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Post by cortney on Feb 26, 2013 16:28:48 GMT -5
That's fantastic news chibi!
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Post by cortney on Mar 2, 2013 12:21:02 GMT -5
Is this my period? I've never asked that before because I always KNOW when it's coming. Today I woke up to extremely mild cramps (Was that a cramp???) and a tinge of pink. I love these pills!
Also I have the flu this week and normally all the sneezing and coughing would have aggravated my endo making the flu even worse with pain. But not this time! This time the endo is nowhere to be found. Brilliant!
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Post by nibletz on Mar 2, 2013 16:07:48 GMT -5
good to hear cortney!!!
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Post by cortney on Mar 5, 2013 0:14:22 GMT -5
Today I"m having a super duper bad endo pain day and it's hitting me like a ton of bricks because it's not an everyday thing since I started taking this pill. I'm so bloated I can only wear my jammy slacks. Boo hoo!
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Post by nibletz on Mar 5, 2013 8:45:24 GMT -5
Aww hugs
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Post by cortney on Mar 5, 2013 13:48:25 GMT -5
Ok so I have a possibly paranoid question for Lupron people. My question is, once the drug starts working and you have less pain, do you still have pockets of really bad pain days sometimes? I ask because I'm on Elagolix for a month and have been doing very well on it. Like, NO pain for almost a month! Then I get my new box of monthly pills from the doc and less than a week later and I'm in intense pain again. The paranoid part is that I'm wondering if she accidentally gave me the wrong pills and I have the placebo instead of the real drug. Does that make any sense?
I'm asking Lupron people because that's the only drug similar to Elagolix that might experience this.
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Post by hellsbells on Mar 5, 2013 14:16:33 GMT -5
Cortney can you please post your Lupron questions in the Lurpon thread please so we don't get the threads mixed up, thanks
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Post by willow82 on Mar 5, 2013 17:45:43 GMT -5
Hi, this really is a question for folks on Elagolix, and not a specific Lupron issue.
It's a hard comparison to make Cortney since Lupron actually can take several months to work properly. It wasn't until halfway through my second shot that all the endo pain was gone. However, I am betting I have adhesions since I am still have severe issues post bowel movement.
This may be a question for your nurse, also where in your cycle should you be? Also it could be unrelated pain. This is definitely a place where Lupron and Elagolix are going to be different since there is no flare, and is sounds like the way GNrH is regulated is very different.
I will say I did have some additional pain sometimes when my shot started working based on stress, how much moving around I was doing, if I ate poorly, etc. That's getting better day by day since my body continues to recover.
Gotta say again I am SOOOO excited about Elagolix,
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Post by cortney on Mar 6, 2013 21:04:28 GMT -5
I'm finding as I look at other threads on this board that It's tough being one of the only people on this drug. I would love to have more people to compare notes with! I guess I should stop trying to compare it to Lupron because who really knows what the differences are going to be.
I'm really not sure about my cycle because my period was missing and I never felt the normal ovulation pains and spotting. I suppose that this pain I'm having now could be my period, just minus the blood. I also thought that, with my possibly shrinking adhesions, things could be separating in there which could cause pain.
Who knows! The nurse isn't really a ton of help because she doesn't know either. I guess that's just one of the hardships of being on a drug study. Not knowing what's next.
All in all I've had way more good days than I'm used to. I'm still afraid to commit to events that are down the road because what if I'm having a bad day, but on the other hand I find myself thinking about future plans more.
So I'm excited about Elagolix too. And I have five more months to find out what it's potential is!
I also want to say here, because it was brought up on another thread, that if you do this study and end up getting the placebo they'll offer you the real pill for six months after the trial is over. It's still a double blind study, but instead of placebo they do it between two separate doses of Elagolix. You'll just have to suffer for six months to get it first!
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Post by cortney on Apr 9, 2013 20:56:02 GMT -5
Hey everybody, it's been a month since I last wrote because there isn't much to report. I'm still pretty much pain free and my side affects are mostly mild. Brain fog is bothering me quite a bit, and a general "not feeling like myself" sort of thing. Also my sexual energy is at a zero. It's weird because I thought I'd want to have all the sex I can now that it doesn't hurt so bad, but the drive just isn't there. I have a lot of trouble reaching orgasm and I need lube when I never did before.
Thankfully I can talk to my husband about it and he agreed to stop trying to seduce me so hard until I'm off the trial. I still "take care" of him but I'm not really into it.
So after three months on Violet Petal do I think it's worth it? That's a tough question. Pain no longer rules my life, but I'm not living my life to the fullest because of the personality changes that lack of estrogen has caused. Sure I'm spending more time on my art and making money with it, but the art I'm pumping out isn't really quality stuff. It sells, but it's not worthy of my portfolio.
I almost think I'd prefer the pain over the pill. That is if I could have my pain somewhat managed. If a doctor trusted me with a large supply of the pain killers that I prefer, and if I can continue working from home, then I would be feeling pretty good about life.
But maybe I'm only thinking that way because it's been weeks since I've really felt bad endo pain. Maybe I've forgotten how bad it really is.
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Post by nibletz on Apr 10, 2013 10:09:34 GMT -5
Hey cortney In glad pains gone....however sorry to her character n personality changes thats unfair....im on mirena n feel the exact same wat u do n including my art its not like ut was u know
Anyway hun im out atm looking for blender lol so will post properly when I get home if I haven't did xxxx
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Post by chibineko717 on Apr 10, 2013 11:58:24 GMT -5
Cortney, I'm glad your pain is gone, but I'm sorry to hear about the personality changes.
I'm currently in the washout period. I just had my first big period after coming off BC (I had a small period right after I went off bc). It was horrible. I had a lot of pain by my diaphragm and it became hard to breathe. I went to the ER and they kept me overnight since I could not keep anything down and my white blood cell count was very low. They wanted me to stay an extra night, but they did not do anything so I told them I would rather go home. Since I'm at my dad's I went to a different hospital than I normally go to. I did not see the doctor at all on the second day and only saw the nurse twice although I called her multiple times. It took the nurse over 2 hours from when I called her to change my iv bag!
I'm just hoping to get the trial medicine soon since I think the endo on my diaphragm is back. I don't think that I'll get the drug until late May or early June. I still need to have one more period for the washout and then go through all the testing.
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Post by nibletz on Apr 10, 2013 13:32:00 GMT -5
sorry about before cortney...it sucks how they cant stll moderate the hormones so pain is goe or atleast at its lowest but you are stil you....i think that is an issue with many different pills and bc and IUD....etc as ive had many and feel drained now as i feel low moods so can understand why u dont eel you.....
chibineko... i hope it works for u and its not endo on diaphragm it sucks having to wait so long i like reading about diff meds as then i know what to look for and how i feel about it so thanks all for sharing xxxx
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Post by cortney on Apr 15, 2013 18:27:08 GMT -5
Thanks for the well wishes Nibletz.
Good luck with the washout period, neko. It was pretty tough for me too. I really hope you get the actual drug so at least your periods stop again. Do you think you'd stay with it if you got the placebo?
I've been working a lot (I paint, and showed my stuff at a couple comic- cons) and the hours of standing at the cons, then hours driving to and from the cons gave me a ton of breakthrough endo pain. Not a happy camper about that. Especially because I can't take the drugs I prefer which would allow me to be seim-pain free and still allow me to work. I can't really function that well on Vicodin.
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Post by cortney on Apr 15, 2013 22:22:17 GMT -5
I'm having a really bad night and that's being compounded by my crummy internet deleting my messages as I type them. So I hope this one works for me.
I want to talk about the brain fog that these pills are causing since I just experienced a good example of it. I just emailed a friend telling her how I'm exhausted even though I slept ten hours last night. As I typed, it took me a solid 8 tries to correctly spell the word 'slept'. I didn't want to resort to spell check since I knew I've spelled the friggen word before, but every time I deleted it to try again, the little red line appeared telling me it was wrong. It's so frustrating! The same thing even happens when I try to say a word! The words are just not there.
Also the pain seems to be creeping back. I've been working a ton getting ready for a three day comic con where I'll be selling my work, and every day it's getting more and more difficult to stay focused because of the pain and fatigue. The comic con is three hours away from home, and I'll be going alone so I won't have anybody to count on if the pain gets real bad when I'm working the floor. I'm very scared that I'll get there and the trusty pain will rush in and I won't have any choice but to stand there with my art for 9 hours a day until the show is over. My vendor table cost 300 bucks so I can't just walk away from it.
I just emailed the show organizer to see if there is a waiting list for vendor tables. If there is someone else might want mine and I could possibly get a refund. I feel totally defeated by endo right now. I'm looking for an out from this thing that I thought the pills were going to help me through. But here we are, and I'm resorting to my pre-violet petal state.
So I'm considering going off the pills. If I can get out of this show, then I'll probably stop taking them. I'm a little worried about what my body is going to do at first. Will I get a massive period? I'm not sure.
I'm just really tired and I want to be done.
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