To Lupron or not to Lupron?

I just recently finished my second surgery for endometriosis that I have been battling for 13 years now. My doc found I now have endo on my left ureter that she was unable to remove. All doctors I have been to have said Lupron is the only other treatment option at this point.

I have been avoiding Lupron injections at all costs due to the side effects and things I have researched about the drug. (Plus its super ridiculous, not in my budget.. expensive!) Has anyone had any positive results from Lupron???? HELP!! I want to feel like a normal person again but I'm not sure where to go from here.

There are women with positive results from using Lupon, and there are women for whom it didn't work. Which will be the case for you, however, can't be determined prior to trying the drug.

Have you talked to your entire medical team about whether or not Lupron is right for you? As it can affect and/or create new health issues, all of your doctors need to be on board if you go this route. Even when my gynecologist suggested it, another of my doctors had to make the final call and he said it was not an option.

Lupron is not a cure for endometriosis and even if it does cause endometriosis to go into a remission type state, the implants can plumb back up after discontinuing the drug. Have you considered consulting with a doctor who specializes in treating endometriosis to see what your other options might be? Many of them do not prescribe Lupron.

I know it can all be very frustrating so my goes out to you. in there and know you are not alone!

Like Weiser said, there are women for whom lupron has worked and worked well, however I thought I would give my experience with it as I was not one of them.

The first month I was fine and my pain was much better. The second month my endo pain was better, but I started having a numbing sensation in my hands, joint pain, and horrible brain fogginess. I went ahead and tried a third injection, but my side effects got much worse and nothing seemed to help them improve.

My doctor decided that my side effects were estrogen related and even though we knew that it fed the endometriosis, we added estrogen back into my body because at least that pain was somewhat manageable while the side effect pain was not. We did conclude it was estrogen related because when I had the pelvic and endo pain, I did not have the other pain and vice versa when we were adding estrogen back into my system.

This is just my story though, and we saw it as the next step in a long line of things that we had tried. Also, if you decide to do it you can check with the company - they have programs you can apply for to assist with the cost. My insurance didn't pay for it and that's what I did and didn't have to pay a dime for it.

Anyway, that's my two cents. Good luck on your decision - just follow what's right in your heart.

Lupron worked wonders for me, but only when I was on it. My first period after the shot wore off was horrible and I ended up having my second lap shortly after. Like a previous poster said, your best bet is through a specialist. There are several around the country, and their is a list of sorts for them. Instead of burning the endo, which will just come back, they actually cut it out. With these specialists the recurrance rate is less than 5% where with the burning it's something like 90%. Not trying to scare you I did Lupron without the add back therapy. I think most Dr's do add back but mine felt like it would defeat the whole purpose since estrogen feeds endo.

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Originally Posted by lawgsa I did Lupron without the add back therapy. I think most Dr's do add back but mine felt like it would defeat the whole purpose since estrogen feeds endo.

To throw a kink in the works...

When estrogen add back therapy is given, it is in a dose low enough that it is not suppose to be an issue. In an ideal world, that might be true. However, some women cannot tolerate the side effects of Lupron without add back therapy.

But some doctors use progestin as add back therapy which shouldn't defeat the purpose at all since progesterone/progestin can be used to treat endometriosis.

But there is more, fat cells can produce and store a type of estrogen, there are dietary and supplemental means of adding estrogen to the body without realizing it, and don't forget that the endometriosis itself can create its own supply of estrogen.

Some doctors are prescribing aromatase inhibitors for their patients as those can stop the production of estrogen by not only the ovaries, but also the fat cells and endometriosis.

Don't we all wish we had a much simpler diagnosis?!

I can attest to becoming a success story once I had excision surgery with a specialist so that remains my best suggestion.

s

Lupron is working well for me. I decided to do add back to cancel out the hot flashes and bone pain in my hips but it was a bad idea! I began to have endo pain and then started bleeding. I discontinued the add back and starting to feel well again. I am going to continue to a full 6 month course and then will be on some form of birth control. I have two more Lupron injections to go.

I know it's tough to make these decisions. Yes, Lupron is very expensive, even with medical coverage. I feel it's worth a shot. You don't know how your body will react until you try.

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Originally Posted by Weiser To throw a kink in the works... But there is more, fat cells can produce and store a type of estrogen, there are dietary and supplemental means of adding estrogen to the body without realizing it, and don't forget that the endometriosis itself can create its own supply of estrogen.

I didn't know about the fat cells until after my hyst and I started reading on here. It's weird thought, I'm about 50 lbs over weight and my menopause started when I was still in the hospital.

From what I remeber Lupron ould have been very expensive if I hadn't had insurance. I'm not sure how they worked it with my insurance but I don't think I paid anything other than my normal office visit copay for each shot. I also wanted to throw out there that Lupron helped me so much because 90% of my pain was during my periods. After my hyst I was diagnosed with adenomyosis. I did still have some ovary pain/cysts while on Lupron due to the PCOS but it was nothing compared to what I was used to.

Thanks ladies! I guess I just have to weigh the options with my doc again. Thinking of trying the ends diet in the mean time and see if they're are any positive results. I have pain all the time and haven't had a period in three years- something's gotta give!

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Originally Posted by Jemerple I guess I just have to weigh the options with my doc again.

Good plan!

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Thinking of trying the ends diet in the mean time and see if they're are any positive results.

It is a good idea to talk to your doctor before making any major diet changes. Even when making positive changes, negative results can sometimes occur as your body rebels to the drastic changes. But this can definitely be worth a try!

As an FYI to all, not everyone's fat cells are as proficient and making and storing estrone. Additionally, not all endometriosis implants seem to have the same estrogen receptors or be that efficient at producing estrogen. Thus, even two women with the same stage of endometriosis, with implants in all the same places, and both of the same weight and body structure could still have two different situations. One may have fat cells and endometriosis which are both very good at churning out estrogen, and the other may not have either one producing anything. That is part of what makes this so complex--it can be very individual besides everything else!

Jem,

I can only give you my experience. I went through many years of endometriosis and more Lupron injections than the manufacturer recommends. I started thinking one day and realized that when doctors only burn off the surface layer of endo with the laser and give us Lupron for 6 months..You know it just comes right back again. Hence, the doctor gets to do more surgery and give us more Lupron. Great business for the GYN's, right??? I finally decided that I would NOT have another "light laser with LUPRON." Instead, I searched high and low until I found a GYN who was willing to do the "deeper" surgery needed. He cut out the endo to the root!! Guess what?? It CURED my endo. My endometriosis was completely gone for 15 years. I recently had a hysterectomy for FIBROID tumors - where my current GYN found only the fibroids and scar tissue from all those previous "laser light" surgeries. My current (Georgetown educated) GYN agreed with me..Lupron is not the way to go..Finding a surgeon who will cut out the endo to the root is THE most effective way to eradicate the endo. I only wish I had known sooner...I was not able to have children thanks to all the laser light surgeries, Lupron and resulting scar tissue. I personally cannot recommend it to anyone. Additionally, is anyone aware that Lupron is used as a chemotherapy drug for men with prostate cancer??!!! No doctor EVER told me that. I did not find that out for many years. I also did not realize the long term side effects (particularly the severe bone loss with all the Lupron I took over the yrs).