The Lupron Diaries: Side Effects that Suck

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Today is my third shot; halfway there! And while this hasn’t been nearly the horror story that I’d read about, I don’t want to give you the impression that the entire experience is sunshine and rainbows, because it’s certainly not.  Here’s the rundown of the side effects I’ve dealt with  over the last two months.  I’ll focus in on each one in future posts to discuss how I’m dealing with them.

  1. Joint Pain: for the first few days after the shot, my hips and knees hurt pretty badly.  I first noticed it when I was in the bed and Shelli (my kitty) hopped up on my hip to curl up and sleep.  She does this every night (which makes sleeping an adventure since she’s balanced so precariously…I can’t tell you how many times I’ve inadvertently launched her across the room), so it’s not all that unusual, but I saw STARS the first night.  It typically goes away after about three days, so I just make use of the ibuprofen for those days and wait it out.
  2. HOT FLASHES:  man, that first flash was ROUGH.  I was on a conference call that was particularly aggravating, and I felt myself go nuclear.  I got so hot that I started to feel cold, which actually wasn’t all that unpleasant, so I felt pretty successful for having made it through.  This side effect was one of my greater anxieties, because I’m already hot-natured.  I will say, though, that the add-back medication has helped immensely.  I think I’ve only had a handful of genuine “flashes” over the last two months, and they’ve been bearable.
  3. Weepiness:  I won’t call this “depression.”  I’ve been depressed before, and this is nowhere near that bad.  I’d liken it to typical PMS-type sadness; news stories make me want to cry (especially ones about animals) and I’ve found myself reading too many sad stories for the catharsis of “crying it out.”  While it sucks, it’s definitely not that soul-crushing type of hopelessness that comes along with clinical depression.
  4. Irritability/Grumpiness: I’m already a pretty grumpy person, so I’m not sure how much different I am, but I can definitely feel myself get frustrated more easily and there’s been a time or two where I’ve said something snippy that I may not have said if I hadn’t been on Lupron.  Thankfully, for the most part my friends have found my grumpiness to be entertaining, so I don’t think anyone is ready to cut me out of their life just yet.   I’ve not experienced the “Lupron Rage” that I read about; I’ll take some minor irritability over rage any day.
  5. Hungriness:  Holy crap this has sucked.  I went from not wanting to eat anything for two months after surgery to wanting to eat ALL. THE. DAMN.TIME.  I can see how people gain excessive amounts of weight if they’re not paying attention to what’s going on with their body.  I’ve had to make a concerted effort not to eat everything I see and to offset the overeating I do with a healthy amount of exercise.  I’ve lost about four pounds over the last two months; I’d like it to be more, but I’m not going to beat myself up too much about it.
  6. Clumsiness/Lightheadedness: I put these together since most of my clumsiness is a result of feeling a bit lightheaded when I stand up.  There was one incident at work where I barely made it into the bathroom stall before falling down and I ended up cracking my head against the side of the stall when I sat down.  That was a little frightening.  In fact, this one has probably been the most frightening of the side effects, since the possibility of my falling down in front of people is high, and making a spectacle of myself is one of my phobias.  Joey has mentioned a couple of times that he’s a little nervous about my falling off Mt. Mitchell. I just told him that I’d tie myself to him so we’d both go together if I fall.  On a positive note, though, this side effect has improved over the last two months; I haven’t had it nearly as bad the second month as I did the first.

That’s it, guys.  While this clearly isn’t a walk in the park (more like a “stagger through the park while it’s 100 degrees”), it absolutely hasn’t been the horrific experience I read about online.  I know that there are women out there who’ve had a genuinely terrible time with Lupron; I’m not trying to diminish that.  However, if you’re out there and your doctor recommends it as a treatment for your endometriosis/infertility, I don’t want you to feel hopeless and terrified.  It’s possible not only to survive, but THRIVE while you’re on this drug.

The Lupron Diaries: Some Days Are Failures

In the interest of full disclosure, I want you to know that, although there are days that are six miles walks with hiking boots on:

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There are also days where I don’t leave the recliner, eat an entire box of Hot Tamales, skip my planned three mile workout, and then read sad things until I cry myself to sleep.

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Some days are “Lupron Fails,” as Joey and I call them.  But it doesn’t happen every day.  It doesn’t even happen most days.  In fact, most days are okay, and some are even great!
 

But failures happen.

Yesterday was a failure, but today will be better.
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The Lupron Diaries: The First Shot

I had my first shot of Lupron Depot on Thursday, February 18th, at noon.  High noon.  Because I’m afraid of needles (and because I’m overdramatic), I treated the appointment like I was being marched down the green mile to the electric chair.  Honestly, if it had been anyone else, I would’ve laughed at them for being so ridiculous.  I mean, seriously?  I’d survived surgery.  A shot in the butt would be nothing.

I would’ve laughed until I saw the size of the needle.

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Guys, it was EVERY BIT of two inches long; even my husband, who is quick to (gently) pull me back to reality when I overexaggerate, admitted that it was one of the longest needles he’d ever seen.  Ginger, my nurse, made the mistake of leaving the box open when she brought the shot into the room.  “Is that entire needle going in me??!!”  Ginger was fantastic, though; she was the perfect combination of supportive and dismissive. “Yep, but it’s no big deal…you’ll barely even feel it; I promise!”

She asked me if I had any questions or concerns about the drug, and I was pretty frank about how nervous I was and how many terrible accounts I’d read online.  She echoed Joey’s comments about folks with positive experiences not generally taking to the internet about them, and she gave me the rundown of what to expect (the most common side effects, i.e., hot flashes and moodiness) and encouraged me to email them or call them if I thought I was experiencing anything out of the ordinary.  She also told me that the menopause-type symptoms probably wouldn’t start for a couple of weeks, but that I may have increased endo symptoms during that time, because your estrogen levels surge before they go away.  Thankfully, she’d allayed all of my fears, but (much to my chagrin), that meant it was time for the jab.

She had me lay down on the table since I told her I was scared of needles (and the fact that I looked like I was about to be given a lethal injection).  “We’ll go into your right side this time…we’ve got to alternate, so next month will be the left.”  Joey came back with me and held my hand, and I braced myself for the world’s largest shot in the ass.

And then it was done.  Just like that.  I can honestly say that I barely felt it at all.  Ginger became my new best friend and the best nurse in the entire world.  After a high-five and a hug, she sent me on my way, told me she was in on Thursdays and to plan my next appointment accordingly so I’d get to see her again.  She also reminded me to make sure I was diligent in taking the add-back medication and not to worry, that everything would be fine and it was going to be worth it to kick this endometriosis.

I had a sore butt cheek for a few days, and believe me, I milked that for all it was worth.  Joey already waits on me hand and foot, but I shuffled around and looked sad and pointed at my cheek whenever I asked for something.  I think it stopped being cute the second day, but he humored me until I really couldn’t justify it anymore because I felt fine.

So then began the “two week wait.”  And not the “fun” two week wait (the one where you wait to test to see if you’re pregnant). Instead, it was the countdown to becoming an overheated ball of emotions that falls down and forgets things.

I felt like a time bomb.

The Lupron Diaries: Lupron Goals

Needless to say, once I made peace with the litany of terrible side effects I’d read about (even if half of them were exaggerated), I realized that I was going to need to adjust my weight loss goal to be a bit more realistic.  I’d only read one account of someone losing weight while on Lupron, so although I refuse to let myself believe that weight loss is impossible during treatment, I accepted the fact that I probably wasn’t going to be looking at completing my weight loss journey (to the tune of 50-60 more pounds) even if I was extremely diligent with food and fitness.  That was a tough pill to swallow, folks.  I’d already mentally prepared myself to bust ass and get myself to my goal weight come hell or high water, and now I was looking at having to dial that back (and maybe even accept that losing another 10 or 20 pounds would be a struggle).  After much cussing and crying, I re-evaluated and created a new set of “Lupron Goals.”

I decided that I wouldn’t express any weight-related goals in pounds. I know what I have left to lose, and I know that I want to lose as much of it as I can before we were to (potentially) get pregnant.  But I also know that giving myself a number at this point would be self-defeating if the Lupron keeps me from reaching that number as quickly as I want.  As a result, my goals (both weight-related and non) are not number-related accomplishments.

In no particular order:

  • RUN a 5K in its entirety.  I’ve got three scheduled over the next few months (4/23, 5/14, and 6/11).  I’m doubtful that I’ll be running the whole 5K on 4/23, but I do plan to run more than I walk. I’ve tried to become a runner so many times over the last ten years or so, but in the last year, I’ve actually committed and started seeing progress.
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  • Get paid to write.  I’ve wanted to do this for years, and now is the time to start making that happen.
  • Hike Mount Mitchell.  This is the biggie for me.  Joey and I love to hike and camp, and Mount Mitchell is the highest peak east of the Mississippi River. For whatever reason, I feel like making it to the top will be my own way of saying that I kicked Lupron’s ass.  We’re tentatively scheduling the trip for my birthday weekend, which will be a week or so after my final shot.
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  • Not be an butthole to everyone.  Lupron moodiness is a real thing (I’ve learned since the first shot).
  • Not eat everything in sight all of the time.  Lupron hunger is also a real thing (more on all of this in a future post).

So, that’s it. No “be at a current weight by the end of the summer.”  No “stay under 100 grams of carbs every day.”  No “work out 5 days a week.”  I know what’s required to get across the finish line at a race and to the top of Mount Mitchell.  And every step I take toward that is a giant middle finger to the face of this drug that’s defeated so many women.

The Lupron Diaries: What is Lupron and Why Are You Freaking Out About It?

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Yeah, I’d never heard of it either.  I’d never heard of lots of things before we started trying to have a kid.  All of the sudden, my vernacular is filled with acronyms that look absolutely ridiculous to the outsider: AF, BFP, BFN, DTD, BD, DPO, LH, HCG, CM, IB, TWW…ugh, the list goes on.  I swore I’d never be one of those people who wrote like that.  But all of the sudden, you’re on every fertility message board and it’s like your brain just oozes right out of your ears and all of the sudden you’re drooling and squinting to try to see if the result line on the ovulation test is as dark as the control line and your hand is covered in pee.

I digress.

Lupron Depot is a drug that suppresses the production of sex hormones (read: estrogen) and is used for a variety of things, including endometriosis, fibroids, and even prostate cancer for men.  It’s injected, either monthly (3.75mg) or in a larger, 3 month dose (11.25 mg).  If it works, it reduces endometriosis in the body and helps slow/prevent production of new lesions.

Because it suppresses the production of sex hormones, it causes the body to mimic the process of menopause, which is about as fun as getting a shot in your butt every month that puts you into menopause.  There’s an add-back medication (norethindrone acetate 5mg)  that helps with some of the symptoms, but even the drug’s own website is pretty frank that Lupron treatment isn’t a walk in the park.

Side effects include acne, growing a freaking mustache, dizziness, hot flashes, nausea, diarrhea OR constipation (I guess I’m never going to poop right ever again), stomach pain, scaly skin, joint/muscle pain, bone thinning, depression, insomnia, forgetfulness/confusion, and decrease in libido (yay for Joey, eh?) (Source)

So, it’s clearly not a joyful experience.  However, what really freaked me out was the repeated accounts of massive weight gain and fits of rage.  Apparently there’s even a petition to Congress for further investigation to be done into Lupron’s side effects.  It’s alleged to have caused permanent damage and even deaths.  I certainly don’t want to be crippled by joint pain and thin bones for the rest of my life, and I can assure you that dying isn’t on my agenda either. So why am I taking this drug?

It’s interesting what you’ll do for the sake of having children.

My Endo Story: The Lupron Diaries

Catch up with Part 1, Part 2, and Part 3.

I’d made peace with the fact that we were going to have to put off trying for a kid for six months; in fact, I’d decided that I was going to make the most of the delay and complete my weight loss journey.  It would take some serious work, but surely I could get fifty pounds or so off in six months.  That way, I’d be in the best possible shape to carry a child when (hopefully) it happened, so I wouldn’t feel like I was doing nothing at all during the delay.

Then, I began reading accounts of women who’d taken Lupron.  And they scared the hell out of me.  Massive weight gain, crippling depression, dizziness, clumsiness, joint pain, forgetfulness, diminished mental capacity, bone thinning…no one seemed to have had a good experience on the drug, and more often than not, their accounts were something out of a horror movie; it seemed that no one made it all the way through the treatment before quitting.

Joey asked me over and over if I wanted to go through with it, and he assured me that he was okay if I didn’t…that he was more concerned about my well-being than the possibility of a hypothetical future child.  Conversely, though, he reminded me that it’s rare for someone to take to the internet with an account of a positive experience with a drug, and that I shouldn’t make a decision based solely on the mostly one-sided world of the interwebs.  I’m very thankful to have a husband who’s the voice of reason when I need it most.

Despite the fear, I knew it was our last non-invasive chance for a child, and at this point, we’re not willing to take more invasive measures, so there was no question that I was going to go through with the shots.  Weight gain, though?  I’d lost 44 pounds over the last 1.5 years, and I was scared to death of gaining it back.  Bone thinning?  That doesn’t go away or get better.  Forgetfulness?  I have an insanely stressful job that requires every bit of my brain function most of the time. How was I going to make it through this?

Between the time the Lupron arrived at my doctor’s office on Tuesday and my appointment for my first injection on Thursday, I agonized over my decision to go through with it.  All of these other women suffered, seemingly horribly, and here I was willingly walking into the fiery furnace.  But I also did something else, something extremely uncharacteristic of me: I decided that I was not just going to survive this Lupron treatment; I was going to thrive during it, and I was going to share my experience.  I knew that there would be negative side effects, but I wanted to prove that they were endurable and could be mitigated (maybe even overcome) with focus and diligence (and lots of prayer).  I wanted some poor, scared, woman, searching for answers about her upcoming treatment, to find my story and perhaps some hope that she wasn’t going to end up fat, senile, and riddled with broken bones.

So we got some calcium chews and threw out the junk food, and I registered for a 5K on 4/23 and committed to myself that I would run at least part of it.

And I tried not to think about the fact that I was going to be jabbed in the ass with a giant needle in a couple of days.

My Endo Story: Part 3

Catch up with Part 1 and Part 2.

“It’s basically a disaster area back there.”  My doctor’s words were shocking.  One of the things I love most about her is that she’s brutally honest (albeit positive and optimistic, so it’s an interesting juxtaposition).  “Your uterus and bladder are glued down to your other organs.  Your right Fallopian tube is glued to your uterus and ovary.  You’re probably going to need another surgery down the road, but hopefully we can sneak a kid in there beforehand.”  She showed me the pictures (which were gross) and gave me a copy to take home (how about scrapbooking that, crafty moms).

Her suggestion was that we put off trying for six months, while I undergo treatment with Lupron to stop my ovaries from producing estrogen and hopefully dissolve the endometriosis.  It would be a monthly injection that would basically force my body into menopause.  Menopause??  I’m already hot-natured and moody, and now I’m going to have something shot into my butt that’ll make it even worse?  She said that, once we were done with that, we’d hit the fertility meds hard again and be a little more aggressive in our approach (I’m still not quite sure what that’ll entail).  And if that didn’t work, then it would be off to Atlanta for another surgery.  Or IVF.  Neither of those prospects sounded desirable.

Six months of nothing?  That seems like a lot of time lost, time spent waiting and not even being able to try.  I agreed to the Lupron treatment, but I was still reeling from being told that my insides are a disaster and it wasn’t just going to be a matter of waiting to heal and then starting to pop out babies.  I also mentioned the abdominal pain and cramping and was told that it was a normal part of the recovery process and was encouraged to take some fiber and make sure I was pooping regularly (really?  You think I was intentionally deciding to turn my GI tract into a war zone?).

The GI pain finally abated, but was quickly replaced by feeling like I was pissing razor blades.  And after a month of misdiagnoses and setbacks, it turned out that I’d probably been nursing a low-grade UTI for eight weeks or so, and it took two full rounds of antibiotics to clear up.  I finally started to feel human again.  But still, a recovery that was supposed to take a couple of weeks ended up knocking me flat on my arse for over two months.  I felt pathetic; why was I so much weaker than everyone else I knew who’d had laparoscopic surgery?  Why were they back at work in three days, doing cartwheels down the hall (apparently) while I was still carrying a pillow everywhere and walking as if I was traversing broken glass?

And now, here I was, facing six months of injections of a drug I knew nothing about, but knew it was our last hope of a non-invasive way to be able to have a child.  There was no question that I would go through it, but what on EARTH was going to happen to me during the process?

–to be continued–

 

My Endo Story: Part 2

So, I last left you as just as surgery was rapidly approaching and our last two months of trying being to no avail.  We must’ve had at least twenty people praying specifically that I wouldn’t have to go through this surgery, but sometimes God doesn’t work that way. Honestly, I didn’t get my hopes up.  I’ve seen people miraculously delivered from things, and I’ve seen people have to suffer through, so I knew it could go either way.  I’m also (painfully) realistic, so I wasn’t about to get myself hopeful about a possibility that was so unlikely.

I’d never had a surgical procedure before, other than having my wisdom teeth out at seventeen.  I was absolutely terrified, so for two months, I pushed all thought of it out of my mind.  And it worked, for the most part.  However, I specifically remember as the clock struck midnight on New Year’s Day, being hit with a great sense of uncertainty.  I would be having this surgery in six short days; what would 2016 hold for us?  Would it be the year that we finally got to have a child?  I turn 35 this year.  Was it already be too late?

The next five days were a blur.  I remember the doctor calling me a day or two beforehand and asking me if I had any questions.  I told her I was training for a 5K on 2/13 and asked how long it would be until I could start running again. She told me that I could start back after a week as long as I was feeling up to it. Holy crap, I thought to myself…This must not be that big of a deal, then.  I remember the night before the surgery having dinner with Joey’s “second mom.”  We talked for a long time; she encouraged me and reminded me that God was still in control and that she would see me the next day after I got back home.  I also remember messaging with a friend who’d had the same surgery; she gave me the run-down on exactly how hers went and told me that she’d gotten pregnant three months after.  It put my mind at ease that the procedure wouldn’t be too bad.

And truthfully, it wasn’t.  Getting the IV inserted was the worst part; I have small veins, and the anesthesiologist had to go through the side of my wrist, which hurt like hell (on a funny note, when the post-op nurse took it out before sending me home, she looked at it and said “wow, this is a big-ass needle!”  Joey asked her if that was the professional term for it).  Incidentally, here we are eleven weeks later and I still have a scar from that needle.  But the rest of it was no big deal.  They started the surgery around 7:30 in the morning and I was home by 11:30.  Just three small incisions…one in my navel and one on either side of my lower abdomen.  No stitches, just a little surgical glue.  I had Joey stop by Starbucks on the way home so I could get a white chocolate mocha and a scone.  I thought this would be a breeze…a few days of discomfort, and back to walking/running in a week, and pregnant by spring!

It was not a breeze.  First, the doctor told Joey that the endometrioma was almost as big as her fist…much larger than the ultrasounds showed. She said that she had no idea how I wasn’t having pain from it (I’d never complained of anything) and that she suspected that pains that I wrote off as GI discomfort/mid-cycle cramps were probably from the cyst.  She also mentioned that she thought she saw some endometriosis on the back side of my uterus, and that it may end up having to result in another surgery with a specialist (in Atlanta) at some point.  However, she said that we’d probably let me heal for a while and then start trying again for a few months and see what happened after that.  She told us to call in two weeks and schedule a post-op follow up where we’d discuss strategy in greater detail after she’d had more time to go over the pictures.

I was not running in a week.  In fact, I wasn’t even walking.  I ended up “backed up” three different times from the pain meds (I actually just quit taking them after a few days).  On a related note; if you know anyone addicted to Oxy, PLEASE let me be their interventionist.  I have some stern words about choosing a life where you opt to never poop again.

I did manage to walk half a mile about ten days after surgery, and did a full mile a couple of days later.  But they were excruciating, and I was exhausted afterward; I was so discouraged.  The doc told me I could RUN after a week.  Why in the hell was I still feeling so terrible??  I had gut-wrenching abdominal cramps and gas pains so bad that I almost fainted more than once. I was afraid to eat, because eating would make me need to poop, and my GI system seemed to be vacillating between refusing to move food through and forcibly expelling everything I’d even THOUGHT about eating for the last five years.

Still, through all of this terrible-ness, I kept telling myself that it would all be okay.  As soon as I recovered, we’d start trying for a kid again and it would be easy peasy.  Maybe I could even get pregnant and have the baby before the end of the year, and then it would all be free because we’d already met our out-of-pocket maximum for the calendar year with our health insurance!

Boy, was I wrong.

-to be continued-

 

 

My Endo Story: Part 1

Well, it’s been another long season of silence on the ol’ blog.  I look back at years past and regret that I haven’t kept up with things more than I have, but I also struggle with feeling like I’m navel-gazing too much and not wanting to annoy people with constant talk about myself.

I’m breaking that silence, though, and am committing to regular blogging, at least for the rest of the year, to chronicle a very important journey and hopefully help some other women along the way.

Two years ago (this coming May), Joey and I decided that we were going to start trying for a kid.  I’d never had even a hint of a maternal instinct, and for almost twelve years, we’d been perfectly happy being childless and parents only to our kitty, Shelli.  In fact, we weren’t even sure if we were ever going to want kids at all.  I dealt with the “when are you going to have babies?? Don’t you even want children??” questions with an eye roll and a proper sense of sarcasm, but didn’t think of it much otherwise.

Until one of my closest friends had her first son.  And it hit me like a ton of bricks:  I wanted a child.  Joey and I spent a few months talking it over and decided that the timing was right to start trying.

I thought it would be pretty simple (which, in retrospect, was stupid since I already knew I had PCOS and other health factors working against me), but month after month after month went by with no luck.  During the process, I worked on losing weight and getting my health in order, and I tried to keep a positive attitude despite feeling like I was constantly taking my temperature or peeing on something either to tell me if I was ovulating (usually not) or if I was pregnant (definitely not).  For the record, if there’s ever an Olympic category for peeing in a tiny cup, I’m taking home the Gold.

By the end of the year (2014), I’d gone to see my OBGYN and she suggested that we try a round of fertility meds.  I thought that would be it; everyone I’d talked to who had done them ended up pregnant after one or two rounds, so I was gearing myself up for this to work and to have a child by the end of 2015.

Except it didn’t work.  For those of you unfamiliar with fertility drugs, they usually ask you to come in during the middle of your cycle (a few days after you’ve finished the round of meds) so they can do an ultrasound and see if you have an egg that’s ready to go.  And I did not.  I did, however, have a cyst that was larger than the usual PCOS-type cysts. After another two or three ultrasounds (that’s a lot of getting a giant wand shoved up your wazoo, FYI), they determined that it was an endometrioma and wasn’t going to go away.  In June of 2015, my doctor recommended that I have surgery to get it removed, but I was reticent to do something that invasive when I “wasn’t having any problems” (or so I thought).  She was amenable to doing another couple of rounds of the fertility meds, just to see if we could “get lucky” (hehehe), but it was all for naught.

After reading scores of natural-living blogs, I tried what seemed like everything to “cure” myself of this endometrioma: diet changes, supplements, essential oils…nothing worked.  And I got pissed. I ready story after story of some “natural mama” who’d had problems conceiving, and after some coconut oil, castor oil packs, and a few essential oil blends, started popping kids out like a factory.  And here was me, oily, unsuccessful, and irritated, with this ambivalent cyst that seemed to be mocking me from inside my body.

I gave in to the idea of surgery in November of 2015, and scheduled it for the following January 6th.  I felt like that would allow me two more months to try and maybe get lucky and not have to get cut on.  I prayed fervently, and felt hopeful that God would rescue me and keep me from the knife.  I mean, we all read about miracles, right?  Surely He would make me one of those stories, and I’d be able to help other infertile ladies with an account of being rescued just in time.

No dice.

–to be continued–