Any Lupron stories?

[FLdreamer]

Hello ladies - I've been lurking around your site for awhile now and find you all to be very helpful and most certainly inspirational and brave!  In a nutshell - here is my story:  multiple functional cysts over the last year.  I am experiencing alot of gastro symptoms (nausea, bloating, indigestion) along with lower pelvic and low back pain and cramping.  Just recently went to a reproductive endocrinologist.  She feels that the cysts are not/can not be causing the extent of problems I have been having.  She has read all of my previous medical records/reports, however, has not perfomed any kind of u/s or ct of her own.  She believes the symptoms are indicative of endometriosis (which I've had removed surgically twice in the last 10 years).  She wants me to go to a GI specialist to rule out any problems in that area, but is recommending Lupron shots for 6 months to help control the endo growth.  In a word - I am scared.  I've heard some really awful things about Lupron.  I expressed my concern to her and she said that, in her opinion, the benefits outweigh the risks.  So - I am looking for anyone who has had any experience with Lupron (good and bad) to help make my decision on whether or not to try this.  Thank you in advance for any help/information you have!

Mari

[cmstewart121]

I am 22 years old and have been diagnosed with PCOS and endometreosis. I experience insane periods sometime lasting up to six months with uncontrollable bleeding that has now made me anemic. It took doctors 5 years to even diagnose me because none of them thought that I could have these conditions at my age(which at the time was 15). Needless to say, it was finally figured out. I had laproscopic surgery 2 years ago, and had great results for the first year. Now I am back where I started from. I have severe cramps to the point they are imobilizing, and I bleed to the point that I feel I am going to pass out. Not to mention the pelvic, back, and abdominal pain that is associated as well. My doctor now wants me to try lupron. Anyone who deals with these problems knows that it's an emotional rollercoster in itself. But I have heard so many mixed emotions about the lupron. I can not handle anymore emotional or physical side effects than the ones that I already have, and have heard absolute horror stories about the lupron. I am so confused. My doctor thinks that it is the best thing to do, but I am very apprehensive. Does anyone have any advise? Thank You!

[Jess079]

I am also staring Lupron soon, in the next few weeks. My mother took it for two years to treat Fibroids (she had a very large amount of them and opted against a hysterectomy) and she said her biggest issue was the hot flashes. Your doctor can do something for you while you are on Lupron known was add back therapy, where you can take hormones to counteract the side effects of the Lupron ( of course not enough to interfere with what the Lupron does). I have read great statistics on Lupron, both in the 1st year after treatment and then within 5 years. Everyone reacts differently to treatments so who knows how your body might react to it. I am going with my doctors advice. My doc knows I am planning on trying for pregnancy in 6-9 months so she feels this is a good treatment path for me. Who knows, she may have felt different if she didn't know pregnancy plans were in the near future.

[just_plain_fae]

I am 24 yrs old and on Depo-Lupron for 3 mos to reduce the volume of a grapefruit sized fibroid tumor on my right ovary.  (To help make it safer to surgically remove.)  It hasn't really been that bad - mainly hot flashes!  But hey, no period, I can live with that.  The side effects from the tumor were also limited for me (loss of bladder control) and taking the Lupron has elminated the tumor's side effects for me.  But yes, it is temporary as the problem will begin to worsen once you stop taking the Lupron.  With my insurance company, it was extremely cheap ($25) though I hear thats Very rare.  Usually runs at least $150 according to my doctor.  For me, the benefits outweighed the risks as mine is only short term use.  Not sure that I would take it for long-term however.  I would try to visit your gyn/onc for more info before deciding.

[in the same boat]

I've heard that Lupron can have some real side effects. It's effective in reducing the size of benign tumors, BUT as soon as you stop taking the drug, they usually grow back. I think it's just a temporary fix.

[wubbie3]

I was someone who opted against the Lupron. I'd just read too many scary stories about it, and didn't want to be stuck with something that was supposedly effective for six months, but had read the effects could last over 5 years.
I went with the Depo-Provera shot, and my only side effects, besides being hungry more often (but I get fuller faster, so it balances out), is that I'm a little more depressed (but I was already prone to depression before the shot).
The ultimate goal is to not have a cycle, so the endometrial tissue, both where it should be and where it shouldn't be, doesn't bleed, so no scar tissue, etc. From what I've heard, if there's no blood flow to the endo, then it can actually shrink.
There are more ladies on the forum who have taken or opted against Lupron... hopefully some of them will reply so you get an overall picture.
~Marianne