114 thoughts on “Life After Lupron”

1. I received six months of Lupron Depot one-month injections, and my last injection was January 19, 2015. I immediately started taking a continuous birth control known as Amethyst. (Updated 02/16/16) It’s now over a year since my last injection. For 6-8 months after my last injection, I continued to have lingering fatigue, memory problems, sensitive/tingly skin, and horrible night sweats. I also still had the occasional sudden mood swings. But today, February 16, 2016, I only suffer from night sweats (almost nightly), a lack of libido (could be the BC), and I haven’t had my period since September 25, 2014, but assume it’s also due to the BC.

   Prior to Lupron, I had the sexual appetite of a teenaged boy; ravenous. On Lupron, it completely died. Since, it’s still non-existent (the occasional flutter here and there), but I’m blaming that on the birth control keeping my hormone levels low and “in-check.”

   The hot flashes have severely decreased, my hair has stopped falling out literally by the handful, and I’m no longer insanely thirsty. I’m glad those are gone. Now if the rest of the side effects would leave, that’d be great.

   Prior to Lupron, I had good energy levels, a photographic memory, no skin issues, no night sweats (unless the desert evenings were just too damned hot), and was prone to a quick temper (but never depression or crying spells). Am I blaming Lupron? No. Well, maybe a bit.

   I know a lot of other women who have suffered from painful physical afflictions since Lupron. So I like to think I “got off easy.”

   A medication that was developed to treat prostrate cancer, and only be used for NO MORE than 12 months in a LIFETIME…well, that can’t be all that good for a gal. Am I glad I did it? Yes. Would I do it again? No.

   LikeLike

   1. Has anybody experience a wet sensation. I think I’m going crazy I feel like little drops of water are falling on me on and off. I have even went as far checking my ceilings and floors to see if the roof is leaking. There are no signs of water but this feeling is weird too me.

      I’ve been researching the side effects which I have had a lot from mood swings, crying, foggy memory, larger breast, and sleeping all day. This is my second month with the shot. I’m scheduled for a hysterectomy next month. I’m really thinking about discontinuing the third injection.

      LikeLike

      1. Talking to a few of our girls here, we all agree it sounds like it could be nerve stuff. Talk to your doctor?

         LikeLike

2. I took Lupron for 3 months after being diagnosed with severe endometriosis. I had not done any research prior to starting- boy, was that a mistake. Shortly after the first shot, I started having horrible hot flashes and night sweats (that persisted even with add back). Then came the fatigue, which I think was the worst of all. I would work my 8-5 and then come home and be knocked out all night. The bone pain was awful too. I hurt all the time EVERYWHERE! And then my hair started falling out. By that time I had enough and I switched doctors and discontinued lupron. My last lupron injection was just over a year ago. Since then, I had a total hysterectomy in September of last year. As far as residual, so far I really can’t say I notice anything except maybe my mind being a little foggy still. I am just so glad that I stopped when I did and now I don’t have to worry about it anymore!

   LikeLiked by 1 person

   1. How long from when you stopped did the bone pain subside? I’ve done a 3month does and am having a full hysterectomy in 2 weeks. I stopped the Luron because the bone and muscle pain is horrific. I’m praying it subsides quickly. I play classical guitar, but can’t at the moment as the tendonitis brought on by the lupron is so bad.

      LikeLike

      1. Hi hun. My bone pain stopped after my second month on Lupron. It didn’t come back for the duration of my treatment. But man, it was horrific. I’ll be praying that it subsides quickly for you, too. 😦 And good luck on your upcoming procedure!

         LikeLike

      2. An update on my recovery. I took a 3 month does of Lupron Depot Feb 1, 2016. I did NOT take the 2nd injection in May. Instead I opted for a full hysterectomy on May 20, 2016. I am 49 years old and close to menopause, so it was a logical next step. The hysterectomy was done vaginally and laproscopically and went well. I am healing well and other than a bit sore I have no pain. The muscle pain from the Lupron has also drastically subsided. I am very hopefully that by the end of my 6 week recovery all the Lupron will be out of my system and I will be a new woman for the next stage of my life. I am having mild hot flashes but really not much at all, but I think cutting our caffeine and alcohol have been a contributing factor to that. There is hope and alternates to Lupron Depot which carry far less debilitating side effects. The hysterectomy was the best decision I have made. I have no regrets.

         LikeLike

         1. Yay! I am so happy that you’re happy!!!!

            LikeLike

         2. So you only took 1 month shot, and had hysterectomy shortly after?
            And 4 years how do you feel?

            LikeLike

      3. Hi I had last prostrap injection in June an still suffering night sweats wld never have this again as had caused sleepless night s

         LikeLike

      4. Hi
         I’ve only had two shots. The last one was Dec 11 2018. I am experiencing extreme body aches and pain…do you have any idea when this will go away?

         😔

         LikeLike

         1. I’m so sorry, Kay. For me, my severe pain went away after the first 2 months of Lupron. For some gals, it doesn’t go away at all during the treatment. For others, it may take a bit longer than 2 months. Every person is different. Have you talked to your doctor about the severe pain you’re having? It was just awful and I’m so sorry to hear it’s still going on 😦

            LikeLike

3. My doctor hasn’t mentioned trying Lupron. I wonder why. Maybe it’s because I’m trying to get pregnant right away? Do most doctors recommend Lupron? Hmmmm. I’ll have to ask about it. Not that I’m dying to try it or anything — it sounds awful!

   LikeLiked by 1 person

   1. Yep. If you’re trying to get preggo, they won’t recommend it.

      LikeLike

      1. I started Lupron Novemeber 2015. I was on Lupron depot 3.5 for 5 months, it was supposed to be 6 month but I decided to stop since it wasn’t helping. While on it I started to get a receding hairline. My memory was awful, I had bad hot flashes but the add back helped with that, and I was constantly tired. I was horribly bloated the whole time on the medication and gained weight I couldn’t keep of. I was had an increased appetite while on it. 3 of the 5 months I would have horrible shooting stabbing pain in my lower abdomen and bleed for a few days. I also cramped constantly. The second month I got a large hive at the injection site. To say the least Lupron did not help my endo, I feel like I have a new spot to top it all off. My symptoms from the medication have all now just about faded 3 and a half months later.

         The day I was supposed to have my 6th injection, April 2016, I started my period which lasted 2 days with a few spotting days aftet. Then I didn’t get one for 2months (60days). Then it took 37days for the next one(today). Each more painful then the next.

         I am Ttc now which is one of the reasons my doctor put me on Lupron to try and get ride of it to give me a better chance. But my cycle is so messed up and I feel like all my normal premenstral symptoms have change it makes it very hard. I feel like I have to learn about my body all over.

         The only positive is that I use to have 5-7 day long heavy painful periods and now it’s only 3 days!

         .

         LikeLike

   2. I had to take six months off ttc to do a Lupron Treatment. The plan is to shrink the endo lesions and then go back to ttc to see if shrinking the lesions would help to conceive. It’s hard to take the 6 months off but hopefully it will have been worth it.

      LikeLike

   3. That is most likely the reason I tried for two years to get pregnant and as soon as I started having such bad Endometriosis pain on top of my left kidney uritor collapsing do to an endometrioma pushing it down they began me on lupron once I decided I decided to stop having children they gave me the option.

      I was on it for nine months and my testimony is similar to the pirstbones above

      LikeLike

4. i am on decapthel injections since 5 years ago with the odd short break …feel the best i have in my whole life

   LikeLiked by 1 person

5. I was on lupron for 3 yrs continuously. I came off for 1 yr and am now back on it for a 3 month cycle before surgery

   My first time on it was a whirlwind if things. Yes it stopped my pain and was amazing in that sense but the side effects were something else. I had an 11.25mg shot every 3 months while being on add back therapy of micronor 2 days on 3 days off and estrace 2mg every day. The hot flashes were unbareable along with the mood swings and headaches were by far the worst. I also have my legs go tingly and numb at night time and being tired was an understatement I was always exhausted. My first bone density test concluded that I have gotten osteopenia from being on it so long

   My second time being on it currently. I took my shot may 21… Side effects this time are headaches and always tired along with the hot flashes and mood swings. And this time in unable to be on add back therapy due to every time I start taking it I start to bleed from it so they have now stopped it.

   So hard to make a choice how do u stay on something that causes so many side effects and bad things just to kill the pain for a little while. Had I known this time would not provide the relief it did for me the first time I would not have gone back on it.

   This will hopefully be my last time on it as the effects are to much to handle for very little relief this time

   LikeLiked by 2 people

   1. Wishing you the best!!!

      LikeLike

   2. Hi, I was an experimental patient in the 80’s. Now 52yo I have nothing but problems. You see it was FDA approved, but I was never contacted! Please don’t go back on it….it’s a great drug at the moment, but long term effects are atrocious! I’m trying to get a class action suit against Lupron. Honestly, I live like I’m 90yo. My whole body has been Effected!
      Good luck!

      LikeLike

      1. Nanette, Lupton messed up my health so badly too. I feel like 80 yo woman. Besides, fatigue , muscle weakness, headaches, pains and aches all over, I believe I have nerve damage in my feet. I barely can walk. Count me in for the lawsuit!

         LikeLike

      2. Does the body aches and pain go away after taking this God forbidden shot?
         😔

         LikeLike

         1. It totally depends on the gal. Mine went away after being on Lupron for 2 months. Some, it took longer. Some, it remained for the duration of their treatment. 😦

            LikeLike

      3. Count me in as well!!!😠😡

         LikeLike

6. I wish more information was available 20 years ago but never the less am glad that more is finally being spoken about the pain and management of Endometriosis. I felt like an alien in my own body and nobody had any idea or would talk about it. Doctors just played God with medications and if your body didn’t respond to it as they anticipated then something was wrong with me and not the medications. I was often told your “too young” for this pain or symptom.. Well duh that’s why is alarming to me too! My experience on Lupron was one of the worst in my life. I thought I was dying a slow death. I was 23 years old and my body was shocked into menopause. Only worse I was a young woman who was supposed to be vibrant and energetic and filled with joy not debilitating pain and thoughts of death and raging mood swings and migrains. I was told I had irritable bowel syndrome, chronic fatigue, liver inflammatory disorder, chemical sensitivity, and chronic allergies. I was even told to just live in a bubble. That’s how it does feel to live in a bubble cause, you can’t walk without sciatic nerve pain, I became afraid to eat anything cause it would erupt my digestive tract, my immune system was collapsed. Questioning God and life existence as I had always been a good Christian girl so why am I being tortured this way. My mind and emotions were in a whirl until I stopped the Lupron. It took 2 years to get myself back to shape of feeling some what human again. I turned to hollistic medicine and herbs and a homeopathic lifestyle to take my life back. It was only through alternative medicine and detoxing my body did I rejuvenate my body into remission. I still have bad episodes but it’s only with I cheat the holistic lifestyle that my body punishes me. But nothing as horric as my experience of being Lupron, HRT or birth control. For me only surgery gives significant relief to maintaining a holistic lifstyle. I pray for all my Endo sister to make peace with Endo.

   LikeLiked by 2 people

   1. What a journey!!! Thank you SO much for sharing your story and message with the rest of us! You provide hope that there is a better existence beyond the fog and haze. You are amazing and strong and my hero!

      LikeLike

   2. Would you please tell me what kind of holistic changes or herbs that you used during your recovery? I am on the tail end of my Lupron depot shot and I would like to minimize the amount of time that this poison lingers in my body. Symptoms are depression, vaginal dryness, hot flashes, crying spells, and tiredness. Any advice on what would be helpful with these symptoms or will help reactivate the parts of my brain and all female parts that have been shut down?

      Sincerely,
      Kelsey

      LikeLiked by 1 person

      1. Hopefully this can help my poor daughter. I would be interested in a Holistic way to get her help.

         LikeLike

         1. She is only 20 and I hate to see her struggling.

            LikeLike

      2. If you receive any info about the body aches and pains going away after stopping the shot…please pass it on

         My last and only shot Dec 11 2018
         I’m suffering from so much body pain still
         😔

         LikeLike

   3. Hi there. I as on lupron for 4 months in 2015. To make a long story short. It was and has still been hell. Som of the horrible side effects are gone(like the suicidal thoughts) but I have not been the same person. Went from under 100punds to almost 200. I know i needed to gain weight somehow but not that much. I have also had no luck with the hot flashes going away. Everyday I sweat, Even when people are freezing, wearing pants and sweaters I am there just happy to feel normal instead of sweating. I sleep with a fan on me while my poor BF freezes to death( tho he can put more clothes on and be fine while I can’t take off enough to be ok) I also have been diagnosed with fibromyalgia since taking lupron. I also need to hip replacements(at 30) but thats from having arthritis since I was 6. I guess it turned into a book. sorry about that. I was wondering if any of this sounds like what you have gone through and did the holistic medicine/healing/leifestyle help it all or some? Also, Would you be willing to tell me what you have changed? what you did differently? Its been too much.
      Thank you,
      Heather

      LikeLike

      1. Hi Heather, I was an experimental patient for Lupron in the 80’s. I was NEVER contacted. It’s the long term effects! I’m trying to get a class action suit together. I’m 52yo and live like I’m 90yo.
         Good Luck…feel free to contact me!

         LikeLike

      2. Since Lupron….nothing but body aches and pains.. That fibromyalgia is definitely from the shot!!!!

         If you find out anything in reference to the body pain and aches. Please let me know.

         Kay

         LikeLike

7. In Oz it is called Lucrin. I was on it during several IVF attempts and then for endometriosis. It took over a year to feel like myself again. I still get migraines which I never had before and my bones are weak. I actually broke my back in three places after slipping in the street.

   LikeLike

   1. Oh my god!

      LikeLiked by 1 person

8. My lupron experience came after lots of tried/failed medication fixes. Birth control gave me migraines so this was the Dr’s (that I was seeing at the time) last hope. He didn’t want to go to surgery route even though it was evident for years that I couldn’t have any more successful pregnancies. So this was my hope to be pain free. I did the 3 month shots with NO add back therapy. Most of the 3 month I was pain free minus around shot times. My total time was 18 months. Aside from the financial burden (which was A LOT OUT OF POCKET)after about 6 months the other side effects kicked in and these are ones that 4 years post Lupron have never gone back to normal. Insomnia, Anxiety attacks, bone loss, short term memory loss and most of the other symptoms the other ladies mentioned. I am just now 2 years post hysterectomy and I wish that was the route I had taken to begin with between surgery and diet control I live 90% symptom free. I finally have quality of life, I don’t even say I have it back because I never had it to begin with. Way the pro’s and con’s before you decide to take the Lupron route.

   LikeLike

   1. Oh hun. I’m glad the hysto helped, but oh so sorry for your long term Lupron woes. *hugs*

      LikeLiked by 1 person

9. I took the shot for one month after my surgery to remove the endo. My doctor told me taking the shot would help with the headaches I was having they were severe. However it didn’t I have them all the time with the unbearable hot flashes. I would never take the Lupron again. I am so tired all the time and I have now starting taking some herbal meds to help with hot flashes and hormone ups and downs.

   LikeLiked by 1 person

10. I had just turned 15 when I was diagnosed with endometriosis. My doctor put me on Lupron thinking that it would help. Come but he did not think about the other medications I was on. The Lupron and the other medications I was on made me have suicidal thoughts and made me go into the hospital because I just couldn’t handle it. I’m still on Lupron and between the hot flashes anxiety and insomnia it makes some very bad days, but it does take away the pain. I am considering a hysterectomy, but being 18 I’m not sure if that’s the route I want to take yet. I am on add back therapy but I have still broken 6 bones in two years. When before I never broke any.

    LikeLike

    1. Ask your doctor for a bone density test. I’ve heard that you’re not supposed to be on Lupron for more than 12 months in your lifetime due to the calcium deficits and bone loss that it may cause. It may be time to let Lupron go… I am so sorry to hear about your journey; it’s not an easy one. Talk to your doctor about other options? Other birth control options that may help? Best of luck!

       LikeLike

    2. My darling.. It devastates me to know your already considering a hysterectomy at such a young delicate age of 18. To be given Lupron at such a young age had to be terrifying. It’s no wonder you went it the hospital. It’s criminal the doctor that prescribed it. It’s such an intense medication and takes an emotional impact on you. Please consider alternative medicine and healing before moving forward with this kind of surgery. It will alter your hormones so dramatically and you will physically feel like your in your 50 and 60 rather than the young woman your meant to be. I know the pain gets excruciating and you feel desperate for a solution for it to stop but it won’t resolve it. My mother had it done at 38 and she had the chance of children but since then she has not been free of other side effects. She does not have that pelvic pain it’s true but she has many other issues she deals with. I am not saying a hysterectomy can’t help but let it not be your first option. For if endometriosis was a male illness, doctors would not consider castration as its best treatment. I pray for your healing and hope for better alternatives for you. Peace with endo.

       LikeLiked by 1 person

    3. Hi Amber, yes it’s the moment Lupron helps. It’s the long term effects that cause horrendous problems . I was on Lupron in the 80’s as an experimental canidate. I was NEVER contacted . I’m trying to get a class action suit together . I’m 52yo and living like I’m 90yo. I had a hysterectomy at age 32. Never able to conceive. My husband now, literally carried me into the doctors office. Its difficult decision. Go to a endometriosis specialist to get a second opinion.Feel free to contact Me!
       Good luck,

       LikeLike

11. I did five months of the six month lupron for endometriosis, adenomyosis, and pcos. It was wretched all the way through. My hair begin to break and fall out severely. I developed severe bone pain and arthritis and fibromyalgia. I felt sickly and in pain all over my body every single day. I had my 4th laparoscopy Nov 2014 and started lupron right after that. By the 5th month I was in horrible shape and asked for a hysterectomy and my Dr told me that the lupron not only failed to do its job, it made my end 100 times worse. My insides were covered in endo. DO NOT USE LUPRON LADIES! PLEASE!

    LikeLike

    1. Oh my god. I am SO sorry! What’s your next course of action? Any plan yet?

       LikeLike

12. I had 2 injections from lupron at first it wasn’t so bad then the headaches and pain started I couldn’t hardly walk I hurt so bad I was in and out of the hospital my doctor told me it wouldn’t hurt me I ended up having 26lbs of fluid on me from the injections and having to follow up with a neurologist he told me the lupron was causing migraines and I needed to stop taking it immediately so I did I still suffer from migraines and I haven’t had any injections since July 2013 . my doctor then told me I needed to have a total hysterectomy said that the lupron made my endometriosis spread and get worse . if I would’ve known at 23 years old and having no kids that I would be been going through all of this after the lupron I would’ve never taken the shots my migranes are so bad that they cause my nose to bleed and severe nausea

    LikeLike

    1. Oh Bridget, I am so sorry to hear of your experience and side effects. I am grateful you’ve written it here, though, in the hopes that your story will help others. Thank you for sharing.

       LikeLike

13. My memory is shit!!! I can barely remember what I wore yesterday. I am still having crazy hot flashes and night sweats and it has been more than a year since my last injection. I was put on nuvaring after and it was cool for a while but then having it in was just painful. I had some pain relief but it was not worth it in my opinion. NEVER AGAIN!!!

    LikeLike

    1. My memory fog still lingers from time to time. I now blame it on the fact that I’m getting old 😉 I am sorry to hear yours hasn’t lifted. 😦 And those hot flashes and night sweats. Curious what your doctor says? “Sorry,” would be a good start…

       LikeLike

14. I am 26 and have had endo pain for years (had a lap done at 20 and they found it then). Always had terrible period pain. I was also diagnosed with Rheumatoid Arthritis at 23, which, thankfully, is under control because we caught it early. Just this last fall, I started having terrible pain around my ovaries and that’s when they suggested this. I am hoping not everyone has these terrible side effects – I assume people who take it and don’t have side effects do not go on the internet to talk about how great it was – and probably never find this site.

    I am now very worried. I got my first shot yesterday (out of 6 total) and have been experiencing fatigue (nothing else yet.. and the fatigue could be from my RA flaring because of the shot).

    No kids yet and wanting kids in a few years, so hopefully this makes it makes the pain go away.

    LikeLike

    1. you make sure you listen to your body and know that you can stop the injections at any time. Don’t feel pressured or bullied into continue the treatment if you don’t want to. 🙂 I hope it helps.

       LikeLike

       1. I just worry – I mean, I looked up stuff before. I just *hope* I am one of the few that can do the treatments without too many issues afterwards. I had a lot of luck with my RA treatments, so I am hoping for the same. I know I can stop. Anyway, thanks for responding so quickly!

          LikeLiked by 1 person

          1. Jessica,

             I was started on the Lupron last July after I was diagnosed with endo. I did two, 3-month shots. I was aware of the side effects and did my research before starting. I’m hear to tell you I did NOT have a bad experience like many people do. I had some mood swings, and being a 23 year old with hot flashes was almost comical to me. It’s been 4 months since my last shot and I’ve only had pain 2 times in the past 7 months of treatment. My doctor even said my egg count was looking good and he sees no issues with me getting pregnant in the future. Time will tell. It’s scary to hear how people react to the drug, however, I’m in the military and didn’t have time to be in the ER every month, or drugged up on pain killers so Lupron was the best option for me. It worked for me. I hope you find the same relief.

             Good luck.

             LikeLiked by 1 person

             1. Leah – this really made me feel better after reading it today (somehow it slipped through the cracks in my email). I (thankfully) have not had to go to the ER with pain or anything and am now on month 4, doing my month 5 injection on the 24th. The only side effects I have had were some really bad depression for one day during the first month, night sweats and fatigue.

                I do want to say that I have RA and OFTEN have night sweats and am often fatigued , so I did not notice them being any worse than before.. but with RA I have flares (like endo) and it was like during a flare (but not constant). RA makes your immune system overactive so I am taking Enbrel to suppress my immune system, thus being sick with bronchitis 3 times this spring UGH

                Month 1 – No noticeable positive effects; Negative: 1 day of depression like I’ve never had, general lethargy and not wanting to do anything that I enjoy – but it went away after that, more pain around ovaries (that subsided within the next month), night sweats and fatigue. I also was sick with bronchitis and my RA was flaring because of that so that probably caused the night sweats and more fatigue.

                Month 2 – Positive: less period pain (!!!!!!!!!!) and less pain during times that were not my time of the month; Negative: night sweats and fatigue (had bronchitis again this month so I could not take my RA meds to control these)

                Month 3 – Positive: even less period pain & pain during other times of the month (!!!!!!!!!!!!!!!!!!); Negative: night sweats and fatigue (AND on my third bout of bronchitis, so barely taking my Enbrel)

                Although I’m not done with my injections yet – I have had a decent outcome – less pain with my periods which is AMAZING and less pain in general.

                LikeLiked by 1 person

                1. Oops – that one I meant 3rd injection. I just took my 4th injection yesterday and have actually had positive outcomes. Just started “add-back” therapy b/c my hair has begun falling out quite a bit. Other then that I feel really good and it has really helped me!

                   LikeLiked by 1 person

15. I did one shot of 3 month Lupron November 2015 after years of pain and trusting my doctor(biggest mistake of my life!!)
    Since then severe hip and lower back pain, exhausted beyond belief, mood swings , tears uncontrollable. Hair loss and feel awful all the time and night sweats severe every single night even now a month after it was suppose to be out of my system!! I did add back therapy for the 3 months. I still have no period had hormones tested they are non existing. I don’t sleep ever! I have told my doctor all along how bad I feel he seems to not care at all!!! And just notified me my hormones may never come back??? This has been the worst nightmare of my life! It has affected my job and my relationship I get married in 2 months yet have completely lost my sex drive.
    All I can say is DO not take Lupron I would never ever ever again and wish I would of known!!!

    LikeLiked by 1 person

    1. Thank you for sharing. Through stories like yours, and all of ours, I hope that there will be further testing and regulation on the drugs that doctors suggest we put into our bodies. Hold hope about your hormones, though : some women reported a return of hormonal normalcy within a year of getting off of Lupron.

       LikeLike

16. Ladies, after reading all this, with all the other websites I am TERRIFIED!
    1 the side affects, so scary I cannot stop crying.
    I’m 25 have suffered (knowingly) with this awful “disease” since I was 15. I just want relief.
    2—how are we supposed to have a normal and healthy relationship on this medicine on top of having this awful illness.

    -I cannot decide, I feel like I have to chose between to hells.

    LikeLike

    1. Kathleen, I’m so sorry for the turmoil. 😦 If anything, you can try the injection for a month (with the Add Back pill) and see how your body reacts… But that’s only if you were wanting to. You’re also not forced to treat with Lupron.

       We had our support group meeting tonight and it’s perfectly clear that the constant back and forth about living a normal life, dealing with medications and surgeries, and finding balance, wanting to be natural, etc. is a struggle we all face.

       If it’s any solace, know that you’re not alone in this battle. And *big hugs* from San Diego.

       LikeLike

    2. See my above comments – this worried me when I started but I just took my 4th injection yesterday and have actually had positive outcomes. Just started “add-back” therapy b/c my hair has begun falling out quite a bit. Other then that I feel really good and it has really helped me!

       LikeLiked by 1 person

       1. Jessica, woohoo! I’m glad you’re having some positive results! I remember the hair. Oh my god. It will stop once you stop Lupron. 🙂 hehe

          LikeLike

17. I did two three-month injections of Lupron back-to-back beginning 12/26/06. It was a living hell for me, & knowing what I know now, I got off easy. I actually don’t remember a lot from that time b/c I was in such a fog. I remember hot flashes, incredible mood swings, & intense rage. I remember thinking, “This isn’t me. Why am I saying/doing this? Why can’t I stop?” Eventually I simply isolated myself from everyone to avoid saying or doing things I couldn’t seem to control. It was very lonely. These things eased on their own a few months after the the end of my six months. My body odor also changed, & that has taken years to revert back to normal, although it’s been changing back in the last couple years.

    It’s been nearly ten years & my body is still trying to recover. The longest-lasting impact has been the inability to lose weight, & the ease with which I now gain weight. I gained 70 pounds during the six months I was on Lupron. Not only have I not been able to lose that, I’ve also been unable to lose the weight gained during two subsequent pregnancies. The shame & social stigma of obesity has wreaked havoc on my psyche & self-esteem. The assumptions made – by strangers, medical professionals, friends, & family alike – are devastating to me. I was a fitness trainer & loved my healthy, fit body. It’s been a major contributing factor to depression. I’ve searched for years how to heal my body.

    For the first time, I’m hopeful that I may have finally found some answers, although I’m now having physical “flashbacks” as I believe my fat cells are releasing stored Lupron. I’ve started a new way of eating (fat & carb cycling for low-glycemic impact), combined with liver/gall bladder cleanses & intense exercise (karate) four hours a week. I’ve finally lost some weight for the first time in nearly 10 years, although mild body odor issues & some mild rage flares have reoccurred since I’ve started this protocol. It’s nothing compared to the intensity of the same with Lupron, & I’m hopeful that my body may finally be able to purge the rest of this drug from my system.

    I’ve tried everything I could find to lose weight & return to my old normal, & nothing has worked for me until the aforementioned protocol. From my research (& there’s very little information out there), other women have also found success with high-intensity work outs. Previously I’ve tried circuit training, HIIT, cardio, & weight lifting. Karate is the only thing I’ve used successfully. As for diet, I’ve done paleo, low-carb, clean eating, & restrictive calorie counting. Food cycling is the only diet change that seems to be effective for me.

    I’ve reached out to the few women from whom I’ve seen testimonies, but none have really given me detailed feedback as to what they did to get their bodies back. With so little information & assistance out there, it’s been a very demoralizing journey for me. Thank you for hosting this here. I hope this is perhaps helpful to others struggling with these same remaining issues. I’m happy to answer any questions while I’m still figuring this out myself.

    LikeLiked by 1 person

    1. I’m so grateful to see your post. I thought I was going crazy. I gained almost 15 pounds in a little over a week of taking the lupron. Almost 30 in total. I’ve only been off lupron for about two months. In that time I’ve gone on weight watchers and have been doing high intensity workouts 5-6 days a week. Not only have i not lost weight I’ve gained. I’m in such a depression I don’t know what to do. I just want my old body back. I’m scouring the internet for help but there’s so little out there on this. I’m hoping my levels go back to normal soon and I can get myself back.

       LikeLiked by 1 person

       1. Heh. Yep, you’re not crazy. I’ve continued to gain weight (160 pounds today!!), but that’s because I’m certainly not as active as I once was. I’ve lost 5 pounds in the last month just by eating right (it doesn’t sound like a lot, but it is to me). Now if I could only get the motivation to be active, I think I can lose another 15 pounds and be at my healthy weight! 🙂 Anyway, back to you : don’t lose heart. Keep trying when you can, eat right like you are, and don’t kill yourself in the process. 😉 Maybe, one day, we can all bounce back to our desired, healthy weights 😉

          LikeLike

       2. HIIT did the same to me! You’re definitely not alone. You’re not crazy. This stuff destroyed my life, & the most I was able to do until recently was just slow the train wreck down. It doesn’t look any better in slow motion. lol I tried Weight Watchers, too. Didn’t do anything for me. Nothing did. I mean, nothing. I already posted above about what’s recently – FINALLY – been working, & it’s nothing like the standard recommendations. The diet guide I found that does the food cycling is Trim Healthy Mama. It’s just a book, but it’s not the original diet concept. The authors just simplified it, but you can Google food cycling & learn about the concept without buying a book. I think the karate is working b/c it kind of rolls HIIT together with lots of calisthenics & down time. My resting heart rate has dropped, & so has my weight. However, I’m stalled now, which I think is due to not watching the diet. Soooo….my body requires massive, strict effort to shed any of this, but now that I’ve found things that work, I’m hopeful. Don’t give up! If what you mentioned still isn’t working, then try something else. Eventually, you’ll find what does. Praying you find it sooner than I did!

          LikeLike

       3. I posted another reply to your comment, & not sure if it went through or not. I just wanted to add that when I posted my original comment in June, I was about 130#s above my “normal” weight, & now I’m 99#s above. I fought for every single one of those 31#s. lol And though I’m stalled right now, I’m not gaining it all back, which is equally as amazing. I used to fluctuate 5#s in a day & up to 15#s in a week! So there is hope, I think. 😉 Don’t give up!

          LikeLike

    2. 10 years omg….I am at 5 years and have the same as you. Weight gain, hair loss, also cystic acne. I was a sexy blonde I now have spine narrowing. I read this could be an effect. I take Super Green vitamins and another just to stop gaining. Oct 2016 no reason. I gained 10 pounds. 5 years ago I was 178 losing pregnancy fat and on a roll. Now I am 230 ish some times I lose 5 pounds but then it jumps back up. My husband has started saying things about my weight. Even at 200 I carried it well but now no hiding it. I am scared and embarrassed when I go out. Even with acne scars I hide well with make up. It’s hard to tell if people look at me is it in a good way ir bad? Will it ever end?

       LikeLike

    3. Hi Alyssa. Thank you for your post. I have gained about 70 lb almost overnight with only 1 Lupton injection! Although, I have been on other estrogen suppressing drugs for 2.5 years. I am so fatigued I can’t excersice. I figured I need to detox my body from those meds. (I am off all estrogen suppressing drugs since May, 2017). Lupton detox search brought me to this blog. Unfortunately, I had no luck finding much information on how to get rid of this poison. I figured I am going to start with fasting 1 day a week; organic dandelion root tea, and juicing. Hopefully, I ‘ll be able to gain enough energy for excersice. Good luck to us all.♡♡♡

       LikeLike

18. I started Lupron Novemeber 2015. I was on Lupron depot 3.5 for 5 months, it was supposed to be 6 month but I decided to stop since it wasn’t helping. While on it I started to get a receding hairline. My memory was awful, I had bad hot flashes but the add back helped with that, and I was constantly tired. I was horribly bloated the whole time on the medication and gained weight I couldn’t keep of. I was had an increased appetite while on it. 3 of the 5 months I would have horrible shooting stabbing pain in my lower abdomen and bleed for a few days. I also cramped constantly. The second month I got a large hive at the injection site. To say the least Lupron did not help my endo, I feel like I have a new spot to top it all off. My symptoms from the medication have all now just about faded 3 and a half months later.

    The day I was supposed to have my 6th injection, April 2016, I started my period which lasted 2 days with a few spotting days aftet. Then I didn’t get one for 2months (60days). Then it took 37days for the next one(today). Each more painful then the next.

    I am Ttc now which is one of the reasons my doctor put me on Lupron to try and get ride of it to give me a better chance. But my cycle is so messed up and I feel like all my normal premenstral symptoms have change it makes it very hard. I feel like I have to learn about my body all over.

    The only positive is that I use to have 5-7 day long heavy painful periods and now it’s only 3 days!

    LikeLike

    1. 6 shots WOW…I only had 2 in 6 months. I read the max for a life time is 12. Crazy they gave you so much. Read my posts and prepare yourself.

       LikeLike

19. The fibroids and endo were so painful. I felt bloated all the time and would cry every time I pooped, it hurt so bad. My doctor suggested to either try Lupron shots or birth control. I was 41 and decided against birth control due to my age and previous smoking history.

    I did some research on Lupron and found some disturbing side effects for a small percentage of users. Due to the symptoms I had at the time, I thought I could handle hot flashes and headaches. I had been experiencing hot flashes and headaches prior to Lupron. What I didn’t know would change me, as there were numerous other side effects that an even smaller percentage of users experience.

    I received 6 one month shots. By the 4th month I was feeling no pain or bloating. I asked my doctor how long I had to be on it. He stated that he wanted to make sure that the symptoms I had experienced prior to Lupron was in fact due to the fibroids and endo. In my mind, it was enough for me. However, my health quickly took a turn for the worst. I ended up getting colitis and pleurisy before my shots were done. I also had been having extremely bad headaches and hot flashes. I decided to stop taking it and switched to birth control pills. Boy, did the fun start to happen!!

    I was diagnosed with arthritis in my shoulder and was put on medication for it, daily. I had irritable bowel syndrome and missed Chrstmas with my in-laws.

    I was also diagnosed with major depression with anxiety. I had been having problems and my antidepressant dosage was raised. Nobody could tell me why I was so exhausted, other than the tiredness that can accompany depression. I did some research on chronic fatigue syndrome and it stated that antidepressants would help with the fatigue. So, my dosage was increased again. I started developing acne on my neck and lower cheeks. It was decided that it was from the anxiety. I would pick at them.

    This is at 6 month post Lupron. The acne cleared up, came back, cleared up and is now back. I also had bought a treadmill, due to the amount of weight that I had gained. I used it consistently and worked up to running. After one run I had to use my daughter’s inhaler. I was wheezing and coughing. This was foreign to me as I had never had problems with exercising. I decided that I would just walk on the treadmill. However, I walked for ten minutes before work and by 1 p.m. I was falling asleep at my desk. I left work, made it home and slept the rest of the day and night. I decided to go to a psychiatrist to manage my medicine. She put me on a new antidepressant (I didn’t get taken off of my old one yet) and my blood pressure skyrocketed. I was told to stop the new one. Two weeks later a different one was added. My blood pressure is lower but is still considered high.

    My primary Doctor was switched to one that was closer to my work, as I had recently transferred offices. My first patient appointment was three months away. When I went to it, the doctor heard something in my right lung and ordered an X-ray. Nothing came up. She then ordered a breathing test. The results showed that I had a slight restriction and was scheduled for another, but different breathing test. The results showed the same thing. An inhaler for maintenance was added for me to take every morning. My doctor told me to just use the inhaler and keep going like I had been or I could be referred to a pulmonologist to decipher the reason why I had a slight restriction. COPD and asthma were mentioned as possibilities. That appointment is next week on Tuesday. After the new antidepressant was added I noticed a ringing in my ears. I wanted to get it checked out and made an appointment with an ENT. They performed a hearing test and stated that the ringing in my ears was from a mild hearing loss. The doctor was confused. I am not around loud noises consistently nor have I experienced a single loud noise event.

    The exhaustion is worse now. I had a great day at work this last Monday. I was very busy and productive. I felt really good. THEN, I tried to move the next day and was unable to, which is a foreign concept to me as I have always been positive, active and social. The exhaustion hit me full force.

    After some more research on Lupron and discovering that it can stay in your system a LONG time. I am a year from my last shot. I have also learned that breathing problems, hearing loss and tinnitus, sinusitis, depression, anxiety, weight gain, colitis, pleurisy, forgetfulness and acne are side effects of Lupron, even after a year.

    I also made another appointment with my gynocologist to check my fibroids and to schedule a hysterectomy. I am all out of sick and annual leave, so it will be unpaid leave. 😦

    LikeLike

20. Joanna, I am so sorry to read this. Continue your fight in seeking medical care and answers. And thank you for sharing your horrendous experience. Hoping it helps others in their decision to take or avoid lupron.

    LikeLike

    1. Is there a treatment to help with this..Tired, hair loss and weight? If you find out any let me know please. I have stuggled for 5 years had thyroid checked..nothing..they say nothing is wrong with you. I say look at me and they shrug

       LikeLike

21. Hello all. I just recently stumbled along this post and was hoping we could open up a discussion. I am really curious as to what age others were when the whole endo thing started.
    I was first diagnosed at 23 in 2015 after being in horrible pain half my life. My doctor wanted to avoid a laparoscopy after he was 99% sure I had endometriosis and start Lupron right away. My insurance refused to pay for anything without a “proper diagnosis” and I went through the laparoscopy where it was discovered that I had very advanced endometriosis with leisons spread pretty much everywhere possible. My right ovary is completely blacked with lesions and no longer functioning while my left ovary is still functioning but not in great condition.
    I Started 6 months of monthly lupron injections in September 2015 and it has been the worst experience in my life. The hot flashes… oh man. They were TERRIBLE and unfortunately very consistent. I would cry myself to sleep every night due to a combination of pain/depression/hot flashes. I was finishing my last semester in college because I had already postponed it and I didn’t want to keep putting school off. It was incredibly hard just to have a healthy mindset. I was weak all the time. Just weak. And now, exactly a year later I still feel some of those effects. I also had the opposite problem a lot of people have and I ended up losing a lot of weight, but this was mostly due to my lack of apetite and frequent nausea. I started to develop memory problems that have not gone away. I felt weak for unexplainable reasons. For me, the 6 months of Lupron were just incredibly painful.
    I just recently turned 24 and am skipping periods with the help of birth control. When I first started my doctor said the whole reason I was going to go through this was to give me more time to be mentally ready to have a baby. The surgery and the treatment would not cure me. It would just buy me some time.
    I’ve read a lot of forums and I know that many woman end up having a hysterectomy, which is the reason why I asked for the initial age of diagnosis. Most of the stories I read are about women who have had kids and therefore a hysterectomy is not a huge life changer. I don’t have any kids. I feel like I am still to young at this stage in my life to start a family. But I’m terrified of the fact that unless I get pregnant in the very near future I will be infertile. I don’t want to lose my chance now and deeply regret it 10 years from now.
    Is there anyone else in a similar situation? What do I do now? This is a question that just consumes me most of the time. I have a long term boyfriend and we have talked about the possibility that I may never have children if i miss my window of opportunity, but it is just too much pressure for me to handle. it seems like an incredibly huge decision. I went through the diagnosis and the treatment and I’m left wondering… now what?

    LikeLike

    1. I hope someone is able to respond to help you, hun. ❤

       LikeLike

    2. Thank you for posting your experience and I’m sorry. I can tell you that I did 1 1/2 years of Lupron and it. Was. Awful. The sad part is that it’s the better alternative to life with endo on your period. I had to have a hysterectomy 4 months ago. I’m 35 and do not have children yet. It was devastating. But let me tell you something, the quality of life you gain back is indescribable. For me, I don’t even remember feeling this alive before all this. The post-surgery healing (mental and physical) with a combo of adjusting to no Lupron and for me, coming off 2 straight years of narcotic pain meds was difficult. I recommend talking to your doc about help with this part.
       To the issue about children. This isn’t easy. I think we will always feel that sense of “loss” but let me share this with you. My twin sister battled endo too. And 4 years ago she too had to have a hysterectomy before having children. It crushed her. 2 years ago though she and her wife got pregnant with an anonymous donor. And her son is a spitting image of my sister. He looks like her, acts like her, he is Her son. (In fact everyone assumes she carried him) When it’s meant to be, it just is. And you don’t have to carry a baby to be a mother. Stay strong. And you are not alone.

       LikeLike

    3. I was officially diagnosed when I was 25 (just shy of 26) but had symptoms since my teens. I had the laparoscopy done & was started on Lupron shortly thereafter. Interestingly, my diagnosis was similar to yours: right fallopian tube was completely encased & not functioning, & the left was partially encased but still functioning, along with a giant blood clot smack dab in the middle. I got pregnant the first time when I was 27 & a half. Second pregnancy when I was 29. I’m now looking into deep massage therapy to help break down the scar tissue, along with natural supplements that assist the body in re-absorbing the tissue. My experience (nightmare) with modern medicine & this has turned me off of pretty much everything doctors suggest. So I’ve been traveling the crunchy highway for several years now. There are a lot of possible options, & I’m still exploring them.

       All this to say, don’t give up hope. If you’re willing to look off the beaten path, there are lots of options. Hysterectomies are not a cure for endometriosis, despite the claims. There are many women who still suffer from it afterward, although many find relief. It’s a crap-shoot. You don’t know which one you’ll be. Chinese medicine says endometriosis derives from the liver. Maybe liver cleansing is an option. Maybe deep tissue massage by a trained professional is an option to break down the scar tissue. Maybe a Naturopathic doctor is an option. I don’t know where your line is. Mine has moved dramatically in the past 10 years since all this happened. I hope these suggestions help you some.

       LikeLike

    4. Isabella, I am so sorry to hear about your condition. I just recently read an article about direct connection between gut problems and endometriosis. I think you should look into that. ♡♡♡

       LikeLike

22. Hi! last February this year, i was diagnosed with adenomyosis and adenomyoma. My OB gave me 3 shots of Lupron for 3 months. At 1st injection, like after a week, the pain had stop. i took calcium, folic acid and chinese meds for my mood swings, bones,control for wight gain and strong foundation for pregnancy. 2nd injection, i felt hot flushes, mood swings, depression. 3rd injection, sometimes i forget easily and i felt bone cracking on my knees, back pain, bone pain on my arms and my vision was change before i have 25/20 and now its 25/25 vision, dizzy, headache, and more on back pain.

    But on the positive side of it. the abdominal pain is gone, It did shrink my adenos, and after four months, i had a follow-up check up and done ultrasound of my uterus, my uterus is clear and my eggs are big. But the OBGyne said. I should wait for my period to get pregnant. after 2 or 3 months of last injections. i will have my period. But until now I am still waiting for my period to go back.

    Is anyone can help me what to do to get back my period?

    Some says that i should start taking iron supplements to get back my period.
    and now i don’t know it feels like the adeno is back.

    Is there any chance that the adeno will go back?
    Is there someone got pregnant after adeno shrunk?
    How long does the lupron stays in our system?
    Is there any drug or supplement or any tips on how to release lupron fully?

    I am tired of waiting for my period. I hope you can answer my questions.

    LikeLike

    1. Hi! Lupron is different for every person. It took about 2.5 months for most of the Lupron side effects to leave my system, but it may take you longer. And it may take your body longer to rebalance.

       As far as Adeno coming back, my understanding is the only way to truly get rid of Adeno is a hysterectomy. It may be able to always come back otherwise.

       Many women with Adeno are able to become pregnant. Don’t lose hope.

       I would let your doctor know you still haven’t started your period several months later and see what they recommend.

       Good luck! And please keep us posted. ❤

       LikeLike

       1. Thank you so much for your reply. It really gave me hope and encourage me to live life. By this month, i will be visiting my OB for a follow-up check up and ask my OB about when my period be back and what to do.

          I will update you soon.

          Thanks A lot….

          LikeLiked by 1 person

    2. Hi, I’m currently in the same situation. If you do see this would you mind emailing me? Snbirch1@gmail.com

       LikeLike

23. I am a 27 year old female medic and I just found this website. I am on the tail end of my last Lupron Depot 6 month shot and I was trying to explain to my boyfriend why I am having hot flashes and crying spells and… dryness. This is the second shot of a two-shot series (6 months each) following the surgery for my endometriosis in January. My last shot was received July 8th. When I first got each shot I had a sharp headache for about two and a half weeks. I also had an ache all over and in my bones for a while like when you have a fever and terrible dryness and low libido for a few months, which is extremely unusual for me I usually have a very high libido.

    From my poking around online I read that they use Lupron for chemical castration and that the natural hormone analogue Lupron is supposed to mimic is actually weaker than the shot itself.

    If you have DEPRESSION a word of WARNING: I never told my gynecologist I have been being treated for depression and anxiety for about 10 years now, it had never occurred to me that anything he would give me would affect my depression. They were two separate issues in my mind. I had finally been off my cocktail of antidepressants for about a year before I got my shot in January so it did not seem something I should mention atm. Lupron put me in such a depressive state and I did not feel like moving because of the fever ache feeling all over (probably from bone density loss) that it would put me in a catatonic state until I would use all of my willpower to force myself to get up and do whatever it is I was supposed to be doing. I even had to withdraw from my classes and have postponed them until Spring. I had finally managed to become emotionally stable and normally functioning through great mental discipline without medication for a year but a few months after I received the first Lupron shot I found myself having crying spells over things that I would’ve considered trivial, antidepressants or not. I finally went back to my antidepressants after I seriously considered suicide over some name calling. I have been depressed before but never one to want to hurt myself, this alarmed me greatly!! And this is not the only case!! I have read other cases online of people completely disassociating or having mental blackouts in which they were not aware of their actions and suicide attempts in patients who have had a history of mental disorders and some who have not!!

    I just want to put a huge warning out there FOR WOMEN WHO HAVE DEPRESSION AND ARE CONSIDERING LUPRON. I can’t tell you if its been beneficial or not, the shot has not completely worn off yet and I hope to the powers that be that it does soon so I will leave that decision up to you. I’ll post again in a few months when I find out if this shot has actually helped me in any way. But I don’t want anyone else with depression or anxiety to find out the hard way like I did that LUPRON WILL MAKE YOU VERY DEPRESSED. My advice is stay away from it if you are currently in an unstable mental state and considering taking Lupron it could be very dangerous for your mental health, I am speaking from personal experience and I considered myself to be in an extremely stable mental state at the time I received my first shot. It says on the side effects packet that patients with depression are to be closely monitored, but that is not something I looked at until after I started having side effects. We all know how long those packets are. So I just wanted to put a word of warning out there for other people in my situation so others will not be caught off guard!

    A few other factors for those making mental notes of each post and some interesting/useful things I’d like to share with everyone:

    My doctor is very good. I trust him with my life and he was the only one that would continue my pain medication until I could have surgery. He is an older doctor and if anyone needs a gynecologist in Charlotte, NC I’ll be more than happy to send you to him, just ask me for his info. The only reason I had the surgery is because the FDA ruled last year that doctors can no longer give out pain medication for chronic conditions except for back (and neurological?) pain. Trust me, I would have much rather have my 10 Vicodin 7.5 a month (which was enough to manage my pain, occurring during periods, sex, randomly, and bathroom breaks and not enough to abuse if I wanted to) than an 8,000$ surgery which I am still not sure helped me or not. I was given no choice by the new FDA rules.

    Also, I have been asking for a hysterectomy since I was 17 (my pain is severe, my endometriosis ruled moderate but mainly on my left side, large spaced out clumps rather than the normal grouping). I am 27 now and still have no intentions of having children. I had cervical cancer ages 17-21 and again at 23-24 and had to have LEEP surgery for that (a heap of fun, they remove your cervix with a laser) and I’m tired of vaginal pain and complications. They keep telling me I might change my mind but to be honest I don’t think severe pain for 2 weeks out of each month and sometimes more is worth me maybe changing my mind one day. I want to adopt anyway, there are so many children already out there without parents.

    I understand the doctors view it as a liability if they give a young woman a hysterectomy who hasn’t had children yet, my previous doctor (retired) told me they had a few court cases in which the woman actually sued the doctor after they had their hysterectomy because they changed their mind afterwards about having children. I don’t know if an actual law has passed or if they have other methods of reinforcing this. I wish my personal medical complications and indeed my ability to live life unhindered without pain or cancer was not in the hands of the FDA or based on court rulings in the past. I need SPECIALIZED care for MY medical needs instead of treating me based on other people’s medical histories. I understand they are trying to legally protect the doctors but at what cost to the patient? Who then should we go to when we need things done that the FDA has deemed inappropriate treatment when they themselves are constantly revising, banning, and reducing drugs that they had declared “safe”? I believe I should have a right to decide not to have children just as much as anyone has a right to have them whenever and wherever they please in this country. I wish I could trade uteruses with someone who can’t and wants to have children!

    I’ll get off my soap box now. Please feel free to ask me any questions about my experience, and I sincerely hope that what I have posted today will help someone in some way. I do NOT think that “doctors should monitor patients with depression closely” should be in the fine print, it should be on the main side effects list or on the front of the box! This seems to be effecting people everywhere. Please ladies, help get the word out to both men (who get this shot as part of chemotherapy for prostate cancer) and women who are considering getting the shot. You never know who has depression and you might help them greatly, even possibly save their life

    LikeLiked by 1 person

    1. Kelsey, thank you SO much for sharing today. Like you, I didn’t read the entire side effects packet until after receiving the injection and began to feel those aches and pains a few days later. (That’s when I learned about sun exposure & Lupron Depot…whoops). Depression hit me pretty damn hard, too. I agree – it should be on the forefront of the warning labels…not buried in the fine print. And it should be something the doctor specifically asks you before prescribing the treatment. I’m glad to hear you’re on the tail-end of your last injection. Here’s to hoping it leaves you swiftly. And wonderful points about the FDA and treatment regulations.

       I’ve shared your post on our Facebook page. Hoping to help bring more awareness to the side effects to the gals who are considering Lupron. Thanks, again! And wishing you well.

       Yours, Lisa

       LikeLike

       1. Thank you! I don’t have a social media account but I would really like to spread awareness about depression and Lupron depot. I try to warn and educate people at every chance I get in face to face interactions, this is my first time posting. I think your forum is wonderful, you feel so alone with endometriosis until you find something like this AND you are continuing to help your followers!

          Yes please feel free to repost it everywhere! And if there is anything that you think that I can do that will help us spread awareness about depression and Lupron Depot please let me know! I think a discussion forum like this one would be perfect. I will even get a social media account :). If you are interested in brainstorming with me I can send you my email and we can discuss it. If you already have too much on your plate I understand but I truly feel this is a huge issue that needs to be brought to public light which could even save lives! I just don’t know where to get started. But again if this is something you’d be interested in please email me:

          gkw7230@gmail.com

          Sincerely,
          Kelsey

          LikeLiked by 1 person

24. I was diagnosed with ending at 15 and was put on a ton of birth control methods, each one stronger than the last. Pills weren’t enough, I had constant breakthrough bleeding and pain. Nuvaring worked for awhile, then caused migraines. Implanon caused acne and severe mood swings. Eventually I got the the mirena but still experienced pain and bleeding. Doctor put me on six months of Lupron.

    Worst. Mistake. Ever.

    I am a 27 year old nurse who lost control of my life. I was terribly exhausted with no motivation to do anything. I cried constantly, and suffered horribly crippling depression and anxiety that required medication. I experienced nausea daily and saw several doctors who just chalked it up to IBS. The bone aches and pains were almost unbearable. The memory fog is awful; you know what you want to say but you can’t manage to get the words out. My hair became super brittle, and my acne went crazy. It caused so many issues among my family, my boyfriend, and my job. I only lasted four months on the shot before I finally told my doctor I wanted to stop.

    The funny thing is, my doctor said the biggest side effects was hot flashes, and I only ever experienced them for a few days after each injection.

    I am now in the first month NOT receiving the injection, and I’m just curious to know if and when I’ll possibly get my life back.

    LikeLiked by 1 person

    1. You will. Keep telling yourself that. ❤

       LikeLike

    2. It has been 5 years for me. I suffer to from daily stomach issues. Acne like cystic. My cheeks are scared now. I never had acne so bad it scared me. I still gain weight and extremely hard to lose. My hair is getting thinner and thinner. I thought maybe thyroid but tests are normal. I just today started connecting my problems with the shots. I too go to a spine doctor for past 3 years and am on pain killers, muscle relaxers and nerve medicine. All my googling research today has me scared. After the shots my hair got a nice curl, the kind I dreamed of. I keep wondering will the curls go away as fast as they came? 5 years..they are getting stringy and thin. Now I want them to go away thinking that means the shot side effects will go away too. IDK….If anyone can help…its been 5 years for me.

       LikeLike

    3. Be careful of Birth Control part of tge reason I did the injections was because a few years before Yasmin Birth Control almost killed me. I got a blood clot that went into my lung. My advice is try to make sure you stay with 2nd Generation Birth Control Pill. Those are the safer. 4th Generation have a higher risk of blood clotting 5x higher. You don’t have to be a smoker for it to happen to you. If your doctor’s are limiting your treat ment get a new one.

       My doctor helped with going in to my untures and used a laser to burn all the cells she could see off. I wish I just stayed with that to see if it helped but she talked me into the injections to slow new cells crom growing.

       !!!!WATCH OUT ON BIRTH CONTROL!!!! Can be very dangerous

       LikeLike

25. An update: nearly 2 years after my last Lupron Depot injection, the last side effect has finally ended!!! NO MORE NIGHT SWEATS!!! *happy dance*

    LikeLiked by 1 person

    1. Hello. You said all of your side effects went away after two years. How long did it take for the urinary incontinence to go away. I am on my second shot and I feel I have to go to the bathroom constantly. I also have urinary incontinence. I am only on one month shots for now. One more shot and then one 3 month shot. I am just worried the urinary incontinence is going to get worse.
       Thanks Kacy

       LikeLike

       1. Mine went away after 2 months. 🙂

          LikeLike

          1. Oh thank goodness. I absolutely hate this feeling!! It’s so embarrassing. I feel like I smell like urine all the time. Anyways I thank u so much for your post. My doctor only told me thatbi might have mood change and possible hair growth. Instead I battled three iinfecttions the first month and now the urinary incontinence issue. I do not mind losing hair or growth. Again thank u for making it possible for everyone to not feel like they are the only one. ☺

             LikeLike

26. I do not want to scare you guys. I found this after it clicked in my head that all these problems I have might be related to these shots.
    After child birth it took over 2 years for my OBGYN checked for endometriosis. I had it. Duringing the surgery to find it my doctor said it had spread in to my..this is gross..anus. So she lazered the cells away and put me on the shots. I received 2 in 6 months. Before this I just started lossing my pregnancy fat. I was 190 then dropped to 178. I was on a roll…Then the shots. I gained close to 40 pounds. I expected the menopause side effects and was told they would go away after treatment. I asked about weight gain. I was told it won’t be anything to worry about..Boy what a lie…

    It has been 5 years now…

    I battle with my weight, I am 230 pounds. I am tired and my hair is brittle and thin. I can see from my bang area straight threw to my scalp. I have night sweats that gross my husband out.
    I started having spine pain 3 years ago. I am now on pain management for my lower back and a slipped disc in my neck. (I never had any injuries to xause this) I put tjis out because today I found this could be a link to the shots. I have to take vitamin D. I saw that was linked as well. So is heart problems. I get heart flutters.

    I thought it was my thyroid. Every time checked, I am with in normal levels.

    What got me looking in to this was the hair loss and weight gain. I can not lose weight. I can keep it steady for over a year then this past Oct 2016 I gained 10 pounds in a month for no reason. My hair is falling out even more. Doctors see nothing wrong in blood test.

    I was a sexy happy blonde. Now I have cyst acne (never had ance big problem until the shot) I am fat and thin hair. I did get at the start nice wavy curly gair from the shot. Now it is stringy thin wavy hair.

    It has been 5+ years…WHEN WILL IT END?????

    LikeLike

27. Sorry for the typo’s…last part I did get nice wavy curly HAIR but now thin and stringy

    LikeLike

28. I should add the shots and laser did help my endometriosis pain. But now on pain meds so if the pain is back I really would not know. I sometimes think it is back but my meds block it.

    LikeLike

29. During my research I found this. I signed and in the letter tgese lingering side effects are scary.

    http://www.petition2congress.com/1902/investigation-lupron-side-effects-leuprolide-acetate

    LikeLiked by 1 person

30. Hi, my name is Brittany and I am 28 I had my first laproscopic procedure done June of 2012. That’s when I found out just how bad my endo was. It’s considered stage 3. It’s on my uterus bowels,bladder, and right ovary. I started lupron injections about 2 weeks after surgery. That time I got 2, 3 month injections. During lupron, I barely slept. I had hot flashes like no other, mood swings, and headaches. It still did not compare to the pain I previously had. I still told myself “never again.” I got my period at the 90 day mark. Periods weren’t nearly as painful for about 6 -9 months. The pain soon returned. I ended up getting on the depo shot for 3 months (periods disappeared). Once returning I was in a tremendous amount of pain during my period. I finally told My Dr I wanted another procedure. So on March 16th 2016 I got it. She told me I needed the lupron. We went back and forth. She told me she highly recommended it so I agreed to 1 month injections so I could stop if it was too bad. If I was even 2 days late on getting my injection I started my period. I missed 2 months then the pain got too unbearable. I started them back up and all was going well until November when I flooded for 1 week then off for 1 week then started again for another week (September and October I bled as well but not as much). In December my period never came. On January 7th 2017 I took a pregnancy test and it was positive! I am currently awaiting to go to the obgyn. Mind you, I have a son that was born 9/8/2007. I NEVER thought I’d have another. I believe that hellish drug is the reason I got this blessing.

    LikeLiked by 1 person

    1. Congratulations on your surprise, Brittany! Hoping you have a safe and healthy pregnancy, and wishing you well with your pain after your delivery. ❤

       LikeLike

31. I am 36 and started my first of 5 shots in august of 2016. I am HYPERSENSITIVE to side effects to any medicine. During the first 3 shots, my worst symptoms were cramping, hot flashes, memory loss, and decreased sex drive. I actually petitoned to continue the therapy after the first 3 months. 6 months was the max they would allow. already had EVERY single non-narcotic drug in the little black book, the laproscopy, etc. another surgery was not an option. I knew this would be short term….however, now that it is february, i feel like i teased myself. 5 months VERY little pain, how do you all learn to live with the pain again?? I want to get pregnant so a hys is not an option…i have a non-narcotic prescribing ob/gyn…..i feel like i lost my pain mgmt and coping mechanisms…..thoughts advice???

    LikeLike

32. Long story short
    6 month shot of Lupron. I actually did not menstruate for a year and it’s been two years and still no sex drive. Also got another disease along side “fibromyalgia” thanks to going through menopause at 25.

    LikeLike

    1. oh man!! I hope that SD comes back…and I’m so sorry to hear about your fibroyalgia diagnosis 😦 I hear it’s horrendous

       LikeLike

33. Pingback: Lupron Depot: Q&A – Bloomin' Uterus

34. Anyone have stomach issues after lupron? I have been bloated…2-3 inches to my stomach, retaining fluid in my face arms, legs and gut. I am constipated…maybe pooping 2x/week. It started while on the shot. Last dose was Aug 2017. Since then my mood swings, anxiety, bone pain, hot flashes, night sweats have gone away. Bloating problems stayed. I took my diet down to bread and chicken and immediately lost 6 lbs so likely water not fat. Right now I have expanded my diet some. Doesnt appear to be gluten related. Curious if anyone else had this happen.

    LikeLike

35. Pingback: Have you Seen the Endometriosis Commercials on TV? – Bloomin' Uterus
36. Pingback: Lupron Depot : My Experience – Bloomin' Uterus

37. I had my first Lupron injection in Sep. 2013 for fibroid reduction. A few problems, nothing major. Second injection, Oct. 2013, caused immediate dizziness, anxiety, severe joint pain, fatigue, headaches, insomnia, mood swings, etc. I didn’t know what the heck was going on. I couldn’t walk, couldn’t drive, couldn’t work. I went on FMLA and short term disability leave for nearly four months. My doctor immediately discontinued further injections. I was also told the side effects would go away in a few weeks.

    I had a partial hysterectomy in Dec. 2013.

    Jump ahead to 2018: I still have the same side effects, and more. Diagnosed with Fibromyalgia in 2015, multiple digestive disorders 2016 to now, Major Depression, Generalized Anxiety Disorder, Migraines, bursitis, IBS, hypertension, and much more. I gained 35 pounds. Had dozens of doctor and specialist visits since 2014. I currently take seven medications.

    Prior to taking Lupron, I NEVER had these medical problems. As a matter of fact, The only time I needed to go to the doctor in 2012 and early 2013, was for colds and minor health issues.

    I lost my long term job in January 2017. Tried to work with two other companies in 2017. Was terminated from both jobs within two months.

    My adult children has had to take over my finances. I’ve moved from Michigan to Alabama and currently living with my daughter, son in law and grandchildren.

    I went from a top performer in the workplace, to and unproductive, emotional employee in a matter of a couple years.

    I’ve applied for SSDI. Still awaiting an answer on my initial application.

    I feel worse now than ever. I didn’t sign up for this. I wish I could go back five years and change my decision to take Lupron. That drug changed my life, for the worse.

    LikeLike

38. Would it be alright if I shared my endometriosis and Life After Lupron stories, mentioning some major symptoms that I am currently going through that may or may not be related to the endometriosis or Lupron long term?

    P.s.- I admire this blog.

    xoxo.

    LikeLike

    1. Absolutely, please feel free!!! I have a Share Your Story feature here on the blog and please feel free to also share your Lupron experiences herein the comments section! 😀 https://bloominuterus.com/share-your-story/
       And thank YOU!

       LikeLike

39. Had my first Lupron shot 3 weeks ago. No real symptoms until week 2 when I started having doubts while driving. I have been unable to drive for a week now. Not having another shot. I was scheduled for 3 total. Have you anyone else have issues with driving?

    LikeLike

    1. What happens while driving?

       LikeLike

40. I too suffered with Lupron side effects. I received 3 rounds of the 3 month shot in 2017. After the first shot the severe endo pain was over!!! I felt so relieved that thought I was on to something. Well the was short lived, although no endo pain, after the 3rd shot I started having every side effect known. Hit flashes, weight gain, joint stiffness, tender feet ( I could barely walk in the mornings), carpal tunnel in both wrist! To date, I am still unable to lose weight ( dieting, exercising) nothing works! I am now 208 pounds and my usual weight is 165. I also still suffer from joint stiffness. Most nights my back just locks up to the point it wakes me up! And the hot flashes are still going! This shot has definite taken its toll on my life. I am still hopeful that the side effects will eventually all diminish. I am now on nothredrine and it has stopped my cycles. Next step is a possible hysterectomy, but I now have frozen pelvic from all the endo adhesions 😦 I am in stage 4! Again I still have hope and I am found my best to keep pushing and live life! Hope this helps someone!

    LikeLike

    1. Thank you SO much for sharing! I’m hoping your side effects will eventually fade, too. And am wishing you the best of luck with any upcoming treatment plans and surgeries. Have you looked into pelvic floor therapy for that frozen pelvis? A few girls in my support group say it’s helped them tremendously. ❤

       LikeLike

41. So glad I found your site. I compiled my experience post-Lupron on my own blog so sharing a link:
    http://fertilitywisdomfromeast.com/life-after-lupron-and-how-i-fixed-it/

    LikeLike

Comments are closed.