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Anyone have success with Lupron for Endo Anyone have success with Lupron for Endo

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  #1  
Unread 09-07-2005, 05:01 PM
Anyone have success with Lupron for Endo

I am having increased pelvic pain and my gyn is wanting me to consider Lupron. From everything I have read, I told him I do not want to even consider it. But as my DH and I were discussing it later, most people usually document unhappiness about something. I may write a letter of complaint to a company, but I don't believe I have ever wrote a letter to a company saying their product was wonderful.

So, we are wondering if there are any women out there who have had sucess with Lupron for Endo (especially after a LAVH, keeping ovaries). There are a lot of people who have hated it, but has anyone liked it? My gyn seems to think it is beneficial.

Any responses would be VERY welcomed!! Thanks in advance!
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  #2  
Unread 09-07-2005, 05:59 PM
Anyone have success with Lupron for Endo

Hi There
I am waiting for my TAH on Oct 17th for endo. I used lupron without add back estrogen for 13 months. It works. After about two months my pain stopped. The first couple months the pain was worse (which is expected). But the downside are the hotflashes and for me weightgain about 5 pounds per month. YIKES

Good luck
  #3  
Unread 09-07-2005, 06:05 PM
Anyone have success with Lupron for Endo

5 lbs per month! Oh my! Weight is not a problem for me at this point but if I am on it for say a year, and gain 5 lbs per month, that would be 60 lbs in a year, and then I guess weight would be a "huge" problem! Can you combat the weight gain some how?

I had hot flashes for a few years after my hyst and I really didn't enjoy them, but now that my ovaries are working again I tend to run more cold like I used to--meaning my feet are freezing right now even though it is summer time!

Thanks for your reply! Best wishes for your hyst! And with your endo!
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  #4  
Unread 09-07-2005, 06:12 PM
Anyone have success with Lupron for Endo

Lupron, until my TAH/BSO this June, saved me. I was on it for a total of 6 years (even though only approved for 6 months due to bone loss). It's the only medication that remotely reduced the endo pain. While it caused my many tears on the way home from the pharmacy due to price, it bought me years of time. I'm still only 30, but it allowed me to wait until I was 29 for my TAH/BSO instead of in my early 20s.

If you start it, be aware of The Flare, which happens to your hormones (and therefore the endo) in the first week or 2. I nearly died. After that, the hormones basically are shut down.

Other than the "normal" side effects which exactly mimic menopause, I had no additional problems with Lupron. I hope this helps you make a decision.

Hang in there - I'm so sorry your pain is returning.
Conifer
  #5  
Unread 09-07-2005, 06:38 PM
Anyone have success with Lupron for Endo

Thanks! As you can see from my signature, I had my hyst at 25, 5 yrs ago! So I feel for you having one now. I had no choice at that time, as I had heavy and constant bleeding, but relatively no pain. Now, pain! What fun! Thank you so much for your input! I have only heard of the horrors of Lupron so I was hoping there were some of you who could say it did work! My GYN seems to think it does, but he is a male dr!!
  #6  
Unread 09-07-2005, 06:41 PM
Anyone have success with Lupron for Endo

Yep, it worked for me. Do you have your ovaries?
  #7  
Unread 09-07-2005, 06:47 PM
Anyone have success with Lupron for Endo

Yes, I have my ovaries. Since I was 25 when I had my hyst my dr did not want to take my ovaries if he didn't have to, and he didn't. He was able to cauterize the endo in the ovarian areas. But, my uterus was literally covered so he could not cauterize it there. I was checked for endo because I bleed for 2 yrs, even with several different bcs. I really didn't have pain then, but I am now. So, my gyn is checking my hormone levels, and I am having an ultrsound in a couple weeks. I had a dexa scan and my bones are great. So, he wants me to consider Lupron, to see if it is the estrogen feeding my endo. My primary care physician feels I need to do something because the pain is increasing so if the endo is increasing, it needs to be stopped the best we can. Eventually, I am suppose to have my ovaries out, but we are trying to wait as long as possible. At this point, I am not in agony with my pain, but it is steadily increasing and I know from others with endo and from this site, the pain can be dehabilitating and I want to avoid that if I can as I have two sons whom I home school and we are in the process of buying a company! I need to be able to be me!

Oh, I need to mention that I have endo on my bowel walls and my GYN won't touch it so I do have endo even after surgery. And this endo is affecting my IBS.

Thank you for your reply! Did you have any horrid side affects?
  #8  
Unread 09-07-2005, 07:41 PM
Anyone have success with Lupron for Endo

The IBS thing is awful, isn't it? So far I think the endo pain has improved. My doc couldn't take everything off my bowels, either, so part of me lives in fear that the endo will come back with the HRT.

The side effects with the Lurpon were hot flashes and night sweats. I think it may have caused a little more fatigue, but I also have Chronic RFatigue Syndrome, so it was tough to tell.

Let us know what you decide, K?

conifer
  #9  
Unread 09-07-2005, 10:25 PM
Anyone have success with Lupron for Endo

Hi Weiser,
I looked and looked for some positive input for you. I'm afraid I didn't find much. I'm so glad you're researching before you make your decision. I'm going to share some links I found so you can read some of the discussions that have taken place on the subject. There are many more and I didn't even begin to read them all. If you do a search on lupron you can bring them up and look for yourself.
You might want to check the Endo/Adeno: Stories of Triumph over Pain. It's a forum that is read only and many women have posted their stories about how they dealt with endo and adeno.
To Take Lupron or not

Lupron Anyone?

There's also a very interesting link in Resources that you might find informative.
http://www.hcgresources.com/myths.htm

I hope some of this will help you in making your decision and that you can find something that will help your pain.

's, Rita
  #10  
Unread 09-10-2005, 10:20 AM
Anyone have success with Lupron for Endo

I was on a 6 month course of Lupron after my TAH/LSO and yes it did help with endo pain, but the side effects just weren't worth it....severe edema, 50+ lb weight gain, severe joint pain and horrid anxiety. Not like menopause at all (in my case) as I had a RSO last October and am in meno now (test results confirm this) and have very few symptoms....tolerable hot flashes and slight vaginal atrophy. And I'm not on any HRT because even after the 6 months on Lupron, they still found active endo when they did my RSO. Now, I'm not saying that it's this way for everyone. We're all different and I'm sure you can find people who had a very positive experience with it. However, my question is this: Lupron shuts your ovaries down so, how is this "buying you time"? Once you are off the Lupron you'll either have to have the ovaries removed or the endo will return. So, what are the doctors really accomplishing with this drug???
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