Clinging to hope in the seasons of suffering and watching God use ALL of it for good.

Wednesday, March 16, 2016

Our Story Part 2: The Diagnosis

Spring 2014
It was dark and rainy the evening of my first appointment at the new practice.  I filled out the packet of new patient forms and then waited in the small, softly lit exam room.  This would be the third specialist in six years.  I prayed that this would be a better experience than the last practice because I just couldn't go back there.

I was a bit surprised when Dr. Fields* came in because she wasn't what I was picturing at all.  She was a perky brunette with a warm smile and about my age.  My age?  There are doctors my age?  I guess I'm not as young as I think I am anymore.  We went over my medical history and I mentioned my husband and I were trying to start a family.  She quietly listened as I told her we had been married for a long time... 12 years at this point... and that I thought I might have endometriosis after numerous tests over the last few years.  I said I felt dismissed by my last doctor which was why I was here.  They were pushing hard for me to undergo exploratory surgery and I wasn't comfortable with that.  "We can't do any more for you then."  That was the day I decided I needed to find a new doctor right away.  Dr. Fields must have seen the pain in my eyes because she immediately grabbed my hand and said "I know what you are going through.  My husband and I got to a point where starting a family became a now-or-never endeavor.  We have a daughter who just turned one.  I will do everything in my power to help you."

It's funny to me now that I remember this initial meeting so vividly but then again, I finally found someone who got it.  I felt relief and I believed her when she said she would help us.  She ordered a panel of blood tests for female infertility as well as an ultrasound and walked me out to reception.  She told me we would get to the bottom of this and then lingered at the reception desk in thought, deciding to add a hysterosalpingogram to the list of tests as well.  She may have hugged me too but I remember loving her from that very first appointment on and I truly believe God handpicked her to be my doctor.

Dr. Fields called me a few days after my blood draw reporting that everything was normal but one result, the Follical Stimulating Hormone (FSH), was a little higher than she would have liked for a woman my age.  She wanted to run the panel a second time when my next cycle started so I traipsed back to the office a few weeks later to run the tests again.  This time my FSH level was definitely high!  What did this mean anyway?  And why were the results different from the last cycle?  I learned that FSH is the main hormone involved in producing mature eggs in the ovaries.  The high level is proportional to the effort my body was exerting to produce follicles each month and meant that the eggs I had left were likely low in number and poor quality.  And bonus: peri-menopause was likely on the horizon.  Menopausal women have a high FSH level for the rest of their lives as their bodies continue desperately trying to produce follicles even though their egg supply has long ago been exhausted.  Great.

Dr. Fields was obviously concerned by this since I wasn't even 35 yet.  She gave me paperwork for a fertility clinic and told me to check them out.  They would do more tests on me and my husband to pinpoint the problem and offer solutions.  She also urged me to get the hysterosalpingogram done as soon as possible to rule out a tube blockage.  It looked like time might be running out for us and we needed to be aggressive.

Armed with this information, you would expect that I ran to the fertility clinic and the radiology office for my hysterosalpingogram but I waited.  I don't know if it was the fear of the unknown, the shock that something might actually be wrong or the heaviness on my heart that we might learn we would never become parents.  I was almost paralyzed by the blood work results.  It took three months for me to make the hysterosalpingogram appointment.  During that time, I read up on all of the side effects of the tests and what the results may or may not show.  When I finally pulled the trigger, I fully expected the worst possible news but the results came back normal.  Completely and utterly normal.  The radiologist told me I had a beautifully shaped uterus and no blockages.  Imagine that!

By now it was early Fall 2014 and we still didn't have a positive pregnancy test and we were just ruling out problems without finding the root cause to our infertility.  I made a set of appointments at the fertility clinic and prayed that a diagnosis could be made soon.  The blood tests were extensive!  I think they filled 27 tubes of blood at my first visit.  I also had another ultrasound to check the number of follicles I had developing.  Typically, a woman will have 6-10 follicles forming on each ovary for a total of 12-20 follicles.  Me?  I had five.  Collectively.  The fertility doctor immediately said she suspected I had a low ovarian reserve, meaning I likely had a low supply of eggs but the blood tests would confirm this.  With hormone injections, we could likely ramp up the number of follicles to 20, collect a number of eggs and likely be good candidates for IVF.  My husband had his semen analysis and blood work the same week.  We held our breath and waited.

For a week, I wrestled with what the fertility doctor said that day.  Years ago, before I knew reproductive assistance would be a part of our reality, I decided that IVF was not right for us.  If I was going to spend the time, energy and money, I would invest it in adopting a child in need.  We didn't need to have a biological child to become a family.  I certainly don't dispute that IVF is right for some couples; it just wasn't right for us for a number of reasons.  But now that IVF was in the conversation, I felt God was holding me to the stance I made years before because the insurance with my new employer didn't cover any infertility treatment.  They only covered the diagnostics.  So on one hand, we could figure out what was wrong at no additional cost but then we wouldn't be able to do anything about it unless we were willing to fork over tens of thousands of dollars.  I felt like I was between a rock and a hard place.  Could we truly close the door on experiencing a pregnancy of our own if it could be done?  Maybe it would only take us one or two rounds of IVF to get pregnant.  Questions like this swirled around my head endlessly and I finally understood the suffocating desperation of the couples that choose IVF.  I got it.  I was there.  And I didn't blame them in the least for going the route I said I would never take because for the first time in my adult life, I was seriously considering it as well.

My next appointment was November 30th for a follow up consultation.  My husband wasn't able to take off from work that day, so I went alone.  The fertility doctor led me to her office and gave me what I can only describe as a power point presentation about everything that was wrong with us.  It was full of graphs, imaging and explanations of various procedures and ultimately why they would not work for us.  She told me that I had a diminished ovarian reserve (DOR), meaning my egg supply wasn't just low but anything left was likely poor quality as well, and my blood test numbers weren't good at all.  In fact, my FSH levels were even higher now than they were in the spring indicating my body was working extremely hard to produce follicles without much success.  They suspected endometriosis and adenomyosis as well based on previous test results and family history.  I was not a candidate for any of the hormonal stimulation therapies because they didn't think I had any quality eggs left to retrieve.  That is when she pulled out the pamphlet for egg donors and handed it to me.  I was shocked.  Egg donor?  Really?  Am I that far gone?

She wasn't done yet.

Not only did I have a host of problems, so did my husband.  She pulled up the power point slides with his results and said the only procedure that may help us is called intracytoplasmic sperm injection (ICSI) which is just a fancy way of saying they could inject one of his healthy sperm into a donor egg in a petri dish and then attempt to implant it.  Read: very expensive!  Either way, our results definitely meant the very best we could hope for was a child with my husband's DNA.  By now her voice was lower and she said "I'm very sorry but it doesn't look like you and your husband will have biological children.  My suggestion is that you seriously consider an egg donor and possibly a sperm donor as well."  I was in a daze after hearing this and likely tuned out anything else she said.  This was really happening.  We were never going to have children of our own.

Aside from the financial hurdle that donors add to an already astronomical cost of reproductive assistance, I didn't even have to ask my husband because I already knew he was on the same page.  If the child wasn't both of us, it would be neither of us and if this hypothetical child didn't share our DNA, why wouldn't we just adopt?  I said this to the fertility doctor very calmly and then she handed me pamphlets on adoption advising us to think about all of these options and we would reconvene in December about the path forward.  She also mentioned we might be eligible for a natural IVF study that was taking place in early 2015 for couples like us.  A study meant it would be free but the caveat was that I wouldn't be given any hormone stimulants to help my ovaries produce more follicles.  We would be very lucky to get one healthy egg out of the procedure and the probability of it developing into a normal embryo with my husband's sperm was extremely low.  The likelihood of it successfully implanting in my uterus was a long shot at best.

All of this bad news made me feel like I was under a pile of bricks.  "I may never be a mother." was all I was thinking at the time.  The weight of this diagnosis was enormous.  Somehow I managed to hold it together during my office visit but the nurse that was helping me fill out more paperwork knew I was a wreck inside.  She wished me luck and quietly said she heard some women had success using a CoQ10 supplement.  When I got in the car, I called my husband and went through all of the details.  He wasn't surprised there was something wrong with both of us considering we had been married for thirteen years and never once had a positive pregnancy test.  I asked "What do we do now?" and he calmly said "We keep trying."  When I got off the phone with him, I poured myself out to the Lord.

What are you doing to us?  What is your plan?

Why are you allowing all of this?

Please!  I beg you!  Fix this!

While I was in tears in the car, God gently prompted.  "Reach out to Lisa*."  It was as clear as day and yet again, he was sending a telegram to encourage me just in time because he knew that today was the worse day of my life.  You see, many years ago Lisa had gone through infertility too.  She and her husband were married for well over a decade before they had their first child.  The Lord knew I needed to talk to someone who would understand the intense grief I was feeling so I emailed her from my car outside of the fertility clinic right then and there inviting her to meet up for dinner sometime soon.  Lisa was the one I could open up to about our struggles because I knew she had walked this painful infertility road already.  She had been here too, seeing and feeling the same things I was going through at this very moment.  She also could provide a hope that no one else could.  With the Lord's help, she and her husband beat infertility and had two beautiful children!

What a relief it was to finally allow the flood gates of my internalized despair to open with someone who intimately understood the challenges we faced.  Lisa could relate to things that made me feel like a raving lunatic, laugh with me because she had done them too and provide insight and wisdom that can only come from living through this harsh experience.  At the end of the night when our bellies were full and our hearts refreshed, wandering through the parking garage looking for our cars, Lisa tearfully told me that all of their troubles with infertility and years of tears were worth it if it meant she could encourage me now.  I briefly allowed myself a moment to think about how it must feel to be on the other side of the ugliness of infertility, on the other side of these years of tears.  I silently hoped that someday I would be able to come alongside someone too, just like Lisa had, and share the joyful ending I knew was coming but had yet to be written.

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Stay tuned for Part 3: Tender Telegrams
Missed previous posts?  Click here to catch up!

*Names have been changed to protect privacy.
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2 comments:

  1. Thank you for sharing! I can't wait for the next part to come out. This is very encouraging!

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    Replies
    1. I am so glad! Thank you for your kind words.

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