Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Solstice Study

Jessye
Jessye
So, I have applied for that Violet Petal study twice now. Well, a lady called me the other day about it & said that even though there is no one in my area currently conducting that study, there is someone in my area conducting the Solstice Study. I am hoping they give me a call...it would be nice to say I was part of at least helping to find a cure for this awful disease. I guess my question to everyone is what are your thoughts on Endo related studies? Would you guys participate if given the chance? It is a 20 month study, and you may not even get the drug. You can still take pain killers for Endo, but that is it. You have to halt all other Endo related treatment, and I am assuming you may have no surgery or anything. Also, I realize I would be running the risk of having a lot of new Endo growth if I was to receive the placebo pill. I guess I am trying to figure out if it is worth it to go ahead and do the study. Thoughts?? Anything would be super helpful!!

Side note, I hope everyone is doing alright lately!!!
Christine1976
Christine1976
I've done a couple studies.....and you can always stop them at any time....so if it's not working for you, or you need surgery, or just want to stop you can.
hotchocolate
hotchocolate
I was "invited" to participate. While I can change my mind at any time, I turned it down for the reasons you mentioned. You could get the placebo. I would have to do a 2-month washout period from any hormones, and then I might not even get the drug...or I might get the super-high dose. I think I would consider it if I knew I could get the middle dose.

I also read all the details and you have to take it at a certain time in the morning and then not eat/lie down for a certain time period. I know this probably doesn't bother many people, but I have to eat right when I get up and then lie down/rest for a bit, or my stomach gets funny. It would just be another concern/thing to deal with.
deleted_user
deleted_user
I think they are both drug trials for an oral form of lupron from what I understand. Something to consider.
Jessye
Jessye
Good to know I can stop them whenever I want, but how does that work with my doctor? Are most docs understanding if you want to try to participate in a trial? & I know I would have to keep a daily diary of symptoms, etc., which is not a problem, but I am worried that I will actually keep on top of it like I am supposed to..

vansanturtle...lupron? Oh god. I sure hope it isn't like that awful drug. I had such a hard time with it! I am glad you mentioned that. At least now I can ask if it is similar to Lupron. If it is I will not go near it! I had the worst symptoms when I was on Lupron. The only thing I have read about this drug so far is it is meant to stop or slow the production of estrogen. I guess that is a red flag that it will be similar. I think up until this point I was just excited about the whole idea. Thanks everyone for the input-it is a huge help in weighing my decision!
hotchocolate
hotchocolate
Yep, it is basically lupron in pill form. The benefit is since it is in pill form, you can stop at any time and it is not in your system like a shot is. I was also told I didn't have to enter into the diary every day. There was a minimum number of entries within a certain time period.
Christine1976
Christine1976
My Dr is the one I did the studies through so I don't know how you'd work it if it through someone else.