago
Posted on my facebook!!! I have it too . Its horrible and more people need to know about it and what causes it! Toxins are in most of our food, vaccines, air, water...and most girls are told like I was "deal with it" "its normal"... Yeah right!!! I lived with it all my life and finally got diagnosed during surgery in 1999. Had surgery twice and it just keeps coming back worse. I might have to get a hysterectomy.It helps to know I'm not alone!!!
jhk11774 1 year ago
@jhk11774 - Thanks for posting this to facebook! I need to do another video update, soon. I'm facing a second surgery. :/
stephlwe 1 year ago
great job on the video! I posted this on my FB page, many of my friends and family don't entirely understand what I was going through and why I had to resort to a hysterectomy in January. Your video is great at describing what we have gone through. There is something healing in Dr Fraser's comments, thank you for that as well.
kirsten62975 1 year ago
@kirsten62975 - Thanks for sharing this! And yeah, when I found Dr. Fraser's lecture, it blew me away. I talked to my GYN at UCSF and she is on board with his findings. Let's hope that all doctors get on board with that, and begin to treat us more humanely and offer more pain management options to us!
A question - did the hysterectomy rid you of the pain? Where was your endo located before you got the hysterectomy? Doctors are still telling me I should consider hysterectomy.
stephlwe 1 year ago
@stephlwe the short answer is yes. The constant "grinding" is definately gone, it was gone as soon as I can remember post op. A couple other issues emerged in settling the hormones, but they have been managed. A coworked commented this week that she can *see* how much better I feel, I walk upright all the time.
Over the years (5 laps from 18 to 34) it has been on my bowels, my bladder, and I had endometriomas twice. By the time I had the hyster, my ovaries were completely obliterated.
kirsten62975 1 year ago
I was just diagnosed a few days ago at childrens hospital Boston. I've been suffering with pain for 3 years and they finally found whats wrong. This is a terrible thing we have to deal with. I had the laperscopic surgery done and its been growing in several places..this is a great video explaining what endo is. I hope someday there's more options out there. I'm glad I'm not alone with this. We're all pretty tough dealing with this.
lolasims123 1 year ago
@lolasims123, @TheUrbanhippy, @duckykhan - you are welcome, I do this for us. We are warrior women! Stay strong, my sisters!
stephlwe 1 year ago
@lolasims123 - I am so glad you were able to get a diagnosis after only 3 years, as it usually takes 10 years before doctors believe a woman's pain. I can't wait until women don't have to wait at all to be believed and diagnosed.
You are truly not alone! We all need to remember that although we go through the physical pain alone, we still have each other to network with - women who believe you, understand you, and can ease the emotional trauma of living with endometriosis.
stephlwe 1 year ago
Thank you so much for making this vid Steph! Ya know, I was one of those women suffering at the hands of ill-informed doctors. Now that I've excaped their grips... I'm lost again.
TheUrbanhippy 1 year ago
Exceptional video, One day we will have better treatments and one day a cure. Doctors knowing the disease off the bat and not seeing us a drug seekers or crazies.
duckykhan 1 year ago