So in case anyone reading this has moderate-severe endometriosis like me, my sister came across a clinical trial for new medication related to endometriosis pain and other symptoms: Violet Petal Study (www.VioletPetalStudy.com)
It really is a nice name for a clinical trial. Maybe from now on I'll say I have the "Violet Petal" disease. (Yea, maybe not). It sounded intriguing so I filled out the questionnaire and I think I qualify so they will probably contact me. I'm pretty much up for any new suggestions because I feel ALMOST better... just stuck with a pain that will not go away and it is inhibiting me from doing SOO many daily things, primarily having a full-time job. So I'm open. Then I saw that all participants will need to stop taking birth control hormones or hormones of any kind, so I thought it's probably a hormone treatment, which would not be surprising. Still open. But then I saw that 3 out of 7 patients will receive a placebo... meaning we will have to stop our treatment and receive NOTHING in return. Yeah... not open to that. My understanding is the hormones that mimic pregnancy or menopause in patients with endometriosis are what stop the production of new edometrial cells outside of the endometrium. I've been told I will need to be on hormones/birth control my life... or I guess until I hit real menopause. So stopping those hormones would mean a really high likelihood of increased pain, increased endometriosis, and having surgery again to remove the new areas. Yeah, no thank you. They had me until "placebo."
BUT I know this disease presents differently in all different women, so this may be a great option for some women. And if it works, it may be something that can help all of us, which would be awesome, so I'm putting it out there! It's even nice to hear that treatments are being worked on right now because there has got to be a better way to treat this disease. Heck, I hope it's a wonder drug and they call it the Violet Petal hormone or something because that's just a lot of pretty imagery. Good luck to those conducting the trial.
I'm with you about not joining the clinical trial. They always do half placebos...Not good if you give up your other meds...be nice to try if they would promise you would get med...but unlikely that would happen.
ReplyDelete