lipps
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Posts: 9
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HELP!!!
Feb 24, 2013 13:18:04 GMT -5
Post by lipps on Feb 24, 2013 13:18:04 GMT -5
Long story short: Stage IV, two surgeries, trying to get on Lupron, going off Depo shot due to it making my depression worse, and having a consult to try the Violet Petal study. I need some advice you guys: Depo shot is going to wear off soon and I won't have anything to help fight against this. What do you guys suggest I do? I'm tired of feeling trapped by this pain and people thinking I'm exaggerating everything, passed around from doctor to doctor.
I dunno, maybe I just need to feel not so alone.
Thanks for reading.
-Jess
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Feb 24, 2013 16:17:54 GMT -5
Post by nibletz on Feb 24, 2013 16:17:54 GMT -5
Hey I understand with the depression and pains
Maybe try pelvic massages and heat pads or hot water bottle that helps me I massage pure cold.pressed black seed oil then a hot water bottle it helps me but I suppose olive oil would be helpful too....sorry can't be much help but am here if u need to talk xxxx
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HELP!!!
Feb 24, 2013 16:52:53 GMT -5
Post by willow82 on Feb 24, 2013 16:52:53 GMT -5
The Violet Petal Study is very promising though it is still in double blind placebo trials. Elagolix will be a great option since it does not have the clinical flare that Lupron has. I wish it was on the market now.
I have been on Lupron for two months now, the clinical flare was hellish but now most of my pain is gone. I am having some side effects but it is well worth it. Feel free to message me if you want more info on Lupron.
Whether or not another lap is advisable really depends on whether or not the visible endo is out. In my case I had surgery in October with all visible endo excised. Though I had deep implants and a lot of uncontrolled bleeding before surgery so within a month I was having a lot of pain.
However, more surgery wouldn't have helped at that point. Birth control (with estradiol) just made my symptoms sky rocket.
Endometriosis really sucks, we get that here. Always available to chat about it.
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lipps
New Member
Posts: 9
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HELP!!!
Feb 24, 2013 17:05:45 GMT -5
Post by lipps on Feb 24, 2013 17:05:45 GMT -5
Where would I get black seed oil? Heating pads don't seem to work. I wonder if any one out there had the Lupron shots and is a couple months done with it and have success.My insurance is giving us a hard time in the Lupron. For my surgery, they took out the pound of end, unglue my colon from my uterus and my small intestine from the back of uterus. And doctor acts surprised its come back a year later. Anyone else run into this?
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Feb 24, 2013 17:35:51 GMT -5
Post by willow82 on Feb 24, 2013 17:35:51 GMT -5
Lupron has given me really good results, it isn't even a question about getting my third injection. I only have pain and spasms now after bowel movements, versus before where I was in moderate to severe pain 24/7. Even my post bm pain is greatly reduced.
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lipps
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Posts: 9
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HELP!!!
Feb 24, 2013 18:29:07 GMT -5
Post by lipps on Feb 24, 2013 18:29:07 GMT -5
That is greatly encouraging considering I'm in the same boat! The people at the study really want me because they are having a hard time finding girls with surgically diagnosed stage IV. I'm hoping to get the pill and not the placebo.
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HELP!!!
Feb 24, 2013 20:36:14 GMT -5
Post by semicolon on Feb 24, 2013 20:36:14 GMT -5
I think the issue with Lupron and other hormone suppressive therapies is that they may work while you are on them, but they are not a long-term solution (Lupron is not supposed to be taken for more than six months duration, per the manufacturer although some docs will prescribe for longer). I don't know enough about this one to know if it is being trialed for longer than six months (anyone know?), but for some women they are back in the same boat they were in before the drug unfortunately. There is an ongoing thread on the study with someone on it right now.
Lipps, have you had surgery with an endo specialist with advanced skills? The average gyn is not skilled enough to address endo in many cases, especially with stage IV disease. Where do you live? Apart from surgery there are other things to try, like diet, exercise, and pelvic floor physical therapy.
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HELP!!!
Feb 25, 2013 7:11:40 GMT -5
Post by nibletz on Feb 25, 2013 7:11:40 GMT -5
Lipps you can get black seed oil online try Amazon...my mom bought me mines as she gets ut cheaper where she is....
I have the mirena coil but my doctor is worried as I still get normal periods monthly well normal being 10 days heavy n odd spotting in between with horrendous pains good thing is she is an obgyn too shes reffered me to a gynae that I see on friday as she thinks I need another lap however im thinking of my options afterwards never tried lupron I've had zoladex but without hrt she thinks to maybe go back but with hrt andmy gynae will advise other options as I get severe migraines with blackouts and my rhuematologist thinks I have fibromyalgia im pretty lost at options as I've tried so many things and I feel worse than ever....
So any ideas or advice is welcome xxxx
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HELP!!!
Feb 25, 2013 15:39:43 GMT -5
Post by hellsbells on Feb 25, 2013 15:39:43 GMT -5
Have you looked into diet changes? Reducing foods that cause inflammation such as wheat, dairy and sugar can greatly reduce pain. Far better than drugs or hormones and all natural, and you're in control.
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lipps
New Member
Posts: 9
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HELP!!!
Feb 25, 2013 23:23:22 GMT -5
Post by lipps on Feb 25, 2013 23:23:22 GMT -5
Whew, lots of questions to answer! Yes, I've had surgery with a pelvic pain specialist. His big thing was endometriosis. I almost feel like he doesn't believe my pain came back because he's the big doctor and he was wrong when he said I have five years at least until the pain came back. I've adjusted my diet but does nothing for the pain. Nibletz, I'm definitely feeling you! Fibromylgia I'd usually what Dr prescribe when they don't know what's wrong with you. I'm pharmacist and I see it all the time. I've been taking prescription strength Naproxen twice daily and it doesn't stop ALL the pain, but it helps a tiny bit. I have my appointment for the research study for Lupron in pill form (there's a girl on here that's been writing about her experience and it's been very comforting and encouraging). I will start a thread as well to tell my experience too. Hellsbells, though diet and exercise help, drugs and hormones are not bad for the body. Probably because of what I do for a living, I believe that diet and homeopathic ways are not the answer for everyone. But a smart diet does definitely help fight off diseases and inflammation. Unfortunately, my body didn't get the memo Thanks for all the information and just responding. Really feels good knowing others are ready to spork it their ovaries as well. Helped me get through a hard weekend.
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Feb 26, 2013 9:01:16 GMT -5
Post by hellsbells on Feb 26, 2013 9:01:16 GMT -5
Hi, if you're planning to use the same pill as the Violet Petal study can you please use the same thread?
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HELP!!!
Feb 26, 2013 17:15:34 GMT -5
Post by nibletz on Feb 26, 2013 17:15:34 GMT -5
Hey Lipps
I hear you on "drs dont know so its fibro" I've been complaining years and can barely get out of bed some days...all tests are normal breathlessness is scary and its painful in my chest I had pulmonary tb and finished my meds in june I saw my specialist today she said its more than likely scar tissue and s string n lack of lubricant on lung plura as well as still recovering from it as it was very bad and sever so now I suffer thy even said its probably.linked to fibro and all the above and fatigue so yay me!!! NOT
Diet changes on endo can help tremendously wheat and gluten free where I can except it costs money and I can barely afford.to.eat normal food so.sometimes alot.of.the time I can't but it does help also I eat more veg than.anything and more fish
It sucks how to be healthy you gotta be rich
Lipps.im on opiods its so frustrating when nothing works morphine just touches it and still family barely understand I keep getting asked why am not working and why hubby isnt?
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lipps
New Member
Posts: 9
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HELP!!!
Feb 26, 2013 22:18:45 GMT -5
Post by lipps on Feb 26, 2013 22:18:45 GMT -5
hellsbells, Yes, if I decide to do the Violet Study, I will use the same thread.
Geezus Nibs! First person I've met that is worse than I am it sounds like. That was definitely me last year though. Didn't work for a long time because of the pain. The only people that saw my pain was my boyfriend (and we had barely started dating, so that scared the sh*t out of him! He's still here though) and my stepmom who let me live with her rent free. If I even ventured outside it was days when I was only on a pain level of 8 instead of 13. My body became immune to Morphine and now it doesn't work on me at all. I try very, very hard to avoid opiods due to how addictive they are. Kind of confused what happened at towards the end of your first paragraph. It all sounds awful and scary.
I just can't bring myself to do the diet thing. I've already lost a lot to this disease, I'm not giving it that. I lost 30 pounds in a month because the endo was growing on my intestines and I couldn't keep anything down but liquid diet shakes.
News on my front: got the call from my insurance today and they are going to cover the Lupron shot! I have to pay $600 but considering it's thousands of dollars medication, sold! I'm going to the Study thing tomorrow to hear them out, but I'm leaning towards the shot. It's gonna be a sh*tty 6 months but I hear it's worth it. Strangely, my doctor told me that because I'm bi polar instead of throwing me into depression, it'll throw me towards the manic end. The Depo shot has been making me depressed for a year. Its almost out of my system.
hellsbells, is there a thread that talks about the Lupron shot and what people experienced on it? I'd like to read that and contribute.
Nibs, hun, HANG IN THERE!
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Feb 26, 2013 22:33:07 GMT -5
Post by willow82 on Feb 26, 2013 22:33:07 GMT -5
Lipps, many doctor's offices can get samples of Lupron, usually for 3 months out of 6. Just let them know you need it.
Lipps the Lupron thread here is a bit of a monster, me and a few others have posts with our experiences on the last few pages. Feel free to message me about it, I am just finishing out second month, get my third shot in 2 days. It's had it's bumps, but overall the treatment has been extremely helpful. ALSO my first shot was a sample.
With the right support medications it really isn't that bad. The first month is the worst when the clinical flare happens (essentially burning out all the estrogen).
Other than the first month it doesn't seem to different than the Violet Petal Study.
I will say that Lupron has given me my life back, and given me hope that I have options to reduce my pain and other symptoms.
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HELP!!!
Feb 27, 2013 7:47:03 GMT -5
Post by hellsbells on Feb 27, 2013 7:47:03 GMT -5
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