Friday, April 29, 2016

My Infertility Story

Sharing my story as part of fellow blogger, Caroline at and her awesome link up for National Infertility Week!  I didn't realize how long-winded I was/how much I wanted to share about it until now.  Thanks, Caroline!  :)

Prologue: The Early Years
My big, crazy family
As the second born in a family of seven children, there has never been a time in my life when I haven't been surrounded by children.  I was raised to value new life and babies have basically always been my favorite thing.  And children seem to have always liked me, too.  There was never a question in my heart or mind about whether I would be a mother one day- though I did often have trouble visualizing what that reality would look like.  Through my early twenties I was ambitiously focused on building a career as a musician, and I sadly feared a child would be the end of that.  Despite my fears, I knew I didn't want the glamorous "singer life" of traveling- with no roots and no ideal family situation.  I knew, more than anything else, I wanted a family, and I was blessed to find someone with the same desire in his heart.  While we didn't actively try to conceive for the first five years of our marriage, feeling compelled to wait until we finished our masters degrees, we never used extra means to prevent pregnancy either.  I've never taken birth control or used contraception, and as it turns out.... I guess didn't need them.  

Chapter 1: The Beginning
Oh happy day!
M and I were married on May 5, 2007 and had a lovely honeymoon in the Riviera Maya.  He was 30 when we married, I was 24, and we were both still trying to figure out what our new life together would look like.  M had worked as an analyst for 12 years and wasn't happy in his job but stuck with it (because that's the kind of guy he is!) I had a bachelor's degree in music but no real career path.  The first few years of our marriage were ones of adjustment, problem solving, and learning the art of compromise.  I wanted to stay in Chicago forever, M wanted to come home to Michigan.  There were times M would say he was ready for a baby but I felt overwhelmed by the instability in our lives.  Things came to a turning point three years into our marriage when M could no longer take the stress and dead-end track of his current job, and I determined that to move forward in my career I would need a masters degree.  We decided to both return to school at the same time- so that when we were finished we could start adding to our family.  We also made the insane decision to buy a house the same year we started our graduate degrees.... Bring on the crazy!  Those were some of the most stressful, chaotic, and exhausting years of our lives.  With the stress of working full time, paying a mortgage, going to school full time, and learning music on the side, I relied on fast food and comfort food to support my emotions, but definitely not my body.  The stress of city life and a packed schedule took its toll.  While I've always suffered from extreme fatigue, during the grad school years it intensified to a debilitating extent.  On top of that, I experienced constant pelvic pain that I attributed to indigestion or ovulation.  I was too busy at that point to wonder what was going on inside of me, and I've always had a remarkable ability to power through just about anything.  

Chapter 2: Embarking on our journey
On the steps of our first home together in Chicago
In 2012 we finished our degrees and were filled with anticipation and excitement to start our family.  I consider our 5th anniversary, May 5, 2012 to be the symbolic anniversary of our efforts to conceive as well- it was the day I received my diploma- the day marking my transition from one phase of life to the next.  While M still had an internship to complete, we didn't want to wait any longer to welcome a baby into our lives.  I visited an OBGYN to ask questions about things I could do to support my body while embarking on trying to conceive.  Her response was cold: "There's nothing you can do to have a 'perfect' child.  Nature wants you to reproduce. Give me a call when you're pregnant."  Looking back now I'm even more disappointed in the lack of interest in whether I might be a candidate for fertility problems.  A few simple questions could have set off flags of red everywhere.  I had daily pelvic pain that was getting more intense as time progressed.  While my cycles seemed regular, the nature of my menses was indicative of a serious problem.  I had crippling pain that would cause me to vomit or come close to fainting each month.  My PMS was so bad any fool would be able to tell I had substantial hormonal issues.  But instead of taking an interest in me as a patient, I was treated like "most" people and rushed out the door with a slight admonishment that I would ask what I could do to help have success with trying to conceive and sustaining a healthy pregnancy.  I started charting my basal body temperature and other fertility signs and reading everything I could about fertility and conceiving a child.  I started taking supplements that I felt would help support my body and made M do the same.  After about six months of no success, I started suspecting something was wrong- with me.  I knew the constant nagging pelvic pain couldn't be normal, but endometriosis never crossed my mind.  I guess when you're accustomed to a certain level of pain, you don't realize HOW not normal it is...  

Chapter 3: Revelations, Diagnosis, Shock
After the obligatory year of trying unsuccessfully to conceive, I visited a different OBGYN to have some baseline tests done.  Because they tested only on cycle day 21, all my hormone levels came back normal, but she referred me to a specialist.  One of the first tests the RE did was an ultrasound.  I'll never forget the casual way she looked at the screen and relayed with her heavy Russian accent: "Looks like you have two large endometriomas on your left ovary- so that means you probably have stage 3 or 4 endometriosis."  As though she was saying something as simple as, "Yep, there's your uterus, there are your ovaries, there's your tubes."  She told me the only way I would conceive would be through IVF.  I asked if surgery to remove endometriosis could be beneficial and without hesitation she told me, "no."  The sad, sad thing about endometriosis is that the only way to diagnose it is through surgery.  Having one woman's opinion- based on an ultrasound, which is really interpreting shadows- wasn't enough for me to even consider that option not knowing the reality of what was inside of me.  I had heard about NaPro doctors from friends who conceived miracle babies after having surgery with them and was thrilled to find one in my insurance's network.  At that time- Jan of 2014, there were only nine surgeons worldwide trained in NaPro's techniques- known for their commitment to preserving fertility and preventing future scarring.  I began working with Dr. S in Peoria, IL- driving 2-3 hours for appointments and tests, and all the while still believing I could become pregnant at any moment.  Living in a state of denial that something so egregious could be lurking within me.  I completed NaPro's cycle-long hormone profile and was completely validated to hear that I did indeed have a significant hormone problem, which we promptly began to treat with HCG injections.  Based on my health record, charts, and interaction with previous RE, Dr. S. strongly encouraged a 'diagnostic laparoscopy' to find out more.  She scheduled the robotic-assisted procedure, and I agreed that if she should find endometriosis it would be best to remove it during the same procedure.  On May 21, 2014 I went in for what I expected to be an outpatient, minimally invasive laparoscopy; in fact, I half expected to hear: "You don't have endometriosis, you just had a little cyst and we removed it!"  When I awoke it was to the biggest shock of my life.  Stage IV endometriosis had proliferated every part of my pelvic cavity, but particularly on my left side: entangling my fallopian tube into a twisted mess around my ovary, which was adhered to the pelvic wall, and fusing my bowel to my uterus.  Because of the nature and location of these implants, Dr. S had converted my surgery to a laparotomy- with a six-inch incision, and it had taken 8 hours to operate.  Needless to say, I spent the night in the hospital.   I was anemic for weeks, the recovery took months, and getting back to singing took even longer, but MY PAIN WAS GONE!  Dr. S said before the surgery I'd have had a zero percent chance to conceive- and after the surgery she said my chances shot up to 40%.  When the shock of the diagnosis settled in, I felt pretty optimistic- or shall I say "delusional?"  I truly thought: "Well, I've had the surgery, now I'll get pregnant!"

Chapter 4: A Vicious Cycle
After Surgery #2
After my initial diagnosis, I had a long period of recovery that made reflection inevitable: I came to realize that I didn't "handle stress well," as I'd always thought.  On the outside I managed stress stoically, while on the inside it took its toll.  Research shows a direct link between stress and severity of endometriosis.  Anyone who has lived in a big city knows THEY ARE STRESSFUL.  The traffic alone is enough to turn your hair gray.  (It shouldn't take 35 minutes to run up the street to grab a gallon of milk... non dairy, of course.) So after years of refusing to consider moving home, I delighted M by deciding that would be the best thing for us: A new start and a calmer life- for my health's sake and for our future family's sake.  Everything happened so quickly- we sold our house in TWO days, and started to settle into my parents' home while we waited in limbo to find our new home together.  In retrospect, this may not have been the best idea: upon moving we lost our insurance.  We were in a tricky place with this- as M would be transitioning from self-employed consultant to employee soon we didn't rush to self-purchase insurance, but also knowing we'd have insurance soon didn't feel compelled to self-pay for doctor visits and tests either.  I continued my hormonal treatments and assumed I'd be pregnant soon anyway.  Within the six months without insurance, my pelvic pain started to intensify yet again.  I chalked this up to phantom nerve pain or pelvic floor dysfunction- after all, NaPro surgeons are trained specially to prevent scarring when they operate, so as far as I was concerned I was clean as a whistle inside.  When our new insurance was activated in May of 2015,  I started with a new doctor closer to home, Dr. P in Mishawaka, IN.  Still a drive, but well worth it, and he ordered a routine ultrasound to get to the bottom of my pelvic pain.  The ultrasound showed a 10-cm cyst on my left ovary (the little ovary that couldn't) and it wouldn't respond to treatment.  So, less than a year after my first surgery I was scheduled for another.  In July of 2015 I went under the knife again, and was devastated to hear the findings: a wall of dense adhesions had formed from my previous surgery- making conception IMPOSSIBLE.  All the time we'd spent hoping, taking shots, medicines, supplements.  Nothing could have helped.  Dr. P said they were nothing like he's ever seen, but I remained hopeful post-op that because a laparoscopy is much less invasive than a laparotomy, and because I had been on my anti-inflammatory diet and low-dose naltrexone (which calms an over-active immune system) that new adhesions would not form.  The catch 22: the only way to cure the adhesions is to surgically remove them, which can create them anew.  Dr. P says certain people are prone to making them.  Guess I'm one of those people!  Moving forward from my last operation has been a journey of solving mystery after mystery.  The biggest one is: am I ovulating?  A follow-up ultrasound three months after surgery revealed a big, fat LUF: meaning, my follicles mature but do not rupture.   way to treat this is with trigger shots, but the first few times I tried this it didn't work- sinking me into a new level of hopelessness.  Thankfully, just a month ago- the trigger worked and I ovulated!  But mysteries remain: do I have more adhesions?  Will I have to have surgery again?  Are my tubes scarred?  Are my eggs quality?  So many questions remain unanswered and will only be answered in time.  I'm starting to consider the possibility that I will never carry a child, and the reality of that is difficult but one I'm prepared to process.  Adoption feels like another long and winding road; one we are exploring.  I still hold out hope that God will bless us with a miracle and that we can adopt as well.  Until that day comes I have much love to be grateful for: the love of God, the love of my husband, the love of my family, the love of my dogs, and the love of my fellow infertile sisters.  And that's been my life support through it all. So thank you, my friends! <3 <3 <3
On the steps of our new home in MI
Chapter 5: When Our Family Comes:  Still unwritten

Sunday, April 24, 2016

Infertility Awareness Week

Happy National Infertility Awareness Week!  Haha, gotcha.  There's nothing happy or fun about infertility.  I've not experienced feelings so dark or crippling as those that come when I dare to entertain the thought of a childless future.  It can be difficult to talk about this ordeal in our modern time.  From the growing trend of being "childless by choice" to the increasingly popular notion that humans are an environmental stain and population control is a moral necessity, there are rampant unsympathetic personalities at every turn.  I tend to keep our struggles out of  everyday talk, not only  because I want to avoid awkward interactions and don't want to dampen casual conversations by bringing up my personal problems but also because I have witnessed surprising hostility toward people with a desire to procreate, and I'd rather not open the door to those encounters.  I have a bad habit of reading the comments section on articles, and I've been shocked by the reactions from some people.  Everything from, "People who have the need to pass their genes on are selfish" to "there are thousands of children in the foster system waiting to be adopted and you have these egotistical people running around paying thousands of dollars to have their own child."  I fear one day such a confrontation will present itself, and I don't think that would bode well for the other person.  

On top of that, I have had all the "other" conversations with people already, and I've grown tired of having the same conversation.  You try to help others understand how bleak your situation feels, and they always have a suggestion which seems to invalidate those feelings.  Like you shouldn't feel as hopeless and empty and dead inside because you just haven't thought of things from THEIR angle yet.  I want to get it all out here today, for those people with whom I've not had "the" conversation with yet.  You'll find the answer to some of your most burning questions here below, and then some: 

-Yes I have tried relaxing, yoga, essential oils, ovulation predictor kits, charting, diets, exercise, supplements galore.  
-No, I would not like to hear about your husband's cousin's sister-in-law's niece and how she tried to get pregnant for 9 whole months before she gave up gluten then suddenly conceived.
-Yes, I gave up gluten.  And dairy, corn, 99.5% of processed foods and fried food and sugar.
-Yes, my husband has been tested.  He is fine.
-Yes, I know why we're infertile: because of endometriosis.  
-Yes, I've had surgeries, and no that doesn't mean I'll be able to conceive now.
-Everyone in my family is pretty fertile as far as we know.  Seems I'm the lucky one.  
-Thank you, but we're not interested in your womb.  
-No, we haven't tried IVF.  It's not a real option for me, for many reasons.  And I truly believe that if I am meant to carry a child it will happen anyway.  The question is- am I meant to?
-Yes, we have thought about adoption, (and are trying to make this work for us. By the way, have YOU thought about it?  If you're  about it, I hope you're considering it, too.)  Now let me tell you something about adoption.  Beautiful as it is, adoption is not a solution to infertility.  It is an alternative to living a childless life, but adoption is not the solution for the pain caused by infertility.   It can lessen that pain and bring healing to broken hearts.  But when a friend wants to share with you something as personal and tender as her struggle with infertility, suggesting she look into adoption does nothing to acknowledge her pain- the very thing she is trying to help you understand.  Of course it can be hard to understand, but it is important that others do- so they know why we avoid baby showers, why we seem to be in an endless funk, why we're tired, why we don't want to get together, etc.  And if they want to help you, understanding what you feel is critical.  Maybe this will help: 

Infertility is like being lost in a desert with a thirst so intense it penetrates your soul.  The thirst takes on matter and weight- you have to carry it, and it's heavy.  The only way to get to the water you so desperately desire is to keep wandering through the unforgiving terrain until you've reached the other side.  You encounter mirage after mirage: cool pools of crystal water that seem to taunt you as you fight to put one foot in front of the other- at times the water seems close enough to touch but as you approach it vanishes, leaving you overcome with confusion, despair, and an overwhelming sense of loss- though the water wasn't ever yours anyway.  You pass other travelers on the way and can't understand why you're the only one who appears to be lost.  They know exactly where they are and have water but are unable to give you any- your encounters with them make you feel even more alone and lost: it doesn't seem fair that they have the water you are desperate for; they aren't even lost and they haven't been in the desert as long as you have.  The longer you are lost in the desert, the more you come to believe you will never taste the water you seek.   This changes you as a person.  You used to be the kind of person who loved to think about the other side of the desert and all the wonderful things you'd find there.  You loved water and had always been drawn to it.  Now you are so consumed by its absence that you question whether you even believe it awaits you anymore, and as the symbol of what you lack, your feelings for it have become conflicted.  You are not sure whether you love or hate it.  You become weary as you trudge through the deep sand, each step more agonizing than the last as the weight of your thirst settles into every part of you.  Yet you forge ahead because the alternative is to stay lost in the desert with your unquenchable thirst forever more, which actually begins to look more appealing the longer your journey takes... 

(Adoption might be like finally arriving to the other end of this desert only to discover that you are at the beginning of a new desert and the water is on the other side of THAT one.  And there are also mountains in this desert you will have to climb despite the fact that you already feel like you could collapse from exhaustion.  Oh, and you have to pay $25,000-$40,000 to make the journey... We don't care where the water comes from, but we're not sure we have the energy and heart after traveling through one barren desert to make through another.  We will make that journey if and when we find the calling, the strength, and the resources.)  

-Yes, we know adopting from foster care is practically free.  But we are still wandering in our desert, having given everything to finding our way out.  We are not in a mental or emotional state to deal with the very broken foster care system.  We do not want to grow attached to a child that will be reunited with its birth family.  We are not ready to accept a child with severe emotional problems.   
-Yes we know "everyone" wants an infant.  So do we.  We want to bond with our child from before birth, but if that is not possible for us, we'd like to bond with our child from infancy. 
-My doctor says he can't give us a statistic on how likely we are to conceive because for each woman it is either 100 or 0 percent.  Part cop-out, part true.  
-Yes, I take shots, get blood drawn, have ultrasounds, and take fertility meds monthly.  
-Yes, I know I "have time."   (Saying this to an infertile friend is not comforting.  It translates to "I can tell you're really upset, but I want to deflect this discomfort I feel by changing the subject and offering a bit of encouragement that does nothing to speak to your feelings or struggle.")    

These are real conflicts that we grapple with every day.  Some days we can distract ourselves from how dreadful we feel, and other days it takes over and we have no control over our emotions.  There is never a moment we are not thinking about our journey and trying to put on a pleasant face for functioning through life.  Please be patient and understanding with us.