Tuesday, May 8, 2018

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.



Saturday, April 21, 2018

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...

Saturday, April 14, 2018

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...

Saturday, March 31, 2018

1 in 10

Welcome to the final recap of my social media posts for Endometriosis Awareness Month 2018! Today we look at day 31 of The Endo Photo Challenge 2018 and the "1 in 10" posts I did for a different Endo Awareness Month challenge from The Endometriosis Coalition.

Day 31: Statistic
#1in10 women have #endometriosis. That is A LOT of people - approximately 176 MILLION worldwide! Why does it take an average of 7 years for people to be diagnosed when it is as common as #asthma and #diabetes?


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#1in10 women live with #Endometriosis, an estimated 176 million worldwide. But, it doesn’t just affect those of us who have it. It affects everyone around us. The #EndoChallenge from The Endometriosis Coalition started today! What does #1in10 look like to you?
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#1in10 women live with #Endometriosis, an estimated 176 million worldwide. But, it doesn’t just affect those of us who have it. It affects everyone around us.
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This is my second little blessing - now 7. She has been praying for mommy to be pain-free since she could talk. I try to protect her from seeing me at my worst, but I have been dealing with pain from #endo her entire life.
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The #EndoChallenge from The Endometriosis Coalition started on March 1! What does #1in10 look like to you?
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18 years ago right now, like literally at this time in the evening, this handsome man walked up to me in a little hole-in-the-wall bar called the Underpass in Hasbrouck Heights, NJ and asked me if I was a #DeadHead. We were both there to see a local #GratefulDead cover band, #AvalonBallroom. He worked with a few of the band members and I liked the Dead. I had broken up with someone earlier that day so my evening plans had been cancelled. The rest is history...
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He has been by my side through EVERYTHING this relentless disease has sent my way. He has been both Mom and Dad to our kids when I’ve been laid out. He has taken care of me recovering from countless surgeries, procedures, treatments, etc. He knows what it’s like to live with the #1in10 and he loves me unconditionally and has never made me feel like a burden. He supports me in all of my endeavors. I am blessed beyond belief to be going through life with him.




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The Endo Photo Challenge 2018: Days 26-30

Welcome back to our walk-through recap of my social media posts for The Endo Photo Challenge 2018. Today, we look at days 26-30!

Day 26: Advice for Other EndoSisters
These are four bits of wisdom and #truth that I have clung to over the years. It took me some time to give myself permission to be ill on days where I really had no choice. I would beat myself up - tell myself I was a horrible #wife, #mother, #employee, #friend... When you have a #chronicillness you can’t worry about what others think. You just have to focus on the people who love you and accept you...flaws, strengths, limitations, good days and bad.


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Day 27: Support Network
I didn't post on this day because I had already shared about my favorite support network on Day 22. MyEndometriosisTeam.com is a platform that I wish I had known about back when I was first diagnosed.  Through connections made on this support network for people suffering with #endometriosis, I have found #support, #friendship, #physicians, #physical therapists, suggestions on medications and therapies to ask my providers about. I have been inspired to begin the process of starting a non-profit to assist endo sisters in receiving the financial resources they need to access skilled endometriosis excision. To say that it has been invaluable would be an understatement. 

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Day 28: Favorite Place to Be

#Hotel rooms: Many years ago, I totally offended my very best friend by telling her that her brand new condo-like apartment looked like a hotel room. I truly meant it as a compliment and I felt horrible that she got upset. Honestly, I LOVE staying in hotels...even more so now that I have kids and have had years of being bed-ridden - here’s why:
1. It means I am traveling which is my most most favorite thing to do!!!
2. It means I am traveling and therefore not laid up with my #endometriosis.
3. I love the clean and new feeling of a hotel room (obviously in a reputable hotel). It is something I am unable to duplicate at home and even less so now that I have kids leaving their crap all over my bedroom and bathroom at home.
4. Although I am surrounded by an eclectic array of things at home, I truly do appreciate the minimalist look of a hotel room...simple and sleek...it’s very de-stressing to me - like sleeping in a yoga studio.
5. I have made a lot of amazing memories in my various travels throughout my life and so to me, a hotel room signifies #goodtimes and new memories to be made.
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BONUS: You don’t have to make your own bed! Now, if only I could bring my Tempur-Pedic mattress with me to each one...

   
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Day 29: #Selfie

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Day 30: Breakfast

I know this may be controversial coming from a health and wellness coach, but I don't usually eat before 11am. I practice daily #intermittentfasting and usually only eat between 11am and 7pm. Calorically, I still consume three meals, but I keep them between those hours. My standard "breakfast" consists of #bulletproof #coffee - #organic dark roast coffee blended with #coconutoil and #grassfedbutter.


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facebook.com/theendoalliance

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