
Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

deleted_user
My doctor did tell me that Lupron was my only option and that it wouldn't be that bad. I had time to research it a little before the first shot was given to me. However, the information that is available to read, does not go into detail about all of the side effects. It only lists some of them. Knowing that I would be put into chemical menopause was scarey, but I was told that I had no other options. So, I did it.
Right after I got my shot, I drove home. I felt disoriented and dizzy right away, but I knew that one of the possible side effects was dizziness and so I didn't think much of it at the time. During the first month, I continued to experience all of the same problems that I had prior to the lupron, besides the bleeding. I also gained the side effects of sleep difficultites/bad dreams/joint pain/fatigue/headaches/hotflashes/night sweats.
After my second shot, I continued to have pain, which turned into spasming, which originated in my pelvis, what I was told was probably bladder spasms. It was continuous for over 24 hours, so I went to see my doctor who didn't really believe me, but gave me a mild anti-spasmatic pill to take and some pain medication to only take if nothing else helped...and only at night, as it would make me drowsy. During this time, I began to have emotional issues such as depression/aggression/anxiety/nervousness. It got so out of hand that I was put on an add back therapy shortly after to help. It did help "numb" these feelings, but did not make it go away.
After my third shot, I was told to just come back in three months for a follow up, as I had so many problems that I told my doctor that I would never take another shot again. He said at the time that he didn't blame me for not wanting any more...and was actually suprised that I even took the last injection. This said to me five minutes after I got my last shot.....yea....nice....Anyhow, the third month was much of the same; pain, with little relief, continued spasms, joint pain, fatigue, emotional/mental issues...to name a few things. I was also not told at the time that it takes just about as long as you take Lupron for it to "leave your system"; meaning that you will not have a period for as long as you were on the shot...for me, it lasted just under three months since my last shot.
During that three months, I had an experience while driving with my children in the car. I had a weird surge of energy (the only way I can explain it), start at the top of my head, go down my face, down into my chest, down into my pelvis and then disappear. As this feeling hit my face, my eyes went black. I could not see. I pulled over to the side of the road and tried not to freak out.My right eye vision came back sooner than my left eye. My left eye continued to be black for what seemed like forever in a very short amount of time. I was freaked out, but saw a fast food place up ahead...I had just eaten, but didn't know what else to do. I got a drink...thinking I was thirsty maybe...and continued to drive. I called my husband and mother, who both told me to not worry about it and just drive home (I was about 20 minutes away at the time). So, I did.
This exact experience has not happend since then, however I continued to have many difficulties with driving. I would feel intoxicated, even though I most definetly was not, nearly everytime I was driving. I felt dizzy and out of control. Then it continued to get worse. My left eye especially goes blurry every day now. I have black outs/black spots/lights flickering and double vision. I have dimmed vision now with loss of periphrial vision. All cannot be explained. No one has even tried.
On top of that, when I started bleeding again, I bled for 27 days straight, mostly if I became stressed. I have bowel issues that are causing me so much trouble that I am scheduled for a colonoscopy and GI probe in a couple of weeks. My joint pain continues every single day, including spasms/twitches/jerking movements, especially in my legs.
I am now taking anti-depressants because of the depression/anxiety.
All of this in the past year has put me life into a whirlwind. No doctors have any answers for me and I am often told that it is all in my head...and that it isn't that bad....believe me it is. My marriage has suffered, my relationships with my friends and family have suffered. And nobody believes me. It's like someone completly shut me out of the life that I was having before. I'm desperately trying to find a solution to all of this. I have many appointments with various different doctors and will continue to see anyone who will see me to get the answers that I deserve.
I'm sorry to be so descriptive. But I hope that this does not happen to anyone else. If that is the only thing that I get out of sharing my story...atleast I could get that much.
Right after I got my shot, I drove home. I felt disoriented and dizzy right away, but I knew that one of the possible side effects was dizziness and so I didn't think much of it at the time. During the first month, I continued to experience all of the same problems that I had prior to the lupron, besides the bleeding. I also gained the side effects of sleep difficultites/bad dreams/joint pain/fatigue/headaches/hotflashes/night sweats.
After my second shot, I continued to have pain, which turned into spasming, which originated in my pelvis, what I was told was probably bladder spasms. It was continuous for over 24 hours, so I went to see my doctor who didn't really believe me, but gave me a mild anti-spasmatic pill to take and some pain medication to only take if nothing else helped...and only at night, as it would make me drowsy. During this time, I began to have emotional issues such as depression/aggression/anxiety/nervousness. It got so out of hand that I was put on an add back therapy shortly after to help. It did help "numb" these feelings, but did not make it go away.
After my third shot, I was told to just come back in three months for a follow up, as I had so many problems that I told my doctor that I would never take another shot again. He said at the time that he didn't blame me for not wanting any more...and was actually suprised that I even took the last injection. This said to me five minutes after I got my last shot.....yea....nice....Anyhow, the third month was much of the same; pain, with little relief, continued spasms, joint pain, fatigue, emotional/mental issues...to name a few things. I was also not told at the time that it takes just about as long as you take Lupron for it to "leave your system"; meaning that you will not have a period for as long as you were on the shot...for me, it lasted just under three months since my last shot.
During that three months, I had an experience while driving with my children in the car. I had a weird surge of energy (the only way I can explain it), start at the top of my head, go down my face, down into my chest, down into my pelvis and then disappear. As this feeling hit my face, my eyes went black. I could not see. I pulled over to the side of the road and tried not to freak out.My right eye vision came back sooner than my left eye. My left eye continued to be black for what seemed like forever in a very short amount of time. I was freaked out, but saw a fast food place up ahead...I had just eaten, but didn't know what else to do. I got a drink...thinking I was thirsty maybe...and continued to drive. I called my husband and mother, who both told me to not worry about it and just drive home (I was about 20 minutes away at the time). So, I did.
This exact experience has not happend since then, however I continued to have many difficulties with driving. I would feel intoxicated, even though I most definetly was not, nearly everytime I was driving. I felt dizzy and out of control. Then it continued to get worse. My left eye especially goes blurry every day now. I have black outs/black spots/lights flickering and double vision. I have dimmed vision now with loss of periphrial vision. All cannot be explained. No one has even tried.
On top of that, when I started bleeding again, I bled for 27 days straight, mostly if I became stressed. I have bowel issues that are causing me so much trouble that I am scheduled for a colonoscopy and GI probe in a couple of weeks. My joint pain continues every single day, including spasms/twitches/jerking movements, especially in my legs.
I am now taking anti-depressants because of the depression/anxiety.
All of this in the past year has put me life into a whirlwind. No doctors have any answers for me and I am often told that it is all in my head...and that it isn't that bad....believe me it is. My marriage has suffered, my relationships with my friends and family have suffered. And nobody believes me. It's like someone completly shut me out of the life that I was having before. I'm desperately trying to find a solution to all of this. I have many appointments with various different doctors and will continue to see anyone who will see me to get the answers that I deserve.
I'm sorry to be so descriptive. But I hope that this does not happen to anyone else. If that is the only thing that I get out of sharing my story...atleast I could get that much.
Posts You May Be Interested In
-
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
-
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I refused to take the Lupron shot. I did compermise and take the provera shot. It's your body and your choice...
Provera worked the same way for me...had many menopauseal symptoms...I also ended up anti Depressants after starting the shot..
Its not in your head! I felt the same way...Doc just don't get it... Trust me YOU ARE NOT CRAZY...
I was on the shot for 4.5 years...when I stopped the shot my cycle came back in 6 months...
I will stop babbling now....I wish you luck
I really hope you recover fully from this treatment. Thank you for your story.
Thanks for posting your experience, it reinforced my reasons for not wanting to go on it again...
Thank you for speaking out.
You know yourself well enough - and I know it sucks having to try to convince doctors, friends, family, employers, etc.. that you're right and you know what's best for your body and mind.
Whenever I take any medication, over 90% of the time I will hit the "rare side effects" listed for that medication. So I research everything at www.rxlist.com first, then ask people, and then make a judgement call on whether or not I will take the meds. I don't know if you do this already or not.
I am totally against taking Lupron, even though my surgeon also says it's my only option left.
When I ran down the list of crap I don't want to experience on it, she shrugged and told me she'd prescribe antidepressants to go along with it! I told her that the last time I was on antidepressants, they caused me to get such joint pain that I thought I had carpal tunnel - my surgeon looked so unpleased with how difficult I was being!
WTF.
So she's fired and I search for yet another GYN.
Regarding the messed up vision - I was on Yasmin from February to April of this year and I got shadows and floaties that STILL have not gone away.
Lupron and synthetic hormones are EVIL and I will not put that shit in my body.
(sorry for the delayed reply as I've been away from this website for a couple weeks)
I will continue to fight to get better and find a doctor who will actually help me.
I really appreciate all of your kind words, prayers and encouragement. It all helps so much! Thank you again.
I took Lupron for 6 months, last shot in May of 2007. I did research it beforehand. It was hard, because I had to weigh the risk of side effects against the risk of my endometriomas recurring - and they were each about 7 cm, so the risk was great without treatment, and I did NOT want to have surgery again. I heard horror stories about Lupron from my internet research, so I was scared to go on it - but I couldn't see how common these reactions really were and I trusted my doctor when he said he hadn't had any patients with the severe side effects I'd heard about. He agreed he'd pull me off if I had anything like that, and I got the shot and held my breath...
And then....nothing. A few very mild hot flashes, and some mild vaginal dryness that made no difference to me because I wasn't sexually active anyway. I thought it would take a long time to wear off, but it only took 2 1/2 months before I had a breakthrough bleed, and I had to start the pill pronto. But I felt fine and still do.
I still cringe when I think of where I was at last year. I spent a month researching and agonizing and I was so scared I cried every day.
I guess I don't know what the answer is, but I felt I should say something too, in case anyone else out there is in the predicament I was. If your endo isn't stage IV, or if you've reacted sensitively to other meds, you might have better options. Just wish we all did.