Lupron, anyone?

[trulycrabby]

Hello! I had an appointment with a gynecologic oncologist today, and the good news is he doesn't think I have ovarian cancer. Really good news. :)

 

The mediocre news is he thinks I have endometriosis, and it's not in an area where he can surgically remove it. So, my best option is to take Lupron, which will immediately put me into full-blown menopause. Meh, I am already having 20-30 hot flashes per day. Can it get any worse?

 

Does anyone have any experience taking Lupron? If so, what were the side effects?

 

Thanks in advance for any help! :)

[Tammi K]

No advice on the medication, but lots of sympathy for the hot flashes. I can relate!!!! No fun!!!

 

Glad you had good news on the cancer scare. :grouphug:

[Pippen]

My insurance wouldn't approve it for endometriosis.

[trulycrabby]

My insurance wouldn't approve it for endometriosis.

:(

 

The doc stated my insurance should cover it since I have had surgery for endometriosis, but I noticed he said " should" instead of "definitely."

[TheBugs]

I took lupron for 6 months when I was 19 for endometriosis. After the first dose I had a "lupron flare "which is when you have all the worst endow symptoms, pain and bleeding. My parents took me to the ER because we were scared because we thought the drug was supposed to stop all that. But the flare up is normal. Then my periods stopped and I was pain free for the rest of the doses. The hot flashes were weird but didn't distress me. When I was done with the course my cervix had closed completely so when menses returned it was trapped . That was painful.Apparently this happens rarely with lupron because it can cause the cervix to thicken. I had a minor procedure to fix that.

 

The lupron helped my pain significantly and it greatly reduced the endometriosis.

[trulycrabby]

Thank you, The bugs. Did you lose a lot of hair on it? I have been doing some research, and apparently Lupron is an anti-neoplastic agent, aka chemotherapy. Needless to say, I am having second thought about it! :ack2:

[RanchGirl]

I wouldn't say that lupron ruined my life, but I really really regret taking it.  It did nothing to help with my endo symptoms and it caused many other problems for me, some that are permanent issues now (mostly metabolism, I think it killed off my thyroid because I became hypo-thyroid afterward.  When lupron didn't work, I did the surgery (both cutting and burning a bunch of stuff) for endo and that didn't help with symptoms either.  It continued to steadily get worse.  It was a very difficult time, I think about 4 years total.  The symptoms actually began when I started taking bcps.  I personally feel that there is some correlation there but I really don't know. 

 

The only thing that helped was a drastic change in diet and stopping all drugs (including NSAIDS and bcps).  My main goal was actually to detox in preparation for attempting to get pregnant.  I went no drugs, not even advil, no sugar, no meat, no caffeine, no alcohol - no beverages but water.  I ate just rice and fruit and drank a ton of water for a month, then added vegetables, then dairy & nuts, and was vegetarian for about 6 months.  After that I added chicken and eventually red meat, but I continued with somewhat low sugar until after I had my kids.

 

All my endo symptoms completely disappeared after the first month.  17 years and two kids later and I have not had any recurrence of the pain whatsoever, no matter what I eat.  Sounds crazy right?  I just googled 'endometriosis diet' and there are a few sites listed, so maybe there is a more formal recommendation out there now.  I was basically doing an elimination diet and I was shocked at how successful it turned out to be.

 

I hope that whatever you try is as successful for you!

[smudge]

After an unsuccessful round of IVF, the doc decided to do an exploratory Lap. Low and behold he found endometriosis in there. Which was interesting because I do not have the pain like most people. So I got one shot of Lupron that put me in menopause for the next three months. I was very glad this all happened in the middle of winter LOL! Those hot flashes were crap!

Anyway, I am glad I did it as at the end of the fourth month I got a surprise in the form of a positive preg test who is now my rising 3rd grader!!

[Starr]

No one can do a little laser surgery?  One doctor offered me lupron which didn't sound pleasant and another was able to use that laser and fix me right up!

[TammyS]

I was offered Lupron for a very large fibroid that I'm living with.  I have serious concerns about any medicine that puts a person into menopause.  It's not the hot flashes that concern me, it's cancer and bone density.  I don't know for sure that cancer is an issue (information seems sketch and it appears no one really wants the answer to that question badly enough to do the research) but for sure I would lose bone density.  I'm 36 years old and simply not willing to risk my bones so early in life. 

 

I'm doing some things to basically reduce the amount of estrogen in my body naturally (the theory being that fibroids are cause by an excess of estrogen that behaves badly), including intense exercise, reducing any "junk" in my diet, and taking ECGC (green tea extract).  So far, I've gotten my cycle down from 40 days to 29.  I don't know that endometriosis would necessarily respond in the same way, but you might want to look into it.

 

Of course, whether one takes a slower, more "natural" route or a faster, more "drastic" route will largely be determined by the amount of suffering you are in now and how long you can keep it up.  While my fibroid is for sure uncomfortable, I don't have the severe pain and dangerous bleeding that some women have.  If it I did, it might change my direction.  So please understand that I offer this as information only, not as judgement against doing drugs or surgery.

 

One thing I think you should definitely look into is unsulphered black strap molasses.  This won't cure anything, but the iron, potassium, and B vitamins can reduce the killer fatigue symptoms and make your daily quality of life a lot better.  It's very strong tasting, but get it down any way you can (I hide it in my coffee).  It's worth it.

[trulycrabby]

Thank you, thank you for all this great info! :hurray:

 

I am very concerned about the possibility of permanent memory issues after Lupron. Frankly though, I am in quite a bit of pain, and the gynecologic oncologist stated that the endometriosis is in a place that is verydifficult to get with surgery, which is why it's not an option at this point.

 

I am going to reread these posts and take notes after we do school this morning. The good news is that we are waiting a month since I am having a colonoscopy and some other tests done, so I have ssome time to do research. I might consider the backstrap molasses and ask to try progesterone therapy first.

[TheBugs]

Thank you, The bugs. Did you lose a lot of hair on it? I have been doing some research, and apparently Lupron is an anti-neoplastic agent, aka chemotherapy. Needless to say, I am having second thought about it! :ack2:

 

I did not lose any hair. I think if you decide to take lupron you have to be very careful about making sure to prevent bone density loss and stuff like that.

 

I didn't know that it was such a strong drug when I took it. I think I probably should have been better informed about what it was before I started it, so I think it is good that you are taking the time to research.  I would think that if there is a less drastic, but effective treatment, try that first.  But for me, the pain I was in was significant, and after taking Lupron it was so much better, that I think the side effects have been worth it for me.

 

I didn't think very much before taking it. My parents and the doctor made the decision for me after I had an emergency appendectomy from complications related to endometriosis. I was very sick before I started taking it, having vomiting and fevers as well as pain with my cycles. Getting relief from that with the Lupron was worth it for me, despite the hot flashes. I was able to go back to school, work and take part in my hobbies again.

 

It sure was strange having hot flashes at 19. (16 years ago) They were very strong, like an intense wave of heat that started at my head. At first I thought I was imagining it.

 

I don't know if I have had long term effects from the lupron. My thyroid is sluggish, but in a normal range, whereas both of my sisters who have never taken lupron have hypothyroidism (so that must be genetic). I have weird symptoms sometimes, like muscle twitching and tingling in my extremities, that seem to be benign and I think maybe that started when I took lupron. I don't know.

[TheBugs]

No one can do a little laser surgery?  One doctor offered me lupron which didn't sound pleasant and another was able to use that laser and fix me right up!

 

I have heard in recent years that laser excision surgery is the gold standard for endometriosis. I think it is awesome that it has worked for you. Back in the day I think they usually cauterized and that wasn't as effective. It's really important to see a surgeon who is very familiar with endometriosis. Gynecology surgical oncologists are very skilled too. I think the OP said her endometriosis is in a tricky place that is inoperable though.

[Spryte]

I took Lupron for 6 months in 1999.  It's been awhile. :)

 

It was not a good experience, and I regret it, too.  

 

I will pm you in a bit with more info about the side effects, etc that I experienced.  I'm not able to type much right now, and Lupron deserves its own little novella.  

 

ETA:  DH is sitting here with me, and he says, "Run away screaming."

[TammyS]

I took Lupron for 6 months in 1999.  It's been awhile. :)

 

It was not a good experience, and I regret it, too.  

 

I will pm you in a bit with more info about the side effects, etc that I experienced.  I'm not able to type much right now, and Lupron deserves its own little novella.  

 

ETA:  DH is sitting here with me, and he says, "Run away screaming."

 

Without pushing you to go into details or write your novella :lol: , can you say whether the side effects were short term or long term?  That might help OP in deciding. 

[Spryte]

Without pushing you to go into details or write your novella :lol: , can you say whether the side effects were short term or long term?  That might help OP in deciding. 

 

I'm in a better place to write a bit now.  :)

 

The short term side effects were pretty intense for me.  I stuck it out anyway, but it was hard.  Let's see if can remember: double vision; nausea and vomiting (this was particularly fun as I was doing field work and would go behind my tent to throw up, lovely); very little pain relief - I still had pain periodically through the month, despite the Lupron; intense mood swings; hair loss; leg pain; muscle pain; fatigue.  I had an overall sick feeling the entire time, as well.  Now I would call it "toxic" but when I was on Lupron that word wouldn't have occurred to me.  I think there were more side effects, but honestly can't remember them all.  I will say that I'm grateful that DH stuck with me.  It was our first year of marriage, and I was a real bear.   :o

 

The first period after Lupron was disastrous, and it happened to be on our 1 year anniversary, too. Yikes.  It was very nearly ER material, but I flat out refused. Within 3 months of that time, I had another surgery for the endo, as the Lupron was a massive fail.  2 weeks later I had a hysterectomy.  I was 27.  Lupron was a massive fail, with a lot of side effects for no real purpose.  

 

Long term effects are hard to quantify.  I spiraled down and down, and I can't tell what might be a long-term effect of the Lupron.  I do have thyroid issues now, my adrenals no longer function (I have Addison's), I have chronic fatigue and fibromyalgia though I tend to view those as symptoms of a larger issue.  And there's a lot more. But to be fair, I had tick borne diseases that were undiagnosed, and the combination of Lupron/2 surgeries in quick succession/some other major events ... all of those seemed to work together to create a situation from which anyone would struggle to recover. I am finally back on my feet, but it's taken years and years of specialized care from an amazing doctor to get me here.  And I will never be the same.  But I'm grateful for every moment.  :)

 

So... there's the short version of my Lupron story.  One thing though, I will say that Lupron gave me the ability to have the hysterectomy.  I needed to feel that I had tried *everything* before I could get to that point of giving up the option of ever having birthchildren.  So, in a sense, Lupron freed me to have a hysterectomy, which was good.  I had adenomyosis as well as endo, so it really was the best option for me.

 

If I were in your shoes, I would check out the Endometriosis Association, and any other advocacy groups.  When I was dealing with it all, the Endo Association was the big one, but there may be more now.  I would ask for help finding the real, true specialists in endo surgery.  Way back when, there was a doc in Bend, OR and another near Atlanta, GA - they were considered the very best.  If I had not opted for the hysterectomy, we'd have flown to one of those for surgery.  They were good enough to merit the flight and the extra expense, and their expertise in reaching areas that were otherwise inoperable was renowned.  Unfortunately (or fortunately, for me!), I'm pretty far removed from the endo world now, and I can't recommend anyone now.  For years after my hyst, I thought I might need to go to the surgeon in Atlanta, as I had (have?) endo on my ureter and bladder, and that was his specialty.  

 

Not sure if any of this is helpful.  If you have questions, feel free to pm me.  

 

I hope you find relief quickly.   :grouphug: 

[trulycrabby]

Thank you again! I have yet another doctor's appointment today (thyroid doc), and will ask his opinion on it.

 

More later. :)

 

P.S. I really appreciate everyone's stories and experiences. :)

[Lisa R.]

I have heard in recent years that laser excision surgery is the gold standard for endometriosis. I think it is awesome that it has worked for you. Back in the day I think they usually cauterized and that wasn't as effective. It's really important to see a surgeon who is very familiar with endometriosis. Gynecology surgical oncologists are very skilled too. I think the OP said her endometriosis is in a tricky place that is inoperable though.

 

I agree.

 

Here's the deal: endometriosis is very common and practically all OB/GYNs deal with it. If you have a simple case, I'd go with your GYN. However, if you have a difficult case, and it sounds like you do, go see a physician that specializes in endo. There is a small handful of them around the country. (I'm assuming here you live in the U.S.) Since endo is such a persistent problem, it is worth the effort even if you have to travel to one of these people. 

 

Your doctor could be right that a surgeon can't get to the endo. He or she also could be wrong because he's not as skilled in this area as another doctor. 

 

I'd get a second and third opinion before I'd try Lupron. I'd find a good doctor who SPECIALIZES in endo. This will probably be a doctor probably hasn't delivered a baby in 20 years. 

 

People from all over the world travel to Dr. Redwine in Oregon. I know he used to do consultations over the phone after you filled out paperwork and sent medical records. We had great success with Dr. Farnham in El Paso. This was after two failed surgeries from regular OB/GYNs. PM me if you want more details on our journey.

[Annie Elle]

Count me as another who regrets taking Lupron. I found it to be a short term solution for a long term problem. It did ease my symptoms for a few years but they came raging back. Cutting wheat out of my diet and trying to eat organic as much as possible helped more. Vitex also helped. Switching to cloth pads was another huge help.

[NotSoObvious]

I'm a little confused about him "thinking" you have endo and wanting to put you on Lupron for something that might not be there??? Do you have an accurate diagnosis or not? That would be a first step.

I have heard horror stories about Lupron.

 

I would recommend finding an excision surgeon, like Dr. Sinervo in Atlanta. http://www.centerforendo.com

 

We have a few support groups on FB. Come join us! You'll have more stories about Lupron than you'll know what to do with. :)

[trulycrabby]

Thank you, Lisa, Anniwe, and notsoObvious!

 

I had lapaoscopic surgery for severe endometriosis and a baseball-sizd endometrioma about twenty years. So, even though it has been awhile, I do have a confirmed diagnosis.

 

I would love to join the fb group, and might consider seeing an endo specialist. I assumed a gyno oncologist would have the training to treat endo, but now that I know there are endo specialists, I will try to find one who is not too terribly far away.

 

Atlanta? It's only 3.5 hours away by car! I can do that! :hurray:

[RanchGirl]

Switching to cloth pads was another huge help.

This is helpful for me too, I notice that I don't get any cramps when I use cloth pads.

[Annie Elle]

Another thing that has really helped is avoiding soy products or supplements that are supposed to help menopausal symptoms. A couple of protein bars that use soy as the protein or women's vitamins will increase my endo symptoms horribly.