not endo if lupron doesnt work?

ok...... i may have just imagined this..... but i think i read somewhere, or someone told me, that if the lupron treatment doesnt help, then u dont likely have endo....... does anyone know if this is true or not? also, can u tell if lupron is going to help by the end of the 3rd month? (just full of questions tonight!) i dont think it is helping me at all, but my dr is still talking about me getting my next 3 month shot because it can take that long to tell if its going to help with pain and or bleeding.
anyone have any thoughts on this?

thanks! rhia

Rhia, have you had any laproscopic surgery to determine whether you actually have endo? Surgery is the only way to know for sure... I'm surprised you have proceeded to Lupron treatment without being definitively diagnosed. If you are not happy with the treatment, don't continue it. Maybe a second opinion would be needed if you haven't been diagnosed through surgery.

The people I've known who have done Lupron were in "fake menopause" almost immediately, and aside from the side effects felt better, but I guess not everyone is the same...

I took Lupron a year ago for endometriosis that was already diagnosed through laparoscopy. The first two months I still had awful pain and my period but then the Lupron kicked in. Even so I still had my period. Lupron does not work for everyone even if you do have confirmed endometriosis. Lupron lowers your estrogen levels but not all endometriosis responds to estrogen to begin with. I have also heard of women who did not respond to Lupron but switched to Synerel (not sure if spelled right) which is similar and that helped. I read a book called "Endometriosis Sourcebook" put out by the Endometriosis Associaton in 2004 and this goes in to good detail about Lupron and Synerel. You might want to find it. It has a lot of helpful information on Endometriosis. I got the book at Barnes and Nobles. Hope this helps!

Hi Rhia!

After I had my second ds my OB/GYN refused to believe that I was already having pain from endo. I was certain that that's what it was because she and my general doc couldn't explain the pain any other way. So, she told me that she would put me on Lupron and if the pain eased or went away, then she would consider it being endo causing my pain. Maybe that is what you read?

At any rate, if your endo hasn't been diagnosed via lap and the Lupron isn't making your pain go away-doesn't mean you don't have endo. It doesn't work for everyone. If your doc hasn't done the lap, I would suggest not taking the next Lupron injection and requesting that a lap be performed to diagnose. However, if you've already got your diagnosis and the pain hasn't eased with Lupron, I'd move on to another treatment option this time. Six months is the longest amount of time recommended to be on Lupron. If you take it longer than six months, you raise your long-term side effect possibilities a great deal. I don't have any numbers on hand, but I know from researching Lupron prior to using it that it is NOT good to take it longer than that. I experienced results (side effects) almost immediately and had some pain relief by the end of the first month. I had complete pain relief somewhere around the 3rd month. (until shot would wear off, then it was mild pain)

Don't think that you don't have endo just because this hasn't helped. Lupron is no diagnostic tool. My old OB/GYN had a very narrow minded approach to dealing with endometriosis and she had a small list of things that would make her suspect endo. In my situation, she proved herself wrong. I never got to see her again after my Lupron treatment began and it wasn't until recently (while going over my old med records) that I discovered that she had made a small notation on my chart that if my pain continued to improve with Lupron that a hyst would be the next step. Neither she nor her nurse ever told me this. I felt like I was just a crazy woman being pacified with a round of Lupron because the doctor refused to see me at all during that six month period.

What I'm trying to say is: watch out for signs that your doctor is one of these narrow-minded types. Be persistent in your quest to get answers to your pain. YOU will sometimes have to be your doctor's teacher.

There is no reason you should have pain if something isn't wrong, so keep on trying to find out what is causing it.

I hope this helps you, my friend.

HI Rhia

I'm not positive about the length of time it takes for Lupron to start working. I have read that for some women it may provide pain relief while they are taking the lupron injections, but once the treatment is stopped, the pain can return. It should not be given longer than 6 months. You can do a search and read more about Lupron under the search function on the right hand side of the message boards.

Here is a link to our endometriosis database. There may be some useful information.Endo click here...

I am also curious if your doctor has performed a laproscopy? That is the only way to positively diagnose endo. While the doctor is performing the laproscopy, they are able to remove much of the endo and provide some pain relief for many women.

I hope you find something soon to help relieve your pain.

I do not have insurance so i get "charity" care thru the womens clinic. I have had the worst time with these drs. up until we decided to try lupron, i had not seen the same dr twice. and every single one had a diff idea about me. one told me he thought i was just trying to get narcotics, and another told me that he thought maybe i should seek psychiatric help . (pain was in my head) finally after i called in tears telling the nurse i hurt so bad all i could do was lay curled up in a ball, they set me with one dr. They have not done a lap, and when i asked about one they siad it wasnt necessary! (not what i thought) when i agreed to try lupron, i was so desperate for some kind of relief, i was willing to try just about anything. I had done alot of research on it before i got the shot. I did not get my second 3 month shot. I go back next week to see them. My reg dr told me not to go back to them after this appt , and that he would not refer anyone else there after hearing my story! Yeah for him!!!!! i am currently waiting to go to another Doc Oct 3. It is a large teaching hospital so i am hoping they will do some actual diagnostic testing instead of guessing whats wrong. Since i had the lupron shot in mid june..... i have had all the hot flashes night sweats mood swings...... my period isnt quite as heavy but more often and longerand i stay so bloated my pants dont fit. and i still have most of the pain. even had a trip to the ER a few weeks ago the pain got so bad.
i am so frustrated, i know what should be done test wise, i just can't get anyone so far to do them. ***** not having insurance.