|
Post by cortney on Apr 15, 2013 22:35:50 GMT -5
You guys! The con organizer just wrote back saying I can have a refund. I am so relieved I'm sitting her sobbing! I am terribly disappointed that I gave up, but I'm realistic and realize that I just can't do it right now. This was going to be my first three day show, and I want that experience to happen when I'm truly ready for it. I need to be better prepared and maybe have a helper in case I can't make it the whole day.
|
|
|
Post by chibineko717 on Apr 15, 2013 23:17:40 GMT -5
Courtney, I'm sorry your feeling so bad right now. I'm glad you were able to get a refund for your table. I know that the con circuit can be tiring. My friends have invited me to a few this year, but I told them my body does not have enough stamina to walk around a convention in lolita for 3 days.
How long have you been taking the pills now? I think I would most likely quit the study if I got the placebo. The study doctor called and said I have a small cyst on my left ovary, but it is small enough for me to be in the study. Even while on continuous BC I could feel my endo coming back. When I had my period last week, I could feel the endo on my diaphragm and I'm getting nervous since it could spread to my lungs. I'm always having surgery since the endo seems to comeback within a year of excision. I really hope that I get the real drug and it helps me since I've run out of options.
|
|
|
Post by cortney on Apr 15, 2013 23:27:13 GMT -5
Thanks chibi. I don't know what it is about walking around on cement floors but it's the hardest thing. Just thinking about a convention or the mall or grocery store makes me hurt!
I hope you get the real pill. I've always wondered if I have endo on my diaphragm because I often get bad hiccups when having an endo flair. Do you get that? I don't really have trouble breathing though. That must be scary.
|
|
|
Post by nibletz on Apr 16, 2013 6:50:22 GMT -5
Glad u got a refund cortney I hope the pills help n I know how it is when just the thought of something causes pain I've been like that a few weeks now it's horrid bu I hope u all feel better soon xxxx
|
|
|
Post by willow82 on Apr 16, 2013 7:05:01 GMT -5
cortney just to put it out there. I've been on Lupron now for close to 4 months, I continued to have some pain and issues, however not as often or as bad before Lupron. So I went to a new gyn, a TRUE endo specialist and she dx'ed me with pelvic floor dysfunction secondary to endo, and potential adhesions from endo and surgery. I'm now in pelvic floor physical therapy, and take meds to relax those muscles.
Just saying Endo can leave big messes behind that aren't endo.
On the brain fog, progesterone replacement really helped clear that up for me, if that isn't allowed in the study that totally bites.
|
|
|
Post by cortney on Apr 17, 2013 10:45:01 GMT -5
Willow, I sometimes wonder if I don't have another undiagnosed issue happening. Wouldn't be surprised.
I'm off the pill now. Stopped taking it last night. Don't feel any different yet.
Just called my doctor's office to see if I can get back on Tylenol 3 instead of the Vicodin that the study required. Hopefully they won't give me a hard time with it. This is a new doctor who I've only seen once and he was reluctant to give me the Vicodin in the first place.
When I emailed to study nurse to tell her that I was thinking of stopping the study she was very supportive. She said to do what was right for me. That was very nice to hear.
|
|
|
Post by cortney on Apr 18, 2013 15:30:11 GMT -5
Just a couple days off the Violet Petal drug and I'm already back to my "normal" endo pain levels. A steady 4 or 5 on the pain scale with the occasional 7-8 after exerting myself.
But I'm also back to feeling more like myself. My old sex drive is back (even though I'm in too much pain for intercourse, at least I can give a BJ without hating every second of it!) and I'm feeling more creative and way less foggy.
So glad I stopped.
Had to call the doctor's office to see if I could get back on Tylenol 3 and they agreed and sent me an Rx.
I have my early termination appointment next week where I'll get all the tests from the beginning of the study. Pelvic with biopsy, transvaginal ultrasound, many blood tests, EKG, bone scan, and so on.
According to the contract I'll still be in the study to track my blood and bone density for another 6 months, but the nurse didn't say anything about that when I told her I was quitting.
|
|
|
Post by mirage16 on Jul 12, 2013 21:13:43 GMT -5
Well this is my first post on this board but I just thought I would share a little bit about my treatment and myself so far. I know this isn't the introduction board but the vast majority of what I've been looking at and dealing with has revolved around the Violet Petal Study. I am 28 and have been with my husband 10 years and the whole time we have been dealing with and fighting endometriosis to make a long story short I've had 3 surgeries, 9 months of Lupron, and numerous birth control methods in effort to combat endometriosis. The last laparoscopic surgery I had was in November of 2012 and I was told it could last me up to 7 years but unfortunately I ended up back at the GYNOs office in January with several pain. I was at the end of my rope, I felt like my body was fighting me at every turn it was ruining my marriage so when my doctor suggested the violet petal study. I have to admit it was very scary and my husband and I had many serious discussions before I decided it was time to put up or shut up. I had tried everything that was available to me so it was time I tried something out of the box, nothing ventured nothing gained, right. So I signed up to be a participate even though it was super scary.
At first it didn't sound like it was going to be to tough, some blood work, a couple bone density scans, some pelvic exams, a couple of endometrial biopsy and doing three months not using hormonal birth control (washout period). Well let me tell you it was the hardest most trying three months of my life. In the 10 years my husband and I have been together I've never been without some type of hormone birth control so it was trying on many levels. I was very emotional, my skin and hair were going crazy (oil hair and skin, acne galore) but what I wasn't prepared for was the almost crippling pain and just how much it was going to affect my daily life not just our sex life. There were so many days when I thought of just giving up and calling it quits, I didn't care if this drug would or could help nothing could be worth this especially since I was guaranteed to get the actual drug. In the end I managed to stay strong and I made it thru the 3 month clean out period and I could be randomized.
It’s been about 3 weeks since I first got the study drug and it is a double blind study so I have no idea if I actually have medicine or not but I’m feeling pretty good. I still have some pain and some bad days but nothing as bad as I was having. I have yet to spend a night curled up with a heating pad and tears streaming down my face, which had become normal during the washout period. I’ve actually found my sex drive has returned a lot, I’ve been known to begin a sexual encounter, which never happened during the washout period. Now I have noticed that I still have a moderate amount of pain after sex so I’ve started taking 800mg of ibuprofen before sex and it isn’t so much pain to deal with. As part of the study guidelines during any sexual experience we must use dual methods of non-hormonal birth control that can sometimes be a bit of downer since most non-hormonal birth control methods out sound of condoms aren’t effective immediately. Nothing is worse than finally feeling like being sexy and have fun with my husband then having to stop and but in some spermicide strip and waiting fifteen minutes. Outside of the odd sexually requirements there have only been two other issues I’ve noticed, I tend to run a little warmer than usual which is odd since I’ve always been very cold natured and if I don’t eat something shortly before or as I take the medicine then I tend to get a headache and become nauseous.
So whether or not I actually am receiving the drug or not I’m feeling better so ultimately that all that matters so me.
I just want to say thank you to all the ladies who post on this site, you all have given me countless hours of hope and support by sharing your stories and struggles. It is encouraging to know I’m not alone and I can hope to provide half as much support as y’all have given me
|
|
|
Post by chibineko717 on Jul 13, 2013 11:10:44 GMT -5
Welcome Mirage! I'm glad I now have someone who is in the study with me! I just got the study drug last week. I haven't noticed much of a change in my pain levels yet. The washout period was also pretty hard for me. I hate the blister packaging that the drug comes in. It is so big! I also have a hard time getting the meds out. It's such a pain to have to figure out a way to take the pack with me when I go out or visit family. They let you take Ibprofen! I'm only allowed to take naproxen or vicoden. It hasn't been helping much. I noticed I'm also running a bit warmer than usual. I'm usually always cold and can handle the recent heat waves with ease, but the heat can sometimes get to me now. Hopefully that means we got the real drug Head on over to the Introduce Yourselves thread so everyone can welcome you!
|
|
|
Post by mirage16 on Jul 14, 2013 20:07:45 GMT -5
My study phone says naproxen but I already had a prescription for 800mg ibuprofen so that is what they told me to take. Do you have an food restrictions for the medicine? I asked about that and they told me there weren't any but I find if I take the medicine on an empty stomach I get really nauseous and dizzy. I hope we are the lucky ones and actually have the medicine
|
|
|
Post by scully on Aug 30, 2013 3:16:33 GMT -5
Hello... First time posting... I am a participant in Violet Petal.. I wanted to share some of my background first and then a bit of my experiance with elagolix and my thoughts.. A hopefully abriviated background. I probably began experiancing pain and endo complications when i was 19. And even perhaps as early as 17, i am much much older now, but when i was that young i could ignore the pain and pretend i was lucky..at least whatever i was experiancing was mild in comparison to a woman with endo..little did i realize. My mother had endo and a full hysterectomy by the time i was 11, so i knew what endo was. I knew about it, i was terrified. I consoled muself with this thought each period "at least it isnt as bad as a woman with endo must suffer".. every year. By 2007, i began to suspect that maybe there wasnt something totally true to that for me... I had dismissed my own feelings of fatiuge as my being sedintary and lazy, or just a bad back..that i had a bad bed or something..thats why i had shooting pain in my back and legs.. Thats all it was. This is what i told people, this is what i had believed. It wasnt true, i was over active, walking and wall climbing for sport. This little lie couldnt account for just how bad things would get for me to have to realize...that i wasnt making it up..that it wasnt my imagination and that it could not possibly compare to the pain suffered by women with endo. I went to drs, chiropractors...obgyns..i had a pathological phobia of obgyns..i thought i just had vaginismus because i was a virgin and strongly religious. By the time i was 24, obgyns said to me there was litle chance i had to worry about having my mothers condition...i was "too young" and "it osnt strongly genetic".... Thats like at least its not as bad as... My experiances began to gwt worse...digestive severities, sleeping problems, strong fatiuge, it resulted in a lost job in 2008. Still that was not enough for me to understand...things got worse. I moved from my home state to a southern state and was met with very bad culture shock on top of what was happening with my endo. By 2011, i could not sleep without fear that i would wake up in excruciating pain for more than a week.. At this point you kinda know.. No amount of denial can get you past that. I wouldnt sleep at night, couldnt stay awake during the day, i tried to ignore it...but it was painfully obvious.
End of 2011, i was told to go into surgery or stop faking... I wasnt faking, but apperently the culture of that particular area...was not that accepting... I was devestated, not only did i learn that i had Stage 3 endo, but i learned there are still places where discrimination against women and minorities still existed. I was dumbfounded.
Despite having done superbly well academically, i was denied my degree and dismissed from the program,.. They tried to expel me from the university but my grades were beyond stellar. They even tried to have me arrested for being in physical pain in a public bus stop... Claming i was not a student nor enrolled amongst other things. I was both student and enrolled in classes.
Regardless, i had to move back to my home state due to financial realities. Heartbroken and disalusioned.
Elagolix
It brought me to the "opportunity called The Violet Petal Study. April of this year I quit taking the birth control proscribe to me, because it had the uncany ability to not only surpress all of my pain... But also drastically and dangerously raise my blood preasure and weight. I think i am a bit too young to walk around pre stroke waiting to happen. This left me with no real treatment options... I was terrified of Lupron, and its lovely potentoal towards osteoperosis. My mother was on lupron, as a result she now has osteopenia... Given i already had my mothers genetics for endometriosis, i wasnt going to chance fate for osteoperosis.
That left me with a few options. Do nothing. Hysterectomy. Get pregnant. Or try Elagolix.
Doing nothing, id wind up exactly as i was pre surgery in less than 2 years... Almost nothing was remover diring laproscopy because of the location being so close to my uretors.. Pee bag or pain... I guess pain is better than a pee bag.
Hysterectomy has all the fun side effects of lupron...only it is pretty much irreversable permanantly... I am kinda young for that at this point, and i have done enoughe reading to know that hysterectomies do not actually stop endometriosis (oddly enough the endo can have the ability to produce its own estogen well after ovaries an uterus have perished). so, that is not a viable option.
Getting pregnant is not a solution to a health problem! Ugh, why do they even suggest it?? 'nuef said.
That left me with expirimental Elagolix. For me Elagolix offered some strong advantages.. Both selfish and selfless.
I have a scientific mind, things like this excite me. I understand the mechanisms of the drug compound, and know that it is well studied pathway... Research has shown itself time and again what this class of drug is capable of... It is not an unknown as the concept of an "experiment " may suggest. The study is just generating the evidence required to make the drug successful. However, this is still a personal choice for others who are still fearful, and rightly so of chemical compuonds... Case in point birth control has long scared the. ... Out of me, even before i knew it jacked my blood preasure.
Outside of the science, there is the point that it strongly angers me that more than twenty years have elapsed between my mothers experiance and mine that the only "progress" they cared to make was move from laporotomy to laproscopy... Seriously?!?!? Science does not move that slowly unless no one cares.. As is obviously the case with womens health. Elagolix helps change that, and open up possible treatment options for people like me whom bc and lupron ect are not viable options.
And then there is this real selfish reason $$$ it is not much, but having lost everything that had mattered $$$ in the form of free diagnostic medical in the brief period before abolition of preexisting exclusion criteria for health insurance... Its invaluable, both on the money they give and the money not charged for making sure you are eligable for the study.
This brings me to now. I have been taking the double blind placebo for 4 weeks as of this wednesday. I do not compleatly know if i recieved the active compound... My cycle is set to start in less than two days. I am cranky as per usual but the ammount of days is less.. I am not feeling like there is an alien trying to claw out as desperatly as during the washout phase. That sucked. I wanted to cry so bad.
a few days after starting, i did have the feeling that there was a little alien desperatly trying to claw out, which for at that point in my cycle is unusual..those are usually the only few days of no pain.
All that wek i was very tired, but that could be because i really really hate obgyns. I really hate them, they have done little save not listen to me take my money and cause me pain...this study dr is no different. He is actually an ass... Who was working on me while taking the very painfull biopsy while having a broken arm! I dont know how stupid you have to be, but it made me understand a little bit of the psychology that must go through a womans head in abusive relationships...i apologized to the dr... Why?.. I have no idea, but i was shaking hurt and terrified, yet im the one who was apologizing like id done something wrong... I had a bruise on my abdomen and pain for a week.. I am Not looking forward to the final biopsy.. At least they changed the dr... So he doesnt do the ultrasounds nor diagnostics anymore.
The third week on, ive been a bit crabby, have gained a profound understanding of the night owl..insomnia... And strangely my facial skin is actually weirdly oily.. Acne like i just hit puberty!
Libido is slightly up....slightly up because I never really had much of one to begin with. Still a virgin, even though i have a very understanding fiance. He is like the only good thing in my life, which scares me a little... I was always so independent, it worries me a bit to be now so dependent and angered me a bit when the people who had caused me so much suffering said 'oh youll be fine..you have a good man wholl take care of you'.. Not sure how that is such a positive comfort to a woman who is supposed to be capable of holding down more career than she ever would have known she wanted! I am not saying i do not appreciate my fiance, i just do not appreciate that that was their way of saying not to worry! Like being a housewife is all i should aspire to.... It is not my forte, ill wither :-( i wish it was the sole saticefaction of my life.
Sorry for digressions, a lot of this is supper raw for me still...i have not healed.
I am hoping that this study reaches its goal and hits the market by 2016. I will be very happy for not only myself, but for whatever small progress it contributed to.
I wanted, also, to make a small note about the comment made regarding all the data generated specifically geared towards it stock potential. I am a bit of an odd ball, but that is one of my favorite things about Elagolix. It has generated such enthusiasim in possibilities amongst Wall Street as an investment op as well as a treatment op... The promise Elagolix holds is worthy of investment, that should be celebrated. :-)
I hope to keep you posted on how things are going for me and this trial.. Im not so great about things like that..i once was.. Maybe this drug will help me get back to that point, because the last several years have not been kind..
Endometriosis is the devil that snuffed out my dreams, at least the good thing is is that there are plenty of six legged crawllies that call me to discover them just waiting for me to have the energy to pull out my insect net and go run in the feild... Unless there is snow on the ground and its below-20! a sad me this would make <3 bugs! They are my greatest joy.
See you next time, my one month checkin is next week thursday!
-Scully
If i could leave with a positive because that is what we are supposed to do, right? My experiances have helped make, e only a little less nieve, these are hard lessons for those of us on the ASD spectrum. Maybe Ill be more aware next time.
|
|
|
Post by chibineko717 on Aug 30, 2013 14:26:49 GMT -5
Welcome, Scully!
Thanks for sharing your story. I'm still a virgin too so it is really weird for me to constantly have exams and sex related questions since I don't really think about that. I'm thankful that I am still a virgin while on this study since the dual contraceptives seem like a very big hassle.
I've very angry what your school did. Although endo is not officially considered a disability, most schools should work around absences since it is documented by a doctor. It took me a little longer than planned for me to finish my degree since I had 2 surgeries during 2 different finals weeks. I was placed on suspension since some of my professors did not give me an incomplete in time. I went to 2 different deans and the school chancellor to be able to make up the work I missed.
I'm currently into my 3rd month of the drug. I noticed my period is lighter the first few days and seems drawn out more. The second day of my period used to be my heaviest, but now I'm not bleeding a lot until the fourth day. I have been experiencing lung/diaphragm pain on my right side that has me very worried right now. The clinic I'm doing the study through have been very helpful and caring. I got a lung x-ray since they asked the study if that was possible due to the endo being on my diaphragm last year. I'm waiting for the results of that right now.
I don't know if I'm on the real drug yet. I think I'll have a good idea by next month. The study said that after the first six months, there is an extension study where you are guaranteed the real drug. They will test two different doses. I hope I can make it to that study.
Go over to the "Introduce Yourself" thread so everyone can welcome you!
|
|
|
Post by mirage16 on May 2, 2014 14:43:20 GMT -5
Hey everyone!
Sorry it has been such a long time since I've updated everyone about my results with the study. I have finished the first 6 months of the trial and I believe I was lucky enough to receive the actual drug. After taking it for two months I no longer had a period as a result I haven't had one since August of 2013. It was a slow process but I began to feel better and I got better everyday. I enjoyed the experience so much and I felt so much better that I opted to do the six month extension of the study. I had an appointment this morning and found out that I on my last months worth of medicine. It was all I could do not to cry. I never knew how bad I felt until I started to feel better. I would give anything for them to let me continue the study. I even offered not to take the money or act like I had a twin, but they weren't buying it.
It bothers me a little though that I have to wait 3 months after I finish the medicine to begin some type of hormonal birth control. I feel like that might set me back. I'm going to try and get an appointment with my gyno to try and get an appointment the second my 3 months are over.
|
|