Has anyone been on Lupron and how did it work for you?

[Mimi81]

Hi I had mild endometriosis a year ago and underwent laparoscopy to have it removed. I was on birth control for a year after that, and I thought i put my misery behind me. I didn't feel anything for a year, but then a month ago, while waiting for my refill, i skipped 4 days without taking my birth control. i went right back on the pill the fifth day but i started experiencing cramping. i thought it was just i was ovulating but a month later the symptoms got severe and I went to the ER, to find out that my Endo was coming back again. I was so devastated. My gyn has talked to me about putting me on Lupron. My friend told me it was the best thing that happened to her. Did any of you have experiences on Lupron? thanks for your feedbacks, i'd really appreciate it.

[achilles2]

I forgot to add that you want to find out more about adrenal issues just google adrenal fatigue.

[achilles2]

As far as only having pelvic pain during my period I do not know, because I also have interstitial cystitis (IC) (Thank the Lord for Elmiron) and sometimes it is hard to tell if the pelvic pain is from IC or endo.

That is a lot of scar tissue from a laparoscopy or did you have a laparotomy? If it was a laparoscopy you might want to get your thyroid tested if your Free T3 is low it can contribute to too much fibrin which this is what makes up adhesions (and I believe scar tissue). Also it could also be worth it to have your adrenals checked.(Especially with all the physical stress your body has had.)

The tests you would want for thyroid are TSH, Free T3, FreeT4, and thyroid antibodies. The tests for adrenals are cortisol (not the 24 hr urine collection preferably the saliva test but there is also a 8:00 AM blood draw.) The cortisol can come back fine and your adrenals may still not be up to par so you would also want to ask them to check your renin and aldosterone level.

Also if you do these tests be sure to get your results and do not take it is in range because according to the labs my TSH was in range when I was diagnosed with a hypothyroid, but because I had symptoms and the THS was over 2 my wonderful doctor knew I need to be treated for hypothyroid. (The labs ranges are usually around 0.4-5.0 but a good doctor who understands thyroid knews that it it is over 2 there is usally a problem.) If you want anymore info on thyroid I recommend getting a hold of "The Thyroid Solution." It is easy to read, very informative, and has a great index.--   http://www.amazon.com/Thyroid-Solution-Revolutionary-Mind-Body-Program/dp/0345429206

[Mimi81]

wow, that's a lot of periods! i didn't have any problem with the pill, no side effects. I was on it continuously, meaning i didn't get any periods b/c i skipped the sugar pills and went on to the next one. it was a breeze for a whole year. so u only have a problem when u get your period? when i started having the endo symptoms last year it started with really painful periods and then it became an everyday thing. same right now, after it came back i have those killer cramps every day. i can't do anything until i get this Lupron. I was cleaning my bedroom yesterday and my back just gave out. Right now I'm keeping the pain under the control by taking painkillers. I am waiting for my gyn office to call me to get the shot. I can't wait, I feel like a prisoner in my own body :( I am in good spirits though, sometimes it takes these kind of things make u really appreciate your health! I'm not gonna lie, I'm really mad that I got it again, just I'm gonna make sure that when i go back on the pill that I'm not gonna skip any days. I had 4 days off the pill before my next appointment and I was out of refills, that's when the endo came back. After the Lupron I'm going to get back on the pill, my gyn said that we will wait to see if the symptoms come back, but i just don't want to take a chance. So did you not have symptoms for a while after you got off the Lupron? Hopefully you won't have to do another laparoscopy, it was not a very good experience for me, the inside took me 4 months to heal, i had to do myofascial release b/c of all the scar tissue i got from surgery, and i had to do physical therapy on my legs for 6 months b/c they got weak from bed rest. I will pray for you :)

[achilles2]

I had started lupron in Nov '07, about a week after I had my lap, so of course I am no longer on it. My sister was on lupron for a year. I cannot have b.c. because it make my migraines 100 times worse and it messed up my cycle. Three periods in a month and half-- YUCK! I am so thankful that I had a doctor who listen to me and said yes you need to off of b.c.

To manage my symptoms I use turmeric (Oregon Wild Harvest Brand is the best), take bromelain (learned about this from my chiropractor), take cod liver oil for the omega 3's and 9's, plus I avoid things I know will cause inflammation-- about 1 week before I start, chips are out and anything else deep fried in oil. I also do not eat gluten or dairy (at all) and I avoid soy as much as possible. I also stay away from high fructose corn syrup (now call corn sugar). When I do have my period I take Advil and Tylenol (2 three times a day) and I drink ginger tea (Yogi brand).

I do have a feeling that sometime in the future I will need another surgery as the pain is starting to increase during my period. But I am hoping to put it off for a while.  

[Mimi81]

p.s. so have u finished the 6 months? my doctor said i might not have the symptoms afterwards. if i still do, she will put me back on the pill. what are you doing for your endo currently?

[Mimi81]

I haven't had a period for a year b/c i was on continuous birth control therapy after my laparoscopy surgery a year ago. It was all breezy and cool and I had no symptoms until a month ago. i went 4 days without the birth control b/c i was out of refills and i couldn't get an earlier appointment. After four days I went back on the pill but by then the cramping had started again and it got worse and worse even though i got back on the pill. I had a period for a week, a very light one, and then the pain just shot through the roof. I will have to stop the pill right before i get the Lupron shot, so for now I still have no periods b/c i'm taking the pill continuously. My doc didn't mention blood work yet, maybe on my next visit but I'll ask her about it. It's great to hear you were pain free, I want my life back! Hopefully I will have minor side effects too :)

[achilles2]

And yes I was pain free. :o)

[achilles2]

As far as side effects I had night sweats, some hot flashes (but not much), my biggest complaint was that I felt spacey a lot of the time. After the first shot you still have a period. Then I did not have one for about six months. Did your doctor say whether or not you will have regular blood work to check hormone levels? Every time I got an injection I also had blood work done.

[Mimi81]

hey thanks a lot for the feedback. i am also gonna be taking the shot every 4 weeks (month) for six months. 3.75mg to be exact. I already got the prescription for the add back therapy but i'm scheduled to get the shot next week. How about the side effects? A lot of ladies have told me about the hot flashes and night sweats, did u have them? Right now I just want some kind of remedy b/c i've been forced to stay home for the past 2 weeks, even with the painkillers i can't do a lot of work b/c the symptoms don't go away 100%, and it's frustrating! i already had to drop a whole semester of college credits last year when i was first treated for it with laparoscopy. i never ever thought it would come back a year later. anyway, so u didn't have any pain? and how long after u had the shot did it kick in and u were pain free? thanks again, i really appreciate it!
Mimi

[achilles2]

If you do decide to have lupron. Some things to know: I had it for six months. I had injections every four weeks (my doctor does not use the three month injection-- I think he thinks it is too strong). Also be sure to demand add-back therapy. My doctor says that it is equivalent to torture not to offer add-back (It helps a lot with the side effects of lupron). Also you cannot take it longer than a year because it will destroy your bones to use it longer.

(My doctor should knows all this because he was one of the main researchers and doctors with lupron.)

I hope this helps,

achilles2

PS It was great not have a period for six months.

[Mimi81]

Hey there, I hear you about taking a long time before you were diagnosed, I actually self-diagnosed myself, believe it or not. It took them three months and they had no idea. My doctor always tells me it's good i was persistent b/c they would have never guessed. Anyway, I had surgery for it last year, my endo was very minimal and the gyn put me straight on birth control b/c they didn't think at the time that i needed it. I came back from vacation and i scheduled my next appointment and i missed 4 days of the pill b/c i didn't have any refills till then. My cramps started the 3rd day and got worse and worse, even though i got back on the pill. Honestly, i didn't think 4 days off the pill would've made a difference since i've been on it the past year without a single problem, so i was devastated when i found out it came back. My choices are either surgery or Lupron, and I swore i would never have surgery again b/c i had so much scar tissue from it that i had to do myofascial release and i had physical therapy for my legs for 6 months b/c i was inactive for four months while waiting to recover, overall not very good experience for me. I can deal with the hot flashes and the weight gain, i just don't wanna have any other side effects, so help me God! I never had mood swings with the pill so hopefully i won't have any with Lupron. I hope it works for me b/c it's my only choice right now. I know there is no cure for it, but one lady i know told me that it actually got better after she had her baby. Anyway, I am in no way ready for a baby, but I have no other choice so i'm gonna go ahead and take it. I talked to another lady who had the treatment and she said it worked well for her. thank you, and i have fingers crossed, for i am in dire need of a miracle!

[megcon9]

I was on the Lupron (depot lupron injections) for six months for my endo.  I started experiencing extremely severe abdominal pain almost a year before it was diagnosed as endo.  I went back and forth from specialists, ER stays and my gyn before I was finally diagnosed with it.  I've had two laparoscopic surgeries to remove scarring, as well as to deal with ovarian cysts.  The Lupron did help with the pain and hopefully reducing the scarred areas, but I had an awful time with the side effects.  I had hot flashes at least twice a day and to this day (having not taken the Lupron in almost 3 years) still get the hot flashes.  I also gain about 30lbs over the course of the injections.  Like MarandaH, I had the mood swings and depression too, but it's manageable with a good support system of family and friends.  It did help, but as I was told it is not a fix.  There is no cure for endo, only ways to mitigate the symptoms.  I suggest you really look into it and read about all the side effects before you decide to start the treatment.  Good luck to you!  I hope it is the miracle for you that it was for your friend.  Cheers!

[Mimi81]

Hey Maranda, thanks for the feedback. I have a friend who took it too for six months, 3.75mg/a month and for her it was the best thing that ever happened. she had a problem with hot flashes too, but nothing too severe. I did laparoscopy last year to remove my endo, which was really little, but very painful. the laparoscopy is not that bad, they send you home the same day of surgery, just make sure you rest a lot. it will be a bit painful while your body is trying to heal, but it's all normal. i will definitely pray for you! i know how worried i was before it but i also couldn't wait b/c my endo was excruciatingly painful. but since my endo is coming back, this time around i am doing the Lupron. I was on continuous birth control after my surgery for the endo to suppress it, which meant i had no periods, and I had no side effects from the birth control, so hopefully i won't have the mood swings and stuff. Also my strong faith in God helps me stay calm and just hope for the best. I hope it all works out for you. If I have any more questions, i will definitely let you know. Thanks!

[MarandaH]

I was put on 4 months of injections of the Lupron a few months ago.  I did experiance the hot flashes and night sweats on a nightly bases, which lead to no sleep.  There is another medication to take with it to add some hormone back to minimize some of the side effects ( I didn't try these). It did however stop my episodes of extreme pain since it stopped me from mensturating.  I have been off of it for the past 3 months now to try and conceive on our own.  I just got my second cycle back and it was the worst one yet, I ended up in the hospital and now am scheduled for endo surgery (lap) next week.  Not sure how long you can stay on the Lupron or if they have lower doses, but I couldn't handle much more of it.  Everyone reacts differently, I also read about the crazy mood swings and depression.  Just have friends and family watch you closely like mine did.   Good luck, let me know if you have any other questions.