"I would do anything to have a baby! It's worth the pain." 

As I read these words, written by a fellow Endo Sister, I felt guilty and hurt. Here I was, expressing my feelings and experiences regarding infertility, and suddenly what I was willing to do wasn't good enough. 

Some might say I didn't try hard enough. Some may say I didn't give it enough time. In theory, I suppose we are all supposed to leave the door wide open, and subject ourselves to the emotional and physical assault of fighting against our bodies to try to have a baby. But even world class fighters know when to tap out. 

It's a serious injustice in our society that trying to have a baby plays such a huge role in who we are as individuals. I literally turn into one of those cartoon characters every time I read about how giving birth is the ultimate expression of womanhood. I suppose in a society where we sexualize women for entertainment and have to justify ourselves in every corner of our lives, where the major milestones revolve around sexual maturity (our first periods, losing our virginity, our first child, "the change"), we never really stand a chance. For those of us who most likely will never conceive, it feels like we are stuck in some kind of sexual limbo. Our bodies will never be changed by giving life. Any stretch marks on my body are the mark of my own making: puberty, the freshman 15, or in my case, weight gain brought on by medically induced menopause.

For years, I believed that I was preserving my fertility by not having my period. Hormonal suppression destroyed both my body and my spirit, but once I went off the progesterone-only pills, my cycle returned. I ovulated. I had extremely painful periods. I expected to be able to get pregnant, and why not? I was/am young, a mere 29 years old at the moment, but soon to be 30. I was once told by a gynecologist when I was first diagnosed with endometriosis that 30 was the magic number. A screwed up Cinderella story, get pregnant by 30 or risk never getting pregnant at all! 

Two years ago, my husband and I began our journey to start a family. Frantic at first, driven by uneducated doctors who believed getting pregnant would treat my disease. Two surgeries, a miscarriage, and likely two more very early losses later, we made the unbelievable decision to stop fighting my body. While on a weekend getaway celebrating two years of marriage, and two years trying for a child, I said no more. No more blood tests. No more drugs. No more anxious "two week wait." I'm tapping out. 

It's not that I'm giving into defeat, beaten down by life, or tired of heartbreak. My body is done. This year alone, I've had three surgeries for various reasons, but it's more than just feeling sick and tired. I actually feel pretty good, in comparison to where I was two years ago. What is really driving this decision is both what my body has been through, and what might await it if I don't stop.

Let me tell you a little about where my body is today. I've had two excision surgeries for endometriosis, and plan to have one more to remove my uterus for suspected adenomyosis, a disease which causes endometrial-like tissue to grow inside the uterine wall, causing severe cramping, bleeding, anemia, fatigue, and leg and back pain. It is also associated with several pregnancy complications, including placental abruption and early labor. I have bone loss in my spine from taking drugs I was told would "treat" my disease, but which just masked symptoms as my disease continued to grow. I have an extra 40lbs I have been unable to lose since my medical menopause. My joints hurt ever since I took one round of a fertility drug this cycle. I have 12 scars from surgeries that gave me back my quality of life, and in one case, saved my life. I have some fatigue and brain fog from who knows which cause, whether it be my disease directly or long term side effects from suppression drugs. I have a couple kidney diseases, countless aches and pains, headaches, allergies, all somewhat secondary and mostly managed well. And lastly, I have hormonal imbalances. 

We've done a lot of work over the past year with our NaPro doctors to supplement and regulate my hormone imbalances. When we started, my estradiol was too low at ovulation and too high after. My progesterone was low, but close enough to normal that we actually got pregnant! After we miscarried, I continued supplementing my progesterone while we avoided conceiving until my surgery to check for blockages in my Fallopian tubes, since it would be risking life threatening ectopic pregnancy. The day I went into surgery, I found out my estradiol was perfect! Our efforts were successful, and we were given the green light to try again when I woke up with two healthy Fallopian tubes. 

We began again with fresh hope, on the road to our "rainbow baby," and it wasn't long before my period was late again. Yet, something wasn't right. I saw a shadow on my pregnancy test, just enough to get my hopes up, but the next was stark white. For days, I peed on every test strip I had in my house, but that shadow never returned. Although four days late, my period eventually showed. 

Bloodwork came back showing my progesterone was just 6.5, dangerously below the recommended 20 for a healthy pregnancy. Lower than my previous cycle, which was lower than the one before that, and the one before that. This cycle, I went against my gut feeling and took a fertility drug meant to improve egg quality and support my luteal phase by raising my progesterone. Despite that drug, and bioidentical vaginal suppositories, I opened my lab results the second day of our anniversary vacation to find my progesterone was at an all time low...and so was my estradiol. Now, both results were abnormally low, but this time, I also had severe joint pain that made it nearly impossible to use my right hand and arm for weeks. It was all for naught.

I know many people will question why I didn't try IVF. Our decision was complex, a mixture of contraindications and gut feelings. Risk of ovarian torsion and overstimulation, risk of going under anesthesia for a fourth time in a year, a deep, gut wrenching instinct that it just wasn't the right choice for us, and something else. 


A feeling of being called to adopt. 

I've always wanted to be a mother. My husband asked me years ago, while I sat in tears discussing why I wanted so badly to try for a baby, "What about your career? Don't you want to work on that first?" No...I'd give up my career in a heartbeat to be a mom. I went to college and received my masters degree because everyone has a place in society, and I loved working with children, but my heart's true desire was to have children of my own. 

It is devastating to not have that wish filled by a biological child. I'll never feel a kick inside my body, or know what it's like to be utterly uncomfortable and exhausted at the same time as complete joy and fulfillment. I'll never push through 36 hours of labor and struggle to guide my child toward my breast for the first time, desperate that she latch on and learn to nurse. I'll never sit in the middle of my friends and family, tying ribbons around my belly and opening precious little baby socks and diaper cakes. I do so very much want those things. But there's something I want even more.

A healthy body. One that is able to care for my children, whom I will have someday. Born in my heart, carried home perhaps at six months or two years old, cherished and nurtured and loved. I will raise my children with the knowledge that I put their needs above my own desires. They need a mom, whole and happy, and not beaten down by life and medical procedures. Not pushed to the brink by miscarriage after miscarriage because the pregnancies just wouldn't stick. 

When you go through parenting preparation courses, you discuss legal risk and the potential emotional roller coaster of adoption. Building a family when you have infertility isn't easy, no matter how you end up doing it. I know one thing, though. 

This is the risk I AM willing to take. 

I'm not willing to risk more bone loss. I'm not willing to risk the progression of my disease by increasing my estradiol via supplementation. I'm not willing to risk the breaking of my heart when I tried so hard to achieve a pregnancy only to lose it again. I'm not willing to push myself past what my spirit can endure. I know in my heart that something is telling me it's time to let go. My body cannot do it, not right now. Not after what it has been through. My body needs rest. My body needs pampering. My body needs me to focus on something outside of itself. 

My body needs hope. My spirit needs hope. And somewhere, there is a child or two who need that hope as well. 

I will be that hope. Every step in my life has led me to this moment. The moment when my husband held me in his arms and let me say no. "I'm all done. It's time to stop." 

It's ok to say no. It's ok not to take the next step. If your body is telling you, no more, it's ok to listen. 

Recently, I went to an appointment with one of my specialists (not endo related). After sitting down and saying hello, he tried to refresh his memory about my case. "Oh yeah, you're the one with Endometriosis. Oh man, didn't you have a severe case? Yes...oh wow, now I remember, you have EXTENSIVE disease." Then I reminded him of my other issues, and got the typical shocked reaction. 

Being a patient with multiple, complex diseases and a lengthy medical history, I'm not surprised when doctors become overwhelmed with my information. This is something I've grown accustomed to. I know I'm "weird," as I would put it, complex. I continued to go over my diagnoses of adenomyosis, renal tubular acidosis, and medullary sponge kidney. As we were reviewing my long list of medications and supplements, my doctor stopped me, asking why I was taking a few of them. "They were recommended by my fertility doctor," I explained (so he didn't think I just ran to the vitamin store and threw a bunch of stuff in my basket). Then, he said something that nearly knocked me off my chair. 


"Should you be trying to get pregnant? I mean, even if you do get pregnant, what would that be like??"


Whoa. Harsh.


I tried to recover, and gracefully replied, "Um...probably difficult, but my husband and I still aren't finished trying for a biological child, although we have started looking into adoption." 


The rest of the appointment went fine. I got some good news and some not so great news, and left with a plan moving forward. Yet, as I climbed into my car, raining pouring down outside, I couldn't shake the feeling those words left on my skin. That feeling of disquiet, of judgement, of somehow doing something I shouldn't. 

There are an awful lot of "shoulds" being thrown around in the medical field, especially when it comes to treatment of endometriosis and pregnancy. At age 18, I was told that because of an SI injury, I would likely require bedrest for any pregnancy I might have. Since age 22, I've been told I "should" get pregnant, as soon as possible, that it would cure my disease by resetting my hormones (which, by the way, is an absolute myth, and a cruel one at that; it is often difficult to become pregnant with endometriosis with the inflammation and anatomical distortion that come along with it, let alone the hormonal imbalances and ovarian dysfunction that can result from traditional hormone treatments). 


My husband and I let the "should" of conceiving turn our lives upside down when a doctor told us two years ago that we should get pregnant immediately if we ever wanted it to happen. Over the years, I've been told I should go to this doctor or that doctor, I should trust my doctors implicitly, I should try natural remedies, I should meditate, I should work less and eliminate stress on my body, I should relax and let things happen the way they should, I should worry less, I should have fun with trying to conceive, I should take the aggressive approach and do IVF because I have stage IV and I obviously could never get pregnant on my own, I should have sex every other day no matter how much it hurts, I should only have sex within a short window determined by peeing on a stick, I should not worry about when I have sex because then there's too much pressure, I should let a doctor push and pull my hormones based on his or her typical protocol despite my personal (negative) history with ovarian stimulation, I should exercise more, I should exercise less, I should stop thinking about it so much, I should think about it MORE, I should, I should, I should!

 And then there's the phrase I absolutely hate the most:

"You shouldn't try to get pregnant. You'll pass your bad genes onto your children. How selfish."

I'm not joking. People have said this to me. More than once. 

I could go on and on about why this statement is misguided (and extremely insensitive). But what it really boils down to is it is none of your damn business whether or not I procreate. I have an incurable disease, yes. I also have severe allergies, and a terrible sleep pattern, and a horrible addiction to chocolate, but I will love my child more than you can ever possibly fathom, and would do everything in my power to make sure that if my child displayed symptoms of any of my diseases, I would get them to the BEST possible care available, and pass on all of the knowledge I have so they can live a better life than I did. 

The kicker in this situation, however, is that it wasn't said to me by someone who didn't understand what they were talking about. This was a doctor that I go to for medical care, a doctor that I happen to like and trust. To be questioned about whether or not I should continue to try for a biological child, as if he was asking me whether or not I should continue to eat red meat, was not only inappropriate but completely unprofessional. Whether I should or should not try to have a child is completely up to me, my husband, and my fertility specialist. 

As it would happen, I had considered a hysterectomy earlier this year to eliminate pain from adenomyosis (a hysterectomy won't help endometriosis, but it can relieve pain associated with adeno). I was questioning whether or not I had hit the end of the road, whether my body had had enough, and I asked my surgeon to tell me what to do. He said something that just reaffirms that he has my best interests, both physically and mentally, at heart. 

He told me that if I had any doubt in my mind, I should not take away my chance at having a biological child. Even though he knew the extent of my disease and the toll it had taken, he continued to support our desire for a biological child, and would not even think of putting his opinion into the equation (despite my great desire to be told what it was!). 

I wish I had explained to the doctor who questioned my decision about the fact that I'm nearing the end of my journey trying to conceive. Yes, my body has been through a LOT (five surgeries in two years, two of which were emergency surgeries in the last 6 months). Carrying a child to term with my adenomyosis and back issues would be difficult, but I knew that going into this. I never thought it would be as difficult as it has been, but I also never thought it would be easy. Being a mother never is. 

When my husband and I discussed trying again after our first miscarriage, my NaPro (fertility) doctor asked me how I felt about it. I said I was kind of nervous, and very anxious about what problems we might face, especially knowing that after one miscarriage, the chance of another goes up significantly. He said something that almost made me cry. He explained that I was making a sacrifice by being willing to carry my child. I was not only sacrificing my body, but also opening myself up to the emotions of what might be. To continue trying would mean opening myself up to heartbreak, along with the medical complications, but that I was willing to do so because I wanted to be a mother, and I wanted my baby. And that was the least selfish thing I could possibly do. 

So, should I keep trying to get pregnant? That's a really great question, and it's one that takes a lot of consideration and deep reflection to answer. This month, I have begun what I believe is the last leg of my journey. I have taking a drug that will hopefully help us conceive. It is often prescribed to women struggling to get pregnant before moving on to more aggressive approaches, like IUI or IVF. If it doesn't help us, I'm pretty sure I will be finished trying. Despite what some might think, I do know my limits, and I believe this is as much as my body can handle. 

I don't know what the future holds for me and my husband, but I do know that we made the decision based on what we feel in our hearts, not what someone said we should do. 

So the next time you have a conversation with someone about fertility, no matter what your opinion is on the matter, just be supportive. It doesn't matter whether you believe they should or should not do something when it comes to having a child. If you find yourself about to mention what you would do in their shoes, don't. Trust me. That's one should that you should just keep to yourself. ;) 

Dear Shutterfly,

You have once again left me hovering between anger and despair after receiving an email advertisement urging me to order a photo book of my baby's sweet face and her first moments. 

I don't have any photos of my baby's sweet face, or her first moments. I can't fill my home with memories of my baby's first year because my baby did not survive past 6 weeks gestation. The photos I have documenting my pregnancy still bring tears to my eyes. I have an empty nursery decorated with handmade curtains and carefully selected mementos of trips taken to Disney with my husband, a quilt made by my mother, an afghan made by my grandmother, a wooden key whittled by my late grandfather.   

This nursery exists because I couldn't bare to look at that empty room any longer after I lost my first pregnancy, a pregnancy I had desperately longed for, battling stage IV endometriosis, for which I have had three surgeries in two years. That empty room reflected my empty womb, devoid of life, a reminder of my failure. I've since decorated it and find hope and peace imagining a day when it will be filled with the laughter of either a biological child or a child born in my heart through adoption. 

I suffered an early loss, and unfortunately made the mistake of signing up for an account on The Bump to track my pregnancy before we really knew whether the pregnancy was viable. I guess I was just so overjoyed at finally, FINALLY getting my wish! So eager to plan for my long-awaited child. But like many women, I found out it was premature, as was my baby's departure from this world. 

I left a message as to why I was canceling my Bump account after my loss, in the hopes that they might have some keyword trigger that would stop the flood of ads for diapers and chord blood banking. Silly me! I had hoped when I cancelled my account with The Bump and requested to opt out of any future emails, I might have spared myself the heartache of receiving updates of how far along I ought to be (as if I wasn't still counting the weeks leading up to my due date). A few weeks before my due date, I received a packet of magazines geared toward expectant mothers, which I threw into the trash immediately. A little pang hit my heart, but I pushed it aside. I received an offer for a free breast pump, and actually considered ordering one anyway, you know...for the future. Heck, I might need it someday! There's still hope! For the most part, though, the ads stopped coming when I opted out...but not yours. 

No, Shutterfly has sent me multiple ads now, although I swear I opted out months ago, reminding me of my early loss and the baby that should be keeping me up at night. In particular, there was a beautifully thought out hard copy ad welcoming my newborn into the world (don't forget to document these early days and save on a photo book!). Really, the quality of that ad was top notch. Instead, I'm up tonight with insomnia, fired up because of your emails.

The straw that broke this camel's back happened in the last 24 hours. I was frustrated, but assumed I must have forgotten to submit my request to be taken off the mailing list, when I opened the email yesterday. It's possible that I misremember...it was a hectic time, and there were so many emails to opt out of. It is truly overwhelming how many companies swoop down on expectant mothers! 

I don't need or want any more of your reminders of where my baby should be today, and all the moments I am NOT documenting and ordering prints of from your website. Yesterday, I opted out AGAIN from receiving "valuable money-saving offers and exciting promotional emails" because I did not want my loss rubbed in my face any longer. I need to focus on the future, and hold onto hope of future motherhood.

Yet, early this morning, as I chatted online with other women struggling to conceive and considering adoption, that familiar ping went off signaling I had another email from Shutterfly. And what do you know...another email urging me to "fill your home with memories of your baby's first year" and turn my birth announcement into a piece of art.

Less than 24 hours after I opted out. 

Shutterfly, this has to stop. On November 30th, just two months from now, I will be faced with the anniversary of the greatest loss I've ever experienced, weeping in my bathroom as my baby slipped through my fingers like so many grains of sand. The last thing I need is an email showcasing your wonderful photo books and souvenir mugs at a 25% discount PLUS FREE SHIPPING! 

When a customer opts out, please...stop sending emails. Offer a space for the person to list the reason they are opting out (because I do enjoy ordering photo books for my wedding and vacations!), and maybe you will spare thousands more couples the heartache of remembering what might have been. 

Please...keep in mind the 1 in 4 pregnancies that end in miscarriage, and change the way you market to expectant parents. 

And maybe, just maybe, I'll utilize your services when I really DO have a sweet smile to cherish.

Sincerely,
A Valued Customer 

Dear Jellybean,

It's 5am and I have had severe insomnia for days. I should be awake in the middle of the night for a whole different reason...

You. 

You should have arrived today, whole and happy and perfect. Today, I should be exhausted and aching bringing you into this world, but instead, I'm wide awake and aching FOR you. 

No one ever warned me when I started on my journey to bring you into this world how unbelievably empty I would feel if I couldn't. I had struggled for years with a terrible disease, but never had I felt the pain and anguish of having you slip away. 

And yet, for that short period of time, you brought me incredible joy. You brought me hope that I could conceive a child naturally, after so many doctors told me that was impossible. Trying to conceive a child with stage IV Endometriosis, I was told time and time again that I would never have a child without invasive fertility treatments. 

But there you were. Five months after I had excision surgery, just two weeks after starting our journey with NaPro technology, there was a tiny pink line on a test strip. You proved to me that supporting hormonal imbalances naturally was worth pursuing...but also that I had another choice available to me.  While I never looked into your eyes, you touched my life in a way no one else ever will.

Today, I cry tears of a mother with empty arms, but I also hope for a future filled with joy and laughter. I hope for sleepless nights spent cradling a miracle in my arms, whether born through me or brought to me through adoption. You slowed my frantic race toward pregnancy, and instead set me on the path to motherhood. You opened my heart to the possibilities of parenthood I had never really considered before, and brought to me a peace I had not known until you lived within me. You opened my heart to the possibilities of building a family in whatever way might come to pass...and for that, I am truly grateful. 

Today, I will cry. I will wrap myself in your father's arms and think of what could have been.

But tomorrow, I will raise my eyes to the heavens and hope for what is meant to be.

I miss you with all my heart, my little angel.

Love Mommy