I wrote
the following post just over 2 weeks ago, the night before finding out my baby
was dead at 16 weeks. In an ironic twist
of fate, I had been up all night passionately writing, all about our infertility
journey and how excited we were about our pregnancy. We never dreamed we’d be able to have our
first daughter, much less a second child, and I wanted to inspire hope for
those who thought even one child may be unattainable. I wasn’t going to publish what I’d written,
because of the obvious devastation. But
a friend pointed out that perhaps I was writing this for my future self. Maybe I need to heed the very advice I set
out to convey to others about perseverance and never giving up on your
dreams. When I wrote it, I hadn’t the
slightest idea that 3 hours later I’d wake up, go to a routine OBGYN
appointment and receive the news that there was no heartbeat at 16 weeks. No clue that I’d lay on that table while they
double checked with an ultrasound, weeping and wailing once it was
confirmed. That everything we’d planned
for was gone, and our whole world would be turned upside down in an
instant. So I decided to post what I’d
written – for you and for me…
My
second child is due this May. It will be
nearly 4 years to the day since I heard the doctor utter the one word I never
thought I’d hear at 33 years old….hysterectomy.
I went into that appointment with such high hopes, thinking I’d finally
found a specialist who would help me fix everything. Needless to say, I was completely blind-sided
by the recommendation. Friends and
family encouraged me, and even my husband felt that my quality of life was more
important, and perhaps it was time to give up on having a baby. I considered it…and came pretty close to
going through with it.
My story
is not a short and sweet one, nor is it an easy read. But my hope is that for those of you who are
going through it, I can provide a little bit of hope and exemplify just how
important it is to keep yourself educated, have the courage to persevere even
when everything seems stacked against you, and most importantly - never simply
trust the word of a doctor because they say so.
For those of you who have not gone through it, or may know someone going
through it, I sincerely hope you will take the time to read my story, so that
you may have a better understanding of something that is so painful, and such a
taboo topic of discussion. It’s easy to
just rattle off a list of treatments and surgeries, but there is so much more to
it than that. So much more physical and
emotional pain with every cycle - so much heartbreak. Infertility has to be one of the most
isolating difficulties a couple can face.
It is such a unique sadness that at times it can feel like even friends and family just never seem
to know how to comfort you unless they’ve been through it themselves. And when it comes to acquaintances, somehow
people can muster far more sympathy and even empathy for illness, but mention
the word “ovary,” and most get flustered and seem confused as to why you would
even say such a thing.
Above
and beyond the feelings of isolation, the daily physical pain and complications
that came with my afflictions and nearly every treatment I sought, the greatest
challenge by far was finding knowledgeable doctors, and continually educating
myself. I have had two different doctors
tell me at two different post-op appointments that they had “no idea what that
was” growing inside of me.
Unfortunately, these statements were regarding two completely different
things. To this day, I’m appalled by the
fact that I had to contact a friend at the U Penn library to access medical
journals so I could research these things myself. I just couldn’t believe that a doctor would
simply show up after looking inside my body during a surgery and basically say,
“Yeah, um…there’s something growing in there…I got nothin’ – no clue what that
is…have a nice day.” One removed what he
found (a web of scar tissue filling the inside of my entire uterus) in what
turned out to be the worst method possible, and the other simply left what he
found, because as of my final surgery, these other mystery growths are
completely covering all of my organs in my entire pelvic region, and couldn’t
be removed without scraping and damaging everything.
It can
be a little unsettling to hear that foreign things are growing all over your
organs, with only a pathology report to guide your way to interpret the
findings. I tracked down a man who wrote
the one article I found on the subject, just to make sure this was not
something that had the possibility of becoming malignant. Why was that my responsibility as the
patient? I would think a doctor would be
inclined to take on the challenge of figuring it out in the 14 days time to the
post-op appointment, and would feel like a fool to simply admit
incompetence. Yet, time and time again
they did. And every time they stopped
asking questions, I’d move on to another doctor.
In three
years time, I went through six doctors.
I had 3 surgeries in the last year and a half of that time, all
performed by different doctors. The
first two surgeries each unveiled a completely new problem, which explained why
all previous fertility treatments were utterly futile. The doctor who diagnosed my PCOS (polycystic
ovarian syndrome) decided to simply send me home with prescriptions for 3
months worth of Clomid to make me ovulate, and Metformin for the PCOS, and told
me to come back in 3 months if I wasn’t pregnant. It was only through meeting other women on
the Medhelp.org infertility forum that I discovered the standard protocols of
treatment that my doctor was completely neglecting. He refused to do ultrasound monitoring for
residual ovarian cysts, even though it is quite common when stimulating
polycystic ovaries for extra cysts to linger (hence the name -
polycystic). As a result, I was in the
ER 3 times in my 7 months on Clomid for cyst ruptures. Other things he overlooked were testing my
husband’s sperm before putting me on all these drugs, checking that my tubes
were open with an HSG (hysterosalpingogram), and most importantly, taking my
progesterone levels each cycle to make sure the drugs were working and making
me ovulate. I had to kick and scream and
force them to do all of these things, months into treatment. Turns out the pills didn’t work several
times, and by the end, I was on the maximum dose. Needless to say, having to battle them to get
the proper care, and ultimately not receiving it when it came to monitoring for
cysts, only compounded the emotional stress and drain that came with each
failed cycle.
Despite
my increasing cyclical pain, prescribing me 40 oxycodone for my monthly cramps,
and once even hospitalizing me overnight when painkillers were not enough to
control my cramps, this doctor refused to entertain the notion that endometriosis was a
possibility. I even had a family history
of it. The next doctor confirmed this
diagnosis with my first surgery, and found the endometrial implants were
pulling on my fallopian tubes. When I
asked if that could’ve been inhibiting the egg from successfully getting to my
uterus to be fertilized during all those months on Clomid, she said,
“Absolutely!” She also discovered that the
greater source of my pain was probably adenomyosis – a condition where the endometrial
tissue grows within the muscular walls of the uterus. And just as with endometriosis, where the
implants scattered throughout the pelvis act as they would if they were inside
the uterus – swelling with blood and then shedding it once a month in a foreign
place, the same happens with the implants within the muscular wall in
adenomyosis. Because of this, it had
really gotten to the point where there was very little time in my cycle when I
was even remotely comfortable or pain free.
Every day I would wake up not knowing if I was going to be incapacitated
in pain that day, or just have random stabbing pains where I could manage to
function. Unfortunately, unlike
endometriosis, the implants cannot simply be removed, since they are in the
muscular walls. The only way to cure it
is to remove the muscle all together – the uterus.
With
this news came great frustration, but also comfort in knowing what I was
facing, and the assumption that now that the endometriosis had been removed, I
may at least have a shot at conceiving.
I simultaneously began seeing a reproductive endocrinologist that we had
to pay out of pocket for. So began the
daily hormone injections in the belly, the IUI (intrauterine insemination) and
IVF (invitro fertilization) cycles, and failure after failure. Early miscarriages, complications like
ovarian hyperstimulation syndrome, and after my egg retrieval for my first IVF,
I was not exactly optimistic because I showed up for the embryo transfer doubled
over in pain with a terrible fever and awful pelvic infection. For those of you who may not be familiar with
the egg retrieval process in IVF, a vaginal probe is inserted with a large
needle on the end of it. The needle goes
through the vagina and all the way up into the tender, swollen ovaries that
have been stimulated to produce sometimes dozens of follicles with eggs, and
each follicle is stabbed with the needle to extract the egg. Each time I had it done I had 18 eggs
removed, many women can have more. You
then have 3 or 5 days to hurry up and heal, before growing embryos are
implanted back into the uterus.
After
two failed IUI’s and a failed IVF, 10 months had passed since the first surgery
and the daily pain was intolerable again.
Since the first had provided some relief, I scheduled a second surgery
with a new doctor, who I’d recently switched to after many other incidents of
incompetence by my last one. This time,
he decided to take a look INSIDE my uterus, where he found a dense web of
intrauterine adhesions (scar tissue filling my uterus). Aside from hearing the final doctor recommend
the hysterectomy a few months after this, the post-op appointment for this
surgery was perhaps the other rock bottom moment of my infertility
journey. I was informed that he found
this tissue and that he had never, ever seen anything like it before (but
removed it anyway). He repeatedly
emphasized while shaking his head and almost grimacing that I had “Just a
boggy, BOGGY uterus!” – a term used to describe the severity of adenomyosis and
how flaccid the muscular tissue is because it’s composed of blood filled
implants. He also handed me my pathology
report, which described the samples of tissue taken from my uterine wall as
“necrosis,” or dead. Then he wanted to
do another ultrasound to check on things, but I had to wait while he went next
door first. I sat there, trying to hold
it together with the knowledge that all those recent fertility treatments were
again futile given my uterus had been filled with scar tissue the whole time,
that I was now up against some other unknown factor that this dipshit hadn’t
bothered to research, that I’d now be forced to move onto another doctor again,
and that word – “necrosis” just lingered in my head and made me feel like my
womb was dead inside and I had no chance of ever conceiving. In the meantime, he went next door to give an
ultrasound to a VERY pregnant woman I had seen in the waiting room. Through paper thin walls, I got to hear them
talking about the positioning, what that meant for the impending delivery, their
excitement, their laughter… It took
everything I had to wait until I got to the curb where I waited for my husband
to pick me up before I began sobbing uncontrollably.
The news
of what I would later learn was called Asherman’s Syndrome led me to find
someone who was actually listed on the websites for this extremely rare
affliction as a specialist, and astoundingly, he happened to work in the same
office as my reproductive endocrinologist.
Unfortunately, even though he was only an OB/GYN, since he was
affiliated with a fertility clinic my insurance wouldn’t pay. In the meantime, I rather foolishly attempted
another IUI and another IVF, thinking since he had taken the scar tissue out,
all systems were a go! More early
miscarriages…more failure.
I did a
little more research and heard of something called ovarian drilling as a
treatment for PCOS. I was bound and
determined that all the other doctors were incapable of cleaning me up properly
inside, and I would go see this specialist, ask him to do the job, and at the
same time perform the ovarian drilling.
It’s a procedure that has less than a 50% chance of inducing ovulation,
and even less getting pregnant, but at this point, I decided I was done with
the fertility treatments. I couldn’t
take ANYMORE hormones or procedures that caused my ovaries to swell with
pain. The drilling had at least a small
chance of getting me pregnant naturally.
However, we had no means of paying for it all. So after three years of me being in and out
of employment and on and off bed rest, all the while paying in part for
fertility treatments, we ended up putting our first home, a house we poured our
hearts and souls into fixing up, on the market.
I
marched into this specialist’s office with such enthusiasm that I’d found my
savior. I told him my story, and again,
by this time another 8 months had passed since my second surgery, and the
intolerable daily pain was back. I told
him I wanted the ovarian drilling, and if he could clean up any remaining scar
tissue in my uterus (properly) as well as any endometrial implants I thought I
had a shot. He stopped me dead in my
tracks. He refused to do the drilling on
the grounds that he was concerned about creating more scar tissue on my ovaries
and causing more pain. He told me it was
time to consider giving up, and in his best judgment I should probably just get
a hysterectomy.
Like I
said, I considered it, and quite seriously.
I was enduring a lot of pain at the time. But after attending NYU, Drexel University,
SUNY Cortland and Cornell for three different majors, the only thing I was ever
sure of in my life was that I wanted to be a mom. And not just be a mom, but HAVE a baby –
hopefully several. It was the only thing
I’ve ever felt in my heart that I knew I wanted to do and be. I couldn’t give up. I also knew deep down that if I gave up then,
that I would hold such deep resentment for the rest of my life for those
incompetent idiots that had failed in my care all of those years. And not just the ones for the 3 years prior,
but all those doctors who never recognized the signs of my PCOS and
endometriosis all along, and never treated me until my PCOS had progressed to
the point where I gained 60 pounds in two years regardless of changing my diet
and exercising, and my endometriosis was getting me hospitalized for menstrual
cramps. I had to at least try one last
time with someone who I felt confident in, so that if it didn’t work after that
I could be more at peace.
I went
back into his office teary-eyed, and literally begged and pleaded. I told him that “no” was not an option. He very reluctantly agreed, and the surgery
was scheduled just 2 weeks before we closed on our house and moved. We paid for the surgery with what we made off
of the sale of our home, and moved into my mother in law’s house. Leaving our first home to move into someplace
where another’s belongings occupied every nook and cranny was not easy.
The
surgery was a phenomenal success. The
first month immediately after, I ovulated completely naturally but did not get
pregnant. The second month, I got pregnant
with our first daughter! Of course, even
that had a roller coaster start.
Initially some things were spotted on the ultrasound that were perceived as loose blood,
and no heartbeat was detected by 7 weeks.
I was told to go home and wait to miscarry. I remember very unsuccessfully attempting to
work at the coffee shop where I was employed at the time, but being set into
an emotional frenzy by every little cramp waiting for the bleeding to
start. They were convinced since my HCG
levels were so high, there had to have been a heartbeat. After a week of no bleeding, I returned to
the doctor where there was not only a heartbeat, but the source of my
astronomical HCG levels, as well as what was originally thought to be loose blood – 2 other gestational sacs! We went from one to none to potentially
THREE! Fortunately the other two never
got to the heartbeat stage, so there was no sense of loss. Because of my PCOS I had not only ovulated,
but done so 3 times all on my own. So
everything is always possible.
Since
having my daughter, my cycles have never been more regular, and more pain
free. In my entire life I never
experienced anything like it – even as a 14 year old. I continued to nurse because I felt that had
to be contributing to the hormonal balance.
I got pregnant about 15 months after giving birth, but lost it in the
first few weeks. But we continued to try
– month after month peeing on sticks, let down after let down. I would cry when I would see friends post
pictures of their adorable families, with my heart aching because I knew my
daughter would make such an amazing big sister.
I felt the clock ticking away as I knew I couldn’t nurse my daughter
forever, in what I perceive to be the driving factor in my hormone balance
right now. Finally, 26 months after
giving birth I got pregnant again, 100% percent naturally. After going through all of this, not only was
it looking like we’d never have any children, but we never, ever dreamed we’d
be able to have another.
There
are no words to describe the gratitude my husband and I feel in our hearts that
we were successful in the end, and will now have the family we’ve always wanted. Lucky?
Absolutely. Some may say
miraculous, and many say god had a hand in it all. That’s your choice to believe, but since I
don’t believe in god, miracles, etc... I can only affirm that had I not continued to search for answers, simply
rolled over and refused to take control of my own treatment, not demanded to be
properly cared for and refused to take “no” for an answer…I would be childless
today. We are ecstatic about our
upcoming arrival in May. Four years ago
I never would’ve imagined we’d be where we are today – awaiting our second
child. It CAN happen. There is always a chance that it will!
Thank you for taking the time to read my story.
