Lupron Depot for Treatment of Endometrosis

Updated on April 28, 2008
K.T. asks from Joliet, IL
22 answers

My Doctor prescribed Lupron Depot this afternoon for treatment of my Endometrosis. I have since returned home and began researching Lupron and the side effects. What I have found in my research scares me and I wonder if anyone has any first hand experience with this drug? I certainally do appreciate any and all responses.

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D.K.

answers from Chicago on

Hi K.,
I am so sorry to hear that you are dealing with endo. I also
dealt with it for many years and when I was finally diagnosed,
was given a choice of 4 meds to take. I decided to research
them before starting one, especially since I did not like the side effects that the doctor was telling me. Shortly before this I was introduced to a patented balanced nutritional product, Reliv, and decided to give it a few months to see if
it would help. K., it has been a godsend!!!!! My second
month of taking Reliv, my pain was better, my mood swings, back and leg pain decreased. Over the next few months my symptoms got better including migranes at PMS time and it has been over 9 YEARS!!!! Sometimes I forget how much pain I dealt with, loss of family and work time because of it. I
would be glad to share more about the Reliv so you could make
an educated decision. I have met other women using it, one
in particular that was able to cancel her hysterectomy shortly after starting Reliv. Other women that did have surgery have found relief with the hot flashes, etc with the
product. Best of luck K. and I look forward to talking to you soon.
God Bless,
D. K

1 mom found this helpful
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J.S.

answers from Chicago on

I don't have endometriosis and am not familiar with that drug. However, I wanted to tell you that an alternative medicine might help you cure this ailment without side effects from drugs. homeopathy is a natural medicine that's been practiced for over 200 years and is extremely effective in relieving symptoms or even curing them. I see Dr. J. Polich in Naperville for our chronic illnesses in our our family (asthma, eczema, women's issues). Her website is www.dupagehomeopathic.com. She is giving a free seminar on treating chronic illness on 5/22 (see her homepage or email me).

I did a quick google and found an interesting article that might help you understand more about homeopathy and how it can help someone w/ endometriosis:
http://www.endo-resolved.com/homeopathy.html

Email me offlist if you wish to ask more questions about homeoapathy or want to see a list of other practitioners in the Chicagoland area.

1 mom found this helpful
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B.F.

answers from Chicago on

Hello K. i am 30 years old and i have endometriosis. I have had it for three years now knowingly. Women can have this for a long time and not even know it. Some cases vary in my case i tried alot of different options. For one there is no cure for this there are many options for easing the pain. In my i was giving lupron depot and it made me even more miserable i began to get meaner had mood swings and hot flashes. I was told that it would make me feel like i was going through menopause and it did. Maybe it could have worked for me but i just could not take all of the side effects. The end result for me was having liposcopic surgery because i not only had endometriosis but i also had cysts and tumors on my ovaries as well that had to be removed. My suggestion to you is to try out the lupron depot to see if it works for you if it does not help or you can't take the side effects then maybe you should stop taking it. Also before lupron was giving to me my doctor tried giving me a stronger birth control. Let me know what you think about my response and don't worry if something doesn't feel right to you then don't do it get a second opinion. If you would like i can refer you to my doctor he is a specialist in this area. Let me know B.

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A.T.

answers from Chicago on

I have been on various treatments for endometriosis and infertility. Before I took Lupron I was on some kind of an oral med (wish I could remember the name). It helped the endo but had awful side effects. I was on Lupron LOTS when going through IVF-- the entire process was a downer--but the Lupron itself was not that bad. My endometriosis returned and one doc put me on Depro provara (spelling?). That was by far the worst stuff ever!!! Migraines so bad I wanted to blow my brains out. Get your endometriosis under control now. Personally I'd use Lupron in a minute over anything else. Good luck!!!

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J.E.

answers from Chicago on

I am warning you this drug sucks. I am too ata point whre i need it to stop the pain or remove my oavary and not sure what to do. If i remove the ovary i would need HRT and that oo makes one nuts.
Lupron pretty much puts you into menapause so everythign that menapause brings, crying, irratability, sweats depression, fly off the handle you name it. Imagine a hormone crazyiness and the worst premenstral feeings ever. well it is not so bad if they go slowly but I am just giving you the worst case senario. Some do ok and can handle it others are a wreck. Good girl reserching it though! It works is your endo real painful right now?
J.

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S.B.

answers from Chicago on

Hi K.,

I was diagnosed with endometriosis when I was 19 and ended up getting the Lupron shot because the pain got so bad. Lupron is wonderful but evil at the same time. It does work great for taking the pain away and getting rid of the endometriosis for the time and it worked pretty quickly for me relieving my pain. The down side to the drug is the major mood swings, hot flashes and weight gain, but remember everyone reacts to every drug differently, so hopefully you will be one of the lucky ones. When ever anyone I know asks about this drug I just tell them if you take it, start out with the one month shot in case you don't want to keep taking it and just tell your friends and family to be supportive while you are taking the Lupron and educate them on the side effects so they know what to expect too. If you can get the surgery to remove the lesions and that usually will take care of the pain I highly recommend doing that, but if you already went that route and are still having a lot of pain and have no other options, then I suggest try the one month Lupron shot and see how it works for you and if it makes you misserable don't get the second shot when your due. I hope I was helpful, let me know if you have any other questions.

Thanks,
S. B

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O.S.

answers from Chicago on

Your instincts were right! - don't do it K.!
Horrible side effects and no follow through or personalizes treatment from Western docs.
I cured my endometriosis (at least enough to get pregnant when the Western docs said I couldn't!) with Chinese herbs and acupuncture. Go the natural route and you will feel stronger throughout your body! Good luck, O.

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T.C.

answers from Chicago on

Hi there!

I had to get injections every month for what seemed forever... this was 7 years ago so I really do not remember the length of time- probably 6-9 months. My Dr insisted that surgery was to be used as a last resort.

The side effects or the pain is what I had to decide on. I finally decided that going to the ER atleast monthly to get Morphine to be able to function because of severe cramping and pain was no longer worth it. The side effects I experienced were hot flashes, occasional crying jags and slight weight gain... I do not agree with my hubby but he said I was a raging b*t** also :)

Now if you were to ask me if I would do it again today... I would say NO WAY! 6 months after stopping the Lupron I ended up having the ovary and tube removed that was twisted and attached to my uterus. Wished we would have done this to start! Lupron is a way to help the pain but it will not cure it! I was not as lucky as some who experienced great relief for years- although it did help for several months. It was great not having to go to the ER for the pain for the short time it lasted.

The pain effected my quality of life and that was what I took into consideration before taking it.

Be careful what you read here on the internet. I think it is great that you are asking other people their experiences instead of just reading the POSSIBLE side effects! Also, talk to your Dr about your concerns. S/He will be able to explain a lot of what you are reading.

I hope you find an answer you are comfortable with! Just remember this is your body and you have the last word on what you will or will not put into it!

Many blessings!

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J.T.

answers from Chicago on

I don't have experience with Lupron, but I can share experiences about people who used nutritional approaches to endometriosis and were helped. If you are interested, you could e-mail me offline and I will send the information. I heard a nutritionist answer a question about this and said "most female problems stem from too much estrogen. Estrogen accelerates the growth of cells. Endometriosis is uterine cells growing outside the uterus. So, if it were my daughter, I would encourage her to get off white sugar, flour, pasta, potatoes, rice, etc. and take lots of B-Complex. " I know people who have worked to clear up a Candida problem and solved their endometriosis problem. Candida is fed by white sugar, flour, pasta, potatoes, rice, etc.

Nutritional solutions are never quick ones, but they don't have the side effects of drugs. I hope that you can find something that will bring you relief without causing worry and anxiety.

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L.V.

answers from Peoria on

K....my daughter suffered with endometreosis terribly during her highschool years. I like you did a lot of research on the drug before giving it to her...while there can be side effects as with any drug , the treatment was a success. She now has three beautiful daughters..and the pain suffered during her period decreased significalyy..i hope this gives you a peace about what you should do...

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N.D.

answers from Chicago on

Hi there-

I'm sorry to hear that you are dealing with this. The pain from Endometriosis can be blinding and constant. Having suffered with it for many years, I can sure understand.

After having my son in 2003, I began experiencing such horrible pain that I wasn't able to function, much less care for a newborn. I had always had symptoms of Endometriosis but was never diagnosed. It took my Doctor to go in and do exploratory surgery in 2005 to find out the cause. I had every known test done but nothing showed up. Finally, in 2005, I had a diagnosis and we could put a plan together.

I started birth control pills (for the first time ever) and Lupron shots, which I did for 6 months on and 6 months off. I did this for about 2 years and had NO reactions, except it helped minimize the pain and the growth of the Endometriosis. Unfortunately, I had to have more surgery in 2007 to remove the growths again. That is when I switched Doctors and once I found another Doctor, he began to think outside of the box since my most recent surgery didn't reveal much Endo. He then started treating me for Polycystic Ovarian Disease (PCOS) and let me tell you, I can function, take care of my children and I am not in pain...at all. I am no longer screaming for people to take all my woman parts out and I no longer feel pain. So this may be something you look into as well.

While I didn't have the problems from Lupron, I can say that it was a good drug for me. So, don't rule it out just yet. YOu are doing the right thing by asking your Mama friends. I hope that you find relief soon and that my info helps.

Good luck.
N.

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M.G.

answers from Chicago on

HI K.

I started having severe pain with my periods when I was 14 (this was about a year after my first period). My doc put me on BCP, which I took, off and on, for close to 20 years. Whenever I came off of the pill, the pain would return. So bad that not only could I not function, but I would break into a cold sweat and vomit. I would be totally incapacitated for 2 days every month. i quit taking the pill about 16 months ago when I first started trying to conceive. The pain returned, but I just endured it. Thank goodness I didn't have a job, because I would have been fired for sure.

Anyway, I moved here in July and in January I found a new OB/Gyn for my annual exam. I mentioned to him that my periods were horribly painful and that I had been trying to conceive for about a year. I was scheduled for a laporoscopy a week later. The doc found 2 very small spots of endometriosis on the outside of my uterus. They were each about the size of a pencil eraser. he said that the smaller they are, the more painful they are. He got rid of them and while I still get cramps every month, the pain is NOTHING like what I used to experience. I would consider surgery. It literally changed my life.

Now, I also have to start Lupron, not for the endo, but because I am about to undergo IVF. Thankfully, I only have to take it for a few days because from what eveyone else has said, it sounds awful...but I'm willing to do whatver is necessary to have a baby.

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J.

answers from Chicago on

Hi K.,
I was on Depo Lupron for 6 months about 8 years ago after I had surgery for my endometriosis. Basically it was like being in menopause for 6 months (I suspect that is). No period, hot flashes, irritability. I can't say it was fun but i haven't had any issues at all with my endometriosis since. I guess they zapped all the endometrial tissue they could see and the Depo Lupro takes care of anything they missed. I guess i just told myself that I knew why i was feeling like i was and the people around me knew too. The most embarrassing part of it was I'd be in a meeting at work and all of a sudden I would turn red and start sweating and you could feel the heat coming off me. I couldn't really tell my co-workers it was my hormone shots.

The good news is I have since had 2 beautiful girls and all of those symptoms went away when the treatments were over with.

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C.C.

answers from Chicago on

My daughter had laparoscopic surgery followed by monthly Lupron Depot. Because of side effects, she had to stop in the middle of the series of the Lupron Depot shots. She experienced hot flashes and other symptoms of menopause as expected by the shots. At the point where she experienced depression, the shots had to be stopped. We have been told that eventually she will be having more laparoscopic surgery for her endometriosis. We have been told that there are steps for treating endometriosis but it does not have a cure. There is some percentage of people able to take the entire series of Lupron depot shots without being hit by depression that do get temporary relief from endometriosis which is the whole point of taking the Lupron depot shots on a monthly basis. My daughter has shifted to taking Seasonale to suppress having her period for 3 months. If we had to do it all over again, we would still TRY to have the Lupron depot because there aren't a whole lot of choices for women with endometriosis.

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T.M.

answers from Chicago on

Have you had the surgery yet? I can personally recommend Dr. Howard Topel up at Rush North Shore, who did a laproscopoic endometriosis ablation surgery on both me (just over three years ago) and also my sister (a couple of months ago). I honestly would say the surgery is probably the best way to go, b/c you then have a better idea of what you're actually dealing with. THEN talk with the doc about how to manage it afterward. I had doctor's tell me all kinds of things (from "have babies!" to "take bc" before even officially diagnosing it. Dr Topel explained that if I had endo on my fallopian tubes, having babies was NOT a good idea. He is VERY good at laproscopic surgery (he was one of the first to start doing them, and so has lots of experience).

Good luck on your decision. I too have always been too nervous about side effects to do any kind of hormone treatment.

You may want to also talk to a NaPro doctor about trying to get to the root cause of your endo. I know "they" say no one knows the cause, but I guess it's worth a shot....

T.

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J.F.

answers from Chicago on

My sister just finished her lupron therapy. She didn't experience any side effects throughout her treatment. I think she took 6 1-month shots. She had lap. surgery prior to lupron therapy, in which they removed one of her ovaries & several large fibroids. She had been trying for kids with no luck for many months, when she developed extreme pain. She underwent immediate surgery, & at the time of the lap. it was discovered she had severe endometrosis as well. She went on lupron in hopes of conceiving in the future. (She has no kids & wants them). I wasn't sure if you were planning on expanding your family or not. Wasn't sure if your endometrosis was painful or not. I know Lupron is used to treat many other things, including prostate cancer as well. Firsthand, as an urology nurse, I know many men do experience side effects, but I only have knowledge with the 4 month shot. We never offered a 1 month shot. I know Lupron side effects would scare me too since there are so many. Maybe you can talk with your MD about other options available. Then decide what is right for you.

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S.A.

answers from Chicago on

I don't know much about the drug but I do know about the condition. In 1992 I started having big pain during intercourse and sometimes even when I walked or was active. My doctor finally decided to go in and look after he tried a few things to alleviate my pain.

He did some surgery to clean it up and then put me on the pill for three months at a time to prevent regular monthly periods. I had already been on the pill for several years prior and this was just stepping up the use more than what I had done previously.

Needless to say, it did not help. I feel it got even worse. I suffered for 5 or 6 more years with constant pain and got to the point where tears would stream from my eyes when I was intimate with my husband no matter how careful he was. It just hurt.

In 2001 I decided to go off the pill and I got an IUD. First thing I noticed is that my very light, spotty three day periods went to 5 day heavy periods. It didn't really hurt more than my previous periods. It was just heavier and longer and I had less PMS believe it or not. After two or three months I noticed that my pain started to ease. The doctor just dismissed me and told me that my endometriosis would get worse because I was having heavy periods now. But it didn't. It got better. After every heavy period it really improved.

I decided to get pregnant the next year and had the IUD removed. I got pregnant five months later. I was pregnant for 10 months, nursed and did not have a period for 10 months, then had three or four periods and got pregnant again. I was again pregnant for 10 months, nursed and did not have a period for 10 months and then had about a years worth of periods.

I have had very little pain if any during all this time.

My personal opinion. It was being on the pill from the time I was 17 that caused it. The theory is that it is backflow. Well while on the pill I didn't bleed. My periods were so light and short that I could practically go the three days with one pad if it weren't so unsanitary. The only reason I changed was for hygeine reasons not because the bleeding.

I do believe that the lack of shedding was what caused my endo. When they put me on the pill for three months that made it even worse. Your body wants to get rid of that stuff. When it can't it just migrates, builds up and so on.

I could be wrong but from my experience having a heavy period and then being pregnant and not having one for so long is what cleared mine up.

I will have my third child at 40 in a few weeks. This will probably be my last so I'm curious to see if my symptoms will ever return. I won't go on the pill again. That's for sure...especially not at my age.

Any way, that is my very unscientific opinion and experiences.

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B.R.

answers from Chicago on

I was on Lupron for almost a year cause my endometriosis was so bad. I did not have any problems with it. It was great, no periods, my body thought it was pregnant. Definitely give it a try. Mine did not work, had to have a full hysterectomy. Hopefully that won't happen to you. Not that I miss having a period though!!
Barb R.

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M.R.

answers from Chicago on

I'm sorry for gettting back to you so late with this. I had this treatment over 13 years ago and other than the hot flashes I don't recall much in regards of side affects. Good luck and Depo really helped my symptoms. Now I have two boys that I never thought I'd have.. M. R

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K.H.

answers from Chicago on

depending on the severity of your endometrosis you could consider a natural approach, it's an inflammatory condition and responds very well to therapuetic dosages of natural anti-inflammatory nutrients, balancing of hormones and a good look at your diet and stress. If you choose to take the drug you could at least try and regenerate and detox the liver, it's not to say that other organs won't be harmed or other side effects, it's pretty scary isn't it ??

~ K.

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V.R.

answers from Chicago on

I originally went for treatment when I was 20 years old. I had a laproscopic procedure to diagnose the stage, etc. I accepted the treatment of lupron as I appeared to have a stage 3 ? I can't remember exactly now but know that it was supposed to be severe. I went because I wanted less menstrual pain not because I wanted kids. I had side effects but I have to tell you that I get cold easily and I did it in the winter. It was perfect because I was finally warm.. I am sure that I experienced some depression but I don't think that it was too severe and who knows what was actually growing into my own angst of the age... Smile

I stayed on birth control for years because the doctor told me that it would maintain my gains. It did help a lot! In my later twenties, I went for acupuncture because I still had some pain and I have to say that at 33 years old, I am almost pain free with my menstrual period. I am having my first baby and have not had the problems conceiving that they said may be there. Truthfully, I learned that endometriosis is a catch all for many different symptoms for women and it depends on what your goal is with what treatment you get. If it is about your menstrual period or if you want to have kids, there may be different takes. The wholistic world of alternative medicine really appealed to me. I took three different herbs that my acupuncturist recommended over 5 years after the lupron treatment and it has made a world of difference to my quality of life. I think western medicine only has one way of looking at things sometimes and I am not sure that it is the best for our bodies....

There may be other alternatives that I could have tried before the Lupron but I was 20 and just wanted the pain to stop... Good luck!

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