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–