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Any advice, positive or negative about taking Lupron?
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Any advice, positive or negative about taking Lupron?

Hi,

I had a Laparoscopy last Monday (January 12th) to have a lesion removed.  Turns out my lesion was not removed apparently because my case of endometriosis was pretty severe with lots of adhesions and the operation ended up focusing on separating the adhesions.  Apparently my surgeon tells me that I will need another surgery to remove the lesion as well as my left ovary.

He also tells me that I should start Lupron injections as soon as possible and wants to start my 1st injection as son as I see him on the 27th.

So prior to making a decision I would love to hear about other women who have been on lupron.  Would you recommend it or not.  Any positive feedback?  Negative feedback?

Pain-wise, prior to my surgery I was not in much pain from endometriosis, some pain but not terrible.  So my doc does not seem to be prescribing this treatment to relieve pain but rather to prevent lesions and adhesions from getting back I think...

Any feedback from anyone who has had Lupron injections would be very appreciated.

Thank you.

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136956_tn?1363091289
okay, so before i went to see the doctor that did my surgery i went to 7 other ones. I was told to take the lupron and that surgery wouldnt help.  I refused to take it. I went on the pill (marvelon21) continuously.  It is best to have a specialist that is in this field because a good doctor will not have to remove a thing unless absolutley necessary. I had stage IV endo. if you read my profile it has it all there what happened and all.  It was covered everywhere and I was in severe pain, nausea,daily headaches, miagraines and I just generally felt sick all the time. After my surgery the doctor convinced me to go on it and even with all the research about it and all the negativity i went on it anyways.  I was on it for 3 months in a row. I had such bad joint pain and vaginal dryness that led to severe bacterial infections i came off it. I was still in pain so i went back to my doctor about 6-8 months later and he wanted me to do it again. Because the pain was so bad i did it, this time big mistake after the third injection i went into such a deep depression and i was aggitated and mean and angry it was crazy.  It took a while for that to get out of my system and I heard that with some people the side effects dont go away.

My personal opinion, try the pill even marvelon very low dosage and it has helped me. Do not take this drug please, it only suppresses your endo and doesnt heal just like the pill, but with the pill you dont get all the side effects. If your pain is minimal once again I would say to please dont do it.  it is not worth it.

I also wouldnt let them take your ovary. If he is a good surgeon he wont have to take it.  there are ways around it. Taking some of it, removing the cyst from inside the ovary, with electro-coagulation.  I am telling you mine was so severe i had my ovaries wrapped around my uterus filled with chocolate cysts, deep rectovaginal endo, bladder resection etc.. it was covered all the way up to my lungs, and he removed all the endo and no organs. Please get a second opinion.
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136956_tn?1363091289
also some people dont believe in the laser electro-coagulation because it should be banned.  people say that excision surgery why they cut not laser is better. Knowing that now after my surgery i would have gone with that method
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Avatar_f_tn
Hi there.  I was operated on December 27th because I had a 6 cm cyst in my left ovary of unknown etiology and fibroids.  What it came out to be was a chocolate cyst or an endometrioma and the GYN was able to remove it and preserve my left ovary.  I also didn't have any real symptoms related to the endometrioma, but they had ran a cancer marker (CA - 125) and it had come elevated.

So, after a year of dealing with the situation, I found a doctor who was also interested in preserving my fertility since I don't have kids and still wish to do so.  He did a laparotomy (bikini line incision) and was able to preserve both ovaries, tubes and my uterus.  He recommended the 3-month lupron shot and they inyected me like two weeks ago.  This medicine puts you into menopause and it can cause you hot flashes, be moody, headaches, and other symptoms, but every body is different.  Luckily I only have a little headache in the evening and I feel a little tired if I don't sleep 6 or 7 hours, but in general, I feel fine.

They referred me to this site: www.lupron.com where you can read about this medicine.

So if you are doubting about the treatment, get another opinion.  Thank God I did that and it turned out for the best.

Best wishes,

Neta
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136956_tn?1363091289
ps.  I once read something somewhere in regards to Lupron and the side effects/pros and cons and i wont forget it.  People that have had success go on to living there life so you wont see too many people post how good it worked for them, the majority will be how many people it effected because they are still suffering.
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Avatar_f_tn
I have been on Lupron for six months at a time twice.  They were years apart.  I have also had 4 laps.  The Lupron worked wonders for the pain for me.  The side effects of the mood swings were hard as was the hot flashes but when I was on it when I was in my early 20's it was way harder than when I was on it in my late 20's.  I think it can be great especially for severe cases of endo.  Are you hoping to get pregnant.  I have a friend who had surgery due to infertility and found severe endo.  They put her on Lupron 6 months because the endo was so bad they couldn't do anything surgically and then she did IVF and got pregnant on her first try...thanks to the Lupron.  So there is good and bad and all I can say is it varies from person to person so if you think it may be worth and you trust your dr try it...you can always stop!  Good luck!
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Avatar_f_tn
Thank you so much for everyone's the feedback, I so appreciate.  I am having a really hard time making up my mind about this and my doctor's appointment is this coming Tuesday...  I tend to be against it, but at the same time I do not want to compromise my health if indeed I really need it...

A few things I still wonder: Lupron does not actually treat current conditions, right?  It just prevents additional lesions or adhesion to develope, correct?...

Also, what happens after the treatment?... How long does Lupron affect the body and prevents new development of endro after the 6 months treatment?  Might new growths/lesions/adhesions come right back after the 6 months treatment?

To answer mkseym, I would like to be pregnant.  Would Lupron treatment really help for that?

I've ordered a few books to learn as much as I can and I am currently fascinated with a book by Mary Lou Ballweg entitled: ENDOMETRIOSIS, The Complete Reference for Taking Charge of Your Health.  

I am learning a lot, but I am not quite sure my doctor would argree with some of it...

One of the best treatment, according to this book, would be immunotherapy.  Has anyone done that?...  It emphasize the connection between the immune system, allergies and yeast infection, and seem to imply that endo will be best treated by treating those issues.

Anyone has any experiences with that?...

Thank you again SO Very Much for eveything!!!
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Avatar_f_tn
To answer your question yes Lupron helps with getting pregnant.  It also shrinks adhesions you have already it does not just prevent new ones so the end you have will hopefully shrink with the Lupron and make it more likely for you to get pregnant. Like I said I had a friend who did this and she got pregnant after Lupron and her endo was severe!  She did IVF but still is pregnant.  

I tend to like to do things naturally also and really hated the idea of Lupron but I did it anyway and I think it was worth it.  The pain relief for me was great.  

I know this is hard but listen to yourself and listen to your doctor.  If you trust your doctor and are honest with them they will lead you in the right direction.  It is scary since you are totally in control of what you do.  I know with this disease I have often felt like I just wish I did not have to make these decisions and it could be done for me, but it is good to have the control and know that whatever decision you make is the right one and no regrets!

Good luck and let us know what you decide!
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Avatar_f_tn
I just heard about a supplement called Pycnogenol. In a clinical trial in Japan, half of a control group was given this supplement and the other half lupron....they found that it did the same thing as far as stopping pain, etc with none of the side effects of the lupron.

I just bought some yesterday and am hopeful.  look it up on the web....it seems legit, there is a lot of info out there.
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Avatar_f_tn
Thanks again for all the very informative and helpful feedback.  :)  

Still cannot seem to make up my mind.  I seem very reluctant about taking the Lupron and the addback therapy and I am extensively looking at alternative solutions...

I would love to hear from anyone who is working on balancing their hormones naturally (through immunotherapy/nutrition/relaxation technics etc...).  I am particularly interested in hearing from anyone who is or has been successful with those more natural means.

Thank you again!!!  :)
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750194_tn?1233351030
Im 21 & I have been suffering from endo since I was 16. I had the lap when I was 19 to remove all the adhesions & i also had a severe case. They told me I had a 15% chance of ever getting pregnant so my husband & I decided to try after the surgery since they "SAY" Its cures it for 2 years after having a baby. Its worth a chot to get pregnant right after so all the adhesions are gone.. so to our amazment we got prego 2 months after the surgery.
I had already bought the lupron shot to take but didnt really want to it terrified me to think I wasnt even 20 & i would be in menopause. so I kept it & 8 weeks after my son was born & i was doubled over in endo pain so I went to the gyn & agreed to take the shot just to help the pain & I hated every single minute of it. I had more mood swings than I did my entire pregnancy, hot flashes..  its been 3 months since I finished my 6month round of lupron & I hurt so bad still.. all its just a pain killer.. it dosent treat it.
I wouldnt recomend it to anyone. I actually had a friend ask how it was 7 I told her not to take it.
If anyone has any new study they know of please let me know. their has to be a GOOD treatment to all of this
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146298_tn?1258715847
change your diet! look up endo diets and follow to a t.
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Avatar_f_tn
I just had a laposcopy on Feb 13. I was diagnosed with severe endo and was told I could not have Children. I am 38 and fine with that. My doc wants to put me on Lupron injections for 6 months.  I just do not feel comfortable with that! The side negitive effects seem to outway the positive especially since I am ok with not being able to conceive. Any updates or ideas for me?
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