Walking through pain.
5.27.20
I've talked about it already, but I have endometriosis, a disorder in which tissue similar to the tissue that normally lines the inside of your uterus- the endometrium, grows outside your uterus. It attaches itself to other pelvic and abdominal organs, causing scarring, lesions, adhesions, and cysts. This illness has impacted Nate and I in more ways than I could have imagined, causing us to ask so many questions about pain and the purpose of circumstances like these.
In December of 2018, Nate and I visited Dr. Kanayama at the New York Endometriosis Center, and within two hours, our suspicions of me having endometriosis were confirmed and a surgery was booked for January of 2019. After literal years of searching for answers to unknown pain, we suddenly knew so much about what was happening in my body. The ultrasound showed that my uterus was twisted and leaning to the right side of my body at a 45 degree angle, likely being pulled down by endometriosis adhesions. It was crushing my right ovary underneath it, and my left ovary was essentially glued to the top of my uterus up in the center of my stomach. Everything was pointing to endometriosis, and we finally had answers to the intense pain I had been experiencing for years.
In January of 2019, I went in for a laparoscopic excision surgery, and Dr. Kanayama and his team found seven different types of endometriosis throughout my pelvic region, hidden in several different layers of endo. There were pools of toxic blood that had been building up in those hidden layers as well, which were just going back into my body and essentially poisoning me throughout the whole time, contributing to other symptoms I had been experiencing. They removed everything - every last bit. Adhesions that were gluing my organs together and pulling them in directions they weren't supposed to be going were removed, the endo was all removed, and the toxic blood pools were drained. When I saw Kanayama in the recovery room, he looked at me said, "When I cut away the adhesions, your uterus popped right back into place and is so shiny and beautiful now!"
That surgery was life changing for me, and for Nate and our marriage. We will forever be grateful for Dr. Kanayama and his team for their skill and care, and just doing what they do best. It's been truly incredible, and while we still have a bit of a long recovery road ahead of us - there has already been such a major shift in our every day lives and we are so thankful for that.
Leading up to that day of diagnosis was difficult for us. Though I had been dealing with symptoms and pain long before meeting, dating and marrying Nate, things suddenly got so much worse the day of our wedding. Everything took a drastic turn, and from day one, Nate and I felt like we were in a battle for my health and our marriage.
Our wedding was July 22, 2017 - it was beautiful and I loved it. I remember all the small details that made me smile, and still do, and I remember the joy and anticipation I felt on that day. I remember seeing Nate at the end of the aisle and tearing up and trying not to sob, because I was overwhelmed with the Lord's goodness in our lives. It was also a hard day. I got sick right after our ceremony while we were taking bridal party photos, and I was experiencing symptoms I had been experiencing the previous months leading up to our wedding that had been getting worse. I had stomach cramps, was incredibly nauseous, threw up at one point, and spent the first half of our reception in pain and holding back tears. It was not how we expected things to go.
I remember our bridal party gathering around Nate and I outside as we were trying to take bridal party photos. We had to stop because I was not feeling well, and they had gathered around us to pray. It was caught on camera, and I'm so grateful for that photo. Every time I see it, I am filled with gratitude because I feel like the Lord was showing us even in that moment that He was going to always surround us with community to pray with and for us and encourage us and support us when we felt like we couldn't keep going.
When we look back on our wedding day, we feel as though it was indicative of what the first few years of our marriage were going to look like. And I don't mean that in a dramatic way, but just as we look back, it honestly kind of was the start of everything that we've had to work through and fight for so far. The day was filled with so much beauty, laughter, and joy; and at the same time it was also filled with frustration, pain, anger, and questions.
Endometriosis and the pain that has come from it have been hard. Our first two years of our marriage were filled with so much discouragement and hopelessness, and even now we have days or moments filled with pain. For the first five or six months of our marriage, we spent the first few nights of every period sleeping on the bathroom floor so that I could be closer to the toilet. My pain and nausea were through the roof and I would throw up for a couple days. The pain I was experiencing mostly just around my periods eventually began to seep into other days outside my period. Over the course of the first year, my pain became more and more intense and emotionally and mentally, I was not well. I struggled with depression and anxiety, and it soon became as much of a problem as the physical pain.
In addition to these things, we were struggling with our sexual relationship, which we never expected to happen. I found out I had vaginismus, an involuntary spasm of the muscles surrounding your vagina, making it impossible for anything to enter. Intercourse was impossible for us, and the more we tried to make it work, the more it hurt me physically and the more discouraged we both became.
There came a point where we both gave up. We gave up trying to have sex, and we gave up just even being physical with each other in any way. We were so incredibly discouraged, and we felt hopeless. We had no idea what to do, and nobody we knew was dealing with these same issues. It felt like we were being attacked on all sides, and we were so overwhelmed with it all that we just didn't even know where to start some days or what to focus on. Most days I think we were both just tired trying to manage my endometriosis pain that we had no energy to try and do anything about our sexual relationship.
In all of the endo pain, vaginismus, broken sexual relationship, anxiety, and depression- we had so many questions. I spent HOURS crying out to the Lord in prayer begging for healing and asking for answers. I bartered with the Lord for Him to take my pain away so that I could live my life again normally. I begged Him to heal my vaginismus so that Nate and I could actually connect that way in our relationship. I couldn't understand why He would withhold healing from me and from us- wasn't He for our marriage? Wasn't He the one who designed sex for marriages? Was I being punished for something I'd done? And why did I have such severe pain with my periods and throughout the whole month while other women felt nothing at all? What did I do to deserve this? Why was I in so much pain and how did no one know what was happening to me? Wasn't He the great healer? Shouldn't I have been able to call out to Him and receive healing? What was the purpose of all this? Was there even a purpose?
I felt abandoned. I felt alone and isolated. I felt ashamed. Honestly, for most of the last three years, I had thought my endometriosis and vaginismus was all my fault and I deserved what happened to me. I felt like the Lord was trying to teach me a lesson and I needed to endure this pain until He felt like I had earned my healing. I was angry with the Lord. I was angry with myself. And I was angry with Nate and everyone around me. I felt like a burden, I felt weak, and I felt like it was annoying for Nate to have to take care of me day after day after day. I was angry when I'd have to cancel plans on people because I was experiencing pain but didn't know how to talk to them about it. I was angry when I'd have to ask Nate for a heating pad or tea or a bath. I was angry when I prayed. I was angry when people prayed over me. There just came a point where I felt defeated.
I am so so thankful for the people in our circle who surrounded us and continued to check in on us, pray for us, encourage us, weep with us, cry out to the Lord with us- we wouldn't have been able to get through this time without them. I remember one Sunday at church, a dear sweet friend and mentor of mine, Jenavene, walked over to me during worship. Tears were streaming down my face, and I was in so much pain. She placed her hand on my stomach and started wailing, and crying with me. She cried out to the Lord in prayer over me and I just remember her yelling over and over, "This isn't right Lord. This isn't okay, you need to do something!"
It was one of the most powerful moments of my life. I felt a literal weight lifted off my shoulders and experienced in that moment what it felt like for someone else to bear my burden. I felt like I could breathe, and in an instant I heard the Lord say that Jenavene's prayer and mourning with me was just a fraction of the love and care He had for me. That He was mourning with me too, and holding me in the pain I was experiencing on all fronts: physically, mentally, emotionally, and spiritually. To this day, when I think about it, I still tear up. The Lord revealed Himself to me through Jenavene's act of care for me. It meant the world to me. That moment left a mark on me, and I truly hope that I can carry someone else's pain someday in the same way that Jenavene carried mine that day.
Things were up and down for us. Some days were easy for us to wake up and look at each other in the midst of pain and disappointment and say, "Thank you Lord for your goodness, your faithfulness. We praise you, we worship you, we love you. You are so, so good." And we genuinely meant it. We'd pray, worship, lift our hands and hearts in surrender, and trust the Lord for all that He had for us, regardless of what that actually was.
Other days we woke up, and one of us was down in the dumps, and the other felt strong enough to hope and pray for the both of us. And some days, we just were both discouraged, angry, and felt broken beyond repair. We'd look at each other and say, "This isn't fair. This isn't how it's supposed to be. I don't want to worship you, Lord. I don't want to praise your name, I don't want anything to do with you today."
At the time we found Dr. Kanayama, we had been through several doctors already who had looked at me and said, "You're fine. You're too young for anything to be happening. You'll get used to it. I can't do anything for you." So when we made this appointment to go see Kanayama, neither of us really had any expectations. It was a last ditch effort, and the week before we had been talking about the fact that it looked like our situation would be one we might have to adapt to for the long haul. I want to say I was full of hope at that point and I was proclaiming healing and praising and thanking the Lord for what He was about to do, but I was far from it. I was resigned to living my life in bed for 20-some days of each month, quitting work, never being able to have sex with my husband, and managing pain every single day. We felt defeated.
Well we left that doctor's appointment feeling completely different. I cried when Kanayama pointed out to me on the ultrasound that my uterus was twisted and pulled to one side. They were tears of joy, because we finally had an answer for my pain. We could finally point to a problem and look for solutions or next steps. We felt EXCITED that I had endometriosis! For the first time in 10 years, I felt validated. I felt seen and heard and known. I knew that I wasn't crazy. I felt like we had some sort of context for why I could be dealing with vaginismus, even if it wasn't related to endometriosis directly- at least my pain was real and I wasn't making it up.
We walked out of Kanayama's office that day thanking the Lord for answering one of our prayers. We walked out of that office smiling and crying and full of hope, where just two hours prior we had been so hopeless and stuck.
Like I said, surgery changed our lives. I no longer have every day pain, and my period pain is very minimal compared to what used to be. I am on my feet again, we can plan trips without having to worry about if I'll feel good enough to be up and about, we can visit family without worrying about trying to explain to everyone why I need to sit things out and just lay in bed- things are different now.
There's technically no cure for endometriosis, so it's very likely that I will have surgery again in the next five years or so to remove new growth. It's also possible that the Lord could completely heal me of endometriosis and we never have to deal with it again- who knows. But for now, we're living in freedom from that physical pain that was holding us captive for so long and we'll trust that the Lord will continue to take care of us if it comes back again. We're still dealing with vaginismus, and that's been hard. There's a lot of emotional and mental pain that we're dealing with as we work through the physical aspect, and we still have lots of questions. It's taken a toll on us in a lot of ways, but has also made us that much more resilient and ready to face challenges that come our way in the future.
We're not afraid to fight. We're not afraid to step up to the plate and take a swing at what's thrown at us. It's not always easy, and I don't know that it ever will really be easy. But we're learning how to walk with each other and with the Lord through our pain. We're learning how to encourage one another and lean on the Lord for His wisdom, truth, mercy, love, and power. Some days that looks like praising Him, singing with joy and hope and expectation. It looks like prayers full of thanksgiving and bold asks. And other days it looks like weeping on our knees, crying out in anger and confusion. It looks like honesty in our pain and disappointment with the Lord and wrestling with our faith. We are learning what it looks like to continue choosing to praise Him and worship Him, even if our situation never changes.
Does our pain have a purpose? I hope so. I think that for Nate and I, our pain has been an opportunity to grow and will open the door for healing and freedom for other couples and/or individuals. Because of the pain we've walked through and are still wrestling with, we have the opportunity to help others in our same position. We have the chance to look them in the eyes and say, "I know this is so hard. I understand. I am so, so sorry. It's not supposed to be this way." And then we can look at them with integrity and say, "There is hope. There are answers. There is a way forward."
I found a journal entry the other day from May of 2018, before we had found Dr. Kanayama and had any answers or diagnosis. This was just one of the times where I felt like the Lord spoke clearly in the midst of my questions and disappointment, and I thought I'd leave you all with this:
"'And if not, he is still good.'
I feel like the Lord has been speaking that over me/to me these last couple weeks after reading Daniel 3 and the story of the three men in the fire. They say they will not worship the gods the king has ordered them to, and they get thrown in the furnace. They say, 'If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and He will deliver us... But even if He does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.' I just feel like the Lord is saying, 'Kelcie, I will deliver you. But even if I do not, I am worthy of your worship and your praise. I am still good.' and I'm trying to really lean into that.
I felt so encouraged talking with Jen today, as always. She asks me questions to help me process how I’m feeling, not just giving me wisdom or trying to encourage me not to feel discouraged. She helps me acknowledge what’s happening in the moment and be fully present in that emotion, thought, feeling, pain, etc.
We were talking about the journey that it’s been and how I’ve been reflecting the past week on how I have the choice to acknowledge Jesus’ presence in this fight, in this battle. He’s right here with me, even if I don’t feel like he’s answering me or listening to me- He is. He is with me, and he hasn’t left me nor will he in the future. I have the opportunity to know the power and authority of Jesus’ name and to encounter that power and authority in my own life. With Peter and John and the lame beggar in Acts 3, the beggar asks them for money, and Peter responds, 'Silver or Gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, get up and walk.' Peter could not have operated in the power and authority of the name of Jesus Christ of Nazareth if he had not had it. If he had not had his own experience or encounter with the name of Jesus Christ, he could not have extended that to the lame beggar. When was the last time I experienced the power and authority of the name of Jesus Christ? Where have I experienced that power and authority? Where am I resisting it? I am resisting it now! I have not allowed myself to encounter the power and authority of the name of Jesus because I have been hurt, frustrated, angry, disappointed and sad- and I have closed myself off from encountering the power and authority of Jesus in my life at this time. I have been trying to fix this by myself, do all the things I can to make this situation better. And I realized that I need to encounter the power and authority of Jesus. And that does not mean that the power and authority of the name of Jesus will heal me. That is not what it means in the slightest. But it means that I will allow the power and authority of Jesus Christ to do a work in me and reveal Himself to me through this situation. It may lead to me being healed, it may not. But whether or not it does I will be able to give and extend the invitation for people to experience the power and authority of the name of Jesus because I myself have encountered it.
Even if He does not heal me, He is still good."