Solstice Study

"The Pain You Feel Is Real, Even If You Can't See It."

That is the slogan for a commercial I saw on Tuesday, while my mom was sleeping and getting her chemo meds. I was watching tv when a commercial came on about endometriosis.  The fact that there is any commercial made me smile.  This one is about a new clinical trial but at least it gives a name to a disease people need more information about and also identified symptoms, which I think is greatly important for general knowledge.  The study is for the Solstice Study. If anyone is interested, click HERE. 

As I have stated before, I would LOVE for these studies to be successful.  I am so happy that they are available and I would love to sign up, but I am not willing to take the 50% chance of receiving a placebo, while still having to stop all hormone treatment.  I hope there are women who are at a point where they are able to participate because I think research is incredibly important for endometriosis.  I still can't wrap my head around the fact that this disease can only be concretely diagnosed via surgery.  It just seems crazy.  If I had an unlimited supply of money, my first priority would be better diagnostic tools and my second would be what this study is trying to do... find a better way to treat pain.  So I say to everyone involved in this study: GOOD LUCK!!! 

Clinical Trial

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.