Wednesday, December 26, 2012

Giving Thanks and Never Giving Up

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 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.


Meegs said... [Reply to comment]

I know this must have been hard to share Amy, but thank you for doing so. I think your friend is right, maybe this was meant for your future self as it was for others.

Unknown said... [Reply to comment]

Thank you for sharing, even though it had to be so hard to do so.

I think it is important to put stories like this up for other women going through the same thing.

Because infertility can be a very lonely journey and it helps to know someone else out there, just understands!

Hubs and I have been on our journey for 6 years now. Hopefully with a happy ending soon in sight.

But I have gone through much of the same. Suspecting Endo and PCOS since puberty, but not having doctors listening to me.

OB's throwing Clomid and Metformin my way without doing any diagnostic testing to see if it was working. Which it wasn't and the Metformin kept my blood sugar too low since I have been constantly tested for insulin resistance and come up negative every single time.

But I didn't give up. I battled through it all, found a doctor who finally would listen. She took care of my Endo, cleared the AS that I had suffered with unknowingly for three years following my first loss.

I couldn't believe how much pain I had been living with for years, once it was all gone.

I went on a diet and exercise plan post surgery. And found that my gluten free diet meant I now had a period every month instead of only four times a year.

I felt better than I ever have and I was so close to giving up just a year ago.

I was so tired. Tired of needles, drugs, blood draws, transvaginal ultrasounds, hormones. Excitement only for it to be taken away again with another loss.

I didn't give up, but I did give myself a time out and it really helped. It gave me the energy to get back on the horse and keep battling.

The biggest thing was hubby's support though. He's simply been amazing, he always has been and on days I didn't think I could do it. He's given me the strength to keep moving forward.


I know there are people out there who think we are crazy for putting ourselves through this. People have told me to my face I'm nuts.

But you know what, we aren't crazy, we're awesome, we're amazing, we're strong. And I can only think that in some way or another we will be rewarded for fighting so hard for something we so dearly want.


Amy said... [Reply to comment]

Thank you so much for sharing your story! There is so much more I wanted to write but it ended up being way too long to begin with. My husband has been a huge source of support for me as well. It takes a strong marriage to get through things like this. But you are absolutely right - we aren't crazy! :)

The Ward Family said... [Reply to comment]

Thank you for sharing your story. I have also been diagnosed with PCOS and just had a laparoscopic and hyatersxopic procedure where the doctor said she found webbing that she had never seen before. I will go in for an ultrasound in a week to see if I have adenmyosis. :(

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