The Madness Between

April 24th, 2016 marked the first day of National Infertility Awareness Week and my social medias pages have been flooded with personal stories, quotes, resources, and statistics. Before I entered the world of infertility, I knew very little about it and to be honest – didn’t really care to know because it didn’t affect me personally.  Now, that world defines a major part of my life.  It broke me.  It crushed me.  It challenged me beyond my physical, emotional, and mental limitations.  And it also gave me some of my greatest gifts.

Yet, some of the people closest to me do not know an ounce of what I endured.

There is a stigma surrounding infertility that you must remain quiet and private about it.  It’s not dinner conversation – you don’t speak of it over coffee or during a play date with friends.  You whisper about someone going through it and don’t dare to ask how they’re doing.  It’s one of the most confusing stigmas I’ve ever encountered.  Infertility is a disease.  It’s a medical condition that requires doctors, second-third-fourth opinions, procedures, incredibly difficult decisions, horrific costs, constant battles with insurance companies, and the need for an enormously large support system to get you through it.  Yet – so many people don’t even tell their own family that they’re drowning in it.  Infertility is one of the loneliest, most isolating, self-defeating clubs I’ve ever joined and this world needs to be more aware of it’s conditions and the people who are suffering from it.

Okay – sorry for the quick rant.

When Mac and I were dating – I wound up pregnant.  I was on birth control at the time so this came as the ultimate surprise.  I was living in a small studio in Chicago working full-time at a commercial real estate firm and making just enough money to cover my rent.   When we found out we were expecting – we hurried up, sold all of my furniture, found someone to rent my studio, and moved into Mac’s two bedroom condo.  We told our family and friends right away because we were panicked by how quickly our carefree lives were going to changed.  And we were blessed with beautiful naivety; a positive pregnancy test = a baby, right?  Fast forward to my 10 week ultrasound and a lifeless baby, we were crushed.  Our worlds were flipped upside down, then right-side up, then upside down again.  I had a D&C (a procedure where a doctor has to manually remove the pregnancy) – and my doctor reassured me that miscarriages happen to 1 in 4 pregnancies and that we just fell on bad luck / abnormal chromosomes.  We turned down the opportunity to do genetic testing on our baby because at the time it didn’t seem relevant.  We weren’t actively trying to conceive and I was convinced that the problem wasn’t me.  Hell – I had conceived while on birth control.  Clearly I was a fertile-mertle.  But that loss nearly tore my relationship with Mac apart.  As most men typically do in the case of pregnancy loss – he moved on quicker than I did.  I didn’t know how to immediately switch back to my prior self – bartending on weekends, going to the beach with friends, living the easy life.  25 years old and living in one of the best cities in the world – I wasn’t planning on being a mom.  But the second I saw my baby – I became one.  From that day on, I longed for my next chance to hold a baby in my belly.

A few years later, Mac and I were married – living in that same condo – and were having our first ‘when should we start trying’ conversation.  Based on our first experience, we 100% believed that we could just stop using birth control, have sex, and we would be painting a nursery the next month.  So we decided to wait a few months – enjoy newlywed life – and try at the end of summer.  By August (after a very intoxicated weekend in Vegas), I was pregnant.  I held my breath at every doctor appointment through the first trimester and especially during the 30 seconds it takes for the doctor to locate the heart beat – but thanks be to God – we had the next closest thing to a text book pregnancy.  No scares, no risks.. just a beautiful, healthy baby girl.  I had a c-section with Riley because my little bff did.not.want.to.leave.my.body.. but I healed quickly with no lingering issues.  I loved every second of being pregnant and almost instantly was craving the chance to do it all over again.

When Riley turned 1 years old – Mac and I decided to start trying for #2.  But this time – my pregnancy tests were coming back negative.  I started using ovulation kits, tracking my cycle on pregnancy apps, and nothing was happening.  6 months into the process – I wound up in the ER with excruciating stomach pain and ended up in emergency surgery to stop internal bleeding from several erupted ovarian cysts.   The surgery was so messy and involved that the operating surgeon said (word for word) “If you want to get pregnant, hurry up and do so before this happens again”.  It took me another month to recover but Mac and I were back on track – and this time with an answer to why we weren’t getting pregnancy (enter naivety again..):  clearly my ovarian cysts were the problem.  3 more months went by and I was starting to get nervous.  My OB ran a blood panel on my hormone levels and performed an HSG to look for a blockage  (where they fill up your uterus with dye and watch to see how the dye travels through your fallopian tubes… one of my best friends described this process as ‘the scream heard round the world’ and it’s a pretty accurate one..).  Low and behold – the results were a complete disaster.  All of my hormone levels were off and I had a hydrosalpinx tube (aka:  my left fallopian tube was filled with fluid and needed to be removed asap).  She suggested I seek help from a reproductive endocrinologist as this ‘was now beyond her control’.

I remember walking to my car from that appointment and crying my eyes out.  I felt like my body was betraying me.  How could I have ‘lazy ovaries, a non-working fallopian tube, low hormone levels’ and yet have the sweetest little 1 year old running around the house?  Maybe my first pregnancy was the indicator of my body’s ability – and Riley was the miracle?   I was confused but on a mission to seek the top specialist in Chicago for immediate answers.

Within one month, I had my first consult at FCI (Fertility Centers of Illinois) in River North.  Mac was out of town on business so my cousin Shannon came to the consultation with me and thankfully took notes the whole time. I walked into the appointment assuming Dr. K would tell me “let’s put you on a few hormones and see what happens. You don’t belong here”… and instead said “You have no option but to have your fallopian tube removed and then we need to start IVF right away.  It’s your only option”.  He walked us through the process, told me that I was a perfect candidate because I was a young 30 year old, healthy woman with two ovaries and previous pregnancies on my chart.  I believed him fully heartily when he walked me out of his office and said “This will be easier than anything you’ve already been through”.   I still hate him for that.

I had surgery two months later and my OB removed my left fallopian tube.  I was scheduled to start my first IVF cycle in May and wouldn’t you know it – I wound up naturally pregnant two days before my first appointment.  I literally fell to my knees in tears and thanked God for allowing me to dodge the IVF bullet.  I proudly called Dr. K’s office and canceled my appointment and then immediately called my OB to schedule blood work with her.  Blood results confirmed I was pregnant.  Repeat blood work confirmed I was pregnant.  Final blood work confirmed I was losing the pregnancy.  The only emotion I felt was anger.  I was two days away from proceeding with my first IVF cycle – I was mentally prepared for what was ahead – and now we were being teased with a natural pregnancy and subsequent loss.  What sense did this make?

I could spend months walking through every detail of my year with FCI and Dr. K – but it’s better described in one word:  HELL.  I did 3 IVF cycles – two resulted in miscarriage, one resulted in nothing.  That’s about 60 ultrasounds, 350 self-administered injections, $60K in procedures, $15K in meds, daily doctor appointments, weeks and weeks of awful side effects, and heartache beyond measure.  We did $5,000 worth of genetic testing on 5 of our embryos only to find out that they were all perfectly normal and healthy.  I had my 4th abdominal surgery in hopes of discovering a problem that was preventing me from getting and staying pregnant.  I tried juicing.  I did fertility acupuncture for 6 months.  I drank herbal teas.  I listened to fertility meditation on my phone at night.  I gave up and said ‘f@ck it”.. and drank coffee, had wine, exercised and ate junk food.  I did it all and nothing worked.  During my time at FCI – we transferred 6 healthy embryos into my body and I walked away from the clinic with no answers and not a single baby.

After leaving FCI – I was determined for an answer.  Even if the answer was ‘you can never have another baby again..’… I needed resolution.  It didn’t make sense to me and I was losing my mind.  My body was becoming a worthless machine and I didn’t care how much more beating it took to get me a baby.   I would lose sleep googling every single possible cure and then cry when I read some of the good and bad outcomes.  My family would tell me to just stop and give myself a break – and that hurt the most.  I couldn’t just stop.  I wanted to build my family and was willing to do just about anything.

When you leave on fertility clinic and head to another – it’s like starting a new job.  All your prior records need to be faxed over, there is a new process, new protocols, new faces, new personality, new possibilities and new disappointments.  I spent two  months sending my records to all the top clinics in the US… New York, Colorado, and a few highly rated clinics in IL.  I wanted to talk to all the best doctors and see what their recommendation would be.  Thankfully – the #1 doctor out of Colorado had the same opinion as a local doctor in Naperville, IL so I didn’t have to travel far to begin “Quest for Baby #2; Year 2”.  Advanced IVF Institute and Dr. M would be my new home away from home.

I loved Dr. M instantly.  Not only did he come personally recommended from a close family friend of ours – but he has a confidence to him that’s award winning.  He reviewed all of my records – referred to them in specifics – and delivered an instant diagnosis “you have excessive scar tissue in your uterus.  I don’t know FCI missed this – but they did.  Your options are to undergo surgery to repair or you will need to find a surrogate to carry your baby”.  Easy options, huh?  At this point my I had had 5 abdominal surgeries (including my C-section)  so the thought of being bed-ridden and recovering was nauseating.  But I was not ready to give up and at this point in my journey – the thought of finding a surrogate made me dizzy.  Weeks later – I underwent a 3 hour surgery where Dr. M removed mass amounts of scar tissue and performed a c-section on my non-pregnant body.  The recovery was horrific and I was laid up for months… just enough downtime to trigger depression and drive yourself insane at the lack of guarantees and the thought of all this pain and suffering for nothing.

Downtime will also allow you to do hefty research on IVF success rates and when I was finally ready to start up with the process again – I had decided on a clinic 50 miles away that had slightly better rates than Dr. M’s clinic did.  It was a leap of faith but my body was so tired and I couldn’t commit to anything less than the best and I believe the best is what I found.  I drove 90 miles round-trp every single day at 5:00am to Gurnee, IL – for 6 weeks – and did my last and final IVF cycle with Dr. S at Advanced Fertility Centers of Chicago.  Dr. S is the hero that brought us our sweet Tommy and our precious angels up above.

I mentioned in a previous post that my therapist once made me write out a detailed timeline of the events that occurred in order to create Tommy (and his brothers).  If you think this blog post is long – you should see the timeline.  It is filled with conversations, decisions, lab reports, diagnostic findings, cycle updates, specialist referrals, and days at which our hearts broke the most.  It almost seems an injustice to summarize a fertility journey but it would take years to explain.  And this is only one example of what it takes to create a life.  I have met so many women along this journey who have it so much worse.  Women who are in the process of getting divorced because the weight of this journey destroyed their marriage.  Women who are left with no option to have a biological child of their own.  Families who have cashed in their 401Ks in order to pay for one more IVF cycle. Families who have spent years enduring the hardship of fertility treatment and are now spending thousands of dollars and years of time waiting on an adoption opportunity.  The stories are endless and each one is more complex than the next.

Infertility is unfair… as is any other disease.  It is not natural – it is not beautiful – it is not fun.  It takes away the joy of creating life with your partner.  It turns an act of love into a science project.  It makes you hate your body and resent it’s failings.  It causes you to lose friends, feel hurt by your family, and pull away from the world.

I sit here today saddened by what I’ve had to endure – beyond thankful for what it provided me – and insanely fearful of possibly re-entering that world should we ever chose to do so again.  Take the time this week to reach out to a friend / loved one who is going through infertility struggles and simple give them a hug.  Ask them if they would like to talk about their experiences and be open to what you hear.  Ignorance is not bliss and awareness is key.