Thread: where's all my endo people at?

Has anyone ever been on Lupron Depot? I finally agreed to try this treatment. My pain just won't go away & I'm exhausted. I started the injections on Thursday & seriously, I feel terrible. I know they say you get worse before you get better but this sucks. I'm super freaked out by the possible side effects too. The online forums make it all sound so terrible--30+lbs weight gain, acne, hot flashes...
Tell me its not this bad...cr.:

One of my best friends is on a course of Lupron now (has been for almost a year solid). The first month is rough, but after that her energy doubled, she lost weight, her skin is totally clear and she actually feels GOOD (which she hasnt for YEARS). She DOES have the hot flashes though, but she is willing to live with that for all the benefits she is getting.

I posted a question about lupron just a couple of months ago--I think I put it in the 'off topic' section. I chose not to get the lupron shots because I already have an autoimmune thyroid problem and autoimmune hearing problem--so from my research, I thought I'd better not take such a powerful drug. I'm in a situation where I'm desperate to have children...no success yet--and I didn't see how the lupron would help that situation at all! My endo was pretty severe and I had extensive surgery to have it removed (although it was only lasered off). It was after the surgery that it was suggested I go on lupron for 6 months but chose not to. Everyone reacts differently to medicine-I hope you do as well as Basina's friend! I suppose though, if you feel really bad, you can always stop it. For instance, I found out that my insurance would only send lupron directly to me to bring into my dr's office to have the shot given to me - and they would only do it on a month by month basis because there are many women who choose to go off of it--don't think you can't decline future shots if you aren't feeling well!

I did a six month course of Lupron a couple of years ago. To be honest, it's pretty nasty stuff but it was the only hormone that made the endo go away. I had hot flashes really bad and felt cruddy at first but I did adjust and got used to handling the hot flashes. If you really need the relief, the side effects are worth it. And don't forget, just because you start the shots doesn't mean that you have to finish them if it gets to bad for you. And as for the doctor recommending it to try to get pregnant, the thought may be that the side effects of the Lupron may have less of an impact on getting pregnant than the symptoms from endo. Having endo is very fusterating. It feels like the doctors are just throwing treatments at you and hoping that they work. When it comes to medical treatment, that's really not where I want any guess work. :)

Did you look into having excision surgery from a qualified endo expert? I think this, and dietary changes, are a better long-term solution than hormones, because what happens if you stop getting the shots/taking the pills?

Still, if it works best for you, good. I hope it does. Endo sucks!

- Leela

they only put me on one injection of it and it was a godsend. stopped a 3 week long endo attack.

I used to work for an oncologist that put a lot of his prostate cancer patients on Lupron. I don't know how the dosing is different for men, but mostly, they complained to me about the hot flashes. I don't remember seeing any of them get acne!

I have endo, but since getting a Mirena two years ago, it's been pretty mild. I hope it stays that way! Best of luck to you!

I have endo but have been on continuous birth control so I don't have periods or symptoms. But I also, of course cannot, get pregnant.

Apparently there is a wonderful endo doctor here in Oregon, Dr. Redwine, who is supposed to be able to do wonders....

Dr. Redwine is one of the top doctors dealing with endo:

Endometriosis Surgery and Treatment in Bend, Oregon

and so is Dr Kanayama, the man who performed my excision surgery in October:

gynecosurgery.com | Home

Immediately after the surgery, my endo changed completely. It was like I had a different body. Suddenly, I understood what a normal period was supposed to be. I'm now pregnant, after years of suffering and horrible pain, and a year of unsuccessful attempts. Dr. K. was able to do what no doctor had been able to before. I also radically changed my diet, which made a huge difference.

I also had fibroids, one of which was removed during surgery. After the surgery, I started taking this:

Fight Endometriosis with Endovan

and within a couple of months, the remaining fibroid was smaller, according to Dr. K. I can't recommend excision surgery enough, along with the dietary changes. What you eat has a huge effect on this illness. Physically removing the debris and obstructions of endo is extremely important, and keeping them from returning, by eating foods that support that goal and avoiding ones that don't, will help tremendously.

If you go for surgery, just make sure it's excision and not laser. I had laser lap 9 years ago, and later learned that it makes endo worse!

- Leela