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  #11  
Unread 03-15-2005, 03:32 AM
No to Lupron

Hi Michelle!

Sorry you are still dealing with this problem. I had my ovaries taken even when my surgeon didnt agree and I feel fantastic!! Painfree for the first time in 20 years.

I just wanted to throw in my 2 cents about Synarel and Lupron. I had taken Synarel and had mild side effects and did just fine on it. The reason I had my hysterectomy was due to having an injection of Lupron. After 3 hours of the injection I started hemmorhaging and passing baseball size clots and had to have an emergency hysterectomy. Synarel was never offered to me, just Lupron. In fact I thought Synarel was no longer available and when offered the Lupron I thought that was the latest and hottest thing on the market. I work in the medical field and see now how the doctors and pharmecutical companies work together.

Please spend time and I'm sure you have studying the dangers of Lupron. Syneral does the same thing but is much more gentler on our bodies. It was for me anyways.


Good Luck with your research!
Cheryl
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  #12  
Unread 03-15-2005, 06:51 AM
BSO Update

(((Michelle))))

Thanks for clearing that up for me. I would also do like Krinkels suggested and research Lupron well and even start a thread here asking sisters for their side-effects with Lupron to give you a better understading of its effects.
I just want you better, you know that and I pray that you will get better soon, no matter what you decide to do. Please keep us updated.
  #13  
Unread 03-15-2005, 08:01 AM
BSO Update

Well, at least I am reaching the end of my pain cycle. Still having some twinges but I'm able to ignore it for the most part. For those of you who and have room on your list ... fit me in as you can.

(((Marian))))

You're a sweetheart. Thanks.


(((Cheryl)))

Thanks for the info. Just the sort of feedback I was looking for. It just seems to me like the all at once dosing of the lupron depot would be so much more harsh than a nasal spray twice daily ... more gradual and perhaps more gentle on the system.

Synarel is so much more expensive than the lupron depot if you are paying full price for prescriptions. I'm lucky in that regard because my mail order pharmacy copay for 90 days of Synarel is $45.

The other thing is that with the Synarel, if the side effects are horrible, you can stop inhaling it and so its reversible and also somewhat adjustable. Once you have the shot in you, it just has to run its course.

I think most docs ASSUME that we'd rather the convenience of the shot than the hassle of the inhaler and they worry about noncompliance with the dosing. Also, the cost of synarel is prohibitive if you don't have my type of prescription coverage. I remember back in 1997 I was going to get it thru a local pharmacy and my COPAY was $180 for one month. So, I had the pharmacy return it and I went thru mailorder and it was $45 for 90 days. Still the same thru mailorder .. just checked the website.

Something to seriously think about.

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  #14  
Unread 03-15-2005, 08:32 AM
BSO Update

Dear Michelle S

I'm so sorry...I should have explained myself better in my post. I was not actually suggesting you try Lurpon - as I was one of the people that got very sick from that horrible drug and don't believe my body ever fully recovered.

What I was trying to suggest is that since the Yasmin was not relieving your pain that perhaps your ovaries are not the problem. But, since you have mentioned that you tried Synarel back in the 90's, perhaps this is an option for you now? A test drive of sorts, before you part with your ovaries (if ever).

I'm sorry that I wasn't more specific in my prior post. I know that Lupron works wonders for many women, but I got so horribly sick from it, that I could never suggest any other person take it. At the time (90's), I actually had a very hard time trying to tell my Dr's that it was the Lupron making me so ill. They just couldn't believe it (both my GP & Gyn).

Endo is so nasty - and I will keep you in my prayers. It hurts us all so differently. I wanted to let you know that my ovaries were full of it - as well as other areas. But, removal of them has not helped me. I am a little biased - gee can you tell? Lol! But I wanted to let you know a bit about my story. The problem is that there are no clear cut answers, and most / if not all docs, each have their own 'theories' about what will cure us.

Please do take care, and I'm glad your cycle of pain is coming to a close
  #15  
Unread 03-15-2005, 09:32 AM
BSO Update

Hi ((((Michelle))))
This may be lengthy I've been on Lupron and Synarel (and Danazol)
I have been on Lupron and Synarel. They tried Lupron first and I was on it for a cycle of 6 months. It helped keep the endo quiet, but the side effects were awful I had migraines so bad my body would go completely numb on one side. And as soon as I stopped the Lupron the pain was back. So then they put me on another 6 mo. cycle, I had the same reaction so for some reason I let them try a 9 month cycle (at the time I was only 18 and just did whatever they suggested as I had no idea what was right, I was also severely depressed and thought drs knew best lol).
(To be honest I know I was on 2 6 mo cycles and 1 9 mo cycle, but they may not have been in that order.)
The last cycle of Lupron did absolutely nothing, I was in constant pain. The cost of Lupron back in '98 for me w/o insurance was $400 (I believe that was for a 3 month cycle given in one injection, they also had a choice of 1 1 month cycle, then come in once a month). Luckily my Dad (whose in the Guard) had BCBS of TN and we only paid $4.00!!
They tried me on the Synarel and I don't remember a lot about it, just that it didn't help the pain, and similar side effects but not as severe as Lupron. Like you said the Synarel isn't as intense a 3 mo or 1 mo injection.
A few years after being off Lupron I did some research and found out that it was once used (I don't know if it still is) for men with prostate cancer. I read a lot of information and just remember being shocked that they had out me on it so many times. You'll have to excuse my memory, after being on so many drugs it's kind of left me in a
I was also on Danazol (you didn't mention that one) but it didn't work for me either.
The doc I went to before the CPP doc wanted to give me Lupron even after a TAH/BSO!!?? I said ABSOLUTELY NOT, it made no sense to me at all.

I hope you come to a decision, medical decisions are so hard to make. There are both positives and negatives to our decisions and it really helps to do as much reseach yourself as possible. I wish I would have been aware off all the resources when I was a teenager.

May God bless you and help you come to a decision.
You are on my prayer list.

  #16  
Unread 03-15-2005, 06:12 PM
HI

Hi Michelle,
I am glad that you are re-thinking the BSO. I had a TAH/BSO because the doctor convinced me that I "wouldn't want to go back into surgery to remove things piece by piece, would I?" For me, the pain that caused me to have the surgery is still there. I didn't get relief from the surgery, all I got was adhesions, and menopause! Since the doctor was convinced it was endo casuing my original pain, I opted out of all HRT, so the whole surgical menopause was equally hard to take, especially since the original pain is still there!!! I know how hard this decision is for you, I wish I had taken the time to research like you have, and gotten a second opinion like you have. No matter what decision you make, it will be hard. Only you can decide which way to go with this, and how much your quality of life has been impacted by your pain. I know of friend who had a BSO after a hyst for endo, and she feels great! I'm sure Doctor's don't recommend this if they don't have many patients who benefit from it. Good luck to you whatever you decide. In the end, all we can do is go with our gut feelings, and pray we made the right one!
  #17  
Unread 03-18-2005, 07:44 AM
BSO Update

Well, talked to my gyn yesterday and he agreed to a course of Synarel. He had not prescribed it in so long he couldn't remember that much about it.

So, he flipped thru his PDR and we talked thru my earlier use of it around 1990/1991 and again in 1997 for a couple of months. He agreed to it and we discussed add back therapy timing, etc. He did not even attempt to sway me to use Lupron instead. My point was that I know how Synarel affects me and I don't know that about Lupron. He really got that. The plan is that I use it for up to 6 months and then we re-evaluate the idea of a BSO at that time.

He is as accomodating as he possibly can be. I wish everyone had at least one who is willing to really listen and really care about patients as people who have their lives to live. Really, if they can't all be like that ... why are they doctors in the first place?

s for all my sisters and thanks again for helping me sort thru all of this.
  #18  
Unread 03-18-2005, 11:25 AM
BSO Update

S Michelle,

I am happy to hear that you have such a kind/caring Doctor. You are right - we should all be so lucky to have at least one. I have managed to find a great group of docs - but it did take me several years, as well as firing dozens of docs...But the end result was worth it - in the long run.

Please keep us up to date on how you are doing on the Synarel. This should give you & your dr fairly clear ideas as to what's causing your pain. Also (I'm sure you already know this - but wanted to give you a reminder) make sure you have a Bone Density test done prior to starting Synarel.

Good Luck & Keep us posted S
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