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Support for endometriosis sufferers
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| Viewing Page 1 of 1 (Total Posts: 9) |
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Christy
 Oct 8, 04 - 6:12 PM |
lupron aftermath
I have had a lap several years ago, after losing four babies, only to learn I had stage 4 endo, adn then going on to lose one more last year. They cleaned me out and I opted to do the lupron shots for 6 months. I, like many others, had the hot flashes, night sweats, etc. Those quickly subsided after about 2 months being off the shot. That was 2002. Over the past year, I have noticed my back killing me, around my waist in the back. Does not feel like muscle pain. I'm not overweight. I exercise. I used to be able to spend hours in the mall, go walking, exercise w/o back pain. Some days are back pain free, others are so bad I can hardly stand and bend over and touch my toes it hurts that bad. Sometimes I can hardly stand to shower and get ready for work. I wondered if it was cancer (only because a friend of mine, her mother had pain for a long time only to find out it was serious cancer). Then, today, I had a "revelation" that it could be Lupron. I've researched it before using it and also talked to my docs and my mother who works for an OB/GYN. I was highly concerned. Now, I'm very concerned about it. Through all of what I just wrote, I'm wondering if any of you have had this problem or know of anybody who has. I'd sure like to know if I'm losing my mind on this or it's the Lupron or if I should actually go to a doctor. Thanks for any words of wisdom y'all might have. christy 
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Melanie
Oct 8th, 2004 - 6:28 PM |
Re: lupron aftermath
Hi Christy, I am so sorry you are suffering so much. I have not had any experience with Lupron, but I would definitely recommend you see your doctor, your body is obviously giving you messages that something is wrong. I know many women with endo suffer from back pain, is it possible your endo pain has returned? Wishing you pain free days, Melanie |
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Christy
Oct 8th, 2004 - 6:46 PM |
Re: lupron aftermath
Hi, Melanie. Thanks for responding so quickly. As a matter of fact, when I went to have the lap, we were expecting it to be just another thing to mark off my list of miscarriage culprits. I've always had period pain, but nothing else that made me think that I ever had endometriosis, nothing. That's why, needless to say, we were absolutely shocked to find out how bad I did have it, because I had nothing besides bad pain on the first two days of my periods, ever since they started. And, actually, when I was on the pill for the years I was, I was painfree; now, after the lap, I've had so much pain. I just doesn't make sense, but ....the doctor may be a great idea afterall. I'm just not too sure they'll know. When I had the shots, they'd ask me how I felt and all, but wouldn't do anything about it, so I almost hesitate now going back and going through all that. Anyhow, I may just do that. Might seek an orthopedic instead of the OB/GYN. Thanks again for your words. If anybody else has any info, please fill me in. I truly appreciate it. Christy |
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Melanie
Oct 8th, 2004 - 7:24 PM |
Re: lupron aftermath
Hello again, Christy. Well that's the strange thing about endo. You can have stage 4 and have very little pain and some women with stage 1 are in severe pain. If you see an ob/gyn s/he would be able to at least do an ultrasound to see if you've developed cysts. Cysts don't necessarily cause pain, but it wouldn't hurt to rule it out. Let us know ho wis goes, ok? Melanie |
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Lori
Oct 8th, 2004 - 9:20 PM |
Re: lupron aftermath
Hi Christy, Welcome Here  I am sorry to hear of your miscarriages. That must have been extremelly difficult! I agree with Melanie that it could be endo pain, because cramps always seem to hurt the back also but is it increasingly worse near your period? I have heard many stories about Lupron, besides checking for cysts maybe you can ask about a bone density test as I hear Lupron causes bone loss in some cases. It is good to rule everything out and yes see as many Drs. you can until you find an answer. Their is always a reason behind pain! I hope and pray that you can find some answers. Feel free to keep us posted. Lori |
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Margaret Moran
Oct 10th, 2004 - 3:26 PM |
Re: lupron aftermath
Hi Christy, Sorry, I wasn't able to answer your email earlier, I just haven't been doing well. Anyways, I wanted you to know that Lupron can cause back pain b'cause I am dealing w/ them and many other side effects from Lupron. To fill you in, I was supposed to be on Lupron for 6mths, but only made it 3. It was the worst experience and I couldn't have even imagined in a million yrs that it could make me feel so horrible. Now, about 4yrs later I am still dealing w/ effects from the Lupron daily. About a 1 1/2 yrs ago I started getting worse back pain, but I had gained some weight so blew it off as being that. The pain just got worse and I got a job around Christmas '03 and the pain was so bad that I couldn't bend down to pick up a shirt on the floor and I got to the pt I had to leave the job b'cause I wasn't able to stand for long. When I was home, I had to call my sister or her husband to come over and walk my dogs b'cause I couldn't move. I tried everything from over medicating on Doan's to warm baths to finally going to an emergency clinic; where I was told it was a spazm(honey, i've had spazms and this was no spazm; sorry if my spelling is off). So, finally when my husband came back from Korea and we moved to Ky I decided this was it and I had to get help. The doc told me to bend & touch my toes & I laughed at him and said, "if I could do that do you think I would be here". So, he got me into x-rays immediately and told me to come back the next week to get the results. That weekend I was in bed b'cause the pain was killer; my husband had to assist me w/ everything. On Monday, my husband took me in and I couldn't even sit I was moaning in pain and the nurses came and got me to lay down and gave me a shot for pain and told me they don't have the results I had to come back(lucky for them they gave me something for pain). Finally, when I got my results I discovered that the cartilidge stuff between two of my spinal plates were narrowing & their was a spot appearing on my spine. I was asked if I had ever been in a major car accident and I told him no, but I had never had any back pain until I went on Lupron and he said,"there you go". So, I have gotten myself back in the pool, which has helped a bunch & put some natural progesterone cream on it every night, which has actually helped some. The doc told me that there wasn't anything, but therapy that could be done. The spot on my spine has yet to be determined and I have to get another xray to see if it is still there. Memory loss, nightsweats, and hot flashes are some of the other things that I still have to this day that Lupron has caused me. I am sorry to say that your pain is probably from Lupron, but hopefully you can find some relief very soon. I can't walk or jog either, but the pool has been great and it is a fact that it is a better workout than the others(water jog/aerobics or swimming laps). I wish you good luck and no pain for the future, you will be in my thoughts and prayers. Keep us up to date on how you are doing w/ this and let me know if you find something that helps you out b'cause I will have to try it. Take care and God bless you. Margaret |
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Lori
Oct 11th, 2004 - 3:02 PM |
Re: lupron aftermath
Hi again, Margaret I had no idea that this was the cause of your back pain. I am so sorry! I read story after story of bad effects from this drug. But then I read a few good stories. Sometimes I just do not know what to say to people as they are deciding on what to do or not. Everyone has a difficult choice to make and I want to make it clear that all are welcome on this site who choose Lupron, but sometimes it is hard to hold back on what I feel about Lupron. I have some links on the medical portion of this site, where anyone can find out more or put in their stories-bad or good. It is the one called Lupron Facts. I just read a story about a girl on the ob-gyn site about her teeth being a big problem because of Lupron-teeth falling out...oh goodness Also now I read so many more stories of back problems also because of it. I never really knew that it caused back problems also-but since it messes with bone density-that would make sense then. anyways my point Margaret was to give you sympathy for your struggles. Many prayers are with all of you on your treatment decisions. 
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Margaret Moran
Oct 11th, 2004 - 6:47 PM |
Re: lupron aftermath
Thank you, Lori  . I am very blunt when someone asks, what people's opinions are of Lupron  . I just feel that if they ask, I will tell them my story; which isn't a nice one . Of course, I don't try to be mean or anything and I always tell them that there are women that have the usual side effects and get actual relief from it. I am just far from being one of them and I always tell the women that ask that they must choose what feels right to them and to listen to their hearts . I was blinded or I should say, deaf when I made my decision. I had read about a girl losing her teeth and also a 17yr old who can no longer walk b'cause she is so brittle. I, really thank God that I didn't continue the lupron and finally listened to my heart b'cause it frightens me to think where I would be if I had stayed on it for the whole 6mths (I am not trying to scare anyone by saying these things; I just had an extremely bad reaction to lupron; where others do fine. I wrote about it on another post here, so I won't get into it again...it upsets me). Anyways, my back pain is bad, but the worse part is losing my short term memory. It just really scares me b'cause it is getting really bad and I am only 25. I used to be very angry and want to hurt the doctor that made me think it was a miracle & never warned me of the risk I was taking(actually he called me a liar when I confronted him, but anyways...). I am over that and just sad about the whole mess and so glad that so many women are researching it or have support groups b'cause I didn't. I know one day I will put it all to rest and just think of it as a big bump in the road and leave it behind(I am working on that, right now). I, sincerely, hope and pray that no one ever has to go through what I went through b'cause honestly, I wouldn't even wish that on my worst enemy. You all take care and God bless. Margaret 
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Christy
Oct 15th, 2004 - 3:54 PM |
Re: lupron aftermath
Good evening, ladies. I appreciate all the responses and stories. We do all have our very own stories about lupron, some good, some bad. I must say I had the night sweats, the hot-cold flashes, the no sleeping at night; nothing my doctor wanted to help me with, though. However, as I previously said, I was very concerned I had cancer in my back (because of a friend's mother having back pain for a long time and it turned out to be) but then I dawned on me last week it was probably from the Lupron, only because it's intermittent. I do believe that's the only "symptom" I have remaining from Lupron. After my 6 shots, it took that last whole month before I was free from the night sweats, hot-cold flashes, etc. However, it took about 2 months for my cycle to return. They've been regular ever since. That, I'm thankful for since we're still "trying" to have a miracle baby. Anyhow, I will be contacting my insurance company to find an orthopedic. In the meantime, I've chosen to take extra calcium daily and go from there. Thank you all for your stories, words of wisdom, and helpful hints/words. I pray God blesses you all and helps you through this emotional, painful, physical state. It's not easy, but He's there. I have learned that. I no long ask: Why me? If it's not for me, it's for another to see how I react, respond, handle my life. Again, I hope you all are blessed and have happy, healthy futures!! |
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