Endometriosis Support Group

I did the same thing you are doing before I decided to start Lupron, and the only thing I found was that it affects every woman differently. It seems almost all women get hot flashes/night sweats, which all in all are not that bad, in comparison to the other side effects that could occur.
For me, I'm battling the "duh" factor. My short term memory is shot and I have a really hard time focusing. Mood swings have become an issue also, and it's difficult to control. I feel like I am a prisoner in my own body/mind. Poor appetite, ( oddly enough I am craving chocolate like CRAZY lately! It seems that is the only thing I am willing to eat, the rest of the time my husband makes me eat meals ) when I'm not having a hot flash I'm completely chilled to the bone! ( which is most of the time ) I get alot of headaches and can last for days. I don't know if this can go along with mood swings but I get irritable around alot of people. KristieK and I speculated that it only happens when we are around others who are "grumpy" or "crabby", almost like how an empath would react. I'm more at peace when it's just my husband and/or me.

Now please don't take this as something that will happen to you, every woman is different. I've heard many success stories with Lupron with and without side effects. Some feel it's an even trade to get relief from the pain. If you haven't yet, check out the "treatments" part of this site and look up Lupron, there are pages of reviews. One piece of advice I will give you is to NOT let your doctor pressure you into it. If you are uncomfortable with it, don't do it. Wait and decide for yourself.

Oh, I FORGOT to mention ( LOL! ), with all of what I'm going through with the side effects, the pain remains.

it differs from person to person but magbe its worht a try as nothing has helped you so far, Hope you start to feel better asap/

Thank you, I'm kind of half and half. My doctor hasnt forced anything on me, but I'm surely running out of options. I'm just in a good place emotionally in my relationship and that is what I think I'm scared of the most, ruining that with all the hormones.

I have been on lupron for 3mos now. my pain from my Endo is completly gone!! i mean all of my symptoms are gone! i was having UTI like pain too from my endo..that also is gone.

I do have all of the same symptoms SSwraning has from the Lupron though.

mood swings, depression, memory problems, hot flashes, dizzyness, vaginal dryness, decreased intersted in sex (who am i kidding..no interest in sex!) insomnia..there are a boat load of symptoms that comes with the lupron, but like SS warning said. you need to weigh this desision and choose what is the best one for you! I am so happy that my exruciating pain is gone! i walso was vomiting alot and neaseated. that also is gone from the lupron. so for me..for today..its worth the side effects.

good luck..and if ever you need to talk, im here. xxx ~wendy

Lizzie - I cannot say how Lupron will effect you, I can only tell you my experience from it. My first 2 months on it, I felt ok, I had some muscle twitches and was super tired from it, but that was it. A few days after my 3rd shot, I did not feel right. I was so exhausted, my entire body ached, and I actually had to drive home from work using the palms of my hands because my fingers would not bend around the steering wheel. It took a week of me calling to even get my doctor on the phone, only for him to tell me that I needed to go see my regular internal medicine doctor to get this figured out.

Long story short, I had to resign from my job because my body ached so bad I could not even get out of bed. I was in bed for 6 months after that. It took me a year a a half to get myself back to work and now I can only work part time because I ache from the simplest things. It takes my muscles about 2 weeks to heal from something as simple as lifting a box.

I dont know if I will ever be able to work full time again or If I will ever be able to do the things I used to do. I have been diagnosed with thyroid problems, fibromyalgia, and fluid in my heart. Before Lupron, endometriosis was my ONLY diagnosis. And the Lupron did not even work, all my cysts and endo came back within 2 months.

I know some women have good experiences with Lupron, but there is a petition going to Congress about Lupron and its side effects, there are numerous Lupron victim websites. All I saying is that a woman cannot know how Lupron will affect her body until she tries it. But I wish to God everyday that I had not.

Please weigh all the pros and cons and make an educated decision for yourself. Good Luck!

I was offered Lurpon also but recently decided it was not for me and I would like to share why with you. I have had eight major surgies over the last nine years. I have severe endometriosis and scar tissue adhesions. My last procedure last month discovered malignant endo in my intestines, what does that mean not really sure going to an endometeriosis clinic not until december.Back to Lupron if you have severe endo lupron is only 26% effective according to a study. The side effects are more intense than endo itself. It is a trial to see how it will work and if after all that surgery most likely will still be needed. The side effects last years even after the last injection. Too many negatives with it. I can't imagine adding pain to the pain that is already there. I think you need to find out what stage your endo is at to determine what steps you might want to consider. There's a book that has helped me and my decisions, recommend it. The Endometriosis Sourcebook by Mary Lou Ballweg and the Endometriosis Association $16.95 at major books stores. I know it's not easy making that decision. I wish you the best in what's best for you and your situation.I'm hear for you if you have more questions or want to talk.

I agree whole heartedly with SS Warning -- from all of the research I did over many weeks it seems to me that the general idea I got was that every single individual responds differently. There seemed to be women who had a wondeful outcome, women who had a so-so outcome and then those who had the horrible outcome. But the thing is, there are those statistics for every single medication out there. EVERY SINGLE one. I'm on Topamax for migraines, and I started taking it without doing a whole lot of research (I was 22 at the time) and I had very minor side affects and the drug has changed my life for undoubtedly the better. Had I read the reviews and the warnings... maybe I wouldn't have taken it.

So I don't really know what to say. I don't want to advise someone either way when every person's outcome will be different.

For me, it wasn't an option. My insurance simply refuses to cover the medication until I try "X,Y, and Z" (BCP's, Depo Provera, & Danazol) first and since at least BCP's and Depo are out of the question, I'm stuck between a rock and a hard place.

But, like SS said, you should never let your doctor make you feel pressured into doing something. Take your time... review and research medications. It will make you feel better about everything when it comes down to it. Be your own advocate.

I am not sure if I posted this in another forum, but if you have not had children yet you might want to look into any after effects documented from using LUpron beforehand. I know the manufacturers and doctors insist it is 100% safe, but from things I read Lupron, and even the BCP can cause problems with fertility for short periods in some women afterwards.
I was also told Lupron was the next step in treating my endo, but I refused it in order to try for kids first. It has been hard not treating the endo while we TTC and I plan on looking into Lupron afterwards, so thanks for posting this.

P.S. I forgot to add, there is a book with good info on treatments called "Living Well With Endometriosis" available on Amazon.