Lupron for Endo

[Cystie]

Ive been very sick for quite some time. I have 2 cysts one on each ovary that wont go away. Doctor finally gave me 2 options surgery to remove cysts and to see whats really going on or Lupron for the possibility that I might have endometriosis. I really dont want to take a 6 month treatment of injections for I disease I might not even have. I've decided to do the surgery. If I find out I have endo is Lupron a harsh medication. Does anyone have any experience with this medicine. What is your experience? Am I better off just dealing the pain instead of taking these injections. I would like to hear your opinions. I know everyone is different but Im pretty sensitive when it comes to medicine. I have done some research on this medicine but Im very unsure about this stuff.

[msmarlowe]

I took lupron for 3 months and every month after the injection I had some crazy side affects. I soon found out I am allergic to birth control and lurpon. Lupron did help however help a little. Because of being allergic and had stop breathing several times I have decide to have a hysterectomy. The surgery I think is a good choice, I did that last year and had the endro removed as well as the cysts.

[joy1293]

Wow I really should have checked that before posting! Sorry alot of it is spelled wrong or are the wrong words like not survery but surgery and such. Sorry if its hard to read. These meds when I first take them make me really spacey and I still havent had my coffee yet lol.

[joy1293]

Well I am glad my little book helped you :) I have gone through so many dr.s and to be honest havent found a good one yet, well not one that could treat my endo the way it needed to be. I pray that you find a good dr. Just dont get discouraged because it can take time, it can take going for a 4th or 5th opinion to find someone that you feel comfortable with. Weight gain does stink, and its odd because the first 6 months on Lupron no weight gain at all I think I lost like 2 pounds, then this 3 month shot and survery and I have gained 10-15lbs. So it all depends on your body, also I have been watching a lot of dr. oz and reading some articles he has written on stress and he says he knows what stressful a womans life is just by looking at her stomach because when we are stressed the hormones and chemicals we put out-mainly cortisol will make us gain weight, essp. woman and essp. in our middle area. Which I would have to agreee since I have been much more stressed and most all of my weight gain is there. I know everyone has a diff expiernce with drugs but mine with the Lupron was the montly inject. didnt make me gain any but the 3 mo one did. I just started the Depo so well see how this goes. Like I said I have been on like 11 other kinds of birth control pills over the past 7 years and have gained over those years about 30 pounds so it wasnt that bad it wasnt until the 3 mo shot of Lupron that I packed on the pounds within a month. Also endo makes it hard for us to exercise. My dr. is having me do phys ther to get me active and help with that but not to make me in more pain. Good luck and please mail me and letter me know how you are doing. You will be in my prayers. Do you have any kids or a husband/boyfriends?? How old are you if you dont mind me asking??

[Cystie]

Oh my goodness you have been through it....I dont mind the length of the message you really have helped me from what you have said. I really dont like my gynocologist, im going for a second opinion and I will pray about this treatment. Thank you. Im scared about the weight gain thats what worries me I have a fear of weight gain but if it means getting better pain wise I might give it a try but research is what I will definetly do first. Thank you for your very informative help. Im worried my endo if thats what it is outta control. I hurt real bad up under my rib cage and I literally itch everywhere. Im seeking a second opinion, Im worried my doctor is not going to take care of me properly.

[joy1293]

Hi there, warning- this is most likely going to be long, but I hope that it helps you.If you do have endo research is the most important tool you have. I have had cyst and period pain for over 7 years and was finally dx with endo almost 2 yrs ago and polycystic ovarian syndrom(pcos) this past year. I too had a surgery to dx the endo and I had talked with my dr and told him whatever he found to remove since he was in there already. But sadly he did not do that. he just dx it and then closed me up and told me to go on lupron. Of course I found a new dr right away. Lupron is a highly debated ************** as it can have long term serious side effects. Although the internet and forums are a great place to get advice just realize that every person is different and people will talk more about the bad not the good... so the most important this is to pray! I will be praying for you as well and please feel free to message me and I can go into more details with you. As far as what I have done for treatment.... I have tried 11 types of birth control pills-combo, progestrone only, continuous,patches ect. None helped, but this should be the first option as if your body reacts badly it is only a pill that can be stopped right away(some you might have to slowly go off so be sure to talk w/ your dr.) the next step is usally the depo shot(which I am currently on, I just started yesterday actually.) Sometimes depending on how extensive your endo is they will recomend Lupron first. Now the good thing unlike Depo is there is a monthly shot not just a 3 month shot. I did the montly shot for 6 months (you can do up to a yr but will need add back therapy-which is low dose bc pill basscilly which my body hated.) now with the Lupron I did not have any pain relief and I had side effects- hot flashes(  I had two fans in the winter going at all times, night sweats were bad too made sure to sleep in shorts and tank tops) I also had very bad mood swings and depression(which I never had before) I had it for the first month and for about a month when I stopped it. So watch out for this as well. There is weight gain and acme but I did not have either this first time. Then I had another surgery- this time since I had 15 cycst wrapped around my ovary they dr removed them and did ovarian drilling to prevent future cycst. The most important thing about surgery for endo is to find a skiled surgeon. I cannot stress this enough. Most drs. will just burn(ablation) the lesions which will only take off the top layer. The most effective way to remove endo is through excision where they excise-cut out the endo. I had to travel 3 hours to find a dr who did this. but it is well worth it. Also a lot of times the endo can affect other areas for example in my case I have it on my bladder make sure to ask your dr if they are skilled to do so if needed. I will put the link for two web sites that I found most helpful. Oh back to treatments !:) I had this surgery in July of this yr and since it had only been a little over a yr since last surgery the dr was suprised to find about 25 times the ammnt of endo. It was gluing all of my organs together and they had to detach them to their normal appearance. So because of this the dr suggested I go back on the Lupron to prevent this growth. It was suggested that even though I had bad side effects they were not the worse(I have heard of girls who would have to change the sheets 3 times a night from the sweats, had mirganes or other damage that lasted forever) so mine were not that bad so they suggested I do the 3 month shot. This shot again did not help any and the side effects-acme very bad weight gain -I gained over 15 pounds in a month!..were a lot worse. So I went to my dr yesterday and he told me the Depo is my last option. If that doesnt work I can either live with it( which if any dr. tells you this or to just get pregant or that pain is normal run dont walk the other way!) I am going to find another dr. maybe a specialist if I can find one, unfourtly most dont take insraunce so it can be hard. and then I think have a hysto. Again this is something that is last resort as even after having one you can still have pain.

Sorry for so much, but I know when I first started out I just wanted someone that had been through it to give me more than a short answer. Because this diesase is anything but that. It is something that for some must be dealt with forever, others I have seen better with just birth control or a shot of Depo and fine for 10 plus years. Whatever you decied know that I am here and so are others and most importantly so is God. He will never give us more that we can handle. And although I feel at times that he overestimates me :) I know that he doesn't! Like I said here are two websites I have found most useful( there are also natural treatments too!) and feel free to write me a message.
God Bless!


http://www.theendoclub.com/prayerrequestsjoinpc.htm
http://www.endometriosis.org/

[Neta100]

Hi there.  I was pretty much in the same case as you are.  I had a cyst which they thought could be malignant and I had surgery last December.  What I had was a 6 cm endometrioma and adhesions, but the doctor was able to drain it and left me my ovary.  I was then placed on the 3-month Lupron injection and I had some side effects like night sweats, a little headache, tiredness, hot flashes, but at the end it was worth it since I have been checked and there is no sign of any cyst and I feel pretty well.

Everyone is different, but in my opinion it's better to have surgery first and then see if it is endometriosis or not, and have the Lupron if it's necessary.

Best wishes,

Neta

[mkseym]

I think wanting to do the surgery first is a great idea...that way you won't always wonder if you are treating something you don't even have.  As far as the Lupron goes all I can say is it works wonders as far as pain management for me.  The side effects are bothersome (night sweats/hot flashes/mood swings) but they don't bother me as much as the pain.  Lupron affects everyone different and the only thing you can do is see how you feel after surgery and if they still recommend Lupron you can try it.  You don't have to get all 6 shots if it is bothersome.  Good luck!