Lupron Depot : My Experience

lupron

Many of you know I fondly refer to my Lupron Depot treatments as “Liquid Crazy injections.”  I’m happy to say that January 19, 2015, was my last Lupron Depot injection for my Endometriosis!  I had a total of six months treatment; 1 injection per month.  I was also taking the “Add Back” pill, Norethindrone, on a daily basis.

I figured I’d write about my side effects and symptoms, just in case anyone else was going to be starting or has started, the same injections. I’d love to compare notes and see how you’re feeling if you had Lupron.  Most of the side effects I experienced vanished in about 2 months…but I did suffer from insane night sweats for a year-and-a-half afterward!  And my fingernails have never recovered…I’m also wondering if you have any long-term side effects that you attribute to the Lupron Depot injections…

If you would like to read how others fared with Lupron Depot, please read the comments of Life After Lupron.  And a study published in the March 2018 edition of Journal of Pediatric & Adolescent Gynecology followed a study frmo 2008 to 2012 about the side effects of Lupron Depot with the Add Back Pill.  It found that:

  • 96% reported side effects during treatment
  • 80% reported the side effects lasted longer than 6 months after they discontinued treatment
  • 45% reported side effects they believed were irreversible, including “memory loss, insomnia, and hot flashes”
  • Despite the side effects, two-thirds of the patients said they’d recommend Lupron Depot others, as they felt it was the “most effective hormonal medication for treating Endometriosis pain.”

I won’t sugar coat it one bit.  I hated the entire treatment. But it did get a little bit easier as the months progressed.  Here we go:

Body Aches: During the first two months of treatment, there were several days where I could not get out of bed.  Even moving my fingers was agony.  Body and joint pain beyond explanation.  I missed time off work, nearly got written up for it, had to get a note from my doctor, and walked like I was an 80-year-old woman.  Thankfully, the aches didn’t stick around after the second month.  But man, they were unbearable.

Brittle nails: My nails have continuously been tearing, bending, breaking, chipping, and flaking since about my second treatment.  It’s just horrible.  I’m not sure that it’s related to the treatment, but prior to starting Lupron, my nails were strong and would only break during extreme mishaps.  Now it’s every day, at the slightest brush. I have to keep them trimmed down to nothing so they don’t snag on anything. Poor things. (2018:  my nails have never been the same.  They chip at the slightest offense, they break, they peel off, they bend backward…)

Depression: Now I’m not a person who suffers from depression. It’s just not in my nature.  But OH MY GOD…this medication put me into such a downward spiral funk, some days it was hard to remember none of this is my fault. And that there is light at the end of the tunnel. And that my friends and family do love me.  If you’re already susceptible to depression prior to this drug, please, PLEASE have a strong support network of friends and family prior to starting. It’s just vicious.   Luckily, this side effect faded quickly after treatments ended.

Fatigue & weakness: The fatigue and weakness has only started to get better this past month or so.  But there have been times where I needed multiple naps (2-4 hours long) every day.  I would become completely worn out just with one quick trip to the grocery store (my day would be ruined with naps and zombification) or even just my short commute from work would lay me out for the evening.  I couldn’t walk around my neighborhood without feeling like a zombie and slowing to a crawl.  Stairs and uphill slants were next to impossible. As an active and avid hiker, this has been miserable (may I just say : cabin fever!). My entire body was against me.  Near the end of my six-month treatment, I was able to maintain a good, strong pace around my neighborhood (which is barely 1.0 mile), with only minimal discomfort and loss of pace.  (2018: I’ve yet to regain my strength and endurance for long walks or hikes, but I think that’s what I get for not exercising since my Lupron days years…time to change that!)

Hair loss: I know we all lose hair, every day.  I’m used to having to clean out my hairbrush once a week.  I don’t freak out over the hair in my fingers after a nice shampoo in the shower.  BUT since the early months of starting Lupron, I’ve had to clean my brush EVERY day, pulling out a massive rat’s nest of hair!  It’s so full!  And the amount of hair in my fingers in the shower has doubled, sometimes tripled.  Even my hairdresser has noticed when I go in for a trim.  I don’t have any bald spots or anything, but it’s been such a massive difference!!  My hair has also lost it’s luster and has become stiff, dry, brittle, and prone to an incredible amount of split ends.  (2018: with proper care and TLC, my hair regained it’s luster and health)

Hot flashes: Thankfully I didn’t have too many of these.  I prepared for them, buying a small portable fan and a FrogTogg, which I kept in my purse regularly.  But, yes, I did have several.  And they were nauseating.  But they were done and over with quickly.  These were the least bothersome of my side effects.

Incontinence: Just call me “Pee Pants.”  It’s sort of a laughable joke now.  The last few months of treatment, the slightest sneeze, laugh, or cough would send a trickle down my leg and me running to the restroom.  But one evening while on the phone with my mother, disaster!  One small toot (yes, trying to keep this…civilized…I said, “toot”) and I flooded my couch cushion with urine.  I didn’t even know I had to pee…At first the warmth was confusing: was my gas super-heated?  But then the wet!  Not only did I run to the bathroom to grab a towel and soak up the couch, but I had to change my pants and hang my head in shame, although Mum, myself, and my boyfriend were also uproariously laughing. 😉  I did a bit of research and women going through menopause have weaker vaginal walls and bladder muscle control. Incontinence can be a regular occurrence for menopausal and post-menopausal woman. Oh joy.

Increased appetite: Ravenous! The whole time.  I eat numerous times a day.  Healthy, but numerous.  I have breakfast between 8:00 and 9:00, a mid-morning snack by 10:00, lunch between 11:30 and 12:00, mid-afternoon snack by 2:00, dinner between 4:30-5:00, followed by an evening snack.  Every day. It’s like a dance these days!  But I’ve put on my missing 10 pounds since surgery, which is good (I needed it).  And have managed to keep my weight at a healthy 140 pounds.  I’ve learned to eat healthier snacks (banana instead of cookies, salad instead of burgers, that sort of thing).  But, yes, ravenous the entire time I was on Lupron Depot.

Increased bust size: My boobs grew! MY BOOBS GREW!  My tiny little As are now a full B (small C, depending on the bra brand!).  My nurse has no idea if they’ll stay this new size once the medication clears my system.  But it’s a noticeable little difference, and I’m ecstatic over this side effect. 😉 (2018: My boobs never reverted back to their tiny original state!!  Best Side Effect…EVER!)

Increased thirst: Just like my appetite, I am insatiable when it comes to water nowadays!  Thirsty. So thirsty. I have to keep a full water bottle with me at all times! And refill it multiple times per day.  Constantly drinking water at work, and when I get home.  Almost always have  glass handy.  I don’t know why this is, but it is.  And, again, it’s a healthier kind of side effect, so I hope I continue this newfound habit long after the Lupon leaves my system. (2018: I am not as incredibly thirst as I was when I was on Lupron, but I still tend to drink more water than I did before the treatment.  That healthy habit hasn’t faded).

Lack of sex drive: Bah. Need I say more? My previously-epic libido is now non-existent. Gone. Fini. Come back to me, Libido. Come back….(2018:  After Lupron Depot, I went on a year of continuous birth control pills.  Libido: gone.  BUT…I went off the pill in Sept. 2016 and my libido has come roaring back to life.  Look out, hubby!)

Lack of monthly cycle: I haven’t had my period since September 25, 2014.  That’s the Lupron at work.  It’s been fantastic. No cramps. No bleeding. No bloating. No back pain.  Amazing!  I know I’ll be starting my period sometime soon (even though I’ll be starting birth control), so it will be an interesting experience.  I now have NO clue when I’ll be starting, what my new cycles will be like, how long they will last, or if they will be predictable.  We shall see!  (2018:  I was on the pill for a year.  During that time, I only had 4 periods.  But my Endo pain was nearly daily and came back with a vengeance.  After my 2nd laparoscopy (Sept 2016), I chose to get off of the pill.  Now my cycles do what they want, when they want, are as long or as short as they want, and hurt as bad as they want…)

Mood swings: I became a sobbing, blubbering, yelling, mad, insane, loveable, calm, snappy monster. Unpredictable. At the drop of a hat, I could sob. Or laugh. Or snuggle. Or claw your eyes out. May I just say that my boyfriend, family, and friends have all been incredibly patient and wonderful through this stupid process.

Night sweats: Now these are horrible. Almost nightly I wake up with the sheets drenched, my entire body covered in a sheen of cold sweat. Disgusting. There’s no dry spot on my side of the bed anymore. They’re awful! Hurry up and go away, Night Sweats! I don’t want you anymore…(2018: these lasted nearly a year and a half after I went off the pill.  I get the occassional sweaty-episode, but not nightly anymore).

Pain at injection site: So the day or so after the injection, my poor buttcheek is killing me. Sometimes that pain & discomfort radiates down my leg.  Bah. It’s just an annoyance, but daaaaamn my buttcheek!  Think they can make that needle any longer? 🙂

Pain during sex: I blame this on thinner vaginal walls and a lack of natural lube.  Even the slightest jolt is painful. So our sex life has changed a lot: slow pace and I’m on top most of the time (for control of depth).  It’s not enough pain to discourage sex (I truly enjoy the intimate connection sex brings to a relationship).  And we’ve had to incorporate the use of condoms (the doc says you can still get preggo on Lupron and they want to avoid that) and lube into our intimacy.  Neither of which I’m a fan of, but the lube is SOOOO necessary these days. (2018: sex can still be painful. We’ve learned to alter positions since some cause more pain, I use a different lube, and we still use condoms.  I don’t think this will ever go away…but then again, I do have two cervix, which may be a cause of my painful deep sex).

Susceptible to sunburns: Lots of sunscreen and big, silly, floppy hats.  Ladies (and men) on Lupron are far more susceptible to sunburns due to the lack of a hormone that protects skin.  That lack of protection could lead to nasty dark discolorations, too.

Vaginal dryness: I don’t make one little bit of natural lube anymore. I’m dry like a communion wafer, the Sahara Desert, and China Lake. I’ve become good friends with KY lube (nasty stuff).  I truly thought with the amount of goo my body regularly produced, that this side effect wouldn’t effect me.  Boy, was I wrong.  I’m all dried up. (2018: man oh man, was I glad when this one faded)

These are only the side effects I know about.  Lupron Depot is infamous for causing bone loss and some women also claim it has caused neurological issues.  For now, I am glad I went through with the treatments.  Anything I can do to thwart the growth of my Endomtriosis!! I know Lupron doesn’t help some women with their Endo pain, or even stop their bleeding, but it did for me. Every woman will react differently to this medication.  I’m looking forward to reclaiming my life prior to this medication.  At $1,000 a pop (but thankfully my insurance covered most of it), I never want to have to endure this economically or physically. Ever again.

 

**Updated April 10, 2018**

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

53 thoughts on “Lupron Depot : My Experience

  1. My father did Lupron after his prostate surgery. He had the sweats something awful, but one thing that he found out was that he now has osteoporosis.

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      1. I’m into my third month and due for the second shot. I am very nervous and thinking of stopping it. I’ve experienced a severe amount of hair loss and fatigue. This is giving me serious anxiety that I just don’t think I can handle anymore. I’m afraid if losing all my hair. The night sweats are horrible and mood swings too. Mainly the hair loss though. I value my hair a lot and don’t want to lose it all. I just don’t think the side effects are worth it. I don’t feel I’m living a normal life always worried I’m going to lose all my hair.

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        1. I run a group called lupron warriors on facebook please message me if you have had or are thinking of having lupron also known as zoladex, prostap, gonapeptyl, relugolix or anything that will put your body into a chemical menopause . It has ruined my life I’m now disabled. Theres over 60,000 people suffering around the world please don’t have the injections or pill because it comes in pill form now too Xxx

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  2. Thanks so much for sharing your story. I had my first injection today. My doc told me that I might not feel any different until the second shot, but watching and waiting nonetheless. I do appreciate your sharing.

    Liked by 1 person

        1. It’s a low dose estrogen continuous birth control (no placebo / sugar pills to take). It’s supposed to make you have less periods (4-5 a year as opposed to 12). Also, please do NOT let your doctor put you on Yaz. There are severe side effects and there have been numerous lawsuits due to injuries and death. I made my doctor research Amethyst before he’d agree to prescribe it. More on Amethyst can be read here : http://www.drugs.com/pro/amethyst.html

          Liked by 1 person

  3. I really enjoyed reading about your experience w Lupron. I just finished a short four month treatment w it in December. I’m still coming down off the meds. So interesting to hear about all the other issues this medicine causes that they don’t really tell u about and/or the dr diminishes although it greatly affects daily life. I too had a large majority of the issues that you wrote about. Im hoping the side effects wane over time. Right now for me the joint pain is killing me. 80yr old woman indeed. I’m hoping a short stint on prednisone will calm down the joints otherwise it feels like I can’t move w/o excruciating pain.

    Liked by 1 person

    1. Ah ha! See! I wasn’t crazy 😀 I hope your aches fade soon! Most of my side effects are gone now (nearly 2 months after my last shot). Still have the night sweats though. Like…..drenched. Bleh. Hang in there, woman. 🙂

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  4. I just got my second shot a few days ago. I have a mild form of depression and have been fearing this side effect. I hardly felt anything the first month and when I got my second shit I asked the nurse if the symptoms would increase and she said the wouldn’t. I feel like that was a lie.

    I feel like an insane and incredibly depressed person. So many tears. My hot flashes are mild but they’ve increased. And those awful night sweats won’t let me sleep. I haven’t experienced the other side effects you’ve spoken of but I’ve noticed being more exhausted during my workout bootcamp.

    Did you find these symptoms increase or come about during the second month? Did they all happen at once or was it a progression?

    Liked by 1 person

    1. The depression was constant during my six months, and then some. Most of my symptoms showed up the second & third month, and hung out for the ride. Hang in there. And if you ever need someone ti talk to, I’m here.

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      1. I take my lost shot of lupron at the end of June then I get on birth control. How do you feel since it’s done? Do you feel like you’ve snapped back? My depression and moodiness has changed me and basically ruined my relationship. I feel like I am in this own little bubble with myself and don’t want to be bothered by anything or anyone.

        Liked by 1 person

        1. It’s been four months now. It tok almost 3 months for me to feel almost 100%. My libido is still almost non-existent, and sex is still painful and few/far between. I hope it’s a quick recovery for you!

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  5. I started a journal of my horrible side effects. The list is so long it’s pathetic, however worst thing I’m experiencin is neuropathy. Hands and feet tingle, burn, pins/needles, loss of sensation, can’t tell if something is hot or cold because I lost feeling in hands and feet. This is in the end going to cost me my job. I’m a dog groomer and I can barely hold shears, or clippers, can’t tell if bath water is hot or cold. I don’t know what to do. Dr said try b vitamins, I did but it’s getting worse. B vitamins did nothing. Anyone else experience this???

    Liked by 1 person

  6. Hello! Thank you so much for sharing your journey through during your Lupron Depot treatment.
    I did the laprascopic surgery to remove as much of the endometriosis as my doctor could take out. I also have a huge fibroid anterior to my uterus. I received my first shot about 3 weeks ago and I am still in pain. My doctor recommended going to pelvic physical therapy because I hate taking pain meds. How soon after the first shot did you start feeling relief.
    One shot is supposed to be good for 3 months and I get my second shot in December.

    Liked by 1 person

    1. The all-over body pain lasted about 2 moths, but the whole 6-month experience was unpleasant. But Endo pain-free…It’s different for every woman, though. Good luck with your treatment!!! And I hope you start to feel better soon. Several gals in my local support group do pelvic floor therapy and rave about the results!

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  7. Thanks for sharing your experience. I’m two weeks into my first injection. The initial hormone surge plus reading all the horror stories online sent me into anxiety and panic so intense I couldn’t stop it without taking an anti anxiety medand getting back into therapy(I have generalized anxiety disorder and a long history of depression) . I had a few days of awful joint pain but it went away. Some bloating and ankle swelling off and on. Increased thirst. Chills at night. Honestly, other than the anxiety it hasn’t yet been awful.

    Today, day 15, I started… My period? If so, it’s five days early. I’m only on a one month injection. No real relief of symptoms though and the anxiety has been bad enough I don’t know if I could handle continuing this. Right now I just want to get through the next two weeks… see my Dr again the 17th…Hopefully without too many more side effects… And get this stuff out of my system.

    Best wishes to all on this. Experiences with Lupron are so varied it is hard to know if it’s right for you without trying.

    Liked by 1 person

  8. Thanks for writing this, it’s nice to know we’re not alone in this. I had my third, and hopefully last shot, for my fibroid on Monday. I agree 100% with everything you said and felt. My doctor recommend b complex after my second shot to help with the moodiness and depression and it has worked wonders for me! It’s a great alternative to taking an anti anxiety medicine if you’re not into that. The body aches and joint pain is a different story though. Hopefully that will start to go away soon.

    Liked by 1 person

  9. I’m late to the part here but I just discovered your blog not too long ago and I’m so glad you chose to write about Lupron. I actually started my own blog because I could not find enough real life stories about Lupron. I switched doctors after my first shot and my new doctor is AMAZING! With 22+ years of experience and specialities in pelvic reconstruction, infertility, etc he has been my favorite doctor so far! He replaced my northinedrone with amitriptaphylyne (these spelling are all going to be wrong lol), clonindine, and paroxatine. They have helped so much! I’m also taking 8 different vitamins. I’m on shot 5 and since my doctor wants to do 8 months instead of 6 I have a little ways left to go. One of the hardest things for me was the continual exhaustion and the depression. Still hoping this crazy thing of endometriosis has a cure sometime soon. Continue being strong ladies!! ❤

    Liked by 1 person

  10. So happy to read I’m not the only one dealing with their nails breaking. I’m three months into my (hopefully only) 6 month treatment and my previously long, strong, shiny nails are a hot mess. One of my toenails just ripped off last week with no injury to cause it. Effing sucks. Thank you for sharing your experience and I hope you’re endo is under control these days!

    Liked by 1 person

  11. Thank you so much for sharing your experience. I found your post while researching hair loss as a side effect. I’m scheduled for my 4th shot next week and get married in 3 months and I’m experiencing major hair loss thats making me nervous. Trying to decide if it’s worth going forward with it because of this and the other side effects. 😦

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    1. Hi Nicole!
      First of all, CONGRATULATIONS on your upcoming wedding! WOOOOO!
      Secondly, I’m sorry you’re experiencing the crappier side of Lupron. Continuing the medication is totally up to you and you should feel free to have an in-depth conversation with your doctor before you get stuck the next time. Just know this: I feel like my hair loss was not permanent and I’ve got a big, fluffy head of hair. As a matter of fact, none of my side effects plague me anymore, although some took quite a while to go away. If you feel it’s worth it, continue. If you don’t feel it’s worth it, stop. Or even if you just don’t want to go through the hell of the side effects (’cause that’s what it is: a living hell), please feel free to stop.
      Don’t let anyone bully you into a decision. ❤ Whatever you decide, it's okay.

      Again, congratulations on your fantastic upcoming day!

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      1. Thank you so much for hope that all these awful side effects are not permanent! I have everything you have talked about and more. Day 46 of the 3 month…cannot wait to be rid of this drug. How long before your hair came back?

        Liked by 1 person

  12. I have been clear of depo for well over a year now. It has helped control my endometriosis immensely, along with continuous contraceptives, and for that I am sooooo grateful. However, the treatment was mentally and physically soooo diffucult, I had massive unfounded anxiety that although not as intense still lingers long after completing the treatments. Shortly after my final shot my superlong hair all began breaking off and I was left with crazy amounts of hair just gone down to like 2 inches. I ended up having to cut my always long hair very very short and add bangs to try to blend the breakage, mostly I was wearing hats, alot. My hair has changed forever I think as it still breaks easily and am having a hard time getting past my shoulders. All in all I am glad I did it but just fyi….I think of my poor hair being ruined probably forever and anxiety as my long term effects.

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  13. I did two rounds of Lupron back in 2003/04? My side effects are severe memory loss, brain fog, incontinance (I used to pee every time I sneezed or vomitted for years after this), loss of sex drive, major weight gain (about 60 pounds), and depression/anxiety. Two to three days after my first injection I was pain free and loving it. Years later I started DEPO Provera and was on it almost 6 years. I managed to fracture a finger getting a hand massage and had an absense if periods along with the other symptoms that remained. I attribute these two drugs to the severe hormonal imbalance I’m dealing with now along with a host of other health problems I now have. I don’t consider these drugs safe and although they eliminated my pain temporarily they are only a band aid and I am paying for it now.

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  14. Thankyou for sharing your experience. It all sounds so familiar. I have had 4 x 3 month shots. Fatigue, bone pain (even my thumb hurt) hair loss, anxiety and as I call it “the rage”. I have fibroids and it has mainly apart from a few small bleeds stopped my periods which were so heavy I ended up having blood transfusions. Oh and did I mention the hot flashes that make you want to rip your clothes off in the most inappropriate of places – not that there’s ever an appropriate place to that bar the comfort of your own home! It’s different for every woman and there is pros and cons to weigh up.

    Liked by 1 person

  15. Thank you so much for writing this! It’s nice to know I wasn’t crazy. I’m on my 3rd month of a 3 month injection. I can’t wait for this crap to wear off. The doctor wanted to shirk my fibroids for surgery to be able to perform a laparoscopic hysterectomy. I’m 2 weeks post op and the Lupron did NOT shrink my fibroids. But I did get to live through the hell of all of Lupron ‘s side effects. Fun times 😪

    Liked by 1 person

  16. Thank you so much for writing this! It’s nice to know I wasn’t crazy. I’m on my 3rd month of a 3 month injection. I can’t wait for this crap to wear off. The doctor wanted to shirk my fibroids for surgery to be able to perform a laparoscopic hysterectomy. I’m 2 weeks post op and the Lupron did NOT shrink my fibroids. But I did get to live through the hell of all of Lupron ‘s side effects. Fun times 😪

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  17. Hey I’m sorry- I had the lupron depot and the vaginal dryness is actual murder. I had mine in January of this year- did your vaginal dryness last for three whole entire years??? Was there anything that helped? Other than hormone creams?

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    1. My vaginal dryness didn’t last for years 😉 It eventually came back to it’s old gooey self, but I don’t recall how long that took. But, we still have to use lube every time (and that’s not something we had to do everytime before LD). We now use an awesome lube that was also made by an EndoSister. We freakin’ love it! I wish I had this when I was on LD – not for sex (’cause I didn’t have a sex drive…but for every day comfiness when my bits were like dehydrated, dry sandpaper!)
      https://bloominuterus.com/2018/03/01/a-new-lube-bring-on-the-sex/

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  18. I just had 2 injection of leuprolide, & due for the 3rd for endometriosis. Though I was warned about hot flash & mood swings & bone pain, I wasn’t told about hairloss. I lost 2 handfuls of hair each day. I had long thick hairs, within 2months it has reduced to a thin tail of a rat. 😖😭. Hot flashes are also disturbing. Not experienced other side effects though. I am very worried abt my hair & considering not taking the 3rd injection. They have become rough brittle & lustreless

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