November 10th
2009
3:32 PM
For me, it has been about 10 years, I think, since I was on lupron. I got a shot every 3 months for almost 2 years. At the time, the Dr. told me that the Lupron was still in the experimental stages but they thought it would be beneficial for me to try. I had a mini lap done because of a softball sized cyst rupturing so she couldn't see anything in my abd with the regular lap. I was diagnosed with stage 4 endo and started not long after on the lupron. I do not envy any woman that has or is going through menopause because the mood swings and hot flashes that I remember, were aweful.
Since the end of my Lupron, many years ago, I have noticed a few things that I never really put in line with the shots, ex...severe headaches, bad memory loss (to the point that I sometimes cannot remember things I just did), joint and muscle pain.
For me, the Lupron was a God send for the endo, I was cleared after about a year and went back 2 years ago for another lap and that was clear of endo but I have bad adhesions.
Before all of this started, I was a very active person with horseback riding, clogging (a type of celtic dance), and a very dependable person. Things are getting worse for me and I am only 32 yrs. old.
This is one of those moments, I know there was a reason for me to write this but now after being so long from reading the other comments, I cannot remember what my point was. No need to delete this though.
If anyone knows of anything that I can do to help with the memory issues, please help me out. All kidding aside, I cannot remember to take the vitamins that are suppose to help me remember.
November 6th
2009
6:59 PM
I have had two shots of Lupron, as a result I've gained almost 30lbs, had very bad joint pains and little hot flashes. I also experienced hair loss and became moody at times. However, my doctor did warn me that I would gain weight as a result of the shot and that I may experience hot flashes. December 2009 will make one year since my first shot the second shot was in April and I"m just beginning to feel normal again. It is now November 2009
-- By bcammie | Reply | (1) replies | Private Message me
November 2th
2009
10:50 PM
I am suppose to get my fourth shot tomorrow!!I have been experiencing a lot of I am get hot flashes,vaginal dryness really bad, increased appetite,night sweats,and weight gain,last one that has been horrible to deal with is my severe headaches.I am 24 years old and mom of 3 children.We wanted to have the option open if we did decide to have another child.I am still having the cramping to the point that I can not be the mom I want to be.I really don't know what I should do.Now reading all these messages I am very scared.Any one with comments please feel free!!
-- By mykids3 | Reply | Private Message me
October 29th
2009
9:39 PM
I had my surgery July 16th. Last Lupron shot was June. My period has started back . I think it took about 2 1/2 months for mine to restart. I stop having the severe .irritating night sweats but I still get these off and on hot flashes that are not as severe as they were. I am hoping that the temperature changes will hopefully stop in the next few months. Although I don't like the body temp changes. I feel much better now that I don;t have the severe pelvic pain.back pain . severe abdominal pain . urinary tension and pain . difficulty standing straight and walking and excessive bleeding.
-- By virgo38 | Reply | Private Message me
October 26th
2009
10:56 AM
I have been getting lupron depot injections since my laproscopy back in August and had no trouble the first month except for hot flashes. After the second injection I started to experience migraine type headaches and I would get the shakes really bad through the night almost as if I was coming down with the flu. I just had my third injection and the symptoms are worse. I feel tired, nauseated, body aches, chills through the night and hot flashes all day long. Will my symptoms continue to get worse as I go on? I have two more months of injections and I am contemplating not doing it. My husband and I have a beautiful little girl but really want another child. Is two more months really going to guarantee pregnancy or is it a waste of my time?
-- By sarahmitch23 | Reply | (1) replies | Private Message me
October 25th
2009
6:10 PM
I'm 24 and just recently finished my lupron treatment for endo. I'm still having some of the side effects and have yet to start my period again. I honestly would've rather had surgery again for endo than go through months of the side effects. The memory problems, overall fogginess, night sweats, insomnia, mood swings, hot flashes, and just the stress and complete crappy quality of life I've had most of this year has completely affected all aspects of my life. It's not easy at work, at home with my husband- surgery took a day or so to recovery from and this has been a nightmare for months and months. I'd really think about it and research the benefits for you vs the side effects before doing it. If there are any other options- I'd absolutely consider them.
-- By jaroski | Reply | (2) replies | Private Message me
October 14th
2009
9:59 AM
ok, so I am 28yrs old just had my lap for endo on October 1 and my doctor has recommended lupron, and am going to be getting the med in a week to 2weeks,but after reading this I am soooooooooo scared to even get near this med. Its like you either take this with the hope of saving fertility and no pain..or not and have endo ravage your body and you will live with unbearable pain!!! I have no idea what to do,and i am so scared after reading this. Is there anyone that did not have weight gain, headaches etc...anyone that can testify that lupron actually worked for them? did any one have a baby after doing this. my bigs thing is being able to have a baby. Cause right now its my health on the line, my ability to have children, my ability to have a normal life free of endo pain or these crazy, horrible side effects...please help me!!!
-- By jadejean | Reply | (3) replies | Private Message me
October 12th
2009
6:12 PM
Well, I was doing some research because my pain from my endometriosis is returning and I'm actually considering asking my doctor for another round of Lupron. I was on lupron over 2 years ago and experienced minimal side effects. I had the hot flashes, no hair loos just hair growth in unwanted places like my face, and just a few bouts of tearfulness. i actually lost weight on lupron and consider it to be the most sane time of my life. The women in my family over produce estrogen so i'm not sure if maybe my experience was different in that my estorgen level was not depleted to nothingness but to a more normal level. I am saddened to hear so many women suffering with what I considered my wonder drug!
-- By ans4thern | Reply | Private Message me
September 2th
2009
4:15 PM
I just had my first shot of Lupron yesterday. I have an oversize uterus and will need to have it removed. I am 40 and do not plan on having any more kids, so that is cool. I am taking the shot to shrink my fibroids down to have the less invasive surgery because they are extremely huge at the moment. The same day I took the shot, I felt extremely drowsy and had to lay down to take a nap. I woke up and felt full of energy. The next day, slight tension in the neck and headache but that is it so far. I have some Premarin Estrogen tablets to take just in case of the hot flashes and night sweats but I am not taking those things unless I have to. I already had severe hot flashes and night sweats before all of this, so I am use to it..so its not a big deal..I also already had severe mood swings, extremely lethargic, and bouts of depression before all of this, so I really want notice the difference. So, so far, so good. I am not experiencing any side effects from the shot as of yet that I was already going through, anyhow..Each person is different..
-- By denise3664 | Reply | Private Message me
August 28th
2009
2:03 AM
Well this is my second go around with Lupron. In 2004 I was on it for 7 months for the treatment of Fibroids, at the time I was 25 and I was told the only other choice was a hysterectomy. Well my doctor at the time said the side effects would not be bad and so did not give me anything for the mood swings and hot flashes. This almost caused a divorce, I guess I was pretty bad! Well it did the job, but I did gain 30lbs. Five years later, I was diagnosed with endometriosis. I was informed that I needed another go of Lupron. Well in those 5 years I had lost 100lbs and was feeling good. I started the Lupron in Feb. of 2009 and have gained almost half of that weight back and still no period. I have not had any children and it is looking like the next step for me is a hysterectomy. My depression that I thought I had under control worsened considerably and now am on 2 different depression medications. The only positive thing I would have to say is that the pain is gone for now and this time they gave me something for hotflashes and mood swings.
-- By starfish58701 | Reply | Private Message me
August 26th
2009
11:30 PM
I took lupron for about a year or so back in 1999. I don't remember a lot, just the hot flashes, etc, that I was warned about. I began to have memory problems a little. As the years passed by, it became worse. It is 10 years later and I have no short term memory. I have searched and searched to figure out what is wrong with me. My memory is gone. Its a sad thing, that this shot is still being given.
-- By cglortiz79 | Reply | (3) replies | Private Message me
August 12th
2009
8:42 PM
I am 19 years old and I have depression. I had a Laparoscopy done in January to remove a rather large cyst... during the surgery they found that I have endometriosis mainly on my right side. After about two months of horrible pain (after the surgery) my doctor decided to put me through the 6 months of Depo Lupron. After a week the nausea was horrible and I actually vomited at work. The hot flashes have been horrible and my body hurts all over all the time. About a month or so into the treatment, my depression intensified to the point that I didn't want to live any more. I would sit up at night just thinking about how I could make it all stop. Crazily enough I stopped taking the depression medicine while one the shots and I felt a little better. I still have some bad days but it is better. The night sweats have gotten worse the past two months. I have a consult in a couple of weeks to figure out where to go from here in my treatment. I've read several "testimonials" and it seems that I'm not alone in the way I feel. My friends and family haven't exactly been understanding about it either. It's nice to hear that other people can sympathize with me.
-- By cthornton_89 | Reply | Private Message me
August 11th
2009
10:48 PM
I am so glad that I found this website I thought I was loosing my mind. Maybe I have, I used to be really quick on decisions, I was able to remember things and concentrate since I have been on lupron I cannot remember things at all. I feel like a complete idiot when before I used to feel kind of smart. On top of that I have had massive hot flashes for about a year.
I had laparoscopic surgery in May 2008 for endometriosis, held of on taking lupron for a few months than finally gave into my doctors advice to take lupron in July 2008. I had my last lupron shot in February 2009 and still am having hot flashes, memory loss, depression, weight gain, and still no period. Which after all of this is the scariest part of the whole thing. I went to my doctor today and she told me that I should have started my period already and I may have now gone into menopause permanently.
Wow what a great way to start the day sorry you cannot have kids because you could be in menopause. HAS ANYONE HAD THERE PERIOD RETURN AFTER NOT HAVING ONE FROM LUPRON AFTER 6.5 MONTHS? I am really worried that my chance to have a child is no more after having surgery to prevent this very thing from happening. HELP.
July 30th
2009
9:34 AM
I was on lupron following a laproscopic surgery when I was diagnosed with endometriosis. I had two 3-month shots. I gained a little bit of weight, and had some hair loss. I would also recommend to people that they take add-back therapy like I did, it takes away a lot of the side effects, and I barely had any hot flashes or night sweats. In the beginning, I was so scared to get the shots with seeing all the horror stories online about what it has done to people, but for me I think it's a success story. I have been without pain for 10 months!
-- By morgansmissy | Reply | (1) replies | Private Message me
July 16th
2009
6:22 PM
I have severe endometriosis and am even severely anemic from the cysts that developed and my monthly cycle. I was going to an Oncologist for a year to receive iron infusions every three months. It is a two hour process. Not bad, but boring and sad because I was surrounded by cancer patients there getting chemo. I began my lupron shots May 2009 and it has been a Godsend! The pain is gone, I have more energy, I feel more alert and I am not sleepy all the time. My OB/GYN did put me on Wellbutrin as soon as I started getting the mood swings and that has been a tremendous help as well. The hot flashes and night sweats are really the only side effects I have to contend with. My OB/GYN wants to give me a prescription for low dose hormones but I refuse. I have lost a lot of weight over the years (174 lbs.) and am PETRIFIED of gaining it back. She told me that it was very likely that I would gain weight with the hormone replacement. I'd rather have the hot flashes and night sweats than gain any weight back as I worked sooooo hard to get it off and keep it off. Does anyone have any suggestions of any natural products such as herbs, minerals, vitamins, etc... that would help with those two side-effects?
-- By artemissa | Reply | Private Message me
July 7th
2009
12:13 PM
im currently on my fourth month of treatment with lupron and would like to know if anyone that had fertility problems was able to conceive after a course of lupron...? im 32 and have 2 beautiful children, but would like one more before i undergo a hysterectomy...i have been diagnosed with endometriosis, adenomyosis and severe pelvic adhesion's. i was in so much pain that it was ruining my life...the lupron has been pretty great this time around...six years ago i did it without any add-back therapy, but this time im taking progesterone along with it and the side affects have been minimal...still have mood swings and a decreased sex drive, but no hot flashes or night sweats. its definitely worth the pain relief...for me anyways.
-- By jen32 | Reply | (2) replies | Private Message me
July 1th
2009
4:36 AM
I have taken Lurpron Depot 3.75mg June 11, 09. I am due another injection July 09,09. I had to get a prescription of prometrium 100mg from the OB/GYN because of the night sweats and hot flashes.Since the injection, I have had and currently experiencing migraine headaches in the frontal lobe and temporal lobe areas. I have slight pain in the temples. I am going to see a neurologist because I was told the lupron may cause brain bleed with people whom have pituitary cancer. I would like to know if the CoQ10 and red yeast rice interacts with Lupron.
-- By twylha | Reply | Private Message me
June 24th
2009
1:39 AM
I am in the middle of my second month after getting the first shot (for 1 month) and the second ( for 3 months). I have recurrent fibroids and ovarian cysts that caused a lot of pain and severe bleeding.
I was scared to try Lupron. I consulted with my uncle who is an OB/Gyn and he told me that the version they use now is very safe, with side effects like many other drugs...
My doctor gave me options for the treatment, but because I want to get pregnant again (already have a 2 1/2 yr. old boy), hysterectomy was out of the question. The doctor removed some of my fibroids laparoscopically before I got pregnant with my son, but since they "showed up" again, he recommended to treat them with Lupron instead of removing them trough surgery, because the surgery leaves scarring that can later interfere with fertility.
Anyway, YES I have experienced many side effects mentioned here: hot flashes, mood swings, a couple of headaches, and some "bloating". The worst side effect for me has been insomnia...but they really haven't been that terrible...you learn to deal with them. I am in no pain and didn't get my period this month.
I guess everybody is different and they experience everything in a unique way.
My suggestion is to try it if you really need it and weigh in the pros and cons objectively.
Good luck!
June 8th
2009
12:18 PM
ok, so I am 28yrs old just had my second lap for endo and my doctor has recommended lupron, after reading this I am soooooooooo scared to even get near this med. Its like you either take this with the hope of saving fertility and no pain..or not and have endo ravage your body and you will live with unbearable pain!!! I have no idea what to do, my post-op surgery appt is this week, and i am so scared after reading this. Is there anyone that did not have weight gain, headaches etc...anyone that can testify that lupron actually worked for them? Cause right now its my health on the line, my ability to have children, my ability to have a normal life free of endo pain or these crazy, horrible side effects...please help me!!!
-- By lnbinion | Reply | (12) replies | Private Message me
June 3th
2009
6:50 PM
Just received 2nd Lupron shot and like so many others, severe fatigue and severe dizziness - cannot drive. Lots of headaches, and pressure in my head, blurred vision and an asthmatic feeling in chest and throat. I'm wheezing and having difficulty taking deep breaths. All this to reduce the pain of endo - I'm not sure which is worse.. I figured I could deal with the hot flashes and mood swings, but this is brutal. I feel really "drugged" and out of it. I hope the pain actually improves because I still have no life.
-- By cec | Reply | Private Message me
May 28th
2009
6:16 PM
I just went in for my second shot of Lupron (out of a series of 6) for treatment of stage IV endometriosis. The most noticeable side effect I experienced was during my first menstrual cycle after my first dose of Lupron. I had never experienced menstrual pain or cramping (even though I had advanced endometriosis) until after Lupron. I have a fairly high pain tolerance and yet the cramping for the first 2 days of my period were almost debilitating. I had extremely heavy bleeding and have had spotting daily ever since (app.18 days). I have gained about 3 pounds because I have no energy at all. I'm usually active and work out 4-5 times a week but by the time I get off work, I'm too fatigued to do so (hence the weight gain I guess). I have hot flashes and night sweats all the time. The most recent side effect is high blood pressure. I have never had high blood pressure in my life (I'm a healthy 25-year-old woman) and when I went in for my 2nd Lupron shot today, they told me I all of a sudden do. I don't seem to have mood swings but do feel depressed and sometimes more anxious than normal. I have experienced a decreased interest in sex as well.
-- By thylacine0113 | Reply | (2) replies | Private Message me
May 23th
2009
12:08 PM
I have been on Lupron for almost four years for my endo. I have yet to get my period but have to say that while on the shot I had hot flashes, severe mood swings, and night sweats. All of the symptoms came in cycles and for the most part I felt great. I actually lost weight, and the best part, never got my period (duh). My sex drive fluctuated and I did experience vaginal dryness. I just want to get my period, it's freaking me out that I haven't gotten it over a month after I was supposed to take it last.
-- By lizzyliz | Reply | (1) replies | Private Message me
May 22th
2009
11:03 AM
I've been searching for answers on LONG TERM side effects of Lupron hoping that it could give me answers as to what's going on in my body now!
23 yrs ago my fertility dr. gave me Lupron to inject MYSELF EVERY DAY (experimental back then). I had SEVERE endo since the age of 16 and was fighting that as well as trying to get pregnant thru invetro. I was 26. At 29 I had an emergency hysto. Now at 48plus I have chronic tendonitis where the tendons will shred off of the joints. I have been diagnosed with C spine and T spine disease, osteoarthritis and a mystery that I'm going to have to go to the Mayo to figure out (hopefully). I have tumors that are growing in my lower back...growing around nerves, tendons and bone, They aren't sure why they are there, why they are growing, or even what they are. Surgery removed 2 of them...but pathology shows foreign matter other than tissue/bone. All they DO know is that it is not cancer. One year ago I started losing weight (25 pds) for no reason. I'm now holding my own at 112 and hoping to figure all of this out. I can't help but wonder if Lupron or any other experimental drugs I was on has something to do with this. Is there anyone out there that used this drug so long ago??
May 15th
2009
6:24 PM
I guess this is case and point that all medications does not affect everyone the same! I took 8 Lupron shots and never gained a pound (lost some in fact, from all the sweating), never got headaches and my sex drive was unbelievably WAY up there!! I looked forward to each shot. The only side affect I considered unbearable was the hot flashes. I coped and again, I lost weight; therefore, I considered it a great sacrifice. I had a wonderful experience. After my first shot, I did get very emotional, but after the second one, I was enjoying the benefits. My energy level was up and I seemed to have had a new zest for life. It seems that every side effect mentioned by both my doctor and research was the opposite for me. My recommendation for anyone looking into the shots is to try it and see how it affects YOU instead of letting bad experiences by others guide you. Good Luck Ladies!
-- By dlynndvis | Reply | Private Message me
May 14th
2009
4:53 AM
Well, Let me offer a slightly more positive review of this drug. I have been on it for 5 months now and have one month to go. All my pain from the endo and the large cyst I had are gone, at least for now. Yes, I experienced hot flashes, night sweats, constant sweating actually, oily skin, nausea at first, and the two that are the hardest to deal with, acne and the weight gain. i think I've gained like 10 pounds, mostly in my stomach. From what I read on here it does not go back to normal after the drugs ware off as my Dr. assured me it would. Is that right? Has anyone gone back to normal weight wise after the drug? Oh, and I did have a mood swing here and here in the first 2-3 months but actually my mood is much better as the add back therapy had fake progesterone in it and I think my body was lacking that. I guess I'm happy with it as long as I can loose the weight afterward.
-- By sweetie1055 | Reply | Private Message me
May 11th
2009
6:13 PM
I was on the Depo Lupron for 4 months. I had all the typical side effects; hot flashes, acne, night sweats, and weight gain. All which I was told by my Doctor that are all normal.... I asked if there were any other major side effects and he said some, but with a very low occurrence and left it at that. Well, I started gaining more weight... I put on 15 pounds in less then a month. I had a lump on the side of my throat and couldn't figure out why I was so tired all the time, why my hair was falling out, and why my skin was so dry. I went online and read a little more about the drug and it's side effects. Yep, right there it said it was known to cause thyroid problems. So now I have to live with hypothyroidism, something that is manageable, but will never go away. All because this drug. I say if you don't need to take it, DON"T!
-- By nanny75 | Reply | Private Message me
May 11th
2009
12:14 PM
I just had my 2nd lupron shot, and I have to say I am fine, no negative side effects. My first shot, it had stop my hot flashes and I was sleeping better, after getting close to the 28 day mark , I started to feel the pain and discomfort that I had before the shots and agree to the 2nd shot. I was having hot flashes before the 2nd shot and still have them, but the most important thing is I am not having the pain which was horrible pain that I needed tylond codeine to help me. I have not seen any weight gain, I stay active and work out even harder , no increase in appetite, so I will take it and see each month if any side effects come upon me, but so far I am good. I have to say that I was already into menopause before these shots.
-- By daust243 | Reply | Private Message me
April 25th
2009
9:52 PM
My girlfriend has taken a total of 2 Lupron shots. She is due for the third, but refuses to go back. The first shot did not due much, but after the second, the night sweats and hot flashes came. Now, she is always tired, has been since a month ago, been having major headaches also. Feels sick at times and has gained 10 lbs. She is having acne problems and she even is taking a pill that is suppose to stop that problem. I have never seen a drug like this junk. The doctor never told her of all this, just said this will help with the stage 3 endo she has. DO NOT TAKE THIS JUNK!!! It is just another way for doctors to take your life away from you and still let you live.....
-- By concerned2009 | Reply | Private Message me
April 16th
2009
11:22 PM
I am 26 years old and I was diagnosed with endometriosis last year (2008). I had pain in my lower abdomen for years and doctors always told me nothing was wrong but I knew there was. Finally a doctor did an ultrasound and found a 7cm mass on my left ovary. I also had a slightly smaller mass on my right ovary. My doctor told me that he would need to do a lap to remove the masses and possibly remove my left ovary because he could hardly see any ovarian tissue on the ultrasound. Thank goodness when he did the lap I was able to keep but ovary but he told me that I had one of the worst cases of endo he had seen. My right ovary was stuck to the wall of my abdomen due to the endo and I even had endo on my bowel. He removed what he could but not all of it was removable. He suggested that I go on Lupron for 6 months to "shrink" the rest of the endo. I have been on Lupron for 3 months. I just went and got my second 3 month injection. I have had some side effects such as Headaches, Bone pain, Hot Flashes, Insomnia, Drowsiness, Increased appetite and major Mood Swings. All of which come and go. I try to stay active but I don't over do it. It seems to help with the joint pain. Most of my side effects were in the first 2 months of getting the injections. I am told all the time that everyone reacts differently to Lupron and there is a pill you can take to reduce the side effects of Lupron but it does reduce the effects of the Lupron so my doctor suggested that I not take it unless the side effects were unbearable. I don't remember what it is called but if you are one of those people having major side effects ask your doctor.
-- By vstout73 | Reply | (2) replies | Private Message me
April 14th
2009
9:50 PM
I'm a 26 year old female that has had the lovely experience of taking Lupron twice in my life. I was diagnosed with endometriosis at the age of 19 after having a lap. I had been suffering from excruciating back pain for months. The lap only helped for 3 months and then the pain returned. My doctor recommended Lupron for 4 months and so I jumped at the chance to feel better. I actually did ok with the shots. I experienced the hot flashes, fatigue and crazy mood swings but I was willing to try anything to feel better. After the 4 months, my life returned to normal and I had 5 good years of pain free life with normal periods. My body on the other hand did not react well to birth control so I couldn't use it. For the last 2 yrs, my husband and I having been trying to conceive with no luck. 1 yr ago my periods took a wild turn. I began bleeding so heavily that I was bleeding thru my tampons every 5 min and began passing clots the size of a half dollar. These episodes would last for bout 3 hrs. This continued for 3 months and so my doctor recommended Lupron again. I was cautious about taking it again, but I was desperate. This time around I suffered from weight loss, nausea, severe bilat hip pain (due to low bone density), and receding gums along with all the usual Lupron side effects. My dentist said my gums and teeth looked like I was 60 or 70. FYI, I have never even had a cavity!!! I'm now 3 months post Lupron. I still haven't started my period again but my symptoms have subsided. Its just a waiting game now. I hope to get pregnant soon but I will probably go on fertility drugs very soon. All I can say about this drug is that it worked for me the first time and I hope it did the second time. It definitely was not easy and I don't recommend anyone going into it lightly. Good luck to anyone who is thinking about it and I feel blessed to have gotten out of it with a lot less problems than other men and women
-- By emgrace | Reply | Private Message me
April 12th
2009
9:05 PM
I was diagnosed with endometriosis five years ago. I had laproscopy surgery and it was recommended that I start the Lupron shot right after. I had read lots about all of the side effects and decided to just stay on my birth control pill. After four years of dealing with chronic pain, my doctor said the Lupron shot was my best option. At the time my pain made my decision for me. My first shot was ten months ago. I continued with the shot for six months, gained weight, had terrible hot flashes, anxiety attacks, depression, mood swings, exhaustion, memory loss and the pain didn't improve at all! Besides the fact that I was so upset that the shot didn't do what I was hoping I lived with all of the side effects for those six months and I continue to live with them now even though I haven't had a shot for four months. Do these side effects go away? I feel like I am in a fog and often I feel so alone. It is hard to explain to doctors, let alone family and friends what my life is like.
-- By chenango | Reply | Private Message me
April 9th
2009
1:29 PM
I have endometriosis and would like anyone with the disease to contact me so that I can find out more information, etc. My email address: ******
-- By angel4lisa | Reply | (3) replies | Private Message me
April 9th
2009
12:55 PM
I am in month 4 of a 4 month Lupron shot that my doctor gave to prepare for surgery. I was told I might get hot flashes, loss of libido, increased urinary symptoms for a few weeks. No one said anything and there was absolutely nothing in all the drug leaflets they gave me that would have prepared me for the the horror story that my life was about to become. As if having cancer was not bad enough.Since day 2 I have suffered so many bad side effects that I have lost count. The worst is insomnia and nothing has helped including high doses of Ambien. They suggested Lunesta but my health insurance company balked and even if they had said yes, my co-payment would be unaffordable. This stuff is more expensive than gold. I am exhausted all the time. I have terrible memory problems that are so bad that I can be talking to some I know really well and not remember their name. I am unable to concentrate on anything, my mood swings are unbelievable, I feel mentally disoriented and dissociated all the time, high blood pressure, racing pulse, high blood sugar, hot flashes, raging night sweats, dizziness, bad balance. The side effects that I can handle include nausea, headaches, diarrhea, joint and muscle pain. I am supposed to be on Lupron for 2 years. The only difference I see with my Lupron experience and others here is that my gender is MALE and I have early stage prostate cancer. Being male, my other serious Lupron side effect is complete impotence which is going to go on for a long while due to the radiation. I had radioactive seed implants into my prostate gland done a week ago and I have to follow this with 5 weeks of beam radiation. Lupron seems to be an equal opportunity drug. Lupron has messed me up so badly that for the past 5 weeks I have been off work on disability status with no chance of going back for at least a month and my Dr thinks that may be optimistic. No one seems to know how long it will take to get back to some kind of normal. I just could not function at work and ended up in my doctors office having a complete emotional meltdown. I would caution anyone, male or female, to consider Lupron very carefully before having it.
-- By gnarly | Reply | Private Message me
March 25th
2009
1:52 PM
I can relate to many of these experiences. Started out in my 20's with very irregular cycles, went to my first gyn after a miscarriage - the emergency room dr referred me to a dr that was at a fertility clinic. I had no idea why until I was actual a little more "awake" I was diagnosed with polycystic ovaries. I went through at least 6 or 7 different birth control pills, depo provera shot, nuvaring, then back on another birth control pill. finally we started doing the continuous suppression as I was bleeding at least a little bit every single day... for 2 years. I would still have my full blown period every 4 weeks or so, which also included a monster migraine on day one of the menstruation. Not only was my life being altered but I was starting to get anemic. Finally after a month of the continuous suppression my bleeding stopped. As did the menstrual migraines. I continued this way for 4 years. Didn't have a single period or migraine, life was wonderful.. or so it seemed. I have been over weight for most of my adult life. Finally decided to do something about it. I joined the gym with a friend and started losing weight. I dropped 55 pounds until... the dreaded bleeding, pain and hormones got out of control. I started bleeding every single day again. Finally made an appointment with my dr. She stated that when you lose weight it releases estrogen out of your fat cells. Gee, I thought losing weight was supposed to make you feel better!! I went on with it for a while thinking it would stop eventually and it just HAD to get better. In fact, things got worse. I started having horrible abdominal pain, eventually it got to be daily. To the point where I could not stretch or even hyper extend my right leg backwards. My abdomen felt like something had a rubber band tied to it from the inside. My dr said that she suspected endometriosis. However, due to my anemia... we had to wait. So back on the iron pills and wait wait wait. Finally, October 15th I went in for my lap. Sure enough, stage 4 endo, huge cysts on both ovaries. My endo had gone all over the place and attached itself to anything it could. Including folding my bladder in half! Good grief. I thought that I was just getting the weak bladder from getting older (I am 35 by the way). For the next couple of weeks after my surgery I felt pretty good. Finally pain free (still a little bleeding but not much). But, the end of December rolls around and here it is, back with all its fury. The pain is again horrible, my migraines are back, my energy is dwindling. The good life was short lived. My doctor suggested a series of Lupron shots. One shot a month for 6 months. My first shot in January (took me a little bit of time to decide if I wanted to do it) finally bit the bullet and got the shot. First few days, fine, no problem, no relief either but no life altering experience. Then one morning I woke up and realized I was not in pain. It was a strange feeling actually. But the time I got the second shot, no more bleeding, no more pain... However, the hot flashes, night sweats and the emotions came on. Holy cow. Drama drama drama. I could find any reason on the planet to argue, with anyone. Thank god I have a very understanding family and an even more wonderful partner. I think he has the patience of a saint. I still don't know how he puts up with me. If I am not trying to find some reason to pick a fight then I am crying like a baby... for hours and hours. These hormones are so out of control. I honestly don't know what is worse, the pain or feeling like the world is going to end in the next 2 minutes if I don't get this spill picked up.. I literally cried for 2 hours Saturday because my cat knocked a stupid bottle of car wax off a shelf in the back room. Good lord, I had the most horrible feelings coming over me and just could not stop crying. I bought a new bed 2 weeks ago and let me tell you. If I am not on one of my 13 hour sleep fests then I am laying in it crying and feeling sorry for myself. Or the even better part of indegestion or my favorite part.. gas. I honestly don't know if I can go on like this. I made an appointment to see my doctorr this Friday to determine what she thinks will happen if I don't complete the other 3 shots. just give me back the pain if you have to!
-- By endopcos | Reply | (2) replies | Private Message me
March 2th
2009
7:08 PM
I am 31 years old and I FINALLY have relief from the pain caused by endo. I have been dealing with this crap for about 14 years. I have only been on it for 1 month. The hot flashes are TERRIBLE!! But I guess it beats the pain. I have been reading some of the other people that have posted their side effects. Some of you are saying that you have been on Lupron for 1 year or even 2 years. My Dr. says you can only use if for 6 months. I guess I should've asked more questions. Any suggestions on what to do about the hot flashes - other than put a fan in my face??
-- By kseal888 | Reply | (2) replies | Private Message me
March 1th
2009
1:32 PM
I have been on the shot for going on a year now. I had a 3 month break. I was diagnosed with endometriosis about 2 years ago. I am currently 23. I think this shot was the best decision I ever made. It has been the best thing for me and the only thing that really seemed to work. I had the hot flashes and night sweats, but other than that it was amazing! I had heard nothing but horror stories and I was nervous about taking the injection. I can't actually use anything take anything else. I have been on many different oral contraceptives since I was 15 years old because irregularity, pain, and various other things. I also tried increase hormones levels in oral contraceptives and the depo provera shot. I would def not recommend that shot to anyone. I have found this to the be only thing that levels me out and allows me to feel normal! My only other options right now are the nuvaring (to see if it will work) and a hystorectomy (not really an option). I would recommend it to anyone, but do your research and don't expect miracles!
-- By ejk0024 | Reply | (1) replies | Private Message me
January 25th
2009
3:17 PM
After 3 months of the lupron, I decided to stop taking it. Within the first week of the first shot, I was having side effect. I have never been physically or mentally violent. I was blowing up at my boyfriend. I couldn't control my anger, and I didn't care. It got so bad that my boyfriend was considering moving out. So I went to my family doctor and he put me on zoloft, clonazepam, and propranolol for the mood swings, hot flashes, and temper. Also I wouldn't sleep through the night without waking up due to hot flashes. I haven't taken the shot in two months and the pain is coming back. I had no sex drive while I was on the shot and still really don't. I'm not really sure what to do next. The shot does relieve the pain, but the side effects are just overwhelming.
-- By amys33 | Reply | Private Message me
January 22th
2009
7:40 PM
I had laproscopic surgery done in May to remove an ovarian cyst. At that time it was confirmed that I have endometriosis. I have always had very difficult periods and at times constant pelvic pain. I have experimented with many different types of birth control and had finally given up on them because they all cause me varying degrees of depression. After my surgery my doctor recommended Lupron because I cannot take the pill. I had my first injection in September. I only did the one dose because I could not tolerate the depression that followed. At times I was nearly suicidal because I was so depressed. I have also gained weight and completely lost my sex drive...
Just after the new year I went to the ER with extreme vomiting, diarrhea and abdominal pain. It turns out that my gallbladder is only functioning at 10%. I have since learned that this is probably due to the Lupron injection (my doctor never mentioned this as a possible side effect!! but I discovered other sites that mention it and my GI confirmed) I am visiting a surgeon tomorrow to discuss removal of my gallbladder and I am wondering if any other women out there have had similar experiences and what the outcomes were??
I live in CT and I am going to look for an OB/GYN that specializes in endo. Please let me know if anyone has recommendations for a doc in CT too.
Thank you!!
-- By flutterbee77 | Reply | (5) replies | Private Message me
January 18th
2009
2:31 PM
I WAS DIAGNOSED WITH ENDO ABOUT 10 YEARS AGO WHEN I WAS 21 YEARS OLD. I WAS TOLD I WOULD HAVE TO HAVE A TOTAL HYSTERECTOMY BY THE TIME I WAS 25. I LIVED OUT OF STATE AND DID NOT LIKE THE DOCTOR I WAS SEEING SO I JUST DISMISSED IT. YEARS LATER AFTER MOVING BACK HOME AND GETTING MARRIED TO A WONDERFUL MAN WHO DOES NOT HAVE CHILDREN ( I HAVE TWO) I WENT TO MY OLD DOCTOR THAT I WAS REALLY COMFORTABLE WITH. TOLD HIM ALL OF MY SYMPTOMS AND ABOUT MY PAINFUL PERIODS AND HOW ME AND MY HUSBAND HADN'T GOTTEN PREGNANT AFTER FOUR YEARS OF TRYING. HE SCHEDULED ME FOR A LAPROSCOPY TO LOOK AROUND AND SEE WHAT WAS GOING ON. HE IS ALSO A FERTILITY SPECIALIST SO I KNEW HE WOULD TRY TO DO WHATEVER POSSIBLE FOR US TO HAVE A CHILD. I HAD A CHOCOLATE CYST ON MY RIGHT OVARY, ENDO, AND THE ENDO HAD FUSED MY BOWELS TO THE LEFT SIDE OF MY ABDOMEN. I HAD ALWAYS HAD PROBLEMS WITH CONSTIPATION BUT I JUST THOUGHT I WAS LIKE ALOT OF OTHER WOMEN. HE TOOK CARE OF ALL OF THAT AND WHEN I WOKE UP HE TOLD ME HE WOULD LIKE FOR ME TO GO ON LUPRON ONCE A MONTH FOR THREE MONTHS. THIS WAS ON SEPT. 11TH. I HAD READ ALL THE BLOGS BEFORE HAND ABOUT LUPRON AND I WAS VERY SKEPTICAL AND JUST PLAIN SCARED ABOUT TAKING IT. MY DOC TOLD ME IT WOULD HELP W/ THE PAIN AND AFTER TAKING IT FOR THREE MONTHS IT WOULD HELP US GET PREGNANT. I TOOK MY FIRST INJECTION BEFORE I LEFT THE HOSPITAL THAT DAY. THE FIRST COUPLE OF WEEKS I REALLY COULDN'T TELL ANY SIDE EFFECTS EXCEPT FOR HOT FLASHES. THEN THE HEADACHES STARTED. I HAD ALWAYS GOTTEN MIGRAINES, BUT THESE ARE 100 TIMES WORSE. I COMPLETED MY THREE MONTH CYCLE OF TAKING LUPRON ON NOV 6TH. I HAVE TURNED INTO A MOODY, CRANKY, ANGRY PERSON. IT IS UNCONTROLLABLE. AFTER MY LAST SHOT BEGAN TO WEAR OFF I GOT A HEADACHE SO BAD MY HUSBAND HAD TO PICK ME UP FROM WORK AND TAKE ME TO THE E.R. THEY TOLD ME IT WAS HORMONAL AND THAT I WOULD JUST HAVE TO DEAL W/ IT. THEY GAVE ME A SHOT AND SOME SAMPLES OF BUTALBITAL. THE SHOT DIDN'T DO ANYTHING AND THE BUTALBITAL ONLY MADE ME SLEEPY. I HAD THIS HEADACHE FOR OVER A WEEK. THEN IT JUST WENT AWAY. WHEN I HAD MY LAST SHOT MY DOC TOLD ME I WOULD HAVE A PERIOD WITHIN 6 TO 8 WEEKS AND WHEN I OVULATE AFTER THAT I SHOULD GET PREGNANT. IT TOOK ME OVER TEN WEEKS TO START. I FINALLY STARTED MY PERIOD A COUPLE OF DAYS AGO. I FEEL AS IF I HAVE ALREADY HAD A CHILD WITH ALL THE BLEEDING AND THE PAIN. IT IS UNBEARABLE. I FEEL SO SORRY FOR EVERYONE AROUND ME BECAUSE I DON'T EVEN KNOW THAT I AM BEING HORRIBLE. THROUGH THE LUPRON I HAVE GAINED 20 POUNDS, HAVE HAD SEVERE HEADACHES, HAVE BECOME VERY FORGETFUL, VERY VERY MOODY, AND JUST FEEL LIKE A TOTAL DEFERENT PERSON AND NOT IN A GOOD WAY. I WILL NEVER TAKE LUPRON AGAIN!! NEVER. IF ME AND MY HUSBAND DO NOT GET PREGNANT AFTER THIS I WILL JUST HAVE THE HYSTERECTOMY AND BE DONE WITH IT. I AM HOPING I BECOME LESS MOODY SINCE NOW MY BODY IS STARTING TO GO BACK TO NORMAL. OR AT LEAST I HOPE IT IS. HOW AM I SUPPOSED TO GET PREGNANT WHEN I AM SO MOODY THAT NO ONE CAN STAND TO BE AROUND ME? PLUS I NEVER WANT TO HAVE SEX. DOES ANYONE KNOW EXACTLY HOW LONG IT TAKES LUPRON TO TOTALLY GET OUT OF YOUR SYSTEM?
-- By kat1977 | Reply | (5) replies | Private Message me
January 15th
2009
12:37 PM
I have had 3 injections of Lupron. The first one I felt no side effects, the second came with miserable hot flashes, and with the third my life changed dramatically. Along with the hot flashes, were insomnia, extreme anxiety attacks and a racing heartbeat. I will not take this drug again. It has been over a month since the last injection and symptoms have not gone away. I was prescribed xanax for the anxiety and ambien for the insomnia. They help, but after 3 weeks I am still miserable. Does anyone know when this stuff gets out of your system?
-- By bronco | Reply | Private Message me
January 10th
2009
1:08 AM
I started Lupron in April of 2008. The year before this I worked HARD to lose 80 lbs. I finally got down to my goal weight because I was tld my endometriosis symptoms could be relieved if I wasn't overweight. I had a laparoscopy in March of 2008 confirming my diagnosis- Lupron was a last minute decision because of my age and status the doctor didn't want to do the hysterectomy right away. My endometriosis is spread throughout the body- including the lungs. While Lupron helped with the pain I was experiencing, it caused other pain. Pain that I can no longer even deal with. I became lethargic, depressed, and angry. My hair was falling out in large clumps. I didn't gain weight right away.. except a pound the first shot and three pounds hte second shot but I figured that was alright if it was only like 15 lbs total. I oculd deal with that. Here I am almost a year later. my last injection was in August. I gained a total of 47 pounds. I am a fat slob. I couldn't work out because my bones hurt so bad while taking the medication. No one around me knows what I went through physically. They al think that it was just some excuse to be a lazy fat cow but it truly HURT to move. Just simply walking from my bedroom door to my bed killed me. It hurt my ribs, my knees, my shins, my back. There were times when I couldn't even get out of my bed ebcause I just didn't have the energy. Then the depression started shortly after losing a large amount of hair. By now I am thinking about how ugly i've become on top of how fat I am. Nothing went right but my doctor pushed the shot. I figured hes the one with years of experience he couldn't possibly be this wrong. I trusted him. When I would go to him with complaints of my weight gain he would tell me to stop eating. The problem was... I wasn't eating. I was too sick to my stomach to bother. Then when I would get hungry i'd over eat. I bled a lot through the shots and I still had pain here and there but I was too afraid of what he'd put me on next if I complained. I started to forget simple things. My career was going down hill because they were sick of me not being 100% commited to my job any more. I cried all the time. I finally got sick of the weight gain while I was on my shots and I decided to work out regardless of how I felt and three times I passed out in the gym and was transported to the hospital where I had to listen to their advice on being overweight WHICH WASNT THE REASON I WAS PASSING OUT TO BEGIN WITH but no one wnats to hear what I have to say. Every one just assumed that I was this pig who never worked out in her life and over did it this time. What no one understood was that three months before the incident i was my average weight. I was tachycardic all the time- my normal resting heart rate while i was on my shots was 162. During a work out it would get up to 220!
Ive been off them since August and I haven't lost a single pound. I get up at 4am every day and work out. I park as far away as possible. I use the stairs instead of elevators. I eat healthy. I cut out extra sugars and stopped rewarding myself when I deserve it. I started these shots at 155lbs and today I am 215. Ive been on a strict monitored diet, diet pills and work out regimens and I am still 215. My knees kill me nad sound like velcro when I walk- ive even fallen a couple of times because they hurt that bad. My back still hurts and my neck still wont turn to the right completely because of a nerve that pinches or what have you in there that sends the sharp pain through my face when I move. I still have the depression but i think thats more because of my weight now than it is anything else.. and I finally ended up losing my job.
I recently saw my OB for a follow-up where he stuck me on yet another birth control. This one makes me vomit and gives me stomach cramps so Ive decided im done. I won't take another pill because its making me worse. Id rather have my uterus fall on the floor than pop another drug.
-- By jamielk | Reply | (5) replies | Private Message me
January 6th
2009
8:41 PM
I went from a rational non-emotional women to a crazy person!!! I feel awful. I would rather have pain than feel this way. I can't sleep though constantly fatigued. Achy body, headaches. Everything tastes like cardboard so I'm not eating well though I have gained a few pounds. I am severely emotional. I almost left my husband this weekend whom I adore, can't stop crying, very depressed and irritable. I want nothing more than to be alone and sleep, which no one can live that way. I am a mother of 3, a wife, and have a full time job. I can't function properly. I will never undergo hormone treatment after I get through this! I am currently on Lupron, just had laporoscopy 2 weeks ago for the 5th time all for endometriosis and I'm only 25. I started Premarin today to assist this anxiety and mood swings. Wish my family and I luck.
-- By outnumbrdby4 | Reply | (3) replies | Private Message me
December 21th
2008
9:34 AM
In addition to the rather common occurrence of the sweats, I have gained 30+ pounds since commencing a Lupron intermittent protocol. The majority of the weight gain has manifested itself in my stomach. My appetite has not increased or if so, not significantly. I exercise regularly and in most cases, aggressive exercises. I have carefully monitored my diet and have been unable to shed any weight or stomach mass.
-- By dennisy | Reply | (3) replies | Private Message me
December 19th
2008
12:38 AM
i took the six month lupron shot. the first three month shot was terrible i had horrible headaches for two weeks straight, hot flashes, moody, nauseous, acne, and tired. My second three month shot i would have to say i haven't felt all that bad i still get hot flashes but not as bad as the first shot im still moody and still get headaches every once in awhile but all in all i would have to say it hasn't been all that bad like the first shot. I haven't had a period since my first shot which is wonderful. i go back in January and not sure if i will need another shot but i doubt i will have to cuz my pain has let up. so i really cant say what to do for u all cuz everybody body is different and acts different.
-- By babygirl25 | Reply | Private Message me
December 17th
2008
12:43 PM
I began taking Lupron after I was diagnosed with endometriosis last November. For the first six months, the side effects were minimal. I never had hot flashes and didn't really notice a change in my body. The last six months on the drug I noticed significant differences. My hair started to fall out in clumps and I had trouble concentrating. This past October I had a total hysterectomy because the Lupron was not working. Today I feel like an 80 year old woman. I can't concentrate, my brain is in a constant fog, and I feel like I have Altzheimers. I can't remember anything and it is a major inconvenience. I have suffered from depression for most of my life. However, I believe this drug has worsened it to some extent. All day long, constantly I am battling negative thoughts. I have constant reminders of every little thing I've ever done wrong in my entire life. Recently I've started hearing whispers like I did when I suffered from post-partum depression. I've also been getting headaches every day but I don't know if these are related or not.
It would appear that I'm going to have to seek out a professional to deal with the voices. This is a side effect that I was not expecting, especially not after several months of not being on the shot anymore. The thing that bothers me is that I took the shot every three months for a year. It did nothing for me and I had a hysterectomy anyway. This is something to consider if you are debating whether or not to have the injection.
December 9th
2008
6:22 PM
I Just started the lupron injection 2 weeks ago. My side effects have been coming one by one immediately after i had my shot my whole right side felt sore like my arm down to my leg. two days later i felt really sleepy and kept getting headaches that would come an go through out the day.a week into it i had to leave work because i was vomiting constantly it was horrible a just felt so sea sick. i just want to know what else am i in store for? an i'd like to know how much hair loss is it going to be?
-- By rainbow86 | Reply | (2) replies | Private Message me
December 7th
2008
12:58 AM
I am 24 and extremely active, in the military, and I had been having problems with bleeding on my menstrual cycle for over a year. I was basically on my cycle every day for months at a time and then when i stopped my body would start again if i began to exercise or run anywhere. Life was horrible. My OBGYN put me on Lupron for 6 months and it was amazing to not have pain, not have a cycle and to have freedom to move about. I got off of the shot and my cycles returned to normal about 2 months late but now after 4 months of being off my cycles has now gone back to this constant state. i have joint tenderness in my knees and hand....I don't know if this is a result of Lupron or just being a runner....I'm only 24 so I would think my bones were in pretty good shape....I had hot flashes while taking Lupron but my bleeding is so bad that I almost want to run back in and say but me on the 3 month shots so I don't have to deal with any of this.
-- By confedential | Reply | (1) replies | Private Message me
December 3th
2008
9:17 PM
I am a little past my 2 weeks with my 1st luprone shot- 1 month. At first my pain symptoms didn't go away at all until one day(after a week and a half after the shot) I got my period and a serious hot flash. From then on I only get sweats and hot flashes at night. I am extremely fatigued. I am used to working long hour days, i.e. +12 hours, but I can't even hack making it through 3 hours these days. Other symptoms include: terrible migraines(all day), nausea, depression, terrible back and joint pain, my arms fall asleep all the time, pain a injection site, loss of appetite-slight weight loss, hair loss, and slight mood swings. This is the second time I have ovarian cysts, but now the doc's think I have endo too.
-- By soila | Reply | (1) replies | Private Message me
December 3th
2008
12:49 PM
I had my second Lupron shot this last mid October that lasts, supposedly, 3 months. So I will be 5 months in this mid December and I have to say I was one of the people who was fine with Lupron...up until now. I had and have all of the typical side effects of hot flashes, headaches, memory loss, mental fog, etc. Then I had my first ever migraine a week ago that knocked me on my butt for 2 days. My memory loss and depression are by far, by far, the worst side effect I have experienced. At this point I am concerned my memory problems and mind fog will not go back to normal, which has already adversely affected by daily life. I was one of the people who spoke positive of this injection even after reading all the horror stories but now I am beginning to wonder if they were right on some levels. When reading all the different experiences I would get confused and wouldn't know what to believe. I am not saying I would change things, the jury is still out as to whether the benefits will outweigh the difficulties, but my personal experience and symptoms have been getting worse just in the last few weeks, so that would be between month 4 and 5 on it. I could lead a pretty normal life up until recently and I'm a pretty tough person, I clean houses for a living and work hard with a packed schedule so I am not just stating little symptoms I experience but ones that actually have affected my daily life. Just being honest so you know what to possibly expect, depending on your body's reaction. That is a point to keep in mind, everyone's body reacts differently but if the majority of people are saying the SAME side effects, makes you wonder if there is a consistent pattern.
One thing I will tell you that has helped me is B vitamins regularly in your system and staying as active as possible. Write things down to remind you for the memory issues, don't over-commit to things because of the mental affects-it hits you hard when you can't follow through, and try to watch your sugar intake, which messes with your emotions. Hope this is helpful.
I would love to know from someone who has the same symptoms (which looks like almost everyone who is on it) and who is now off of Lupron for at least a few months, if the symptoms of memory loss and mind fog go away. Is my memory permanently damaged?
November 11th
2009
6:53 PM
I got diagnosed with endometriosis about a month ago and had emergency surgery. I had my first shot of Lupron a week after my surgery. I am now experiences the hot flashes, mood swings,and not being in the "mood". I have not noticed anyone else saying anything about the side effects being not in the "mood". I am only 24 years old and getting married in February. I need help!!!! I am suppose to get my second shot on the 23rd of this month. I am not sure if I should get it or not. My husband-to-be and I would like to start a family right after our wedding. I feel so bad for him I don't want him to have to turn to movies or anything else to have to get pleased. I am still young and should not be going through this. I need help and don't know what to do.
-- By mpluv05 | Reply | (2) replies | Private Message mempluv05