Tag: endometriosis

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We’re just volunteering to be head sheep of this weird little herd in our area, with every intention of pointing to our Shepherd.

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The Lucky One

Where Dr. Seuss and Endometriosis Awareness Month meet.

Recalculating route…

Today we had our final monitoring appointment.

When we left our clinic on Thursday, doc had canceled our Saturday monitoring appointment because I was a “slow grower”.  Not much had changed between our Tuesday appointment and Thursday appointment, all 20-25 of my follicles were still mostly too small to be measured.

NOT the case today.

We’ll backtrack to this weekend for a minute.  Saturday I started feeling a bit “uncomfortable”.  That was to be expected.  Sunday afternoon and evening, “a little uncomfortable” was now “ok this sucks.”  Again, to be expected.  But I don’t have to like it.  Sunday evening/night, I was just one big ball of grump and tired.  My gut hurt all over.  It hurt to touch (I’m pretty bruised up at this point from all the shots), it hurt to move, it hurt to go over bumps in the road, and I drive a Wrangler.  No bueno.

At today’s appointment, Doc asks how I’m feeling and how this weekend was for me.
Uncomfortable.
Well, he says, lets take a look!

As soon as he flips the ultrasound on and gets to the appropriate neighborhood, Nurse says:

WOW.  That’s a TON!  I’m going to sit down, we’re gonna be in here a while.

They were huge.  The ovaries.  The follicles.  And there were so.many.of.them.  As he measured, I started counting on my fingers.

28.

We thought my number had dropped a little between Tuesday and Thursday, but NOPE.  The little slow pokes caught up, plus a bonus one!  This whole exam was extremely uncomfortable.  I was glad when it was over.  For a minute.

Doc looked over all the information he’d just rattled out to my nurse and took a deep breath.

From the beginning, our biggest concern was ovarian hyper stimulation syndrome.  We tried really hard.  But you’re there, and its happening.

Well, crap.  ok.

Rabbit trail:
OHSS, as defined by the MayoClinic:
Ovarian hyper stimulation syndrome may occur after using injectable hormone medications during in vitro fertilization (IVF), a treatment for infertility. Injectable fertility medications stimulate the development of eggs in the ovaries, but it can be difficult to tell exactly how much medication you might need.
Too much of the hormone in your system can lead to ovarian hyper stimulation syndrome (OHSS), where your ovaries become swollen and painful. A small number of women may develop severe OHSS, which can cause rapid weight gain, abdominal pain, vomiting and shortness of breath.

The more you know, folks.
He continues to tell me that my trigger shot tonight will likely make it worse, and that he wants me on additional meds to help control the effects of OHSS.  He’s not comfortable proceeding with our current plan of a fresh transfer, 5 days after my retrieval.  He wants to freeze everything he gets, and wait a month or so until my ovaries return to a zen place and a normal human person size (they’re fist sized, folks) before he did a frozen embryo transfer (FET).

Bummer.

So, recalculating route:
Our egg retrieval is set for Wednesday morning.  I just paused from typing this paragraph so Mister could jam the largest needle that a human has ever made (I may be exaggerating) in to my bum and pump in a bunch of HCG for my trigger shot.

Wednesday, they’ll fertilize my eggs with Mister’s contribution, and for the first time ever, Mister and I will be parents.  We’ll let our sweet little blobs grow for 5 days, and the fighters that make it to Day 5 will all go in the freezer until I can get to a healthy place again.

We will be parents.  We will be responsible for lives other than our own.  We will make decisions that are best for tiny groups of cells living in petri dishes.  The responsibility started weighing on both of us today.  Its a weird place to be in, to know that we’re making all of these combinations of our DNA, these individuals.  These future babies and children and adults that we haven’t met yet, but on Wednesday they’ll be real and exist, and then on Monday we’re putting them in a freezer for at least a month for a couple, years for the others.

I’m in a weird SciFi movie.

We’re bummed about this turn of events, with the the feeling crummy and the extra stress on my body, and the added wait when we’ve already been waiting 3 years.  However, I know its the right decision.  We picked this doctor because he was of similar heart and spirit.  He’s protective of his patients, both the ones he can see in the exam room and the ones he needs a microscope to see.  He is a good steward of life, and we want to be good stewards of life, too.

Its a weird world we’re living in, and Wednesday its about to get a lot weirder.

Your eyes saw my unformed substance; in your book were written every one of them, the days that were formed for me, when as yet there was none of them.  Psalm 139:16

While this was a surprise to us, it was not a surprise to God.  He knows our children’s birthdays.

Dropping Genes and Making Babies

Ten years ago, MS high school graduates had to have 2 lab sciences under their belt in order to qualify for a 4 year university.  I think its more than that now.  I don’t know.  I’m done with that mess.  I ended up with 4 anyway, because I’m a nerd.  I took Biology I and II my freshman and sophmore year.  I broke my chemistry teacher’s heart and my mother’s heart (who is also a chemistry teacher…Sorry Mom and Mrs. Malone) when I took one year of that mess and had a strong “EW no thanks” response my junior year, and my senior year, I went back to my happy place of AP Biology.
One of the only things I remember from Biology II (sorry Coach) was a genetics unit we did where Coach had us “dropping our genes and making babies.”  Coach was so scandalous and punny.  We had different gene traits on paper slips, we’d drop our genes (ba dum ching), record the answers on our punnet square, and then end up with a randomized “baby”.

I feel like that’s what we’re doing this week.  I can’t drop my actual jeans, as I can’t get them past my hips these days, but we’re fixing to drop both of our genes off in a lab and in just over a week, we’ll be parents.  How crazy is that?  Science is so cool.  Medicine is wild.  And God is so, so big.
On Friday, after a green light from our doc, we started the twice daily hormone injections of Menopur and Follistim.  I’m taking 3 doses a day right now, but thankfully can mix two of those in one shot, so I only get stuck once in the morning and once at night.  I loath the shots, but Mister hands me a seasonal Little Debbie after every stick, and that makes me a little bit less of a grump.  I’ll start a 3rd medication later this week (an estrogen suppressant, joy!), and we’re on track to have our egg retrieval on February 3.
We’ll be going back and forth to Jackson every other day for ultrasounds, blood work, and monitoring.  Our first monitoring appointment was today.  Doc found 14 follicles on my right ovary, and 13 on my left.  One follicle houses one egg.  Math is hard sometimes (which is why me and chem didn’t jive), but that’s 27 follicles.  During IUI, I only ever had 2 follicles develop at one time, and I thought I was bloated then.  This probably explains why I feel like a blimp.  We are thrilled with that number, but also a little overwhelmed.  Of course that number will drop by the time we get to mature eggs, fertilized eggs, and embryos that continue to grow until Day 5, but we don’t know how much.  It could drop by 6-8, or it could drop by 15-20.  Either way, we’ve got a solid number to start with.

We’re really doing this and its blowing my mind.  The human body is blowing my mind.  What my body is doing is incredible, and I am super impressed with it.  I make sure to cheer on the belly button zip code every day, and apologize for the bruising.  I’m gaining 2 lbs a day.   I feel like an over inflated balloon.  I am eating ALL THE THINGS, and by 7:45 I’m yawning, by 8:00 I have crashed.  I couldn’t even hang with the girls Saturday night for an early dinner at our favorite spot.  Sorry, y’all.  But I know this (the stims) will be over in a week, and this whole cycle will have an answer by the end of February.

We are continually blessed by those who are praying for us, rallying with us, and constantly encouraging us.  After my “gangsta socks” post in early December, my mailbox was overwhelmed with ridiculous socks from some of my favorite people.  I think I have enough pairs to carry me through a full-term pregnancy, and each one reminds me specifically of the wonderful folks that sent them.

We are marveling at what God is doing now, and wait with great anticipation on what he has for us in February.

IVF – Cycle 1

Whelp, we’re doing this.

January 18 – discontinue birth control (lol)
January 22 – initial u/s, start stim protocol
January 26 – monitoring
January 28 – monitoring
January 30 – monitoring
February 3* – retrieval, 2 days bed rest.
February 8* – transfer, 3 days bed rest, begin post retrieval protocol
February 18* – beta 1

*give or take a day, subject to change, pending no OHSS

So, there’s that.
Its scheduled.  We had our teaching session today in Jackson after our initial baseline assessments.  All the tests, all the poking.  Four shots a day pre-retrieval, 1-2 shots a day post transfer.  Lots of supplements, lots of pills.
My doctor paid me the nicest compliment today:

Your uterus is boring and warrants no comment.

That’s seriously the nicest thing anyone has ever said about my uterus.  I was thrilled.  Usually I get a lot of “hmms…”, “uh-ohs”, and “yikes!”  Is now a good time to plug excision surgery?  Who am I kidding.  Its always a good time to advocate for efficient and effective treatment of endometriosis.
Educate.  Empower.  Advocate.
I wore new socks I got from my #ttcmugexchange2015 buddy, and boy did they give my doc a giggle.
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He didn’t see them until he was already in the middle of my exam.  Then he laughed so hard he had to stop what he was doing and get himself together.

You’re SO “gangsta”, Anna.

I KNOW, RIGHT?

As much as I hate the fact that I have to go to a fertility doctor to even have a chance at growing my family, I was reminded today what a rockstar team I have there.  My nurses both hugged me, gave me “real” advice (“you’re going to be emotional during all of this, because, well my God, look what it involves?  But the b**** factor of these meds is nothing like Clomid was…”), laughed with me, asked about my pups, and answered every question I had (all day… I’ve already emailed them twice since this morning).

As we’ve drawn closer and closer to appointments, and as we’ve started taking the first initial steps down the IVF road, my anxiety as skyrocketed to levels I didn’t even know I was capable.  The funny thing about my anxiety – its all somatic.  In my head, I’m totally fine.  I have NO freaking clue that I’m anxious.  But I’ll get off the phone with my clinic after scheduling and appointment or confirming a payment figure, and all of the sudden I can’t turn my head to the right, or its hard to breath, or I start to stutter, or I will talk 90 miles an hour.  After a somatic symptom pops up, I’ve learned (through some therapy) that I need to mentally recognize the fact that I am stressed, and take active measure of de-stressing, even though I don’t feel stressed.  Does that make sense?  Its been a weird couple of months.
I actually went to my GP about it after a severe stuttering episode, ready to seek a little pharmaceutical assistance.  I brag on my doctors all the time, and with good reason.  Doctors are so smart, so much smarter than me.  They know so much!  I have a fabulous team.  But they are exactly that – a team.  To get anything done, they all have to be in agreement.  My GP is not going to prescribe me anti-anxiety meds that maybe my FE has an issue with, or my OBGYN would not want me on while pregnant, or that could possible interfere with my migraine protocol my neurologist has given me. See what I mean?  Its like assembling the Avengers just to get some Zoloft.  This makes me Nick Fury, right?

SLJ

Turns out, not all of my Avengers saw eye-to-eye on this.  So yoga, the never ending grace of God, a new therapist, and a new coloring book it is.

Next week, Mister and I will celebrate our 4 year wedding anniversary.  Its a weird fact that we’ve been on this trying-to-conceive journey for 75% of that time.  My substitute hairstylist (long term stylist is on maternity leave, ironically) asked me last week if we had anything special planned for our anniversary, and before thinking about it too hard, I said,very excitedly:

Yes!  We’re doing IVF!

She paused, a little shocked I think, but to her credit her response was perfect.  Wow, congratulations, that’s huge, its a drag you have to do this but how exciting that you are able to, y’all must have been planning this for a while, etc.  PERFECT.  Stylists are like a special hybrid of therapists and sorority recruitment.  How many problems to they hear in a day?  They are NEVER short on small talk, they probably have dirt on half the town, all while balancing ridiculous expectations of “get the dead ends off” and “JUST a trim…”  I’m on a rabbit trail, I know, but clearly I’m comfortable in my salon, and clearly this woman is no stranger to weird answers to questions.
But yes.  IVF is our big anniversary present.  Its suppose to be the flowers and fruit anniversary, but we’re being modernly liberal about it, and going for “be fruitful and multiply.”

Through all of this, I’ve been shown time and time again the beautiful relationship between God’s sovereignty and modern medicine/science.  Its is absolutely ridiculous to me when we try to separate the two, only accepting one or the other.  God has revealed Himself so much to me through research and finding wonderful physicians and healers who work miracles under a microscope.  Another thing we’ve learned is how common this problem is, how many other families are hurting.  After some discussion with one of our pastors, Mister and I will be leading a co-ed “Fertility Care” group at our church.  This is meant to be a place for families struggling growing their family (infertility, secondary infertility, infant loss, miscarriage, etc.) to come and find peace and understanding in Christ.  Our goal this entire journey has been to bring glory to The Almighty, whatever His answers may be.  By investing in other families and shedding the shame and stigma that comes with infertility, particularly in the deep south, I think we can bring comfort and encouragement to others.  If you’re in South Mississippi and interested in a biblically based support group, shoot me an email at southernfertility@gmail.com; let’s talk.

We covet your prayers as we continue this winter.  Its going to be a surreal journey, one I’m looking forward to chronicling.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the Church and in Christ Jesus, throughout all generations, for ever and ever!  Amen!
Ephesians 3:20, 21

Feelings are Hard Sometimes

Its been a while since I’ve posted an update to our story.

Honestly, there just hasn’t been that much to tell, I feel like.  We’ve waited a lot.  Got some “eh” news, made some decisions.  Waited some more, crunched some numbers.  Twiddled our thumbs.  Now we’re waiting on *one* more puzzle piece, and we’ll have a solid timeline.

Edge of your seat stuff, let me tell you.

So, here’s an update:

Surgery + Endometriosis

Its been almost 6 months since my excision surgery.  I can say with confidence now that this surgery in ATL has been the best medical decision I have made in my adult life thus far.  I am a new woman.  I have almost* no pain.  I cannot tell you what cycle day I am on based on where the pain is focused.  I actually have to check my app on my phone.  This is my new normal, and its pretty amazing.  I will stand on any platform given and sing the praises of my surgeon and his team at the Center for Endometriosis Care.  Be educated.  Be informed.  Do not settle.  Praise be to God, I am still in remission.
*Last weekend, I had a cyst start acting wrong and rupture.  I hurt the most I’ve hurt since surgery, and even then it was only registering as “moderate” on my personal pain scale.  Enough to annoy me, and occasionally channel my focus and attention, but not enough for me to miss work.  After running a fever around day 3 of “moderate”, I decided to check in with my doc here in Hattiesburg.  My clinic is set up with MyChart, so I shot a quick email to my nurse.  I had an ultrasound booked the next day, just in case.  I’ve also had a terrible case of the Fall Snots, so it was tough to know if this fever was coming from the Snots or an infection south of the belly button.
Everything is fine, I resolved it on my own, fever is gone, and hopefully I will trade in this gravely baritone for my original alto voice sooner rather than later.  Based on my other cyst experiences, this was a walk in the park.

Fertility + Endometriosis

We decided August was our last “one more month” of trying to conceive without medical intervention.  I’ve mentioned in an earlier post that we put our fertility worries on a shelf, put a date on it, and we weren’t pulling it off the shelf until that date.  August was that date.  I had some Day 21 blood work done during that cycle, and it came back worse than abysmal.  I’m pretty sure Mister has more progesterone pumping through his system than I do.  This computer probably generates more progesterone than I do.  Biochemically, I’m messed up.  Endometriosis and the abnormal growths really get your hormones all wonky.  There’s a super scientific way to explain it, but that’s the gist.  After 15 years of my body knowing nothing other than wonky, it seems as though that’s how I’m programmed now.  You wouldn’t put unleaded fuel in a diesel engine and expect it to run right, and we’re finding the same is true with me.  On my own, my body won’t do right, reproductively.  I’m a diesel, and diesel is expensive.

My doc told me some tough truths.

You’ll likely never conceive on your own.  However, you are an excellent candidate for IVF.  Your hormones are off and don’t look like they’ll ever be right without intervention, but we know you respond incredible well to IVF medications.  IVF was invented to help families like yours.

This was echoed by our FE.  This was a major bummer and comforting all at the same time.  Feelings are hard sometimes.

I had my sad day and a lovely glass of wine.  The next day, I called my FE and made plans to move on.

IVF

Its been almost a year since we last saw our FE.  Almost a year since the Very Worst October Ever.  I took a little trip to Jackson to see my FE earlier this month.  Since its been a while since he’s been around my block, I took ALL the data with me.  Blood work charts from the last two years, daily monitoring data for 2015 so far, surgery report, path report, pictures, diagrams, all the things.  I wanted to make sure he was good and familiar with the neighborhood, since my surgeon has done a few renovations since my last visit.

I conference-called Mister in to the meeting (we’re millennials, we do that now), and we talked about our options.  We could do IUI again, but our odds of that working are about like they were this time last year:  slim.  Real slim.  Slimmer than Mister (he’s a bean pole).  We’ve ridden the IUI train, punched our ticket.  Its time to move on.
After adjusting my protocol based on the fact that I am still in remission (woohoo!) and my AMH came back pretty super (woohoo! squared), we are looking at starting IVF this winter.
Originally, we wanted this fall.  A multitude of reasons pushed this back a bit.  I never thought I’d say this, but we are planning our IVF cycle around football.  This likely seems absolutely insane to most people, but right now, our lives revolve around NCAA and MHSAA football.  I would throw NFL in that mix, but have you seen the Saints this year??  The nation has enough Sad Saints pictures for the rest of the century, no one is buying those now.  A December – January cycle is looking like our best bet.  We are trying to find a few loopholes in our good ole MS insurance plans (political plug:  make sure your representatives know that women’s health is kind of a big deal and MS should be better at it and stuff), and if loopholes big enough can be triggered, we’ll be waiting until January when our new calendar year starts.  If those loopholes are going to be as helpful as another negative pregnancy test, we’ll go ahead and start our cycle in December.
Once we have dates set, I’ll have another post.  I will likely ask for incredibly specific prayers at specific times, and post my protocol to see if any of you gals that have been around this block have any tricks to help get through a stim cycle with your sanity intact.  We’ve settled on a host of IVF-ethics issues that we hoped we’d never have to face in real life, but now we’re staring down the barrel of that gun.  We are following the convictions that God has laid on our heart.  They likely aren’t the most popular in the IVF world, nor the most popular in your typical “Conservative” world, but God bless America, they are our choices for our family and we have the freedom to make them ourselves.  More on our specific convictions and IVF FAQs in a separate post.

We have been very open about our struggle and our choices over the last year.  That has opened us up to both encouragement like we never could have imagined, and at the same time, criticism and thoughtless comments.  Mostly encouragement.  We choose to focus on the encouragement, and chalk the thoughtlessness up to a lack of education.  Folks can’t help if they’re ignorant, right?  Bless their hearts.  Through this sharing and openness, it has come to light that other friends of ours are struggling with infertility.  Maybe not like us, everyone’s journey is different.  It continues to reinforce the truth that this is not a rare issue.  So many women are fighting this battle.  So many families are struggling with feeling broken and frustrated.  When I connect with someone over infertility, I immediately feel excited and bummed out.  Again, feelings are hard sometimes.  I’m excited that I have another soul to share this with that gets it.  Someone who can relate.  At the same time, I wouldn’t wish this journey on anyone.  Its unpleasant and hard and I hate it and if I had the choice I wouldn’t be on this road.  No one signs up for this willingly.

We are well aware that God does not “need” IVF to help Him start our family.  God also does not “need” chemotherapy, defibrillators, pharmaceuticals, or any form of medical practice to accomplish healing and His Will.  Sometimes, that is just the path He has for us to further His Glory.  Praise Him for the sense He gave humans to practice all kinds medicine.

We know that we are surrounded by a great host of witnesses.  So many of you have let me know that you are praying fervently for us, and we appreciate that more than we will ever be able to convey.  We ask you to continue these prayers.  The turn of the year is about to get wild.  Feelings are hard sometimes.  May God be glorified in the journey.