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To Lupron or not to Lupron...that is the question To Lupron or not to Lupron...that is the question

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Unread 08-22-2007, 11:29 AM
To Lupron or not to Lupron...that is the question

So, after all of this...colon x-ray..upper G.I. business...bladder looked at...

My doc has now suggested, after the suggestion of a hysto, that maybe an option for me is Lupron. Now, from what I have read, the side effects are a rather long list of not so pleasant items. So, here I am throwing it out to those I think are the real Experts! You! If you have been through this and you can tell me about its triumphs or tribulations, I am all ears listening to those WITH ACTUAL EXPERIENCE instead of listening to a list from Web MD.

You are all so wonderful for the support you provide.

Thank you!
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Unread 08-22-2007, 12:27 PM
To Lupron or not to Lupron...that is the question

I am being treated for Endo returning after TAH with Lupron injections. I am on week 5 with my injection. My story is a little twisted because the 1st shot I got was with a previous doctor who did NOT prescibe me the Add Back Therapy that is supposed to relieve you of the side effects. So I was very distressed with Hot Flashes, Night Sweats, Joint Aches, Insominia, etc... I went to get another opinion and my new doctor is still wanting me to continue the Lupron and now I got the 3 months shot but she DID give me the additional Add Back and WOW what a difference!
I can't really say that the Lupron is working yet because it is still too soon to know. Sorry I couldn't be more help to you. Wishing you well.
Unread 08-22-2007, 08:07 PM
To Lupron or not to Lupron...that is the question

i have large fibroids and lupron was suggested to me as treatment to decrease the fibroids and possible excessive bleeding post hysterectomy. I have also read alot about the possible side effects, like depression. my gyn wants to also start me on a antidepressant with the lupron to avoid a possible depression. currently, i am healthy with no medical problems and take no meds except for yaz oral contraceptives. i don't want to possibly suffer from depression as a side effect because of a medication that may not work anyway. i have 2 friends that were started on lupron to possibly shrink their uterine fibroids and it didn't work. they went through misery for 3 months for nothing and still had to have a hysterectomy. i understand your feelings.

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Unread 08-23-2007, 08:44 AM
To Lupron or not to Lupron...that is the question


Lupron is prescribed for a variety of different reasons and its success can depend on why it is needed ...

I had, apparently, the largest fibroid my surgeon had seen in 40 years and he prescribed Lupron to shrink it and thus make the surgery safer. My fibroid shrunk by 66% and he was able to squeeze it through an abdominal incision. He told me (and I have also read) that Lupron, prescribed for this reason, has a 99% success rate. Lupron only shrinks fibroids temporarily ~ as soon as the ovaries start working again, they "feed" the fibroids with hormones and they regrow.

The drug basically induces a temporary chemical menopause. I experienced hot flashes, aching joints and dry skin ~ but it was nothing I couldn't handle ~ which all subsided very quickly 4 weeks or so after the final injection.

My experience was a totally positive one. Obviously, everyone is so very different and the reason for needing the drug plays a large part too in its success.

Wishing you all the very best with your decision.

Unread 08-23-2007, 12:54 PM
To Lupron or not to Lupron...that is the question

Lupron was the right choice for me, even though I was worried about the side effects as well. I got a 3-month dose the month before my LSH/BSO. It really took away the pain I had from endometriosis and adenomyosis, plus it made the hyst. less traumatic for my doctor, with minimal blood loss.

The first month I didn't have any add-back therapy and I noticed a lot of annoying side effects (particularly insomnia, hot flashes, vaginal dryness and joint pain). The 2nd month really has been a breeze (for me) as I've been on a CombiPatch of estrogen and progesterone mixed.

However, my 3rd and last month on this shot began TODAY (not that I'm counting the days or anything ).

Lupron certainly is not for everyone, but it did help me.

Unread 08-23-2007, 03:12 PM
So I guess then my question becomes this...

In reading the responses, it looks to me like the use of Lupron is two-fold:

If the doctor is using it as a way to minimize the surgical aspect of a hysto then the Lupron injections seem to be a good thing...however

If the Lupron is being used as a medicine to curb or alter the endo then it hasn't seemed to help those who tried to use it in that way and ended up having a hysto anyway...

Is this accurate? Please respond. I am very concerned about starting a drug that has the side effects that this one does unless it is to shrink the uterus or anything else to make the ultimate outcome of surgery less than what it has to be.

Thanks in advance for the help.
Unread 08-23-2007, 03:34 PM
To Lupron or not to Lupron...that is the question

The use of Lupron has its pros and cons for sure. And we each have to make our own individual decision about using it.

When reading information regarding Lupron it is important to remember human nature. Generally speaking, people do not always take time to find a place to relate postive experiences about anything. For instance, while the medication I take daily has toned down my migraines considerably, I have not written the company to tell them how much their medication has helped me. I have not found migraine forums and posted about how everyone should try this medication. Actually, I really don't talk to anyone much about it except my neurologist. Similarly, I haven't even written the owner of this site (my boss!) to let her know how much I love my chillow I bought from the HS store! Often we use the things we like and never say anything about them except in passing to friends and family.

But if we don't like something, we may write the company, a newspaper, our congressman, start a blog, post anywhere we can, and let the whole world know how terrible the product was. That just seems to be human nature.

So, I say all that to say that you may read and hear more negative about Lupron than positives. It does have side effects as does most medications including the one I take for migraines. I know when I was looking into using Lupron a few years ago because I was having pelvic pain we believed was from endo, I found a lot of negative info and not much positive.

Since I ended up not being able to use Lupron (or Depo Provera which some women find is also helpful) because of the above mentioned migraines, I can't give you a first hand experience about how it affected me. But I can tell you why it was suggested for me. I was already five years post hyst and my doctor was looking for a way to find out if endo was the reason for my pelvic pain WITHOUT having to do another surgery as each surgery can create more adhesions which we also believed were part of the problem.

Because my migraines were so out of control when my GYN and I were discussing Lupron, Lurpon and all similar medications and hormone or hormone-like medications were ruled out (and are still ruled out). Basically I had to just keep suffering with the endo pain uless I wanted to risk making my migraines worse. I chose to suffer with the endo pain as it was more tolerable than my migraines. To this day I chose to deal with the endo pain as it comes and not take the chance of increasing my migraines.

So in my case, Lupron was suggested as a way to find out if endo was really the problem or not. This could be what your doctor has in mind for you.

I had to weigh the personal pros and cons for me and then decide what to do with the help of medical advice from my doctors. Obviously in my case Lupron was not going to prevent a hyst since I had already had my hyst, but it might have given us a better idea of whether or not I needed more surgery. Thankfully, my pain has decreased, possibly due to medications I take for other health issues.

I wish you the very best as you try to wade through all the information and decide what is right for you! If we could only look down the road and around the bend to see how things turn out it would sure help with our decisions today! But since we can't do that, we have to rely on doing research, asking questions, and talking to our doctors all in an attempt to do what is best for us individually!

Unread 08-23-2007, 04:13 PM
To Lupron or not to Lupron...that is the question


I did two 6-months round of Lupron (years apart) and both times Lupron worked wonders for my endo. Yes some of the side effects were a little tough (headaches, insomina) but for me it was 100% worth it. Also note that I was like 23 years old for the first round and 26 years old for the second round...not sure if age plays a part or not.
Another thing that has help 200% for my endo is a medicine called Aygestin. I currently take 10mg now but I think I started out at 2.5 mg. I have NO periods so no problems with endo. I LOVE not having a period. NO painful periods, NO painful sex. I have been taking the Aygestin for about 4 years now and have had ZERO problems!!

FYI: You can always try the Lupron. If the side effects are too horrible, don't get the next shot. For me, it was worth it!
Unread 08-23-2007, 04:42 PM
To Lupron or not to Lupron...that is the question

Thanks for the replies. I guess everything has its ups and downs. I will continue to research and take all suggestions very seriously. Love this place I can go and get information from real women! Thanks again!
Unread 08-23-2007, 04:44 PM
To Lupron or not to Lupron...that is the question

Also, just wanted to make clear that my surgeon gave me the option to just do Lupron for 6 months and not even schedule any surgery right away. He felt that I was close enough to menopause (age 46) that perhaps the positive effects of the Lupron would continue after I stopped it. He said it helped 85-90% of women's endo pain to feel better.

In my case, I decided to get the hyst. and then he told me that he still wanted me to take the Lupron in order to help reduce the trauma of surgery and to help there to be fewer adhesions, and to help prepare me for the surgical menopause that was coming... as well as to take away the bulk of the pain that I was feeling. And all those things were true!

For me, it ended up being the best plan to have surgery, as I told him (almost as an afterthought) that I had a goretex patch on my uterus anyway, so I might as well get the hyst. Well, that patch was badly adhered to my bowel and had to be carefully dissected off of it. Lupron could not have made that patch disappear!!

Of course, this decision is not to be made lightly, so you've come to a good place to do your research and ask questions. But you'll have to decide for yourself in the end if this is the best choice for you!


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