Ladies question - Lupron shots

[ChrisnSteph]

I was told today that I need to start Lupron therapy as treatment for endometriosis. Does anyone have any first hand experience with Lupron? The potential side effects are kind of worrying me! I need the good, bad and the ugly on this stuff.

 

[momrek06]

Howdy Steph: Happy New Year!!

I have no data to share on the Lupron shots but I am on a woman's health message boards which I am sure if you take a look at it, will answer your questions.

www.power-surge.com I have been a member for a while and it has so much info for woman and questions they may have in relation to health and their bodies.

The have message boards and live chat rooms. Really quite interesting!!


BTW: Awesome pic of you and Chris!!!

 

[Buckalew11]

My dad had Lupron shots and had very few side effects. I had a male client who also had them (both had prostate cancer) and he had horrible hot flashes.
I don't know how the side effects differ or anything but maybe you'll be lucky like my dad was. I think they gave them to them to stop the hormones from feeding the cancer so that is why the man had hot flashes--it sent him to "male menopause" very quickly which usually happens to men so slowly they don't notice like women do (or something like that.)

I do some serious research just to make sure this is a good decision for you and your body.

Good luck to you Steph. I am sure this is a scary thing and yet if it can help you, it will be a good thing.

 

[ChrisnSteph]

Howdy Steph: Happy New Year!!

I have no data to share on the Lupron shots but I am on a woman's health message boards which I am sure if you take a look at it, will answer your questions.

www.power-surge.com I have been a member for a while and it has so much info for woman and questions they may have in relation to health and their bodies.

The have message boards and live chat rooms. Really quite interesting!!


BTW: Awesome pic of you and Chris!!!

Happy new year to you too! And thanks! That's our new puppy Maggie, taken at Christmas. She's twice the size now!

Thanks for the link - I will check it out right now!

 

[NEVERENOUGHWDW]

ENDOZONE.COM has an enormous amount of info on Lupron and everything else associated with Endo. I suffered with Endo from the age 11-39.

Best of Luck To You!

 

[Alex2kMommy]

I had the shots about 10 years ago. I went through mild symptoms of menopause, obviously no cycle (YAY!) but also hot flashes. I don't remember it being horrible, just would occasionally get suddenly hot and sweaty, but it would only last a minute or two. I think it mostly occurred in the middle of the night, too.

I don't really remember what other side effects there could be, just that it wasn't too bad for me. Good luck to you!

 

[clutter]

You will find out what menopause will be like... times 10!!!

Seriously, I didn't think it affected me. Until I realized that I was crabby, paranoid, and I had reason to be because I was a perfect witch. Then I took Clomid and discovered that I'm an extrogen junkie. (I'm on bcps continuously now for my endo. No cycles, gotta love it.)

Anyway, everyone reacts differently. I had a freind that suffered from horrendous hot flashes. And when she was told to go back on it, her assistant of 5 years quit!

 

[ChrisnSteph]

Wow, this stuff scares me. I'm only 31, so the thought of my body being menopausal scares me, not to mention the mood swings. My dh and I just go through a really rough time in our marriage, so the thought of me being a raving lunatic really makes me reconsider whether I should try the Lupron. I've also read about it decreasing your bone density by as much as 3% in 6 months. Wow. My endo is really making my life miserable however, so part of me is desperate to put an end to it. I swear, this female stuff is for the birds. In my next life, I hope I come back as a man!

 

[lunchmomd]

I was on Lupron therapy for 5 years, and for the first 4 it was great. No period and no side effects whatsoever. Then the last year I started getting hot flashes and night sweats. Mild and sporadic at first, then increasingly worse. I have to say, though, I would do it again. It has been at least 5 years since I have been off, and I still have very little pain.

 

[poohluvrs]

. My endo is really making my life miserable however, so part of me is desperate to put an end to it. I swear, this female stuff is for the birds. In my next life, I hope I come back as a man!

Hi!
I took Lupron before I had kids, the only side effect I remember was ocasional very hot flashes, I was fine w/ it otherwise & I am paranoid about everything, so Id say if the benefit outweighs the concern go for it;have you asked your Dr or pharmacist?

Have you checked into surgery? I suffered from miserable ENDO, ended up having laporoscopy, Dr removed a lot of it, this was before I started trying to have a baby. I have since had a healthy pregnancy & birth, & I dont really feel the ENDO anymore, still bad monthly cycles though

Good luck to you, hang in there

 

[klmall]

I was on Lupron for about a year in my thirties before I got pregnant and I had my DS and then later after DS to control the endometriosis again. While on Lupron I had no real side effects except no cycle and some vag dryness. No hot flashes etc. The Lupron though had almost no effect upon my advanced case of endo and I eventually went ahead had major surgery which really has made the quality of my life much better.

 

[luvwinnie]

For me, Lupron was a NIGHTMARE and I'm not totally convinced it didn't cause the autoimmune problems I have now. Being on it was HORRIBLE. The hot flashes, mood swings, dry eyes (and other parts) and short-term MEMORY LOSS were terrible. I seriously understood how people could MURDER while I was on it...I would have this feeling of RAGE come over for me for no reason. Please look into it as much as possible before taking it. There is a grass roots organization of women who I believe are trying to get a class-action lawsuit going due to problems they feel they have due to Lupron.

 

[luvwinnie]

I was on Lupron therapy for 5 years, and for the first 4 it was great. No period and no side effects whatsoever. Then the last year I started getting hot flashes and night sweats. Mild and sporadic at first, then increasingly worse. I have to say, though, I would do it again. It has been at least 5 years since I have been off, and I still have very little pain.

Five YEARS!?!?! I thought you couldn't be on for more than 6 months?

Found this:
Lupron lowers estrogen levels, which can lead to a decrease in bone density in both men and women. Decreased bone density could increase your risk of osteoporosis, or brittle bone disease, later in life. Consequently, the drug is not usually given for longer than 6 months at a time.

 

[Mom2Ashli]

Wow, this stuff scares me. I'm only 31, so the thought of my body being menopausal scares me, not to mention the mood swings. My dh and I just go through a really rough time in our marriage, so the thought of me being a raving lunatic really makes me reconsider whether I should try the Lupron. I've also read about it decreasing your bone density by as much as 3% in 6 months. Wow. My endo is really making my life miserable however, so part of me is desperate to put an end to it. I swear, this female stuff is for the birds. In my next life, I hope I come back as a man!

I was also told that I should take the Lupron shot. I declined due to the side effects. I also did a research study for 6 months for a new drug that they are trying to get out on the market.

Best of Luck.

 

[luvwinnie]

Just wanted to add that being on the Pill has kept the pain away for me! Have you tried it?

 

[MushyMushy]

I wasn't on it, but a good friend of mine was. She didn't have any physical symptoms, but the mental... wow! She was scary crazy for about a week after she'd get her shot. She was paranoid and would literally have screaming, crying fits. I've never seen anything like it.

 

[ChrisnSteph]

Hi!
Have you checked into surgery? I suffered from miserable ENDO, ended up having laporoscopy, Dr removed a lot of it, this was before I started trying to have a baby. I have since had a healthy pregnancy & birth, & I dont really feel the ENDO anymore, still bad monthly cycles though

Good luck to you, hang in there

I have already had one surgery. My doctor told me if the Lupron doesn't work they'll need to go back in and see how bad the endo has gotten. I really just want them to take that bad ovary out, but my doctor wants to get me to age 40 before she does anything drastic. I've been dealing with this stuff since for about 7 years, and it's getting old. I suppose I could give the Lupron a shot (literally) and see how I react to it the first month. If I'm on here ranting and raving and being a complete lunatic, then you'll know why! And oh yeah, I've tried the continuous bc pills. Did nothing for me but making me more irregular then I already am.

 

[poohluvrs]

I really just want them to take that bad ovary out, but my doctor wants to get me to age 40 before she does anything drastic.

Hi Stephanie

I just wanted to tell you I have also had an ovary removed (dermoid cyst) so I can somewhat sympathize...if you have any ques you can pm me, the ovary was removed in my 20s, I went on to have a twin pregnancy in my 30s, even w/ only 1 ovary, you will still ovulate every month, instead of the ovaries taking turns ovulating, the 1 ovary does it every month....

Sorry if this is TMI, but I figured no guys would log in to read this & women can handle it

 

[clutter]

And oh yeah, I've tried the continuous bc pills. Did nothing for me but making me more irregular then I already am.

Really? That's a shame, they totally stop my cycle. I went for 9 years without a period. I seriously doubt that I'd have been able to get pregnant at 37 without that.

The lupron will probably help. But the reality is that endo simply gets worse with evey cycle that you have. That's why all the treatments (danocrine in the old days, lupron, pregnancy) involve stopping your cycle.

By the way, if you have painful periods, don't start until after your period, not in the middle of a cycle. I was on percocet for the first couple of weeks because I started mid-cycle. (I believe. The doctors told me that I was nuts and that no one has pain from starting lupron.)

 

[NeverTrustaPiratess]

Hi Stephanie

I'm a Stephanie too.

I have stage 4 endo and was put on Lupron in 1997 after my first surgery. I was very wary about starting the drug because, like you, I'd read up on its potential side effects but my pain and bleeding was so bad that my doctor convinced me to go on it.

For me, the 'good' was that Lupron stopped my bleeding and most of my pain.

The 'bad' was the hot flashes, which weren't too horrible, really, just mostly annoying. I also got night sweats, which were much worse for me and I developed rather bad insomnia/sleep disturbances.

I also did have bone loss from having taken Lupron. Has your doctor discussed estrogen add-back therapy with you in conjuction with taking Lupron? Some doctors are against that idea, others believe it to be helpful. Add-back estrogen would help with hot flashes and lessen the possibility of - or at least the extent of - bone loss from the Lupron. I myself did not take add-back because, back then, I couldn't understand the logic of taking estrogen when I was taking a medication to LESSEN the estrogen in my body. However, in retrospect I wish I did take the add-back therapy because I have osteoporosis now and, though it isn't yet causing me any troubles (I'm 38, btw) I do worry about the future in regards to my bones.

I ended up being on Lupron for a total of 14 months. I had read about the 6 mos. limit of being on Lupron and mentioned that to my doctor at the time, and she claimed she'd had patients who'd been on the drug for years and would continue on it for years. I see a different gyn now and I am unsure of how good of a doctor my first doctor was in terms of dealing w/endo so I don't know if being on Lupron indefinitely really is a more common situation or not. Doc #1 also said if one takes a break from Lupron every 6 mos, one could then go back on it for another 6 mos. round with no problem. I am unclear about that assertion as well, but I mention it now so that it's one more bit of info to discuss w/your own doctor so you can make the most informed decision possible.

All in all, while Lupron gave me quite a bit of relief from my major endo symptoms, due to the bone loss I suffered I wish in retrospect I did not stay on it for as long as I did. Lupron isn't a 'cure' for endo and really, imo, it's a treatment option best suited for women who wish to preserve their fertility for awhile longer in hopes of becoming pregnant in the not-to-distant future. In my case, it was clear from my first surgery that, due to the extent of the endo, pregnancy would be a very, VERY slim chance for me, but I wasn't as informed back then as I am now and my doctor at the time convinced me Lupron was the most appropriate treatment for me, even though preserving my fertility was kind of a moot issue so...

I'm not pro or anti Lupron, as I think in many instances it's a great option for endo sufferers, especially those who want to try to get pregnant within the next year or so after diagnosis. But it is a potent drug and it makes me sad when I hear about women who weren't told everything about it prior to agreeing to go on it.

Good luck to you in whatever choice you make. I hope you find relief. I know what you're going through. If I can ever help answer any other questions or anything, please message me.