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Mar 28, 2016 2:43 PM

I'm looking into Lupron as a possible treatment avenue and was wondering if any one had experience with the drug or any thoughts/opinions......

Mar 28, 2016 2:50 PM

I've nkt actually taken it. But it's been presented to me and after looking over all the side effects I decide to do alternative treatments. Luopron in my opinion is gonna be a harsh shutdown of your hormonal system. And the side effects are hard not to mention it's a low level chemotherapy. May I ask what u are taking it for.
I have multiple adbomal and uteren tumors with other complications. I choice to do a pill therapy which is more gentle.

Mar 28, 2016 2:53 PM

I have semi-advanced endometriosis that produces extreme pain and continual bleeding ( i've been bleeding for about 4 months ). And may I ask what the pill therapy is exactly? Also, have you seen decent improvement? Thank you.

Mar 28, 2016 2:59 PM

I'm on hormone suppression therapy it's a daily pill that has slowly shit down my system basically pushing me into menopause in hopes to stop the tumors growth while the drs find a safe way to remove them. I was bleeding excessively too and my cycle finally stopped about a month ago. I've been on the therapy for four months. The bleeding has improved which is a blessing in its self.. My cramps have stopped too however I still have pressure around the uterus but it's nothing like it was.

Mar 28, 2016 3:03 PM

Okay, yeah this sounds like a better and less physically taxing treatment option. I'm doing research on Lupron and finding that the way the drug was explained to me does not properly convey the severity of the drug. I will definitely talk to my doctor about the pill therapy. Thank you so much for your reply. I am nervous about the treatment options available. I'm glad to hear that your hormone suppression therapy seems to be helping.

Mar 28, 2016 3:27 PM

Your welcome.. I felt the same way. When lupron was presented to me I did my own research and found out how hard it is on the body and the fact you can only be on it for a certain amount of time. And the rebound from not taking it is much like puberty all over again. Pill therapy is longer but definitely more gentle on the body. Just watch out for the hair growth.. Ha..lol

Mar 28, 2016 3:40 PM

Feel free to contact me if u have anymore questions or just want to chat. Are u on fb?

Mar 28, 2016 3:48 PM

Thank you so much. And will do, feel free to do the same. And yeah, If you search taylor borgelt, my icon is a black butterfly on a grey background

Mar 28, 2016 4:18 PM

Hey, I saw your page and do you write poetry?

Mar 28, 2016 4:20 PM

Did u accept the request I've got a purple ribbon as my cover photo

Mar 28, 2016 10:10 PM

Hey just for the record you might want to check out the website/app "myendometriosisteam" and the hystersisters forum they have an endo folder as well

Mar 29, 2016 11:02 AM

I had just had a Lupron Shot 2 weeks ago also and also found out that I am possibly might have endometriosis I am not having any luck with this Lupron shot I have had my period more than I've ever had and to top it off my pain has magnified if you find any way to help with this I am following you and I feel your pain and I understand hang in there

Mar 29, 2016 3:08 PM

Thank you for the app recommendations. I will definitely look into them. And thanks for telling me about your experience with Lupron. It's good to know other's experiences. Thank you so much

Mar 29, 2016 11:42 PM

Hi Taylor, I am currently on the monthly dose of Lupron. I have taken my 2nd dose, next is April 10th I think. I have a long history of nasty painful periods since they started. At 47 I feel I am no longer managing. I have an abnormal cyst growing for past 3 years and symptoms that the gyne doc thinks endometriosis. The pain became horrible. I have done birth control, IUD, estrogen patch, anti inflammatories, muscle relaxants, pain meds and Narcotics nothing was touching the pain. I got desperate when the doctor said we have tried many options, it was now time to do Lupron which I did not want because it either helps or it's a nasty drug. I went for follow up after first dose with the usual listed concerns she denied them and said I need to try one or two more months. Initially my pain did get worse, didn't think it was possible the pain could get worse. The pain was like when you miscarry or give birth, but for 24 hrs a day for 2 1/2 weeks. My pain did decrease for a short time but now has risen again. I was told the medication works like putting your ovaries to sleep and thus stop producing estrogen which feeds endometriosis thus increase pain. I am trying to deal with what is going on but the pain continues to be very nasty, hot +++, cold++, migraines+++++,weight gain, mood fluctuations, anxiety+++, depression+++, bone pain and muscle stiffness, fatigue, NOT sleeping. My laparoscopic surgery is end of May to remove right ovary, burn or remove any endo if it is that with possibility of everything being removed. I would like to keep one ovary, but not if knowing that the endo will return.
Taylor it's your call, it is a tough one.

Mar 30, 2016 7:08 AM

Ladies, I've talked with a real specialist named Dr. Cook. They think I have stage 3 or even 4.. we have to tell doctors what's what about endo. They don't know anything about it. Dr. Cook even had a showing last night on CNN nightly news about endo, Girls this is something that is worse then cancer. If you go into surgery and just scrap the nods out it won't help! They have to dig them all out because the disease is deep inside so it's a no wonder that we are still in pain after getting help. He has more then 75% women who he helped say they are pain free or its better then ever with manageable pain and them taking back thier lives. Please I urge you to at least give them a call. I was in tears, it was like a dream to me. They listened. The Lupton is a chemotherapy shot that's harsh on the body when there are alternative answers. They told me we have to fight back to get our help we need. Our doctors let us suffer because it's a new disease that is only covered for less then 30 mine in med achool, not only that but 85% of the doctors believe that females over over dramatically complaining about PMS. This is an invisible disease that has not only claimed lives from destroying out body on the inside but also because no one ever believes us and the pain becomes unbearable to the 2-5 women a day take thier own lives. This is serious. It's our job to show the world that this isn't right, we have rights to recipe the proper treatment. They wouldn't treat someone with HIV,or cancer like the they are to us. Stand, fight for your right to take back your life, I urge to look up Dr. Cook, I'll post his info soon after I'm done with taking my kiddo to school and having a lovely chat with my doctor at 9. We are human beings, we do not deserve to be left alone to suffer. We are warriors who get up everyday and take on the endless pain and suffering with a smile on our face and still play mommy or wife or sister, daughter. With everyone who tells you that you are a lair or, oh you are sick all the time or in pain all the time. I think you are just lazy. Anything like that, tellem I understand you don't understand but I have endo and it's new and not every well known about. But please just because you can't see it, does not means it's not happening

Mar 30, 2016 9:19 AM

Hi Asia,
I am hearing what you are saying, that's why I had a great hesitation with going on Lupron. It scares me greatly knowing that I happen to have these symptoms come on at the same time as the Lupron was started. As for the endometriosis I will have that confirmed through biopsy and visual through a scope on May 31st. In the mean time I am in pain, my mental health has deteriorated big time and migraine pain. I am really thinking against my belief to keep what I can to take it all out in case the endo reoccurs. I do not ever want to have to go on this drug again. I hope that it will only be two more doses, but I don't know if I can manage it. It makes me very angry that this is what my health has become. But I need to get through this and figure it out because I have a daughter who needs me and I need her.
I will see if I can look up the information you are talking about. Thank you for your thoughts.

Mar 30, 2016 9:25 AM

With my procedure, if it is stage 4 endometriosis the doctor said she thinks that it all (total hysterectomy) needs to happen and will do so. Or stage 3 with lots of scares and damage. This is our agreement.

Mar 30, 2016 7:14 PM

Beets my dear girl I feel you. You hang in there look for me on Facebook and any of you ladies who all reads this. Add me asialea pourner. Please all of us hang in there. I know the pain can be unbearable but there is help out there. We need to stand to gather and help all of us and let our disease be known and heard! We are endo warriors and are strong as hell. If ever you need anything please hit me up and I'll be there

Mar 30, 2016 11:39 PM

Thank you Asia.

Mar 31, 2016 1:36 PM

Asia, you have provided amazing and accurate information! Thank you for adding this information for our group. Many of our women sufferers will feel supported , informed, and helped! Much love and Blessings, Terri

Apr 08, 2016 8:02 PM

Hi Newfibrogirl,

What medication are you taking?

Apr 08, 2016 9:08 PM

April 10th today.

I had my appointment with my gyne doctor. She said that the Lupron needs to be stopped. I was desperate and tried the Lupron. The pain has returned in past 4-6 weeks to horrible and increasing in severity. My mental health is no longer stable, plus the above things happening. She said that we need a little estrogen in our system, such as helping our mental health. She would like me to keep my left ovary if possible. She also mentioned that if it is endometriosis the pain should be decreasing not increasing with the Lupron treatments. We will see on May 31st when the scope is done.
Thank you for the Facebook offer, but do not use it.

Asia, my pain magnified for 2.5 weeks after first shot. I also had a period after 1st injection.

Always painful periods all my life. Pain increased again the last couple years with more periods, but not lots of bleeding.

I am very worried about the next week or so coming off of the Lupron, the pain until surgery. Knowing that surgery may not be the answer to the pain, but hoping it will.
I am thankful that I have my family.


Apr 09, 2016 10:11 AM

My mom took Lupron while going through cancer treatment and she has nothing good to say about it. It. It gave her a constant fever and flu-like side affects, and lowered her immune system more than it already was from the radiation treatment. But then, she had cancer, I don't know how it would affect chronic pain.

Jul 20, 2016 6:39 PM

Had to search for this thread again. I've had to change gears and start lupron. Today was my first shot.

Jul 28, 2016 12:44 PM

There is a wonderful Facebook group- Nancy's Nook Endometriosis that is VERY helpful. They are supportive, answer questions, and have links to research studies. It may be helpful to you.

Jul 28, 2016 9:16 PM

I was on Lupron for 1 year, due to PCOS, and endometriosis and an attempt to save my remaining ovary. Could barely deal with the side-effects, ended up having a Uterine Ablation 3 years ago. Stopped the endo pain completely.

Jul 28, 2016 9:20 PM

Beets, look into Uterine Ablation, minor procedure, awfully painful at first, but I never got another period or that pain again. It is permanent and you will no longer be able to have children. But freed me of the awful pain.

Jul 28, 2016 9:21 PM

What was your worst side effect if u don't mind? The sweating, mood changes physical changes rashes, ect

Jul 29, 2016 12:56 AM

Thank you Lee, I will look it up.

Worst side effect horrible migraines 24/7, eye pain, fatigue+++, increased pelvic pain like that of child birth or miscarriage, physical pain.

Jul 29, 2016 9:17 AM

Beetsrgood..i thought I was crazy when I felt pain was worse. Almost like before my diagnosis of fibromayalgia. The fatique and endurance is awful. And the pain is worse. My dr said lupron could help my pain but of yet no luck. I may have not give it enough time. It's not been two weeks.

Jul 29, 2016 10:12 AM

Newfibrogirl, I would say, the insomnia, sweating and weight gain were the worst side effects. I was immediately put on Prozac for the mood swings, so they were tolerable. If I was suggested to do it again, I wouldn't. I now have cysts on my right ovary, so I am not certain that it helped much. The endometriosis was so bad that I would never have been able to get pregnant regardless. If you have a great ob like mine. Have a serious discussion with them.

Jul 29, 2016 11:43 AM

Leslie..i agree the weight gain was a huge concern of mine. Since I was already a large lady.. it's only been a week and I've gained 10 lbs. I'm so concerned. I'm also having weakness more then before. I really hope this was nkt a mistake.

Jul 29, 2016 4:40 PM

Newfibrogirl, you can always stop the Lupron. I don't want to worry you, but I went from a size 4 to a size 12 that was 7 years ago. I really can't exercise at all due to the CRPS, but when I got married in November I was finally at a size 6 almost a 4. Now I am back up to a 10. Weight gain is a serious problem for me as I am a recovering anorexic. I also have begun menopause at 43! Women get the short end of the stick! We deal with so many physical hormonal issues and men just get erectile dysfunction and there are pills for that,go figure!

Jul 29, 2016 5:32 PM

Keeper. Thank you and your so right. Women literally have to.bear it all. With little to no help. Stopping the lupron is on the list. However, it seems to be the only thing they can do for my uteren tumors. Surgery is risky at least here in the small town I'm in. Thank you for your input it really does help ro know I'm alone in this.

Jul 29, 2016 5:42 PM

Not alone at all

Jul 29, 2016 5:49 PM

I find it funny, my husband has erectile dysfunction and he whines about it and getting old, etc..., I am just like "REALLY?" I am around anytime. I am so sorry that you are limited with your dr's because you are in a small town. I am in South Florida, so, a lot of dr's and a lot of old people.

Jul 29, 2016 5:56 PM

I've got a surgeon I used for my last surgery to remove the tumors which is where they discovered the severity of my case. It just they are several hours away and Im saving up so I can go back. We had hoped the gyn here would be able to assist the Dr in Birmingham but the Dr here said that she had never seen a case like this and she is not comfortable treating me for that. So she is only administering my lupron and handling regular gyn issues. Big disappoiment but it is what is.

Jul 29, 2016 6:02 PM

Lee Lee. I also find it very encouraging thst you were still able to find love even while going through you pain journey. I think about it for myself. If I'll ever be able to have anything or any other then pain and drs. I'm so happy for you and your marriage. Congrats

Jul 29, 2016 11:30 PM

Thank you newfibrogirl! Believe me that our relationship is full of issues and I feel like it was the biggest mistake of my life. He obviously is going through his own issues. Tonight I almost killed him for being a slob and having no thought about how hard the work is for me. Not blaming him %100, but a little help would be nice.

Jul 30, 2016 12:29 AM

The uterine ablation was the best thing I did for myself. No more period. No more pain. One less pain to have to deal with! Thank You God!

Jul 30, 2016 9:10 AM

Coral, nice to hear someone agree. Did you have the one where they knock you out for the procedure or not? I think it's the next best thing to sliced white bread.

Oct 02, 2016 3:06 PM

I know this is an older forum, but please, anyone considering Lupron, dont! Before my first lap, that gyno tried suggesting it to me. After explaining side effects, and having a friend explain them, even tho I know everyone is different, I said no. Got my lap, and immediately put in medical menopause thru hormone therapy, letrozope and norethindrone. First one takes away your cycle, second helps with hot flashes and night sweats (supposed to). Moved back across country, at this point I said screw it, had taken myself off the hormone therapy because in my mind, they had done nothing. Saw an endo specialist here working with Brigham and Womens and he suggested I go on lupron instead of another invasive surgery so I was on it for 3 months. You get the shot in your ass. It kinda hurts. Mood swings. Hot flashes. I didn't get a period. It was awful. I haven't had a period for almost 3 years from all this hormone shit. And the pain is just as bad as before because I have IC and PCOS and migraines. I'm off all hormones, including birth control, to try and help the migraines, I've had this particular one since March and I've had multiple seizures from them. So please be careful ladies!!!

Oct 02, 2016 5:35 PM

Leelee, it is the next best thing to sliced white bread. No period, no pain, no cramps from hell.

Oct 02, 2016 11:16 PM

I'm on lupron I've had my third injection and it is washing me out. Pin is not better font know what will happen when I stop it.

Oct 03, 2016 1:43 PM

It will take a little bit for the hormones to get out of your system. If you need to be on something like lupron, ask for the pill hormone therapy. It's easier on your body and it's not in your system for a full month at a time. I listed what ones I was on in my previous post if needed.

Oct 03, 2016 1:51 PM

I'm actually in the pill hormone therapy and I'm in a lupron/ chemo mixture. I've just switched doctors due to bad care so I've not had a chance to question the new dr about what I'm on right. But I do know I'm feel im in a brans new form of hell. My body is screaming for relief.

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