Run Run Away

Question:

first of all your insurance does cover it but please relly think about it before taking this, it does make you very depressed and you get all kind of weird of things happening to you, hot flasher, weight gain, and soem other things, i was on it for 6 months and believe me it was not fun. did you get a secong opinion? please really think about it before taking it, my email address for about 7 years….

Response:

EJ, In my personal opinion one shouldn’t take lupron without having been diagnosed first…and the only sure way to diagnose endo is through surgery. Lupron can be pretty harsh for some and can have some serious side effects. I would hate for someone to go through that if they don’t even have endo to begin with. I would suggest getting a definative diagnosis first. Meg =O)

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EJ, Is the surgery for diagnostic purposes? It might be good to do that.  I had a diagnostic lap on 6/23 & it answered so many questions for me. Before you take any medication or therapies, be sure you read up on as much info as you can. Ask around, here is a good place.  These gals have helped me much with info, pros cons you name it! If I missed your story, sorry, have you already been diagnosed with endo & this is a different surgery you’re talking about? As for the living with pain–I say been there done that ready to move onto the next challenge now.  Prefer one without mind numbing pain!  I hope your parents can understand how awful this is for you. Blessings your way, Karyl

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Erin, If you have not been diagnosed, you will have to have a laparoscopy to be diagnosed, that way they can remove it as well.  My first lap was easy as pie, and I was able to stop taking the meds the day after because I had so much relief.  I suggest you read up on it, so you can be comfortable with what they are doing.   I was put on Lupron before surgery as michele pointed out, its a cheaper route for them really.  And if someone refuses surgery it is a way for them to treat you.  ButLupron is not forever and the pain relief can be for a short time or a long time, and the side effects can be worse than the disease it is treating. Some women have hot flashes, mood swings, sore joints, and many get osteoporosis, and some have experienced thyroid problems.  I suggest you take a look at a few resources, ask around the group for other women’s experience with Lupron and talk to your doctor in depth about it. Ive been on it for three months and I feel great.  A little sore sometimes in my hands and feet, and the hot flashes are quite annoying, but not horrible for me.  I take 500 mg of Evening Primrose Oil for the hot flashses, and 2000 mg of calcium for the bone loss.  It can be scary at first being on Lupron because your estrogen levels sore and your endo sumptoms can be terrible for severl weeks or more, I ended up in the ER thinking i was hermoraghing, but it was just eh Lurpon and not having had a period for three months from Depo Provera before.  I felt great the next month and after a lap in addition to remove what endo the Lupron was unable to get I am a lot better. I havent taken vicodin in three weeks and I’m riding my bike (I havent been able to in a year) and being active again.  but this is me, one of my friends was on Lupron and it made her suicidal, so you have to figure out if you think your body can handle the drugs.  I made my decision based on the fact that I had tolerated the drugs pretty well but they had just not treated my endo as much as i wished them to.   If Lupron is scary to you, ask your doc about Synarel, I keep reading here and elsewhere that it can have lesser side effects, though i have not yet researched it. Please take care and talk with your family.  Let them read some of these posts if that will help.  Books are great for helping them to understand abuot endo. I am still recommending books to my family.  They are slowly getting it i think. Please forgive my long post, i just wanted to cover a lot of bases.  I hope you will email me if you need anymore info. or any of the other members here. take care Clare C in San Fran

Response:

Erin, If your dr only THINKS you have endo, I would definately want a lap instead of the lupron.  In my mind, I can’t justify using a drug like this without a certain diagnosis.  Besides, there is no correlation between the quantity of endo and the amount of pain it causes.  You could be like me and have mild endo that can be lasered off during the lap and then do something less extreme like continuous bcp or Depo Provera.  I also had a stuck ovary that they were able to free up, thus giving me some relief from the problems. BTW, I know it isn’t like this for everybody, but my lap was prettty easy .   Just my two cents. Sabby

Response:

I’m new to working online, but after reading other’s stories, I’m hoping to have someone who can listen and understand.  My dr. thinks that I have endo and gave me two options–Lupron or surgery.  I’m not ready for surgery yet, but am worried about the cost of Lupron and whether my insurance will cover it.

Hello Erin, I too was just recently diagnosed with endo. After reading about the costs, I called my insurance co (Blue Cross Blue Shield) and it is on my formulary. I was glad, as it is a 450 dollar drug I can get for 6 dollars. I need 3 to 6months of it so I am really happy. My doctor supplied me with a letter to them statring that Lupron was a legit treatment for my endo and cysts and fibroids. So I suggest you call your insurance company. I do not have an HMO because of problems like this.

Response:

Dear Erin, First, is the surgery your Dr is suggesting a diagnostic laparoscopy?  If so, I strongly suggest you consider it.  Not only is this the only way to confirm that you have endo, but the endo can be excised at the same time- a much better and longer lasting treatment than any of the drugs.  You only need to be in bed for a few days afterward, but really need to take it easy for a few weeks (ie. no lifting, marathon running, etc!).  My experience, and the experience of many others here, is that the GNRH drugs like lupron and Synarel provide only temporary relief from endo- and that is IF you can tolerate the side effects and are not too worried about after effects. Second, you are right to be concerned about the cost of the drugs.  My insurance company did pay for my Synarel treatment.  Otherwise it would have cost almost $400 per month!  You should check w/ your insurance company before committing to the treatment, but don’t insinuate that it is your drs first choice.  I’ve heard that some ins. cos. are making people try Lupron before they agree to surgery! I’m sorry your family doesn’t understand how difficult living with the pain and frustration of this disease is.  Maybe you could have them read some of the posts, websites and books on endo so they could understand it’s more than a headache or a sprained ankle or a muscle cramp.  At least you know you’ve found a lot of people here who can relate to what you’re going through.  Please come here to vent whnever you need to let it out…sometimes it helps a lot! XOMichelleA

Response:

I’m new to working online, but after reading other’s stories, I’m hoping to have someone who can listen and understand.  My dr. thinks that I have endo and gave me two options–Lupron or surgery.  I’m not ready for surgery yet, but am worried about the cost of Lupron and whether my insurance will cover it.  I also don’t know how to tell my parents of this latest news.  I was raised that pain is part of life and you deal with it, on your own.  That’s becoming a little difficult and I don’t know where to turn.  Any help would be appreciated.  I hope this question(s) aren’t out of line/inappropriate. Thanks-EJ

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