The Thyroid Connection

For the past several weeks, I've been wavering dangerously between trying to stuff my emotions into my temporary amnesia core while smiling with my best "brave girl" face AND stress eating Big Macs and my Easter candy trifecta: Cadbury Creme Eggs, Cadbury Mini Eggs, and malted milk eggs. 🤣😂🤣😂

I can talk about this now, but until yesterday afternoon, it was too terrifying to put out there in real words: I had a cancer scare. 

I have had hyperthyroid issues since my first pregnancy in 2003 which required medication for several years following my initial diagnosis. I was able to come off the meds for a few years prior to my second pregnancy which kicked my hyperthyroidism back into overdrive. I knew I had multiple nodules on my thyroid that have been monitored annually via ultrasound, but this year's ultrasound was the first time anything had grown/changed enough to cause something other than my normal "come back in one year" assessment. One of my many nodules had generated enough concern to necessitate 5-6 needles in my neck for a fine needle aspiration biopsy. I have been in a nauseous, nervous hell for the past 7 days waiting for the pathology to return and I received the stress-relieving call this afternoon - IT IS BENIGN!!! 

ANYWAY, as I was scoping around in preparation for all that the past several weeks entailed, I came across this article from the Nancy's Nook website citing some possible links between endometriosis and thyroid disease! 🤯 #MindBLOWN

https://nancysnookendo.com/thyroid-disease-and-endometriosis/ 

Then, I found this article: https://kaldascenter.com/blog/endometriosis-thyroid-dysfunction-the-connection-you-need-to-know

Did anyone else know about all this? Does anyone else have both endo and thyroid issues? Endometriosis is so twisted and complicated, I wouldn't put anything past it. I'm just shocked that I'm still learning more about it ALL. THE. TIME.

#PainInTheRearEndo #endometriosis #Thyroid #CancerScare

Here We Go Again

My story left off in January 2014 following my radical hysterectomy in November of 2013. My abdominal pain never really stopped following those drastic measures. Sure, some of the stabbing and burning, cat-scratch like pain inside that I knew to be endo-related was gone, but my lower left abdomen was still riddled with the nerve damage and scar tissue pain that I had experienced throughout my endometriosis journey as a result of the many procedures I had undergone. 

This pain interfered with life and work a little bit, but luckily, my hours were flexible so I was able to work around my illness. I missed out on a few things socially, but overall I felt okay and the pain was manageable. I bought into the fact that my endo was dying off from lack of estrogen and that all of the pain I felt was related to pelvic floor dysfunction, scar tissue and nerve damage to my abdomen from all of my surgeries and procedures. This was my new normal and for the most part, it worked.

Over the course of the next 2 or 3 years, as a result of finding a pain management solution that helped me maintain a busy and somewhat active and healthy lifestyle, I lost over 100 pounds and began to work full-time again! I had a new-found lease on life and I was ready and raring to go! 

In early November of 2017, I was at an event for the community health and wellness program that I run when a familiar foe made its return in a noticeable way. Occasionally in the past few years, I had terrible pelvic floor disfunction flares that correlated with extra busy, stressful seasons or times where I knew I had gone overboard with physical activity or lifting. This was different. This was the same pain in the same places where I had suffered with endo for decades before. But how could it be? I didn't have those parts anymore! The endo had no estrogen source anymore. Wasn't it dying off? 

I crawled home and into my bed after my event and tried to "sleep it off." Maybe it was a fluke? The pain subsided a bit through that initial sleep, but got progressively worse over the next few day until I ended up in the ER for abdominal pain for the first time since early 2013. 

In my heart, I knew what it was, but I went through the proper channels and testing anyway...in a state of numbness and shock as one by one, things were ruled out. 

✅ PRIMARY CARE - Result: Can't be endometriosis. You had a hysterectomy. You should see an OB/GYN, get a colonoscopy, an MRI and an ultrasound.

✅ Ultrasound - all good

✅ MRI - all good

✅ Colonoscopy - clean as a whistle

Colonoscopy prep gets a fancy upgrade! January 2018

✅ OB/GYN - Result: Can't be endometriosis. You had a hysterectomy. You need to see a urologist

✅ Urologist - Result: Can't be endometriosis. You had a hysterectomy. You need to relax and take valium (not even kidding) and a few other wonderful things that I won't share here, but let's just say that he equated the tightness in my lady parts to the chemical symbol, Ti. MY RESPONSE: "You need to get out so that I can get dressed and leave because we are finished here." #YouAreFired

At this point, I had no idea what to do or where to turn, I mean what do you do when you have pain that correlates with parts that you no longer possess? So I did what every confused person in pain does when they have exhausted every possible option in dealing with a chronic problem... I turned to the internet. 

Something Different, But Not New

After my radical hysterectomy in November of 2013, my abdominal pain never really stopped. Some of the stabbing and burning, cat-scratch like pain inside that I knew to be endo-related was gone, but my lower left abdomen was still riddled with the nerve damage and scar tissue pain that I had experienced since my previous laparoscopic endo-related procedures. This kind of pain interfered with life and work a little bit, but luckily, I was only working part-time and my hours were flexible so I was able to work around my illness.

In the year or two prior to my hysterectomy, Maine had initiated a medical marijuana program and since I knew I hadn't had many pain issues during my recreational-use years in college, I decided to pursue my certification. Honestly, I figured I had nothing to lose. I couldn't go back to the zombifying pain management protocol I had been on prior to my pregnancy, but over-the-counter medications were not doing the trick for the pain I was experiencing. I traveled downstate for an evaluation and when the doctor whipped out the file folder of my history that had been sent from multiple providers, it was bulging beyond two inches thick. As he put the folder down on the table between us, he said, "First, I feel like I should hug you because what you have been through is terrible." After a hug, he continued, "Now, I can't make any guarantees, but based on your history, I am hopeful that you will be able to find some relief from this medicine." He provided me with my certificate and explained to me the process of accessing medication. On my trip back north, I stopped to get established with a registered "caregiver" who provided me with different strains of medication to try.

I have to admit, I was a bit nervous trying the medicine for the first time. It had been over a decade since my recreational use college days and I was worried that I was either going to revert back to a frat-party mentality or gain hundreds of pounds from the munchies. What ended up happening surprised everyone, but most of all me... Within a few minutes of taking the medicine, my pain was gone. I was not couch-locked. I did not feel "high" because the high effects of the CBD & THC were counter-balanced by my pain. I felt good. I had energy.

Day 1 of getting my life back... January 2014

Within 15 minutes of taking the medication, I was digging a snow cave with my children in our front yard. Emily was almost 4 and she had never in her life seen me get down on the ground to play with them in this way. While the girls continued to play cautiously around me out of habit, we laughed and wrestled and even took a short nap in the cave we had built. It was the best day EVER after my wedding and birth/adoption days.

I continued to manage my pain with my new medication and actively sought other natural means of pain management like nutritional changes, essential oils and detoxification protocols. I had a good deal of energy, so I started making some positive lifestyle changes - eating more clean, organic, whole foods and drinking more water. I lost 120 pounds over the next 12-months (take THAT munchies!) and even started a small side business selling jewelry online and at local events with my daughters while continuing to work part-time. We made such wonderful memories together with our jewelry business and it was flexible around my bad pain days.

I missed out on a few things socially, but overall I felt okay and the pain was manageable. I bought into the fact that my endo was dying off from lack of estrogen and that all of the pain I felt was related to pelvic floor dysfunction, scar tissue and nerve damage to my abdomen from all of my surgeries and procedures. This was my new normal and for the most part, it worked.

Living & Thriving with Endometriosis

I was recently interviewed by Brianna Wilkerson of MadeWell on her "Healthy Body Podcast" about living with endometriosis. The full podcast is available below.

In this episode, you will learn about:

• What endometriosis is and its impact on women
• My journey struggling with endometriosis and how it was hard to diagnose and even harder to live with
• How endometriosis made it hard for me to get pregnant and how I was told I would never have kids, but later had two miracle babies
• How endometriosis led to me gaining weight and struggling to feel good and healthy in my body
• How my persistence in finding out what was wrong with me led to my endometriosis diagnosis and after many years and surgeries, experienced a 120 lb weight loss, got my energy back and is learning what it means to live and thrive with endometriosis
• My tips on how to live and thrive with endometriosis through the 7 pillars of a healthy body – nutrition, exercise, stress, sleep, digestion, toxic load and mindset and habits

Insanity

When I last left off in my story, I had just kicked all of my lady parts to the curb. My OB/GYN friend had seen endometriosis in there and assured me that due to the lack of estrogen, it would die off. Little did she or I know that this was not how endometriosis worked. I did not know it because I had never really done any research into my disease. She did not know it because, although she was one of more than 40,000 OB/GYNs exceptional at delivering babies, she was not one of the approximately 200 skilled endometriosis excision specialists in the United States. As recently as 2016, reports from OB/GYN residents nearing completion of their training indicate that all they had been taught about endometriosis is that Lupron, pregnancy, and total hysterectomy were the tools to use. I had already tried two of these options unsuccessfully and was hopeful, as was my OB/GYN, that my radical hysterectomy in late 2013 was the ticket to my endometriosis-free future.

My surgical recovery was fairly uneventful, but I never really experienced relief from my endometriosis pain. At 6 weeks out, fully weaned off the post-surgical pain medication, I couldn't understand why I was still hurting just as much as I had been before my surgery. I was encouraged to begin Hormone Replacement Therapy. This did absolutely nothing to help the chronic pain that I was experiencing. On Christmas Day, I ended up in the ER again for pain that I could not get on top of.

I followed up later that week with my OB/GYN who was also at a loss. "I could refer you back to pain management," she suggested. I broke down in tears...partially due to hormone imbalances caused by the menopause that had been surgically-induced in my 40 year old body and partially because my previous pain management regimen had involved so many narcotics that I had been a zombie and unable to enjoy life. I knew that there had to be a better way, but I could not figure out what it was and neither could my physician. She called in a prescription for MS Contin (extended-release morphine) and sent me on my way to mull over my one option.

At this point, I was also nearing 300 pounds. I'm not going to TOTALLY blame the endometriosis for that, but being bed-ridden for months at a time had done little for the "move more" mantra that I knew would move me closer to the 1-derland (under 200 pounds) number that I desired to see staring back at me when I stepped on the scale. Feeling lousy also led to a lot of comfort food consumption. Did I make those choices? Of course! No one shoved junk food down my throat, but I like to think that if I had been feeling better, I might have had the energy to prepare healthier foods and the wherewithal to resist the unhealthy options that I turned to in the name of convenience and comfort.

In regard to both my pain and my weight, something needed to change...drastically. I pondered a lot on Einstein's quote about insanity. I had always approached my pain with the same types of interventions: pharmaceuticals, doctors, surgeries and procedures. I had always approached my weight with roller coaster dieting - feast then famine, then repeat, repeat, repeat. Both were vicious cycles with no permanent solution or even an end to speak of. I began to realize that I needed to do something completely different if I wanted to experience different results. I declined my OB/GYN's pain management option and began to research and pray. I had, indeed, gotten to the end of my rope.

Kicking My Uterus to the Curb

Following the birth of my second little miracle in July of 2010, it didn't take long for my endometriosis to rear its ugly ahead again. For the next 3 years, I tried to manage my symptoms naturally, but as I floundered through life attempting to keep up with three children, a part-time job I loved and a husband who needed his wife back, it became more and more evident that I was quickly going back in time to the place of desperation that had led me to schedule a hysterectomy the first time in 2009.

I did some research via Dr. Google. I was so frustrated at the range in commentary on hysterectomy for endometriosis.

"It changed my life."

"It doesn't cure endometriosis."

"It is a viable treatment for endometriosis pain."

"I never had pain again."

"My endo came back a year after my hysterectomy. Now what?"

"Cure endo with a hysterectomy."

"Hysterectomy saved my marriage."

"Hysterectomy ruined my life."

My doctor had not made any promises about whether or not a hysterectomy would help, but it was honestly the only thing that I hadn't yet tried. I decided to stop reading, realizing that regardless of the perspective, I could find something online supporting its validity. I had to make a choice for ME, Bethany. 

I knew I was done having children. I was exhausted and hovering dangerously just below the 300 pound mark on the scale. I had just turned 40. I was quickly going back to being the bed-ridden girl I had been and I wasn't going to stand for it. 

In the fall of 2013, after yet ANOTHER visit to the ER, I pulled the plug and decided it was time to kick my uterus to the curb. I guess that medically, 40 was the magic number for me not being "too young" to have one (as I had been told many times previously) and I was able to schedule the procedure with the local OB/GYN who had delivered my little miracle in 2010. 

On November 4, 2013, I had a radical hysterectomy which included the removal of my uterus, remaining ovary, both fallopian tubes and my cervix. I spent 72 hours in the hospital following my surgery and woke up on the second morning to a beautiful sunrise out my window that I tried to capture with my phone cam. Maybe it was the pain medications talking, but in that moment, it felt like a foreshadowing of a brand new day, a future full of potential. 

Room With a View

I had a little visitor in the hospital!

The procedure was fairly uneventful although my doctor casually mentioned seeing "a few endometriosis lesions" in there. She reassured me that they would "die off" due to lack of estrogen. I left the hospital hopeful that my life with endometriosis was over...

Anti-Estrogenic Diet

After giving birth to my second little miracle in July of 2010, I carried on with my life as a sleep-deprived, stay-at-home mom. I had been out of work for two years after being fired due to my endometriosis-induced inconsistent work attendance. I was so busy with the new baby and my two older daughters that I seemed to have forgotten how close I had come to having a hysterectomy prior to becoming pregnant. I guess, in hindsight, it isn't too surprising how detached from that reality I had become, since pregnancy is often touted as a "cure" for endometriosis. Nevertheless, I had experienced a nice little gestational reprieve from my endometriosis pain. I still had some scar tissue and nerve damage issues from my previous surgeries, but I had become used to those. My choice to breast feed Emily extended my endo-free oasis until about 5 months post-partum when I developed a severe case of mastitis that compromised my milk supply and I had to transition Em to formula. Within 4 weeks, I was in the emergency room with horrible abdominal pain. In my mind, I didn't want to think that it could be the endo. Could it be kidney stones? Appendicitis? Ruptured spleen? Scans showed no evidence in support of those theories. Alignment issues? Two years of weekly chiropractic care offered no relief. Neuropathy? I saw a neurologist who confirmed that, although the nerve damage I had previously been diagnosed with as a result of improper healing after my previous surgeries was still there, it was not the cause of the extreme, and now constant, pain that I was in.  The doctor who delivered my daughter prescribed continuous birth control to suppress my estrogen and help control the endometriosis which had likely returned. We discussed proceeding with the full hysterectomy since that had been my plan prior to pregnancy, but she gave no guarantees that it would eliminate all of my pain since we knew I also had scar tissue and nerve damage.

My brother-in-law suggested that I try a drastic change in my diet and at first, I was FURIOUS with him for making such a ridiculous suggestion. How dare he tell me that I need to eliminate foods from my diet! I wanted to eat what I wanted, when I wanted it and how I wanted it! After I simmered down a bit, I began to do some research online.  This research led me to a book called "The Anti-Estrogenic Diet" by Ori Hofmekler.

The plan focuses on stabilizing and balancing out the estrogen levels in your body and since estrogen is the fuel for endometriosis, I figured that I should give it a try. It works in three phases. The first phase focuses on liver detoxification and is the most stringent phase, lasting for 3 weeks. The second phase helps you raise your natural progesterone (which counteracts estrogen) through food. The third phase is an exploration. During this phase, you add back possible trigger foods and food types and record how your body responds to them. Then, you know if certain foods are contributing to your symptoms.

Tropical fruit, ginger and chickpeas...oh my!

Some of the foods from Phase 1 of the Anti-Estrogenic Diet.

I tried the Anti-Estrogenic Diet three times over the next two years, but the plan was difficult to maintain long-term. Part of the protocol required that you eat only one food at a time except for at dinner. I mean, how realistic is that? If you have a breakfast smoothie, you aren't just blending up one ingredient! All was not lost with my time on the Anti-Estrogenic Diet, though. Following the plan enabled me to lose some weight (which I desperately needed after being bed-ridden off and on for a decade) and helped my endometriosis symptoms be less constant.  Not having constant pain allowed me to begin exercising regularly (which had never been a possibility before, thanks to endo).  I was also able to take on a part-time job at our local hospital in December of 2011 as a breast health advocate. As a family, we began eating cleaner, more healthful food. Even though these nutritional changes didn't solve my endometriosis problems, this period in my life was a pivotal turning point in my journey with food that eventually led to my 120 pound weight loss. But that is a story for another day...