"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. 

As some of you might know, I had emergency gallbladder surgery last week, just 10 weeks after my excision surgery for endometriosis. This makes 5 surgeries in just over 2 years, which feels like...a lot. As you might imagine, my husband and I have sort of created a bit of a routine for making recovery as smooth as possible. Here are our tips:

1. Be prepared!
Of course, there's no real way to prepare for a last minute surgery, but the more prepared you can be, the easier your recovery will be. Whether you are having local or out-of-state care, there are a few things you can stock up on beforehand so that you will have everything you need at your fingertips after surgery. Reducing trips to the drugs store is definitely one way to keep your recovery period as stress free as possible! Check out our blog and video of what to pack to be prepared. 

2. Schedule to have help during the first week
The most important thing to have during your recovery is someone to help you through the first week. This might be a spouse, friend, family member, or even a home health aide. Whether you have a simple diagnostic surgery or a complex case that involves organ removal, you're going to need help getting home, moving around, cooking, cleaning, and monitoring for complications. A caregiver can help keep track of your medications, make sure you get an appropriate amount of exercise and rest,  and stock your fridge with healthy meals that can easily be microwaved. If your caregiver is able to work from home, this is a great option so that they do not need to take sick time or family leave. 

3. Keep moving...a little at a time!
Although it may sound counterintuitive, getting up and moving every two hours promotes healing and helps eliminate gas pain (gas which your surgeon uses to inflate your belly during surgery may remain and cause pain). Start slow, and make small goals, like walking on your own to the bathroom, then the hall, then the nurses' station. While you're in the hospital, nursing staff will help you with this part, but you should keep it up even after you are discharged. I find it refreshing to go for a daily evening walk, say around the block, once I feel up to it. It really helps to get out of the house, even if it is only for 10 minutes. 

4. Be flexible
You may have had some idea of what your recovery might be like when you scheduled your surgery. I can tell you that it can be upsetting to wake up and find out you have several days in the hospital you hadn't planned for, or complications happened and you'll need to wear a drain tube for a couple days. Surgery is unpredictable, even with the most skilled hands, so expecting your recovery to be picture perfect is setting yourself up for disappointment and frustration. Your doctor may have told you that you could return to normal activities after a certain number of days. Don't hold yourself to these expectations. Each surgery is different and each recovery is different (trust me...none of my recoveries have felt the same!). I typically try to plan to be at home for 2 weeks after surgery. Even if you feel better, remember that fatigue is common after surgery. Just like the previous tip, take things one day at a time and make small goals for yourself. If you have a more extensive surgery, you may even want to schedule 4-6 weeks at home after surgery, and may want to return to work part time at first. 

5. Have some savings to cover any loss of income
If you are self-employed or do not have paid sick leave, you'll want to make sure you have a financial airbag in place. You don't want to rush yourself back to work before you are completely healed, and having some savings to fall back on will ease this burden. 

6. Splint Your Belly
No one told me about this tip the first time I had surgery, and I couldn't understand why I was in increasing amounts of pain. Your abdominal muscles need to heal before they can comfortably support the pressure of holding you upright. Hugging a pillow to your belly or wearing an abdominal binder when sitting up and walking around makes a big difference! Also, you may think that returning to a desk job will be easier than a job where you will on your feet. Not necessarily. Sitting upright puts a lot of pressure on your abdominal muscles, which have been cut during your surgery. Putting too much pressure on your belly before you're healed can become very painful. Like everything, take things slow!

7. Avoid clothes that put pressure on your belly
Long, flowing dresses, leggings and tunics, or drawstring/elastic waist shorts/pants are the most comfortable. I find these to be essential during recovery. I also avoid bras with underwire for a little while. Whatever you wear, just make sure it is comfortable!

8. Pamper yourself when you can
If you know you're having surgery, maybe you get a nice haircut beforehand. Maybe you have a friend come over and give you a mani/pedi while you're resting at home, or check out a new book and some movies from your local library. Be kind to yourself, and do something special that will makes you feel good!

9. Make a little "nest" where you'll be resting
Ok, this sounds silly...but hear me out! After you've had pelvic or abdominal surgery, it can really hurt to roll or be jostled in bed. I make myself a little nest of pillows and bed bumpers so that I am not involuntarily tensing my muscles. I also have some comfort items nearby (Ruby, of course, and my 1 liter double walled mug they gave me at the hospital!  I don't know why it comforts me, but it does). Make this space your oasis, full of things that make you feel calm and happy. You might even use some aromatherapy to keep your mood lifted. 

10. Don't be afraid to call your doctor
After my first surgery, I called my surgeon's office almost daily. Was it normal to have so much pain? Is this drainage healthy or sign of infection? When do I remove the steristrips? What's that little string in my incision? Obviously, if you have a lot of questions, you should schedule an appointment to speak in person, but the office can answer any quick inquiries pretty easily. While your first instinct might be to ask in an online support group, your health care is ultimately a matter to discuss with your physician. Surgeons typically have an on-call doctor after hours that patients can call with questions. However, if you have a doctor who is not helping you post-operatively, it might be time to find someone who will. 

11. Trust yourself!
You know your body best. If things don't feel right, follow your instincts. Listen to your body when it tells you it needs to sleep all afternoon, or you're worried something might be wrong. Keep the lines of communication open with your surgeon, and trust your gut! ;)

I hope these tips help you as you heal! Good luck with your recovery, and please share any tips that have helped you after surgery for endometrisois!

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

We are slowly post-processing photos from our trip to Disney World, where our mascot Ruby the Endo Roo broke the ice and started lots of conversations about this misunderstood disease, endometriosis. Here are a few of our first photos and some awareness posters we made using our favorite kangaroo! Please share and spread the word...let's get people talking about endometriosis! Stay tuned for more!

Just a little humor inspired by my slacker uterus, which apparently thinks it's perfectly acceptable to cramp like a bear trap with absolutely no productivity. I'm thinking of naming her Toby. I guess I'll just get all cozy with my rechargeable hot water bottle, watch some Game of Thrones, and hope she doesn't see this post and get REALLY bitchy. :/