Hey there! I would say that if you ask 5 women about Lupron, you'd get 5 different responses.

Some see it as their only option as per their doctor. It is NOT a fix-all. IF you're lucky, it holds the disease at bay. I say IF because it did not slow the growth of aggressive stage 4 for me, even in conjunction with multiple surgeries.

Please do not SHOOT the messenger. I can only speak from my personal experience. The chemical injected into my body caused far reaching damage to my bone health, for which I will suffer eternally. It was not instantaneous, but progressed over the 20+ years since.

I think we'd all like to hear "positive". But I'd prefer to hear from someone who's been there, done that...can warn you of the negatives. Ultimately it is a choice that only you can make. I made the wrong one=(

Hugs~~Pup

Hey Armywife98!
I am new to dealing with endo and Lupron was the first thing my doctor wanted to do after it was suspected that it was endo. I have been on it for 4 months now...and I wish I had not been. For the first three months, my pelvic pain was still there and sometimes worse than it had been before the injection. I finally got some pelvic relief around month four...but then the side effects started. Thankfully I have only had two major side effects, but they have been AWFUL!! I have had terrible night sweats and body aches that were so bad that some days I couldn't even get out of bed. I am having my first surgery next week and I told my doctor that I would not be doing these injections any more. Instead we are going to do continuous birth control in hopes of managing the pain.

As Speckledpup said, it really is different for everyone, but I wanted to give you a window into my experience. Whatever you decide to do, be sure that you are completely comfortable with your choice. If you are hesitant about it...don't do it and continue to talk to your doctor or get a second opinion. I hope everything works out for you!!!

Thank you both. I completely understand that everyone will have a different experience with it, I'm just trying to weigh everything before I say yes or no. I have other medical conditions and my neurologist isn't 100% on board either but he said if its what's needed then we will do it and go from there. My pain right now is only during my periods and they are going to do a hysterectomy because I am not a candidate for hormonal birth control and I have MASSIVE cysts on my ovaries, so no more periods...so maybe the pain will go away?!

Hey again,

I am 21 years post-hysterectomy w/removal of ovaries. Yes, the removal of uterus puts an end to the bleeding. The removal of the ovaries stops their production of estrogen, which FEEDS the moster. If lesions of disease are found throughout the abdominal cavity, those should be "cut" out, not burned...EVER.

Be aware, however, that you will go into immediate surgically induced menopause, which for me, was Hellish. I have stage 4, so I was forbidden to take any form of HRT.

My surgery DID NOT lessen my pain---EVER. Although the heavy bleeding (hemorrhaging) and heavy clots are not something I dealt with any longer, the monthly fetal position cramping sontinues through TODAY. In fact, as January comes to an end...My periods were always the first week of every month...I'm already feeling the start of PMS. It will escalate into hardcore cramps, rectal/vaginal/pelvic pain, and bowel issues which will trigger bladder issues.

Open abdomen surgery in 1994 was performed by a GYN Oncology surgeon. The disease was vast, even shutting down my liver function. The procedure was performed a year AFTER 2 laps to remove my uterus and ovaries, plus series of Lupron. The disease had continued to aggressively consume my organs even after removal of uterus and ovaries AND Lupron. "Enigma" I'm called.

The 1994 surgery saved my life, but I do not believe it stopped the endometriosis. I believe this very day that my organs are bound and choked by either lesions or adhesions. NO SURGEON will touch me to even try to help. Believe me, I've tried. I saw 8 specialists across 3 states. They ALL recommended pain management BECAUSE "more surgery will cause more adhesions".

It's such a "catch 22". I do not mean to frighten anyone...ever. But one would be wise to fear this disease (on a common sense level). If any surgeon is telling you that a hysterectomy "guarantees" cure...He's full of shit. There are no guarantees and there is NO CURE.

I wish you the best outcome possible, AW. Just be sure you have a "Superhero" surgeon who KNOWS what he's doing. I had the BEST cancer surgeon...one of the top 50 in the nation. Yet he was honest enough to tell me that he wasn't able to get "it all". I took tumor suppressing meds for 7 years post-surgery. He remained my doctor until he retired in 2010, leaving me hopeless and alone. I now have "blood filled tumors" on my spine. I have no doubt it's endo. I have agonizing spine/bone/joint pain on top of my tummy issues.

Yes, frightening, though my experience. I'm not projecting this onto others. I'm simply saying "Arm yourself with knowledge and an excellent endocrinologist and if at all possible, consult a GYN/ONC as endo is mutant cells, much like cancer.

Note: VallW has posted several noted specialists/surgeons within the past few days. I would NOT allow just any GYN "surgeon" do this. I made that mistake and endured 2 botched laps before final surgery.

I wish you the absolute best, whatever you decide=)

~~Pup

Hi there!
I was hoping joining a support group with help me to deal with my pain, and frustration directed at Endometriosis.
I just turned 20 and was diagnosed with Severe Stage IV Endo in November 2014. After my laparoscopy, my dr said due to it being so severe there were two treatment options, either Lupron or a hysterectomy. Due to my age and want to at least have a chance of having children, I started Lupron on December 5th. In a week I will be on my 3rd shot, half way there!!! However, the pain has only increased and my fatigue has gotten worse as well. I am very frustrated because I am also a college cross country runner, and I can't even run like I used to because of the pain!

If anyone has any insight on what might help that would be awesome! I am going to have an acupuncture treatment on Thursday to see if it could relieve any pain at all!

Thanks all!

I did 6 months of lupron following me lap...
It sucked, and i was prepared for it to suck. that being said, it definitely reduced my endo pain. Yes, i had other side effects, and being on it was pretty horrible. but to me i was willing to give six months of bad side effects if it would possibly give me two years of endo relief. Who know if it will last, i moved right from lupron to depot provera, and now onto nexplanon.
If my doctor wanted to put me back on lupron i would really have to think hard... i would prefer a surgery to another round of lupron... but for me i think it worked in putting endo in some sort of remission (of course i have developed some neuro and phsyiology problems in the mean time... and had 6 months of horrible emotional problems..) it's a personal choice, but i would say try it, and if it's too much to handle you can stop...

runnergirl, for me it took about 4 or 5 months to notice improvement... hang in ther!

No doubt that every step along this winding, lifelong road is treacherous. Each decision is personal and should be researched incessantly.

I can say with deep concern...Please monitor your Calcium and VitD levels. Lupron, without a doubt, threatens your bones further down the road. Just be cautious=)

Thank you guys. I am really trying to weigh all the pros and cons. I just don't see many pros for me. I have to be very careful because I can become very easily deficient in many vitamins due to my other medications especially calcium so that is a big concern. Another big concern is it affecting my weight since my IIH is definitely affected by weight increases.
I really appreciate all your responses. Thank you.

Hi my first round of Lupron went great, I thought I hit the lottery, sure I had some side effects, but I felt better. I then went off of it and stared feeling bad again. Started it again and had my second Lap surgery to remove large cysts off my ovaries. I have felt horrible on this set of Lupron.....horrible night sweats, severe joint pain, not sleeping, horrible exhaustion. It's been miserable. But again the first time was great, I really think it depends on the person. Good luck!

I first got a lap last feb 14 and used birth control so that i would not get my period. the pain slowly started to go away and i felt better than ever. a friend who has endo went to see a endo specialist, whereas mine was just a gyno, so i paid the specialist a visit to get a second opinion. she told me i would need another surgery because my lap, according to where my scars were, was not extensive enough and viewing my pictures from my previous surgery, she said i would definitely need another lap followed by lupron. i did my research and was terrified of lupron. but for someone who is 21, it is scary. I've taken it since july, it is now march. i take the injection intramuscularly every 3 weeks and even with the add back therapy, which is like premarin and prover which are little doses of estrogen, the side effects still suck! i don't have hot flashes anymore but my mind is quite foggy and i don't feel like myself anymore. i am depressed and always exhausted. i love working out and used to go to the gym 4-5 times a week but now i never want to go. if i do go, I'm exhausted and feel out of breath or my muscles/bones will start to hurt. i went in today and complained and she wants me to try zoladex because its not intramuscular, it goes under the skin. its basically the same thing though, so i am quite annoyed. i miss being on birth control but she swears its awful for you and that she would never prescribe it for me. Does anyone have experience with the zoladex?