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


  1. 8 hours!!! Girl. So glad your pain was gone after that.

  2. Wow.. I just found your story thru the linkup. I also have extremely hard periods and vomiting etc..& sometimes wonder if I have endo. Did they gave you any indication as to what caused it? So all these years you were not ovulating? cuz the times I have tested I am ovulating...

    1. I'm so sorry I just saw this... I've been so busy with the end of the school year that I've been slacking on my blog! Currently there is no known cause of endo, but the prevailing theory is that there is some sort of problem in utero- that women are born with the cells in place, and puberty activates them, causing them to become more inflamed with each cycle. Estrogen also makes endometriosis worse- and many of our beauty and household products contain harmful chemicals that mimic estrogen in the body causin unsafe levels that make endo worse. In terms of ovulating, it's hard to say whether I was ovulating for years or not. I likely never ovulated from the left ovary, since it was stuck to the pelvic wall, but I may have ovulated from the right side. The only way to truly confirm ovulation is through ultrasound because with LUF if you test you will get a positive and based on hormones you will think you ovulated even though the egg is trapped and never released. It's an insidious problem that is often overlooked, misunderstood, and undiagnosed. In terms of suspecting endo- do you have pain also between cycles or with bowel movements? Does your pain get worse dueing menstruation? I wish you the best! Thanks for reading and sharing!

    2. thats ok :) No i generally dont have any pain between cycles.. occasional cramps, like I know I'm about to start with my period in a few days etc.