A Hope Unchanged

Last week, I found out I need a hysterectomy. This is the story of how I got to that point.

Last week, I found out I need a medical hysterectomy.

I thought of a few different ways to share this news. Maybe I should share more of the story first and then drop the bomb. Maybe I shouldn’t share anything at all. There’s a lot of emotion that comes with the news, and in such cases, sometimes the best way is just to say it, blunt and honest, and go from there.

I’ve always written about my fertility journey with openness and honesty. I’ve shared about abstinence, surprise babies, birth trauma, unwanted C sections, frustration with finding the right methods and on and on. At first it was just a cathartic exercise, making sense of my own experience in words, but then it turned into something more. Women found a lot of comfort in reassurance in what I shared. In my words, they found out they weren’t alone. Hearing and reading that became its own form of catharsis, one that I started to chase until it led to my own burnout.

It would feel disingenuous if I didn’t share more about this new chapter of my story. Admittedly, when I first started writing years ago, I did it to find community. I found that I too wasn’t alone, and that was a great comfort. I’m not writing to find solidarity for myself now. I am surrounded by so much love in real life I no longer look for it in an online setting. I’m writing so that someone out there, even if only one person, might find something in this story that resonates with them, and that when they find it, they feel less alone.

When I look back on my fertility journey, I keep thinking of those text memes pulled from Reddit, the ones where the response to a crazy story goes something like, at no point in this story did I have any idea where this was going. Eight years ago, I was sobbing angrily at God asking him whether his plan for me was to keep having babies back to back with repeat C sections and then die. Five years ago, I wondered if I’d ever have another child without surgery. Two years ago, I was worried about navigating perimenopause while trying to avoid pregnancy. One year ago, I was praying that our circumstances would change so that I could give our daughter the little sister she keeps praying for. Yesterday, I told her that little sister would never happen. You better believe I’ve asked God point blank if he has ever done crack.

But that’s not the whole story. Woven in between those snippets is what I can now say is an exquisitely beautiful tapestry that sings of the love of God. I know that the woman I was eight years ago would roll her eyes to read that sentence and probably immediately scroll out of this post. And for that, I feel even more grateful to God for all that he has done for me to bring here since that time.

After each of my C sections, I started to notice more severe cycle symptoms, bleeding and pain. Two surprise pregnancies dulled any worries I might have had at the beginning of marriage about my child-bearing prospects. After our second surprise, I figured my problem wasn’t going to be infertility or cycle issues. My problem was going to be one of carefully but impossibly avoiding pregnancy so I didn’t die. I dubbed myself hyperfertile.

Two years after my second was born, my husband and I started trying for our third. And by trying, I mean we broke rules. Naughty. Fun. The fun was short-lived. One negative pregnancy test followed another. I laughed at the first. I was seriously worried by the sixth. Someone asked me if I had been evaluated for an isthmocele. I felt nothing but rage, an emotion so out of proportion that I scheduled an appointment with a therapist who I saw for the next two and half years.

In that time, I unpacked what turned out to be a pretty jacked up view of who God was. I came by it honestly, but it wasn’t honest. Through the years of my life, there was a formidable fortress that was built in my heart. During those two and half years, that fortress was taken down, brick by brick, gently and slowly. In its place is now a homey picket-fence with a gate that opens both ways.

A year and a half of secondary infertility later, I became pregnant with our third, our absolute maniac of a miracle who is the gift we all needed. But he was born via a repeat C section, something that turned out to be completely providential at the time. In these three years after his birth, severe consequences of those C sections have presented themselves.

It started with pain during ovulation. In all my work, I never read about this much as a cycle-related symptom, though when I shared it with friends, several told me they had the same issue. The textbooks say pain is usually only present during periods, and it was always a sign that something was wrong. Sure, I knew about mittleschmirtz and had identified the sensation plenty of times. But this was more than that. It wrapped me in what I called an inner tube of pain, sometimes for days. Then there was the bleeding. For a while, I switched to menstrual cups to try to save money on products because I was using so much. I reached out to a friend asking her how she changed them out. When she replied that she did it in the shower, I quipped back, yea, but what about the other six times each day. A clue, Sherlock!

Every cycle, I started doom-Googling when I was in pain, typing in my symptoms see what the good ole internet had for me, desperately searching for answers. I knew better than to go to the average OBGYN for answers, and I wasn’t ready to go down the road of restorative reproductive medicine. My work is a great gift and blessing to me, but the level of knowledge I have acquired is also a kind of curse. I know the hell this road can be. I’ve heard about it from probably thousands of women. Every cell in my body was against taking a step down that path.

Two years ago, the status quo became more painful than the change. I decided I’d start with the least invasive option and escalate as needed. I found a pelvic floor PT, and for the next 6 months, I ended up working through the remnants of physical trauma I still held from my birth experiences. The exercises also helped me manage the pain a little, but the change wasn’t enough. It was time to escalate.

I met with a FEMM instructor who was local to me, and in the course of our conversation about our work, I mentioned my symptoms. She encouraged me to reach out to a FEMM doctor she knew. I scheduled the appointment almost immediately.

After bloodwork and ultrasounds, I was diagnosed with insulin resistant PCOS, with red flags for endometriosis and adenomyosis. I followed her prescriptions for managing PCOS. Logically, everything I was doing should help alleviate pain as well. Instead, the opposite happened.

By Christmas, my pain levels became debilitating. The psychological impact became unbearable. Pain is always easier to manage when it has either a name or a purpose. I lacked both. The lead up to every period and ovulation felt like impending doom. I started canceling plans last minute. I had a talk with myself about ramping down the doom-Googling. I was no longer able to exercise with any regularity. I asked my husband and kids for help with basic stuff twice a month. Despite losing nine pounds, I went up two pant sizes, in this dedgum economy. I was prepared for the journey with FEMM to produce either small gains or none at all for a while. I wasn’t prepared for things to devolve so dramatically.

It was time to find a surgeon, even though surgery terrifies me. Nothing like two traumatic C sections to put you off pelvic surgery for life. I mustered up the courage to call a Napro surgeon, but there was a waitlist of five years. I asked my doctor for suggestions, but the surgeons she sent only did ablation. I had a friend who suggested her surgeon, but I couldn’t even know her availability till June at the earliest. Feeling completely desperate, I googled “endometriosis surgeon near me.” I found an organization called Endo Excision for All, with a tab for qualified surgeons listed by state. I found the surgeons closest to me and was blown away by what I found on their website. Their approach was collaborative and comprehensive. The initial consultation was scheduled for an hour and included an ultrasound that could see deep infiltrating endometriosis. I sent the website to my good friend Mary Bruno for a second opinion. It seemed almost too good to be true. Mary is a Creighton practitioner and has personally had 11 Napro surgeries for endometriosis and adenomyosis. She loved what she saw too. Sold!

Two months after I called to schedule a consultation, I was sitting across from my surgeon discussing my symptoms. I was treated with sensitivity and respect, and I was taken seriously. I imagined two outcomes of the appointment. The first, that I would need surgery and possibly a hysterectomy, which offered a definite solution but a lot of emotions to sort through. The second, that an ultrasound would show nothing and I’d be back to square one, desperately finding some diet or pain management technique I hadn’t tried to try to get some semblance of my life back. I desperately hoped for the first outcome.

An ultrasound was part of the appointment, and barely a minute into it, the surgeon said the a-word: adenomyosis. A wave of relief and disbelief spread over me instantly. I wasn’t crazy. I wasn’t exaggerating. I had a name. And I had one definitive way to make the pain go away.

I had discussed concerns about my C section scar, and the ultrasound showed that I did indeed have an isthmocele. There was another name, another affirmation that I wasn’t crazy. It seemed adenomyosis was the cause of pain and severe bleeding during my period, and the isthmocele was the cause of post-menstrual spotting and pain during ovulation. A one-two punch.

There was some good news. I didn’t show any signs of deep infiltrating endometriosis, though the likelihood of surface endo wasn’t ruled out. I didn’t seem to have serious scar tissue as all my organs were moving as they should, something I was deeply concerned about after three C sections. And my ovaries, to quote my surgeon, were beautiful.

My darling Nicholas came with me for the appointment. I knew I was going to hear and discuss a lot, and I didn’t want to have to relay everything to him after the fact. I wanted us to have all the information first hand and make a decision together. A dear friend kept the kids so we could go together. We didn’t decide on surgery during the appointment. We needed to take time to process and discuss everything first.

On the drive home, I told Nick I needed to do something fun with the kids that day. He suggested a hike, followed by ice cream and home-made Korean barbeque for dinner. It was the perfect day. My kids were insistent every step of the way to pick me wildflowers. In light of the news I had received, I looked at them through eyes that cherished them far more than I had even that morning. I thought back to myself only eight years ago, the woman worried she’d be some crazy fertile myrtle who’d never be able to avoid a pregnancy, and I gave thanks and praise to God for these beautiful gifts he had given me. I could look back now and see that maybe all of these issues were lying under the surface, and each of these children was even more a miracle. I wondered if God gave me surprise babies because he wanted me to have these babies right now in this moment, as I processed giving up the possibility of ever having anymore. I held back tears.

I felt anger too. I wondered what would have happened if I had been given options before my first C section. I didn’t let myself dwell on that too long. Over the years, I have come to hold to the truth that God can take even man’s mistakes and missteps and weave something of unfathomable beauty out of it all. Maybe I wouldn’t need a hysterectomy now if I hadn’t had a C section then. But I also wouldn’t be here. I can echo Pierre from Tolstoy’s War and Peace:

“People talk about adversity and suffering,” said Pierre, “but if I were asked at this moment whether I would rather be what I was before I was taken prisoner, or go through all that again, my answer would be: ‘For Heaven’s sake, let me have captivity and horseflesh!’ We imagine that when we are thrown out of our accustomed grooves that all is lost, but it is only then that what is new and good begins. While there is life there is happiness. There is much, so much before us.”

This was definitely not the way I thought my fertile years would come to an end. I imagined white knuckling various NFP methods and biomarkers through those waning perimenopausal years. Now I’m wondering how I will navigate that period of my life without a whackadoodle cycle for clues. And because I am putting this out on the internet, I am obligated to add that I don’t think a hysterectomy is the way all women should address adenomyosis. Right now, this is the only solution medical science gives us that completely alleviates symptoms. Yes, I agree that’s sad, the same way I think that birth control is a sorry excuse for medical care. Women’s health care needs a lot more work and the work is starting. Just this morning, I saw the news that PCOS finally got a newer, more accurate name.

But right now, my focus is different. It’s not on advocacy or anger, though both of those things have had their time and place in my story. It’s on one thing: hope. Before last Friday, I had hoped that God would change our circumstances, that one day, we would be able to try to achieve a pregnancy again. I had faith that God could and would do that, if it was what was best for us. I saw my daughter’s desire as a sign that maybe one day that would happen. After all, the prayers of a child are insanely powerful.

I am at a point where in order to take care of my living children to the best of my ability, I have to give up the possibility of bearing any more. There is a definite grief that comes with that. The day of the appointment, I felt mostly relief. The next morning when I woke up, the sadness hit. There is a finality to a hysterectomy that is a lot to take in. But it is a reality I am willing to process because of my living children, these precious persons who I didn’t plan, who are here giving me so much comfort and strength as I navigate this new reality.

My hope before Friday was that God could take a broken and difficult situation and turn it into something beautiful. And after Friday, that hope hasn’t changed, much less been disappointed. There is such a deep peace that this is the right decision. Peace is not the assurance that hard times won’t come or that hard times will be made to feel easier. Peace is the assurance of God’s presence. In my darkest hour, I asked God to ensure an outcome. What he gave me instead was the confidence that he was with me. That was a greater gift than any outcome I could imagine, God with me. Emmanuel. Since Friday, I have experienced one consolation after another.

Most of all, I have been blessed to know the hearts and minds of many women who suffer from infertility who I get to claim as dear friends. I have been thinking often about them and the many women who suffer from infertility who I have met through my work. I cannot imagine feeling the physical pain I have felt and bearing it all for years and years in the hopes that I could bear a child. Instead, I have three children, and I can say that I have to give up any chance at more for their sake. I am not unaware of the tremendous gift that is. The witness and example of these women to me of spiritual motherhood, of fruitfulness that goes beyond the womb, of finding faith in the midst of suffering has been an incalculable source of strength for me. If you are one of these women, please know that I am speaking of you.

Throughout each one of my experiences, God has tilled and weeded, pruned and cut back, and laid much good seed in my soul. In the past year, I have been on such a roller coaster that I have had to cut back much of my work in order to take care of my more immediate responsibilities, namely my family. A few weeks ago, I had a complete meltdown in prayer, telling God that something had to give, that I could no longer continue on doing what he had called me to do with my body attacking me and my symptoms getting worse. He has given me an answer and path forward. Not the one I imagined, not one that I believe he wishes to happen, but one that he will still make beautiful.

My Master Kintsugi Artist didn’t want his little pot to be broken, but he’s more than happy to put the pieces back together. And his little pot has learned that her Master Artist can only work with the pieces he is freely given. So she happily gives them all.