If I were to be completely honest, I felt a lot of fear about joining Nancy’s Nook. I mean, if this group helped so many women, why was it still just a facebook group? Typically, you should be able to trust your doctors before strangers in facebook groups so I was skeptical of these “specialists” that seemed impossible to find otherwise. I figured I had nothing to lose anyway since I knew deep down that my own doctor had missed disease and denied its existence after surgery even when my pain persisted in those areas. My thumb hovered over the join button for what felt like hours but was really about 2 minutes. In those 2 minutes all the “what if’s” flew through my mind like a tropical storm on the verge of becoming a hurricane. I could feel my chest and shoulders tighten at the thought of this group being useless to my healing. When I realized how tense I had become it snapped me out of allowing those “what if’s” to manifest into anxiety. It hit me that in a fraction of a second I was possibly going to have all the answers for endometriosis at my fingertips, and I’m letting fear get in the way? No way, I’m not letting my fears get in the way of possibly getting treatment and being free from endo. Before I could think another useless thought my thumb hit the add button ahead of any more fears.
In about 5 minutes I received a notification on my phone letting me know that my request to join Nancy’s Nook was approved. My palms instantly felt clammy. Dare I look in the group? Without wasting another moment I clicked on the notification and was instantly transported to the group. “Holy crap!” I thought to myself. There were so many members! Thousands of patients were asking so many questions. I could see why they make you wait a week to ask questions. It was set up like a resource library, not a support group. I immediately scoured through the files hoping to find info on endo and to hopefully find a specialist in NC. I really didn’t want to travel out of state to get treatment. How does that even work? After a minute of so of scrolling I finally found the international surgeons list- It took me about 2 minutes to realize there weren’t any Nook specialists in NC (at that time). I could feel the disappointment enter my body. The closest specialists were 5 hours away. I knew we couldn’t afford to travel after the ridiculous doctor bills and treatment costs of the past 8 months. At that moment I felt the Holy Spirit say don’t worry about the cost today. “Think about the cost when it comes time to pay. I’ve got this.” I felt a sense of peace wash over me like a warm bath on a cold day. I decided to listen to that feeling and pour over the Nook files for the next week.
I’m glad I had to look at the files and wasn’t allowed to ask questions because every answer to my question was in a file. It blew my mind that the actual definition of endometriosis is characterized as the presence of endometrial-like tissue found in extrauterine sites. EXCUSE ME, WHAT DID I JUST READ? So let me get this straight, the ACOG’s definition (endometriosis is a condition in which the type of tissue that forms the lining of the uterus (the endometrium) is found outside the uterus.) is wrong??? I could vomit just reading that outdated definition. I read the studies that showed no transplantation markers on endometriosis lesions which indicates that the endo lesions formed from beneath the healthy tissue and rose up like a weed in a garden. I read that time and time again pathology results show that endo lesions and endometrium biopsied from the uterus don’t match. I read the studies where they found endometriosis lesions mapped out in fetuses before they were born suggesting that this disease is hereditary in a lot of cases. I didn’t even realize that people affected by endo were on transplant lists to receive new organs like kidneys for example because endo or adhesions had formed and blocked their ureters- and those blocked ureters had been missed because the medical professionals had not been trained on how to spot deeply infiltrated endo or adhesions on ultrasounds. I read that pregnancy, hysterectomy, and menopause do NOT cure endo. What in the world is happening here? How can so many OBGYNs, not to mention all persons in the medical field, be so misled and ill-informed on a disease that they claim to be experts on?
My gut feeling was confirmed when I read all the files and studies. So many months before I couldn’t understand how endo, a disease that affects more than 1 in 10 women and individuals, could not have some sort of sustainable and successful treatment when this all began. Little did I know that it wasn’t that patients didn’t have the option of getting the best evidence based treatments that last a lifetime for most, it was the severe lack of access to resources like this group for example. Before joining support groups, I didn’t even know there were endometriosis experts and specialists that only deal with endo, adeno, and fertility. I was never told about endo specialists by my OBGYN and only given the options to take Lupron- a drug that has caused serious permanent damage to so many women or “excision” surgery by a non-specialist which resulted in him leaving disease behind and claiming he got it all- only to blame “recurrence of endo” in the next surgery several years from now if I kept getting my treatment from him. See how that works? The numbers for recurrence of endo even after excision were skewed because they included ablation (burning top of disease off but leaving disease rooted in tissue) along with excision by non-specialists (who obviously missed disease during surgery).
Why do non-specialists leave disease behind even when they claim to do excision? There are several factors at play for a non-specialist:
- Non-specialists are not trained to recognize endo in all its various forms and colors as the disease ages.
- If faced with advanced disease that has infiltrated the bowel for example, most will either leave disease as is or do a bowel resection while a specialist can excise disease off of the bowel without having to do a resection a majority of the time.
- They typically do not excise disease when performing a hysterectomy therefore, the disease continues to cause problems for the patients.
- They think pregnancy helps but in all reality, it can be dangerous to get pregnant with endo due to various complications caused by it’s location within the body.
- They think drugs like Lupron, Orlissa, etc. will “clean up” the rest of the endo they leave behind or miss.
- There are many other reasons behind why disease is left behind but these are the first ones that come to mind.
Although excision of endometriosis by a specialist is the Gold standard treatment for endo patients, it is true that some women with a rarer and genetically more aggressive form of endo can experience “true recurrence” of endo even after expert excision. For these women, they may need several surgeries throughout their lifetime depending on how aggressive endo is within their body. For most women and individuals, most specialists believe the amount of endo we have in our bodies by the age of 30 is the most we will ever have grow. That means that if you have disease removed at 30, you most likely won’t have a recurrence unless you happen to have the more aggressive form of endometriosis. Of course, you can’t know if you’ve won that genetic lottery until it returns after expert care.
I felt a sense of hope as I read through all the files and decided to share the information I could with others like the origin of disease, how to join the group and gain access to this info etc. I still find it interesting that more than 70% of endometriosis patients go on to develop interstitial cystitis. On top of that, endo is not autoimmune despite what a lot of doctors and medical professionals think. They haven’t found the bio-markers to indicate an autoimmune component which means this disease is not from the body attacking itself. However, endo is a disease that causes systemic inflammation and is deeply complex in regards to the immune system. They know it weighs down the immune system so much that other diseases and autoimmune diseases often later develop as a result. It is a lot of information to sit with and honestly I’ve only shared a fraction of what is available on endo from that group.
It took a couple of weeks but after looking through the files and reviewing the specialists, I had a gut feeling to choose the Center for Endometriosis Care in GA. The problem for me was figuring out how to do all of this. I sat with this information for several months so I could get through the holidays while also praying and seeking God on this whole ordeal. As February came, I felt the nudge from God to apply for treatment at the CEC. At the time, they were doing a free records review for all patients. All I had to do was send in all my medical records and fill out the application and mail them all together. It felt daunting at first to gather all my medical records, including the urologist records from the interstitial cystitis diagnosis and treatments, but it actually was a very smooth process.
After gathering all my medical records and filling out the application, I sent everything in the mail and waited for them to review my records and contact me regarding whether or not I was accepted as a patient. In the waiting, I prayed and hoped that I would be accepted. I wondered what would happen if they didn’t accept me as a patient. What exactly are the parameters for them to accept patients? I decided to not worry and leave it all to God. I know God said that I didn’t need to worry about endo, that he would get me out of this mess the year before. I chose to remind myself of the scriptures and promises of God in previous hard times to help remember that God’s word never returns void.
Living with a chronic illness like endometriosis or interstitial cystitis can sometimes cause us to feel like it is a waste of time to believe that the chronic pain and fatigue will end. I really battled with myself mentally and spiritually as I waited to hear from one of the specialists. The “what ifs” can really eat you alive if you’re not in control of your thoughts. I still think one of the most common “what if” questions among endo patients is, “What if I’m wrong? What if there is no disease when they perform surgery and I’ve wasted everyone’s time and all of our money?” I certainly wrestled with that fear and ultimately came to the conclusion that if that happened, God would be leading my steps like he was then so I’ll put my trust in his leading and not in my ability to figure out what to do next.
You see, when we decide to trust God instead of give into our fears, we are increasing our ability to endure and persevere trials. Choosing this route of faith during hardships leads to patient endurance, patient endurance to character (spiritual maturity), and character to hope (Romans 5:1-5). It isn’t always easy to choose hope, especially with seemingly incurable diseases. Our hope can take a beating while we wait on God, it gets knocked down and drug through the mud only for us to pick it back up again. Learning to hope is almost like learning how to ride a bike. You may fall off the bike in the beginning to the point of needing training wheels. You’ll have a grace period of using the training wheels and then it’s time to ride without them. You can either let the fear of falling off stop you from ever learning how to ride or you can try until you get the hang of it. The bruises and cuts will heal, the mud can be washed off, but you’ll always know how to ride the bike. For me it’s very similar with hope. The enemy will throw pitfalls in your way, hoping you give up when you’re surrounded in devastating circumstances. A way to persevere with hope regardless of your circumstances is to remember God’s word, his current promises in our lives, the promises of the past that have come to pass, to remember that his word never returns void, and to listen to the leading of the Holy Spirit. The journey to learning how to hope isn’t always pretty or easy but it is well worth it in order to flourish with God.
The most important thing for me was to understand that hope is not an emotion but a state of mind. For me, hope is a choice. We can choose hope while we experience sadness or any other emotion regarding our circumstances. Choosing hope is not about shoving down your emotions and pretending everything is going to be okay. Choosing hope is about acknowledging your current circumstances, processing your emotions, and ultimately choosing to believe that God’s promises will come to pass.
Please understand that a lot of things are revealed to you while you wait on God’s promises. You may find that although you have hope to be completely healed, seemingly small unbeliefs are revealed as time passes. There’s no need to feel shame about this. You are not alone in this experience. God often uses time to reveal these unbeliefs in order to help us confront them at their root. For example, I started to question whether or not God would really heal me as I waited to find out if I was going to become a patient at the CEC. The root of this unbelief was fear; fear that I was not important enough or that I was destined to suffer my whole life. This fear I had wasn’t the truth and I knew it but it would have remained lodged in my mind and spirit if it had not been brought to my attention. This was just one example of many things I needed to deal with as I waited and although it isn’t a fun or easy process it’s crucial to spiritual growth. Those weeks weren’t fun but I learned a lot about myself in the waiting and gained a sense of peace after confronting those unbeliefs.
It took about two weeks to hear from Dr. K regarding whether or not I was going to be a patient at the Center for Endometriosis Care. When he called my heart began to race with anticipation. He told me that after reviewing my records and application answers he believed that I still had endo in my body. He went over everything he suspected including performing another bladder hydrodistention with cystoscopy and an endometrial biopsy to rule out adenomyosis since I had a hard time telling if some of the pain I experienced was interstitial cystitis or adenomyosis. The bladder sits on top of the uterus so it was hard for me to tell sometimes where the pain was coming from. Once you are accepted into the program you have a year to schedule the surgery. I was so relieved to find out that I was accepted! Now the issue of money was the only obstacle in my way.
Micah and I prayed about the money issue and I felt God nudge me to do a Go Fund Me account. It was not how I envisioned God getting us the money but I knew it was better to follow God and swallow my pride than to let my pride get in the way and suffer for it. I wrote and posted the Go Fund Me and while we did have some donations over the next few weeks, we were not sure if we should wait for the full amount to schedule surgery or schedule it and hope God made it happen. I believe strongly that God works through people just like the enemy does so that’s what I mean by God making it happen. After some praying, Micah told me to make the appointment before we had the full amount. I was given the option of choosing two world class surgeons; one surgeon, Dr. S, is one of the top 10 endometriosis surgeons in the world and he taught the other surgeon, Dr. K. I felt it was a win-win situation and chose Dr. K because he was available on a Friday which would work out perfectly for the travel down to GA and Micah taking off work. I scheduled the surgery for April 27th, 2018 and prayed for God to make it happen financially.
I had a month before the surgery date to figure out what hotel we would stay at since we had to stay in town for three days after surgery, schedule a recheck with my PCP to check my incisions a week after surgery, hope God would provide us with enough donations to afford the surgery, take off work and hope they didn’t fire me for needing recovery time after surgery, and a million other things that needed to be taken care of like who would take care of our pets etc. I felt nervous and excited about our future. I was ready to get better and get my life back. I was ready to find a church, start a family, walk down the hall without pain, you name it and I was excited about it. I could feel my chest tighten with excitement and joy, it felt like a light was beaming right out of me. I was reminded of the scripture written in Jacquita’s handwriting and felt encouraged for our future.
“After you have suffered for a little while, the God of all grace [who imparts His blessing and favor], who called you to His own eternal glory in Christ, will Himself complete, confirm, strengthen, and establish you [making you what you ought to be]. “1 Peter 5:10
I was ready to be free from this disease and I could taste the freedom that awaited us in Georgia.
Chronic Hope Part 6 coming soon.