Re: Lupron a nightmare?
From: Kara (anonymous@obgyn.net)
Mon Sep 18 18:01:06 2006
Jen,
All I can say is WELL SAID! I enjoyed your post, and I feel that it was
well written. I was on Lupron for 6 months. The side effects that I
had for exactly 1 month were cured by Aygestin which was part of the
Add-Back therapy. After that got in my sytem - I had NO problems at all
for the next 5 months. Now, unfortunately, I am in pain again. 1 year
2 months since my surgery and I wish I would have stayed on the Lupron
longer!
--
Kara
Anyway - thank you -for such a kind, considerate and honest post!
At Fri, 15 Sep 2006, Jennifer wrote:
>
>Dear Aimee- and others who read this post.
>
>This is going to sound harsh, however I think that sometimes women need
>a wake up call when one is due. I am not about to say that some peoples
>pain on this site isn't worse than others. I'm not about to say that
>your experience with a certain treatment wasn't worse than mine or
>someone elses and that is why we should listen to you. What I am going
>to say is that people need to understand that some of these women when
>they ask questions and opinions don't have much experience with things
>like others of us do. And when you come across as you know it all about
>a certain drug because you read an article or two and start questioning
>doctors reasoning to put women on this or other drugs or treatments,
>that sounds pretty bad. It can put a distrust in people and their
>relationship with their doctors which isn't what we need when we are all
>dealing with this disease.
>
>I'm sorry to hear that some of you had an absolute horrible time on
>Lupron and that you thought you were cheated or lied to. Or that your
>insurance didn't cover the cost of treatment like mine and others did.
>But in the end you are the one going in each month to get that injection
>and if you didn't like the side effects, like I didn't. Then you don't
>need to go back for the injections. Which is why I stopped after 6
>months, I gave it a shot and decided I didn't want to continue. Plain
>and simple. No horror stories to shock and upset people, no drama. Go
>in and talk to your doctor and explain you aren't going to go through
>the therapy anymore. If you feel like you are being ganged up on then
>find a new doctor, a specialist or get a second or third opinion before
>starting it. But don't make these women think terrible things about
>their doctors or question their treatments because we don't know their
>situation. The last thing we should do is scare people to the point
>where they are scared to go in and do anything. Surgery, Lupron, other
>drugs or treatment- whatever. That isn't something you would want done
>to you, why would you scare some of these women who haven't had the
>disease long and are being thrown a ton of info here and there already?
>They are confused enough, throwing being terrified into the mix is only
>going to make it worse. Give them the facts on what happened to you or
>what you know, but keep in mind that in the end it is up to them, their
>family and their doctors. To try to sway someone either way and make
>every experience with this drug or some other drug or treatment isn't
>fair to those it will work for, or has worked for and for their doctors
>who are doing what is best for their conditions. Just try to remember
>what it was like for you when you were in their shoes? Would you have
>liked to have read some of the things on this site? Not just with this
>issue but past issues?
>
>I wish you all well and I hope that you are feeling better.
>Its just hard to see so much depression and negativity on this site.
>It is very sad. I came on here to learn of other things that worked for
>people that I might try and help my situtaion. I also came on here to
>try to help people look at things objectivly and be more positive and be
>a little support for people to hear. But when everyone is in such
>horrible pain and so negative, it is hard to be support, it is like you
>don't want to hear it, you just want sympathy and to keep feeling bad.
>If you are in that much pain, I feel bad that you are suffering like
>that. I know a lot of people with endo, and I have never heard of pain
>the way some of you describe. I know people have different pain
>tolerances and there are good days and there are days, but nothing like
>the way it is described here. The thing we need to remember is that
>there is no miracle pill to make it all go away. We all know that isn't
>going to happen. There is no cure.
>
>Maybe I am over reacting, but the majority of the posts I read are very
>negative and depressing. I have had this disease for 13 years. I
>understand believe me I do. I have switched docs 5 times, I have had 4
>surgeries and a number of other treatments. I have been depressed and
>felt like there is no hope and that I'm not going to be as lucky as my
>sisters who have kids. I have been there, believe me. I just try to
>keep my chin up and think that I am doing what I believe is best after
>all the reading and research and trust I have in my doctor. I just know
>that being mad at whomever for having this disease and being upset about
>it are only going to make things worse for me. literally, stress,
>depression and anger allow this disease to feed on your body. I just
>have to have hope for myself and for my future.
>
>Good luck to you all, especially Aimee. Talk things over with your
>doctor, find out why they want to put you on this drug and for how long.
>Why they think this would help. Take notes or bring a tape recorder or
>a family member or friend with for support. A lot of times we don't
>always think of things others might. I always suggest this to new
>people I meet with endo when they go in for consults or surgery
>consults. Do some research of your own on different drugs and
>treatments, and talk them over with your family and doctor and make a
>decision that is best for YOU.
>
>I'm sorry if upset anyone or hurt your feelings. that was never my
>intention. Just to try to make you read things the way others might
>hear them...
>
>Take care.
>
>Jen
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