Lupron and Endometriosis

Updated on September 27, 2010
K.K. asks from Akron, OH
10 answers

Hello Momma's... Ya'll have been SO helpful in the past, and I just have to ask this question. I'm going to try and make a very long and emotional story quite short - hope it all makes sense. My husband and I have been trying to conceive for about 3 years - with no luck. Two years into trying to conceive, I had a very serious car accident, and at the ER, they found a large cyst on my left ovary. Told me to follow up with ob/gyn when I got home. (I was out of state at the time.) Ob/gyn watched it for a bit, thought it might be a Clomid cyst at first, I was in the middle of a cycle at the time of the accident. Planned to have the cyst removed a couple of months later (after the holidays), because it didn't seem that serious. Ended up in the Er - having emergency surgery to remove the cyst - turns out they had to remove the entire ovary and the left fallopian tube as well. I have Stage IV endometriosis. Had NO idea there was anything prior to the surgery other than a cyst. The cyst they thought was only 8cm, actually turned out to be bigger than a softball. Yeah. Woo hoo. Fast forward - went on bcp to try and slow any recurring endometriosis, then ended up cycling again on Clomid because I never didn't start ovulating after completion of bcp cycle. Ob/gyn sent me to a reproductive endocrinologist (re) because he felt he (ob/gyn) was just spinning his wheels. The re did another examination - and found 3 large endometioma (endometrial cysts) in my remaining right ovary. The doctors can also feel tissue behind my utereus. So, basically, I'm petrified. The only true way to cure endometriosis is through a hysterectomy - but I'm only 29. I'm not ready for that! Honestly, taking having a baby out of the picture entirely, I'm still scared beyond belief. One of our few potential avenues prior to complete hysterectomy is Lupron. But, I have heard so many horror stories - that it scares me almost as much as the hysterectomy!

My question is two-fold ... Have any of you ever taken Lupron, and if you have, what were your experiences like? Why did you take it - and did it work with what your doctor was trying to accomplish??? Any stories, whether good or bad, would be appreciated greatly. Thank you so much for even reading!

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answers from Bloomington on

My daughter tried Lupron and was very sick. She only had one shot and her migraines became so bad that she ended up in the ER. Besides the hot flashes, mood swings and all the other nasty side effects. Based on how my daughter felt while on it, I would never recommend it to anyone.

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answers from Cincinnati on

I think too often doctors will tell women that a hysterectomy solves everything but it really doesn't and you should look into getting a second opinion.

I'm not a fan of Lupron. I've never been on it but I have a friend who currently is. Her doctor gave it to her when she was having a procedure done and it was against her will. She had some nasty mood swings and severe hot flashes. Lupron can have some nasty affects on your body. Yes, it does help with your endometriosis but there are other avenues you can look into first. If you are considered Lupron make sure you know what the pros and cons are too it. It pretty much will force your body into early menopause.

My oldest sister has endometriosis, as does my mom. I've watched my sister struggle with the pain of it most of her life and she has a surgery done every few years to clean her out and all of that. But she refuses to go on Lupron. She knows it could help but she refuses to because of the what it can do to your body and the long term effects. I know one of them that from the get go it decreases your bone density. I'm sorry to say I don't know what else it does but my sister works in the medical field and knows more than what the doctors will typically tell you.

Some women have been able to get pregnant after being on Lupron and some can not.



answers from Columbus on

I took Lupron as part of an IVF cycle to conceive my son. The side effects were very crappy, but you only have to deal with them for a bit, so all in all worth it!

I did have hot flashes and was very moody. I think Lupron should just come with a prescription for an antidepressant and I highly recommend that you get on one before starting the Lupron.

If you aren't aware, there is a great online infertility community at Lots of advice, resources and people who are going through or have gone through it!

good luck!



answers from San Francisco on

A friend of mine took it after the first surgery to remove a cyst and endometriosis. It puts you straight into menopause with hot flashes and everything. In her case it didn't help and about 8 months later she was done with the pain and told them to remove everything rather than just clean her out again. I wish I had a better story.

I have thought I have it but our insurance wouldn't test me without me doing lupron or birth control. I got on the pill and the pain subsided to a tollerable level which is where I've been ever since. After having 2 kids my cycle isn't as bad as it was before.

I wish you the best of luck.



answers from Cleveland on

I have been on Lupron twice. I had trouble Trying to Conceive and found out thru a Laproscopy that I had 3/4 endo. They removed it during the lap, and then I was on 6 months of Lupron, took one month of the pill, and then started shots for Super Ovulation (or ovulation induction). I got pregnant on the 4th month!
For our second child, I tried on my own for a year, then did 6 months of Lupron, 1 month of pill, then Ovulation Induction shots, and got preg on the 2nd month.
We have a wonderful 7 year old boy and 4 year old girl.
Just saw my gyn yesterday to discuss my options, bcs we are done with kids, and I am having terrible periods.
He said that they now do "Lupron with add it" which is a monthly Lupron shot, and then a daily pill to help prevent hot flashes and bone mass loss.

When I was on Lupron, I did have hot flashes and a lot of hip pain (which the docs did not think was associated, but it happened both times I was on it, so I think it was). I also went on Zoloft, which was recommended - I did not take the recommendation at first, but after 2 months, I changed my mind (at my hubby's urging :)
I thik it was bareable then, not my favorite period in life, but with the "add in" now, I bet it is better. Knowing the gift that may be waiting for you in the end makes it worth it.
(PS - I think I may still opt for the hysterectomy for myself now, at 40, and knowing that I am finished with kids, the idea of being on Lupron for a long period of time, with no Gift in site is not appealing to me)
best of luck, hang in there!



answers from Muncie on

Please do not get a hysterectomy to "cure" endometriosis! There is no cure and there are studies out there that show that many women who got a hysterectomy as a result of endo STILL experience the symptoms. Check out the Endometriosis Association...they have a ton of information out there. I was diagnosed with endometriosis at 19 (I am 26) after suffering for 5 years prior because I was "too young" to have the disease. I have heard positive and negative stories about Lupron. I myself chose not to take it after laprascopic surgery at 19 because the side effects were very scary and I didn't want to risk permanent menopause before I was ready to conceive. My surgery rid of the endo up until a few months ago. I have started developing cysts and the doctor is concerned that he may need to take my left ovary and start aggressive treatment (Lupron) to save the right. Despite being on bcp for 10 years, except when conceiving, pregnant, and breastfeeding. I still do not know if Lupron is the answer for me. Good luck and make sure you are 100 percent confident in your choice.



answers from Cleveland on

I went on Lupron prior to having surgery and I had horrible hot flashes and night sweats. I then had to take it again as part of my IVF cycle which wasn't as bad because it was in smaller doses than with the surgery. No matter what the side effects are they are all worth it in the end if your desire is to have a child.



answers from Cincinnati on

If your reproductive endocrinologist is only giving you hysterectomy as an option, please get a second opinion from another one! I went to Jennifer Thie in Cincinnati after being diagnosed with a softball-sized ovary on one side and lemon-sized on the other and I wanted to get pregnant! I had no idea I had endometriosis (no pain), but Dr. Thie did surgery and saved both ovaries. It was part of preparing for the surgery that she put me on Lupron and yeah, had hot flashes, but not that big a deal for me. It took another year of trying and ultimately getting to IVF, but I had twins on my first attempt, so it was all SO worth it. Don't give up yet!



answers from Dayton on

I have not had the cysts, but did have SEVERE endometriosis. In fact, when they discovered it during a laperoscopy, it was so severe, they just closed me up and scheduled a laperonomy (6 inch incision) to clean me up. Following that larger surgery, I went on Depro Lupron shots for 6 months. It was not fun, I will not lie to you. I had hot flashes, night sweats, BIG mood swings, etc. It DID clear up the rest of my endometriosis (I've had two more laperoscopies since with no signs of endometriosis found) but it didn't help my pain level (my biggest complaint second only to more than a decade of infertility).

What ended up helping me the most was bioidentical hormones. If your RE or OB/GYN isn't supportive of this option, I would find a Dr. who is. It has helped me SO much. I still have never given birth (adopted a son), but i FEEL so much better.

If I had to do it all again, I would do the surgeries and the Depro Lupron but then I'd start the bioidentical hormones as soon as possible. I am not a doctor and can't recommend what you should do, but that's my story. If you have any questions, please feel free to PM me.

Blessings to you.



answers from Dallas on

You didn't say how long you plan to go on Lupron. I have been on it for End. for several years, then also with several IVF cycles:

For Endo- it worked great! (but you won't be able to conceive naturally during this time because it literally puts your body into menopause) Yes, I had bad hot flashes and gained tons of weight (don't ask how much - but I lost it after I stopped the shots), but the funny part is after a few years on the shot, then stopping - heck, I forgot I even had it. That's how great it worked for me!

For IVF - You're really not on it long enough to do anything. However, it's true that during an IVF cycle you'll probably pick up a couple of pounds and be very emotional. But it's soooooooo worth it!

We have our miracle son as a result.

I agree with Christi on why NOT to get a hysterectomy....not to mention you want kids...Try IVF. There are always "studies" that, if you qualify, will reduce the cost of the cycle.

Good luck and God Bless!

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