Getting ready to quietly celebrate an important two year anniversary

January 25th will mark the two year anniversary since I underwent the surgery that removed all the endometriosis that was growing inside me and wreaking havoc on my digestive tract.

As I head toward this important milestone I am reminded of how much healing my body has been able to do in the past two years. I realize that I can sit and work at my computer for much longer periods of time without having painful repercussions. I am so much more mobile than I was before surgery. I can do the things in my garden that I wanted to do before, but couldn't. My fatigue levels aren't nearly as debilitating either.

It isn't all roses and sunshine, however. I am still learning how to manage the chronic conditions that are a permanent part of my life thanks to three decades of the chronic stress caused by my body being assaulted by the disease. There's only so much a body can take before the endocrine and other systems become affected. I am no exception.

Little by little I'm learning to manage my fibromyalgia. My flare-ups are fewer and farther apart if I manage my stress and nutrition correctly. I found out the hard way over the Christmas holiday that stress and creamy desserts like cheesecake will trigger a flare-up like no other. I've also learned to pay attention to my left shoulder because a flare-up will always start and end there.

I've also learned that I have to baby my liver with the nutrition found in a good solid Mediterranean diet. Even though the rest of me is Scot-Irish-Hispanic-Swiss-German my liver must be Italian. It digs olive oil, bruschetta, hearty pastas with a red meat sauce, and gelato (or sorbet). But give it ice cream, cheesecake or a cream sauce and it throws a fit. I'm convinced my liver and fibromyalgia are in cahoots and the best of BFF's.

I've discovered the blessings of taking large daily doses of Vitamin D. The same is true for my Omega-3-6-9 supplements. I also know that I can't got without my daily dose of anti-inflammatory snack of walnuts or I will be very very sorry. And I've discovered that 1 ounce of super dark chocolate daily is a necessity that doesn't make me gain weight so there's no need to feel guilty in the least for consuming it for the same reason I eat the walnuts.

I've learned that sitting in the sun for 30 minutes a day (particularly during the winter months) is a critical component to managing my wellness on many levels. And I've changed my thinking so I almost don't feel guilty about every one of those precious 30 minutes spent soaking up the warm rays like a cat in a patch of sun. I do it without earbuds in my ears so I can be quiet. The pondering and meditation it makes possible heal and rejuvenate me. I continually remind myself that I will not feel guilty for giving myself this gift.

And although I've known it for a long time, I've come to terms with the reality that the vacuum cleaner and I will never be best of friends. As much as I want a perfectly vacuumed floor all the time, it just isn't going to happen. The vacuum is too mean to my back. I can haul wheelbarrows of sand and rocks around all day long in the garden, but for some reason the vacuum cleaner can defeat me and my sciatic nerve in less than 30 minutes. I've decided to choose my battles wisely--this isn't the hill I'm willing to die on. Hubby can forge a close friendship with the vacuum cleaner. And in the meantime, I can pretend I don't see that dust bunny over there in the corner.

Factors not being properly considered as causes of obesity (Part 2)

In a previous post I mentioned some factoids that I've gleaned from years of searching for answers as to why I am obese. I have discovered that my obesity is a result of several key factors that I have yet to see scientists fully explore in their research. I will address each of these factors in a multi-part series here on my blog. 

Click here to read the first part of this series

Factor 2--Endocrine Disruptors

As a long-term sufferer of endometriosis, my endocrine system is extremely compromised. It happened because of the chronic state of stress my body was under while the endometriosis (believed to possibly be an autoimmune disorder itself) wreaked havoc unchecked for decades.

Here's what Dr. Andrew Cook has to say about this phenomenon:

"The human body has a wonderfully complex inter-relationship of organ systems. The body acts as a buffer system, processing and eliminating both internal and external factors. Multi-System Disease (MSD) describes an overall decrease in the functionality of multiple organ systems, resulting in an overall decline in health and functionality of the person as a whole. The initial agent, or 'insult' that starts the process, can be any one of countless possibilities [e.g., endometriosis]; but it is one that chronically stresses the body's buffering capacity. Over time, additional factors accumulate, adding an increasingly large burden on the buffering capacity of the body. This is much like adding straws to the camel's back until it finally breaks. The different organ systems which can be involved include the endocrine system (this includes all of the various hormones released by the body – estrogen, progesterone, androgens, thyroid, growth and the stress hormone cortisol), the nervous system, including the autonomic nervous system with the sympathetic and parasympathetic nervous system (including the hypothalamic-pituitary-adrenal axis), many aspects of the immune system, and possibly even the coagulation system. In its most severe form, this disease process results in virtually a complete decompensation of almost all of the vital organ systems, and thus the decompensation of the overall health of the patient. He or she can be left in a state of such low body function that performing even routine functions becomes nearly impossible.  

"I believe that women with advanced endometriosis have MSD. This is a good example of a disease process where truly integrative approaches, including surgical, traditional medical and alternative therapies, are required for successful treatment. The endometrial implants are a disease in the body that must be removed surgically. This anatomic disease is like a boat anchor that drags down the health of the individual. No matter what other treatments are instituted, the body will have to deal with the disease, since there is no non-surgical way to remove endometriosis from the body. Conversely, the endometrial implants present in the pelvis may not represent all of the ill health of the patient. Patients with systemic (overall body) symptoms may well be suffering from MSD. This is one reason that even complete surgical removal of the endometrial implants may only treat part of the overall disease process of endometriosis patients. These patients in particular will most likely benefit from an overall approach to improve their underlying health to maximize the buffering capacity of their bodies, and thus the ability of their bodies to detoxify and regain optimal health." (from VitalHealth.com)

I have experienced what Dr. Cook describes above. I have fibromyalgia, Vitamin D deficiency, insulin resistance and odd thyroid function to name just a few of the things that I do know that have gone wrong in my endocrine system.

What is an "endocrine disruptor"?

According to the National Institute of Environmental Health Sciences:

"Endocrine disruptors are chemicals that may interfere with the body’s endocrine system and produce adverse developmental, reproductive, neurological, and immune effects in both humans and wildlife. A wide range of substances, both natural and man-made, are thought to cause endocrine disruption, including pharmaceuticals, dioxin and dioxin-like compounds, polychlorinated biphenyls, DDT and other pesticides, and plasticizers such as bisphenol A. Endocrine disruptors may be found in many everyday products– including plastic bottles, metal food cans, detergents, flame retardants, food, toys, cosmetics, and pesticides. The NIEHS supports studies to determine whether exposure to endocrine disruptors may result in human health effects including lowered fertility and an increased incidence of endometriosis and some cancers. Research shows that endocrine disruptors may pose the greatest risk during prenatal and early postnatal development when organ and neural systems are forming." (NIEHS.com)

A large percentage of endocrine disruptors fall into the category of what is called "obesogens":

"Obesogens are foreign chemical compounds that disrupt normal development and balance of lipid metabolism, which in some cases, can lead to obesity.  Obesogens may be functionally defined as chemicals that inappropriately alter lipid homeostasis and fat storage, change metabolic setpoints, disrupt energy balance or modify the regulation of appetite and satiety to promote fat accumulation and obesity." (from wikipedia)

Dr. Oz did a great write-up about obesogens on his website after doing a segment on his show. Included in his article is a list of common places to find obesogens:

• In your faucets: Pesticides seep deep into the soil and find their way to the water table and into your tap water. The main obesogen in tap water is atrazine. Banned in Europe, but found around the United States, atrazine slows thyroid hormone metabolism. Another culprit found in tap water, tributylin, a fungicide painted on the bottoms of boats, stimulates fat cell production. 
• Cans and water bottles: Bisphenol-A (BPA), a synthetic estrogen used to make plastics hard which has been banned from baby bottles, but is still present in many other plastics (especially sports water bottles) and the lining of most cans, has been shown to increase insulin resistance in animal studies. 
• Nonstick pans and microwave popcorn: Animal studies have shown that early exposure to a chemical used to make items non-stick – Perfluorooctanoic acid (PFOA) – leads to obesity in later life. It also is known to affect thyroid glands, which are important regulators of hormones that control weight. Found mainly in products like Teflon pans, it’s also hidden in microwave popcorn bags and pizza boxes. 
• Shower curtains and air fresheners: Phthalates, chemicals found in vinyl products such as shower curtains and fragrance products such as air fresheners, may lower testosterone and metabolism levels, causing you to gain weight and lose muscle mass. They’re also found in vinyl flooring and industrial-grade plastic wrap used to shrink wrap meat in the grocery store.

Dr. Oz then goes on to point out helpful ways to avoid obesogens:

• Buy wild fish (such as salmon, which is packed with heart-healthy omega-3 fatty acids) and meat products that are hormone- and antibiotic free. 
• Install a granular activated carbon filter on your faucet to filter out chemicals such as atrazine. 
• Use aluminum water bottles or those that are BPA-free. 
• Steer clear of plastics with the number 3 or 7 on the bottom, which may leach BPA. Instead look for the numbers 1, 2, 4, 5, and 6, which are unlikely to contain BPA. 
• Keep water bottles cool (warm temperatures increase BPA leaching) and never microwave plastic. 
• Eat fewer canned foods. Opt for frozen or fresh instead. Tuna can be found in pouches that do not contain BPA. 
• Get rid of your non-stick pans if possible. If you must use a Teflon pan, never use a metal implement on it that can scratch the surface and release the chemicals inside, and throw away any scratched non-stick pans. 
• Buy meats straight from the butcher counter (instead of pre-packaged) and ask that they wrap them in brown paper. 
• Skip the air fresheners, open the windows, and try a vase of dried lavender instead.

What changes I've made and the result of each change

Over the past year, I have progressively incorporated certain changes into my life. Like a lot of people, I have to start gradually so I'm not overwhelmed by too many big changes all at once. But little by little I've incorporated significant changes into my life and seen positive results from them.

Buy and eat only organic fruits and vegetables
I started out by deciding to buy only organic fruits and vegetables at the store. I wanted the endocrine disrupting pesticides out of my diet. I had to be pretty ruthless when it came to corn (I love corn). Corn is a huge culprit because of the highly prevalent GM corn grown (do a Google search on "gmo corn bt toxin" and you'll be amazed at what our corn contains). Now I only eat organic corn if I eat it at all. And I try to avoid all corn products in other forms unless it's organic. I've noticed significant digestive improvements once I implemented these changes. If I do consume something at a restaurant that isn't organic, my digestive system lets me know.

Buy and eat only organic milk and dairy products
I also started out by deciding to only buy organic milk and dairy. Milk can be one of the biggest culprits in introducing endocrine disruptors into one's diet. So I did some research and found that Organic Valley brand goes the extra mile in making sure that the cows are fed pesticide-free grass in addition to no antibiotics or growth hormones (not all organic milk goes that extra mile). The bonus is that Costco carries Organic Valley milk at a great price. We also switched to organic butter, cheeses and eggs. I've seen an incredible result from this change. I feel better. My digestive system is much happier.

Stop consuming artificial sweeteners
That meant no more diet sodas. Yeah, it hasn't been easy. But I feel so much better.

Get rid of all non-stick pans
This was a hard one because cookware isn't cheap and my husband is a stickler for having nice chef-quality cookware. He'd acquired quite a collection of cookware with non-stick surfaces. But it was necessary to make this change because I was noticing that the non-stick surfaces were beginning to leave little flecks in some of my foods like scrambled eggs and omelets. My solution was to take Hubby shopping at TJ Maxx. We were able to put together an entire replacement suite of stainless steel cookware to replace what he already had. The cookware he found was top-notch and the greatly discounted prices meant we got an entire new set of pots and pans for less than $300. My health started to improve once we did.

Stop microwaving plastic
It took a lot of discipline to do this one but I've trained myself to heat leftovers and other meal items only on ceramic plates. I noticed that my food tasted better and I started feeling better after I implemented this change.

Stop using bug spray in the house and garden
This was so hard. I grew up in a house where the solution to any errant fly, moth or spider was to spray a spritz of Raid at it. After I implemented this one, I had a lapse of judgment and used some bug spray on a moth or two. Boy, was I sorry. I felt physically ill for days afterward. I've recommitted to not using bug spray again just so I can avoid feeling so horrible.

Install a granular activated carbon filter on the kitchen faucet to filter out chemicals such as atrazine
Although I was already drinking filtered water through the water dispenser from our fridge, I needed to also have filtered water when preparing foods and cooking. The filter isn't uber-chic as far as my design aesthetic goes but my health was more important than how my kitchen looked. In the end, a water filter took up permanent residence on our kitchen tap.

Conclusion
I have many more changes that I can still make to remove endrocine disruptors (obesogens) from my life. But like I said before, I am taking a gradual approach. Each change I make brings about an added layer of wellness.

I've found that my body doesn't hold on to weight as much as it did prior to the changes. I haven't had weight "falling off" my body in huge amounts, but I've noticed my clothes are looser and I'm slightly smaller. Over time, my body may find a more appropriate set point weight. That would be nice.

But what is more important to me is that I am feeling better. My energy levels are more even-keeled, my pain levels are lower and I feel like I'm fighting against my body less and less. Over time I hope that I will continue to see the improvement I've seen in the past year or so. 

Okay, can I just whine for a wee little bit?

I hate getting used to new meds. Right now I feel like the flower above... kind of there but a little worse for wear yet still looking toward the light on the horizon. Dr. Cook told me that it would take a week or two for my body to acclimate to the Metformin I'd be on. Hubby already went through the experience firsthand years ago and concurred. It all sounded so nice in theory.

Being only 12 weeks out from surgery probably doesn't help. There's a lot of grumbling and unhappiness in my digestive tract that's different from the intestinal distress I was told to expect. My insides are probably saying, "Haven't we been through enough? Now what are you doing to us?"

All I can say is, "Sorry" and then feel like a lump while my insides try to work it all out--all the while repeating little mantras I say to myself...

"There's a light on the horizon... keep your eye on it."

"This is all very temporary."

"I've been through worse... remember what it was like before surgery?"

"It could be worse... it could be raining."

Oh... it has been raining? Well, never mind that one.

Post-op update 7 wks: Seeing myself from the inside

Yesterday marked the 7 week mark since my surgery. Interestingly, the dvd of my surgery came in the mail the day before, so Hubby and I found ourselves watching a portion of the dvd yesterday evening. This may seem odd to some, but we both found it fascinating.

Because the surgery was laparoscopic, Dr. Cook had to use cameras to see what he was doing inside me anyway. So it stands to reason that what the camera was "seeing" would also be recorded digitally. None of the surgical prep is included on the dvd (thankfully). It only shows what the laparoscope "saw" as it showed Dr. Cook what he needed to see. "Ports" (looking like short sections of plumbing) were put into each of the three small incisions that were made--one through my navel and one over each hip. The camera and surgical equipment were put into each one and switched around throughout the surgery depending on the area being addressed. It was interesting to watch the footage when the camera was being switched from one "port" to another--one of the few times anything outside my body was visible.

It is a rare opportunity to get to see inside one's own body. I was amazed at what I look like. Of course, as an artist, I noticed all the different colors of the tissues and organs. Who knew I was so many different shades of pink in there?

It is also a rare opportunity to get to witness a surgery being performed on one's own body. I consider it a wonderful privilege afforded me by modern technology to get to see the artistry of my surgeon as he used a CO2 laser to perform vaporization of the nasty endometriosis and adhesions that riddled my internal organs. Watching the dvd has further deepened my gratitude for Dr. Cook as well as the medical advances that made such a procedure possible. Most adhesions looked like thick cobwebs stringing one organ to another. And one by one I got to watch that laser focus on each one and literally vaporize them into curls of vapors swirling around in front of the camera. I'm telling you, it is fascinating stuff!

An interesting additional benefit of seeing the video is that I have been given a better understanding of how to allow my body to heal going forward. I was feeling tempted to push myself to resume all normal activity once the 6 week mark rolled by. I realize now that I need to take things slower. I've allowed myself to take a longer leave of absence from my creative career activities instead of trying to push through the muscles spasms up and down my trunk that happen every time I try to sit and create in my studio.

Normalcy will come.

I know that.

But for now, since I've literally seen myself from the inside, I know I need to let my insides take the time they need to heal.

Curious about the surgical techniques for the removal of endometriosis?
Dr. Andrew Cook, a world-renowned surgeon specializing
in the treatment of endometriosis,
discusses the various methods for removal and
shares his philosophy on these options in
a great article on OBGYN.net
To Excise or Not to Excise

Post-op update 6 wks: Cleared for take off!

Last Friday, I had my final post-op appointment with Dr. Cook that finalized the "surgical phase" of my treatment. I have been feeling so good for almost a week now that I was honestly able to tell him my pain levels were zero at the appointment (and I didn't have any pain meds in my system). Dr. Cook cleared me to resume all activity that I feel good enough to engage in as long as I take it in stages and don't overdo it. He also cleared me to do hot tub therapy and massage therapy. I feel like I've passed a major milestone!

The next step is to address the secondary issues Dr. Cook is concerned about--namely my low body temperature (I was 96.7F at the appointment--two degrees below normal). In the next week or two, I have to do a glucose/insulin 3 hour test and some other specialty blood work to determine if I have a thyroid issue or not.

Dr. Cook is also addressing my Vitamin D deficiency (normal is a level of 50-100 and I'm at 10). I'm now taking 6,000 i.u. of Vitamin D a day as directed by him. After taking the Vitamin D for two months, I have to do more blood work to see if my levels have gone up.

I'm focusing a lot of my efforts on adding more nutrients into my diet from whole foods like fruits and vegetables. Since I'm a "supertaster" and taste things with far more intensity than most people, eating some vegetables has always been a challenge for me because I taste unpalatable nuances in foods that others don't (e.g., fresh tomatoes taste like I'm eating the tomato plant instead of the fruit). So Hubby (who does all the cooking) is going to begin employing techniques used by Jessica Seinfeld in her cookbook Deceptively Delicious so I can get the good nutrition from the veggies without being able to taste those nuances.

In the past few years I've removed almost all trans fats (hydrogenated oils) from my diet and increased my intake of whole grains. I'm now trying to eliminate almost all processed flour as well as make sure the majority of my food is as close to fresh and unprocessed as possible.

Little by little as we tackle all the "mystery stuff", I know my health will increase even more. The surgery gave me the freedom. Dr. Cook gave me the clearance for "take off". Now I just need to make sure I'm fueled properly and ready to go.

Post-op update 3.5 wks: A week of mini milestones and stopping to smell the flowers

Another week has passed filled with more healing and more progress toward wellness. It feels so good to be on an upward trend instead of being on a downward one as I was before surgery.

I've forced myself to not work. I'm determined to keep myself from doing so until the 6 week mark has passed. Working would mean spending a great deal of time sitting in my office chair creating. I know myself well enough to know that once I'm in "creative mode", I lose track of time and everything else--including the common sense that would tell me when to stop because my body is hurting and doesn't like it. It's just best if I don't do any creating until after 6 weeks have passed.

Because that huge part of my life has been put on the shelf for the time being, I've found myself engaging in a lot of introspective activities.

This week, Hubby and I took a walk up and down half of our street and discovered the ornamental plum trees on the corner are in bloom. We also discovered that ornamental plum blossoms have a faint floral aroma. I never knew that before.

I felt up to strolling the garden this week. I found the little jonquils at the base of the olive tree are still in bloom. When the sun shines on them (and if I stand in just the right spot) their heady fragrance wafts up to my nose.

Later in the week, I learned how to delegate a major gardening activity to Hubby when our huge potted New Zealand flax blew over in some strong winds and needed to be up-righted and transplanted to a larger heavier pot. It was hard to stand aside and give verbal directions on what needed to be done, but I managed to do it. And dear Hubby was so patient as I tried to articulate what needed to happen (lots of hand signals were involved). I did pull a few weeds from some raised planters while we were out there... until Hubby caught me and told me to stop.

This week also marked the addition of some more regular foods back into my diet. Because of all the surgical work that was done around my digestive tract, I've had to be very selective about my food intake and follow a modified B.R.A.T. diet (bananas, rice, applesauce and toast). I was feeling like I could try and add some things back in and was pleased that my body cooperated pretty well. Last night, Hubby made me a wonderful hamburger with fresh ground beef on a whole wheat bun with some ketchup and some caramelized pan-sauteed onion. It was the first beef I've had since surgery. It tasted so good and didn't cause problems--another great milestone reached!

I am reminded of the movie "What About Bob?" and the line "Baby steps to four o'clock..." Every day I take baby steps toward wellness. They are small and often hardly noticeable, but they are baby steps forward and that's the direction I want to be headed.

"Could be worse... could be raining" is now available in a Kindle Edition
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Post-op update 2.5 wks: The nitty gritty of what my surgeon found

Even though my second week in recovery has had its ups and downs with a minor setback due to a reaction to antibiotics I had to take, I'm doing very well. And since I received my copy of the surgery report, I have gained perspective in how well I'm really doing considering what Dr. Cook found and what procedures were performed in my abdomen.

Here's what Dr. Cook noted in his "findings" in my surgical report:

• Stage IV endometriosis
• extensive omental and bowel adhesions
• adhesions extending from the umbilicus down into the pelvis
• a band of adhesions also in this area
• the bowel densely adherent over the bladder and both pelvic sidewalls
• a complete obliteration of the pelvic cavity
• upper abdominal organs were normal
• appendix was normal

I won't publish the entire procedure here in detail, but here are the highlights:

• Interior of the bladder was examined via a scope inserted through the ureter and found to be normal
• Three incisions were made for the laproscope--one in the belly button, one of the left side of the lower abdomen and one of the right side
• Bowel adhesions were dissected off the bladder
• Descending colon was dissected off the left abdominal side wall
• Sigmoid colon was dissected off the left pelvic brim
• "Slowly, but surely" (an exact quote from the report) the planes were developed in spite of complete obliteration of the pelvis ["obliteration" means "to make undecipherable or imperceptible by obscuring"]
• Bowel was dissected off the cervix and both pelvic sidewalls
• All peritoneum and fibrosis was resected
• Ureters were dissected out of the entire pelvic sidewalls
• All fibrosis was resected out of both perirectal spaces as well as the rectovaginal septum
• Superficial endometriosis and fibrosis was resected off the rectal serosa
• Bladder was dissected off the cervix
• Cervix was removed
• Suturing and close-up happened

I know the above illustration is small but it's the largest I could find on the web that showed everything.

The Pathology Report

The pathology report was attached to my surgical report. A total of 6 specimens were taken and submitted to pathology from the different areas that were operated on during the procedure. Of the six specimens, three came back showing that I had active endometriosis on my right and left pelvic sidewalls as well as on the rectovaginal tissue.

My Insights and Thoughts

• Holy cow! No wonder I felt like I did!
• A hysterectomy doesn't cure endometriosis! My case proves that even after a hysterectomy, endometriosis can still thrive and grow without reproductive organs being present. If you're told otherwise, seek a second opinion!!!!
• Just like a cancer survivor, I don't think I can ever have complete peace of mind that the disease is completely gone. But I can start marking my time from this point forward and enjoying the freedom I've been afforded thanks to Dr. Andrew Cook's surgical expertise.
• I definitely need to take the entire 6 weeks of suggested recovery time and let my body rest so it can heal. Although I am always tempted to jump the gun in this department, this time I'm going to exercise every ounce of self-restraint and take it slow.
• And, finally, I am very hopeful that now that my omentum, descending colon, sigmoid colon and bladder are freed from being stuck to things they shouldn't have been stuck to my body will find a proper balance and I can begin to lose weight and find true wellness for the first time in a very long time.

I owe so much to my extremely talented and compassionate surgeon, Dr. Andrew Cook. He has a great blog where he chronicles his road to becoming who he is today. If you have the time, I highly recommend reading his story. It's great reading! Links are below:

Freezing Nails
Amazing Mentor
The Benevolent Dictator
Award Winning Scientist
A Computer at My Fingertips Reaches Around the World
Core Lessons
Vital Health Institute

Meet "my" amazing medical team at Vital Health Institute

Post-op update 1.5 wks: The joy of living in stretchy pants

It's been a week and half since my surgery and my body is cooperating in the healing process. I still have to take pain medication regularly in order to maintain a level of comfort that is conducive to healing (just as Dr. Cook instructed). My energy levels are better than I anticipated, and I'm also surprised how easily I was able to go back to a regular food diet.

Although I'm tempted to push myself and just "go go go", I'm forcing myself to follow doctor's orders and give my body the full 6 weeks of post-op recovery that he said I will need. Who knows what I'll be like around week 4.

I have yet to receive my own copy of the written surgery report and the dvd of my surgery, but that will come eventually. I want to know all the details involved in the procedure but I'm doing well being patient as I wait. Once I have the report in my hot little hands, I'll be pouring over it in great detail.

For now, I'm enjoying a recuperative "vacation" spent in oh-so-comfy lounging togs (aka stretchy pants, sweats or PJs) while watching copious amounts of HGTV and all my fave shows on the dvr and Netflix.

And when I need a little "action"... I go up and down the stairs a couple of times in one day.

It's real! The endo is really "out-o" and my journey toward wellness begins

When I've shared the above photo, I've been asked "Is this real?" My answer is, "Yes! I was at the marina with camera in hand and happened to look up at just the right time when a seagull flew in front of the sun. Luckily, I snapped the shutter in time."

Since my surgery last Tuesday, both my husband and I have been asking ourselves the same question... "Is this real?" There is so much that occurred on Tuesday that seems unbelievable. We're still trying to wrap our heads around it.

In my last pre-op appt on Monday, Dr. Cook had me sign off on all the consents necessary prior to surgery. The list of possible surgical actions was pretty extensive and included things like the possibility that my appendix might have to be removed; the possibility of hernia repair; and the potential of bowel resection in case a section of my bowel needed to be removed because of endo damage. That long list of "possibles" made estimating the length of the surgery difficult. A total of 300 minutes (5 hours) had been blocked out for the operating room and staff, but Dr. Cook said it could go longer... much longer. I was mentally prepared for that.

On Tuesday a little after noon, I went in to surgical admitting at Good Samaritan in San Jose. All my vitals were taken. I was very calm. My very kind admitting nurse said I won the best blood pressure award for the day (124 over 79). I got changed into a lovely lavender-periwinkle surgical gown, got my I.V. put in and finished my pre-op interviews with the admitting nurse. I signed and initialed more consents with the long list of "possibles" on them.

One of my OR nurses came and introduced herself. I liked her right away.

Then I met my anesthesiologist. I liked him right away too. He informed me that in order for Dr. Cook to have the best access during surgery, my body would be positioned at a steep incline with my head down. He then told me that I would probably wake up puffy and possibly have blurry vision from the pressure that could build up in my head.

Shortly after that, I was wheeled to the OR. I gave hugs and kisses to my husband, my mom and my sister-in-law before I was wheeled through a set of restricted-access double-doors and into the OR. I met my other OR nurse there and liked her right away too. I felt so calm and at ease. Everyone on my OR team was so kind, confident and capable. I closed my eyes and fell asleep assured that I was in excellent hands.

When I started to wake up from the anesthetic in post-op recovery I was surprised that the only discomfort I felt was the feeling of an overly full bladder. Even though I had a catheter in, my bladder tissue was in spasm causing me the sensation (it was rectified with a dose of peridium in my I.V. once I got settled in my room where I would spend the night). My vision was blurry as I had anticipated. I finally asked someone what time it was and how long the surgery had taken. Imagine my surprise when I was told it was only 4 1/2 hours from the time I'd gone to sleep! It was the first time this week I asked myself, "Is this real?"

Dr. Cook's first words after greeting my family following surgery while I was waking up were, "Mission accomplished!"

My wonderful sister-in-law took great notes when Dr. Cook met with them. Her notes read:

• 4 1/2 hour surgery
• harder than expected
• scar tissue and bowels stuck
• was over the bladder
• getting back to normal anatomy
• got cervix removed
• did well overall
• appendix was fine--didn't have to remove it
• face is puffy from being upside down
• will take catheter out in morning
• first 2 weeks will be sore
• by 3 weeks will still be tired but better

Dr. Cook had taken fascinating photographs through the laparoscope and had them in-hand when he met with my family post-op. He told my family he wished he'd taken more. I think he was too busy concentrating on the tasks at hand.

He then repeated his initial statement, "Mission accomplished." He had gotten all the endometriosis and all the scarring/adhesions out. It was gone. My body was free. I was back to normal anatomy. My husband found himself thinking, "Is this real?"

Five days later both of us catch ourselves still thinking the same thing. My post-op discomfort and pain has been so minimal with the help of the pain meds that it seems too good to be true. I've been up and moving around since only a few hours following waking up from surgery.

Yes. It is real. The endo is gone. It is real. My journey on the road to wellness has begun.

I'm anxious to get the official surgical report so I can read it. I'm also looking forward to watching the video of the actual surgery to see what Dr. Cook saw. I will share some of that here on the blog once I get it (not the video so don't worry).

In the meantime, I'm resting a lot. Sleeping is something my body wants to do all the time right now. And if I stay on schedule with taking my pain meds (generic Norco), sleeping is comfortable and restful. I'll post more in the days and weeks to come. Right now, it's time to rest again.

Facing the dawn with my sunny face on

I had my last pre-op doctor's appointment today, and everything is a go! Although my surgeon was very realistic and frank with me about what my post-op recovery will most likely entail, I still feel peaceful and happily anticipatory at the prospect of finally having each future day be a day of healing instead of a day of waiting.

Endometriosis is such a tricky disease. I've learned that over the past few months in my self-imposed crash course of learning what I didn't know before. Dr. Cook and his staff have been instrumental in a lot of that learning. I am hopeful that once he's got his laparoscope inside that he (and eventually me) will have even more knowledge.

Many people may not think this is cool, but the fact that the entire surgery is being digitally recorded and that I get to have my own dvd of the surgery to keep afterward really intrigues me. Quite frankly, I'm curious to see what's been invading my body for about three decades. I doubt I'll invite friends over for popcorn when I view it though, so you can all rest assured you won't have to figure out a way to decline an invitation.

Killing time working the pre-op checklist

When I initially met with my surgeon, I was given a neat and organized folder with all the helpful paperwork I would need before and after surgery. One paper, in particular, caught my attention... the checklist!

I love checklists.

And now with less than 2 weeks until surgery, I can finally turn to that checklist to occupy my impatient self! It's a great way to kill time. And it diverts my attention so I don't whine as much to my long-suffering husband.

There's lots of "fun" stuff on the checklist like: when to get my pre-op blood work done; when to stop taking certain medications and/or herbal supplements; and when to purchase and take priobiotic, magnesium citrate, and laxatives. I told you... "fun" stuff.

This week I got my blood drawn by a wonderful phlebotomist that did such a great job I didn't feel a thing even though it took two tries to find a vein, and there were over a dozen vials that needed to be filled. I was amused to see another phlembotomist's framed certificate on the shelf of the blood draw room we were in. The woman's last name was "Hurts". There was a wedding photo on another wall, so I began to wonder if "Hurts" is her married name or her maiden name? Did she choose her profession with that last name or did the last name get given to her after the fact? As you can tell, I had a lot of time to think up lots of inane questions.

This week also marked the date on the checklist that I can no longer take certain medications until after the surgery. There were lots of herbal supplements on the list too but since I don't take any I didn't really have to worry about them. But I do have to go without taking any pain relievers like ibuprofen and aspirin until after surgery because they're considered blood thinners. Since ibuprofen is the only pain med that works for me, I'm having to tough it out.

I'm finding prayer to be a great pain reliever... that and copious amounts of orange sherbet ice cream.

Going forward with faith into the new year and my surgery

With faith, I stepped into the new year hopeful that the change-over of our health insurance had gone as planned over the Christmas holiday so my medical team could pick up the ball and run with it on January 3rd when they got back to the office.

My faith was not in vain.

I have an amazing team of people working to make my surgery happen--my husband, the staff at my doctor's office and (believe it or not) some kind souls at our new health insurance provider's office.

To my relief, I've been informed that the surgery date being targeted is only 2 1/2 weeks away. I've got a pre-op checklist to work on between now and then. I'm sure the time will go by quickly.

I'm trying my best to stay comfortable. Fortunately, sitting in my studio working on art doesn't cause me much discomfort. And my sweet husband is taking care of all other household tasks. I'm one fortunate woman!

When are we gonna get there? When are we gonna get there?

When dealing with an individual with a lack of patience such a child or pooch, it is wise to give said individuals mini milestones as diversions to keep the "when are we gonna get there" behavior at bay. On a 6 hour road trip with children, it may be the game of spotting out-of-state license plates. In the waiting room at the vet with a pup, it might be a rawhide chew.

It's taken me many years to admit it openly and without shame, but I am willing to admit it in writing right now... I suffer from a chronic state of diminished patience. Yes. I am patience-deficient. And like the aforementioned tots and canines, the most effective coping mechanism for me is having a mini milestone (or two... or three... or four...) to keep me from turning into a whining "when are we gonna get there" brat. It preserves my husband's sanity and prevents me from making a complete nuisance of myself.

At my last appointment, my doctor unknowingly threw out a perfect milestone for me to latch onto. While looking in my mouth he noted that I had two mercury amalgam fillings and said in an off-handed fashion something like, "Have you considered having those replaced?"

I was happy to reply that my dentist has been systematically switching them out over the last couple of years because of his concern about the health risks associated with mercury. I then added that those two fillings were the last ones left.

With a smile my doctor said, "Well, it looks like I'm preaching to the choir then. I strongly suggest you get those last two replaced, because we're still not sure what influence they have on endometriosis."

That's all he needed to say. I had a golden mini milestone to latch onto like a dog on a rawhide chew.

Appointments were made with our dentist, so I could have the fillings replaced. My husband decided to do the same. My focus over the month of November and the early part of December was simply to get those offending fillings out of my mouth. But just as quickly as the Novocaine from the procedure wore off, the placating effect of this milestone was gone once I had checked it off my to-do list.

Now I'm back to being like an obnoxious child in the backseat of the family sedan griping about how long it's taking to get to Disneyland. It doesn't help that my body feels like it's grinding to a halt progressively each week I have to wait. My ability to do normal everyday tasks like vacuuming has been diminished to a point I never thought I'd be at in my life again.

But I'm whining...

The logical solution is to give me another to-do milestone, right? I figured if we could get the surgery date set, that would help. In order to do that, the doctor's office needs to work up what the costs will be, which hospital should be used to be compatible with our insurance coverage, and how much we're going to be paying out-of-pocket. Even though we haven't received any of our paperwork in the mail, our new insurance provider was kind enough to give us our member numbers over the phone but informed us that our member numbers aren't connected to a specific health-care plan in their system yet. The paperwork still has to come from my husband's employer and that usually doesn't happen until the week between Christmas and New Year's. Consequently, the billing codes and dollar amounts my doctor's office needs aren't available until we are in the system fully.

Oh, and did I mention that my doctor's office is closed from December 23rd to January 3rd?

Yeah... Lovely...

"But it's still do-able," I think to myself, "We can still get my surgery scheduled in the first week to week and half of the new year. I can will my body to be okay until then. As long as I don't have to wait until the end of January or the first of February, I can do this."

Famous last words...

Then we found out my doctor's assistant surgeon (who must be present for my surgery to occur) is going to be unavailable the first weeks of January through the 23rd. The earliest date I could have surgery is January 24th.

When we were informed of this little tidbit, my first thought was,"Well, he'll probably be vacationing in some tropical locale like Tahiti during those weeks". (Yes, my impatience can make me somewhat snarky.) Maybe my own secret desire to be lounging in a chaise surf-side somewhere during those weeks has a lot to do with that conclusion on my part.

Believe me. If we didn't have large medical bills staring us in the face, I'd figure out a way to be on a tropical island myself until January 23rd! If I have to feel lousy and can't clean my house, I might as well be looking at the rolling Hawaiian surf instead of the dust bunnies that are breeding faster than I can count.

Seems like sound logic to me! Too bad my bank account (and my husband) wouldn't agree.

Walking one little baby step at a time

During the past week following my consultation and appointment with Dr. Cook, I've been acutely aware of the miracles in my life--both small and not-so-small. There are some things in life that happen in such beautifully aligned orchestration that I can only attribute them to a higher power whose eyes can see things from a perspective that I cannot.

I've always loved maps, so a few years ago I came up with an analogy that I picture at times like this...

I imagine a paper road map of the state of California all unfolded and spread out. I'm like an ant crawling along on the map, only able to see a giant ink line in front of me. Sometimes I can't even tell what that ink line's name is, but I just continue to follow it. Then there is God--the holder of the map. From His perspective He can see the map in its entirety and can see the things my ant eyes cannot see from my limited vantage point. He can see that the black ink line I'm following is actually a road--Interstate 5 to be exact. And if I continue traveling in the direction I'm headed, I will eventually reach a wonderful destination--Disneyland! My loving Heavenly Father can see each leg of my journey plainly. He knows there are off-ramps and interchanges I need to take in order to continue to head in the right direction. He knows there are some odd little towns I must pass through. He knows there are rest areas along the way. He knows there are incorrect off-ramps I could take if I'm not paying attention to His navigational guidance, and I can get lost. But if I'm ever lost and wandering, He's always there to navigate me back to the road I need to be on whenever I'm ready to finally listen again.

I have felt like that little ant this past week... in a good way.

Because our current health insurance through Hubby's employer (a health care provider itself) didn't cover any of the specialized services I will need, we were facing some hefty expenses. The black ink line in front of us seemed extremely daunting.

But as divinely orchestrated timing is often perfect, my physical complications increased significantly over a short period of time so that I would seek out medical information and advice over the months of August and September. I would have continued to just put up with things otherwise, because I hate going to the doctor for anything.

All that researching led me to find Dr. Cook's website and get an appointment only a week before the month of October ended, coinciding perfectly with the October 31st deadline of the open enrollment period of Hubby's employer the only time once a year when we could change our health insurance options.

And, miraculously, his employer now offers one health insurance option outside their facilities/network that wasn't offered only a few years ago. That PPO option will pay 90% of in-network costs and 70% of out-of-network costs. This means that Dr. Cook and his assistant surgeon are the only two items that will be out-of-network for my surgery. The rest can be arranged in-network.

As an added blessing, our new health insurance option has a maximum out-of-pocket cap on it that is a fraction of the original medical fees we were going to have to pay over the next year with pre-op, surgical and post-op costs. There will still be out-of-pocket expenses incurred, but I am hopeful that some creative projects I have planned will contribute significantly to paying those so our household budget doesn't take a hit.

I am humbled by it all... truly humbled. And I am filled with immense gratitude.

I will have to wait until the first of next year when our new health insurance coverage takes effect to move forward with surgery, but I can tough things out for a couple of months. It is a small price to pay.

In the meantime, I'm just going to continue to walk along that big black ink line one little baby-ant-step at a time.

We drove over 120 miles today to get some peace of mind and got hope as a "parting gift"

Despite much trepidation, I went to see a specialist today. I'm so glad I did. My husband and I had to drive over 60 miles one way to get to the Vital Health Institute to meet with Dr. Andrew Cook, but it was a drive worth making. It was one of the most positive experiences I've had dealing with the medical profession. That's saying a lot.

The incredibly kind staff and soothing office ambiance put my mind at ease shortly after arriving. Prior to any exam, my husband and I had an opportunity to meet with the doctor in a comfortable consultation room furnished with cushy chairs. It was so refreshing to be able to review my medical file in comfort and fully clothed instead of sitting on an exam table with my chilled legs dangling from underneath a paper smock.

Here are some more refreshing aspects of my visit:

• The doctor wasn't rushed because he sets aside an hour to an hour and a half for initial patient consultations/exams.
• He had reviewed my file before I came in so he was familiar with my history and ready to "hit the ground running".
• The doctor managed to be both kind and straightforward in his answers.
• He performed the ultrasound/sonogram himself so he got images of what he is looking for instead of what a tech thinks he may want to see.

I had my share of "a-ha" moments during the consultation as Dr. Cook enlightened and educated us. Here are the major "a-ha's" I gleaned from my consultation and exam:

• The doctor suggested that because of the nature of ovarian tissue (it's very sinewy) and because of the amount of scar tissue I had around my ovaries back in 2005, it is highly probable that a piece of an ovary was left behind back in 2005. It would explain why my symptoms have somewhat a cyclic pattern.
• The doctor helped us understand that endometriosis implants are, for all intents and purposes, "tumors". And recent research has uncovered that those implants can create their own estrogen and keep going even if all reproductive organs have been removed or shut down artificially. That's why recurrence after hysterectomy is high if all implants are not excised the first time. It's also why popular hormone therapies (e.g., Lupron) can be ineffective.
  
• The doctor showed us that even though endometriosis can't be "seen" with ultrasound, a trained specialist's eye can see indications that scar tissue is most probably present (as in my case).
• Based on my exam, the doctor believes I may have interstitial cystitis in addition to the endometriosis. The two conditions could be related.
• Finally, the doctor enlightened us that long-term sufferers of endometriosis can end up experiencing other tangentially related issues. In my case, I may have a connected form of insulin resistance. All of that will be explored further down the road.
  

Even though my case is a complex one, he is hopeful that with surgery I can regain the quality of life I had a brief glimpse of a couple of years ago. It means that surgery is in my future. But it also means that there's hope of feeling well again!

Dr. Cook used a great analogy. He said it's like someone that's getting horrible gas mileage with their car. They can go have it tuned up, get new tires, and overhaul everything. Then come to find out that the emergency brake has been engaged the whole time. The emergency brake has to be disengaged or all the other measures won't make up for it. The car will still get lousy gas mileage. Endometriosis implants are like the emergency brake. We have to take care of that first or nothing else that we do will really solve the problem.

This all means that we have to make some harder decisions if we want to make surgery a possibility due to financial considerations, because Dr. Cook is an "out-of-network" doctor for any health care coverage, not just ours. Other aspects of the surgery like the hospital and anesthesiologist could be covered by some PPO health insurance plans, which we don't have. We have some options in that arena, so we're having to examine those carefully.

Despite those factors, both of us came out of the appointment feeling like a huge weight had been lifted off our shoulders--this, after we had both been on the verge of tears going into the experience. That's very telling to me. The calmness we each feel individually and together is very telling too.

Needless to say the 60 mile drive home was a lot less tense then the ride there.

More pieces of the puzzle with the receipt of my surgical records

WARNING: THIS POST CONTAINS LOTS OF MEDICAL TERMS AND SURGICAL SPECIFICS AND MAY NOT BE APPROPRIATE FOR AUDIENCES THAT HAVE RECENTLY CONSUMED A MEAL.

Over the weekend, I received my medical records from my surgery back in 2005. This is the first time I've had them in my possession and been able to read them for myself. My emotions are trying to find an even keel right now. It's hard. I know my brain is just trying to process everything.

The striking part of the surgical report is at the top of the first page. It reads:

PREOPERATIVE DIAGNOSES:

1. Bilateral ovarian cysts.
2. Left hydrosalpinx.*
3. Pelvic pain.

* A hydrosalpinx is a distally blocked fallopian tube filled with serous or clear fluid that can become distended giving the tube a sausage-like shape (as in my case)

Then right below it is the striking contrast. It reads:

POSTOPERATIVE DIAGNOSES:

1. Endometriosis
2. Right endometrioma**
3. left hydrosalpinx
4. left endometrioma**
5. Pelvic adhesions

**Endometrioma is a noncancerous cyst or tumor formed when a tiny patch of endometrial tissue (the mucous membrane that makes up the inner layer of the uterine wall) bleeds, sloughs off, becomes transplanted, and grows and enlarges inside the ovaries.

Clearly, my doctor had no clue that she would find what she did. It's as plain as day.

After our health care switch to Kaiser, I met with a new doctor and tried my best to get her up-to-speed with my surgical history. When I explained that my endometriosis was something the doctor had not suspected or anticipated, I had this new doctor patronizingly tell me that she was certain the doctor that performed my surgery must have had a suspicion of what would be found and that she was certain the surgeon wasn't caught off guard. I had begun to think she might be right--that my recollection of the events must have been filtered somewhat through my own surprise. But the surgical report proves otherwise--some vindication and validation for me.

It is also striking that the radiologist's write-up on my pre-op ultrasound findings don't give any hints either. More validation that no one suspected what was really going on inside me.

In addition to validation, I've had some new revelations come about while reading through my file.

The surgical report indicates that my endometrial adhesions were worse than I had been told. It states, "Packing of the bowel was difficult with adhesions of the sigmoid to the posterior aspect of the uterus, as well as ascending colon adhesed to the left hydrosalpinx and ovarian cyst."


The ascending colon (shown above as 1) is the first part of four sections of the large intestine. The sigmoid colon (pelvic colon) (shown above as 4) is the last part of the large intestine and is closest to the rectum.

Until now, I didn't know that both ends of my large intestine had been adversely affected. I had mistakenly thought it was only the last section of my colon that was affected. I can completely understand now why I was having such digestive problems prior to surgery. And I'm also understanding how endo implants left behind on both ends of my large intestine could be impacting my digestive health at present. It would explain a lot.

The surgical report goes on to state that the hysterectomy (pre-planned at my insistence) was started. After clamping and isolation took place the report then states:

"At this time, a decision was made to do a supracervical hysterectomy [leaving the cervix in] since our exposure in the pelvis was inadequate and the risk of injury to uterus was higher with the adhesion of the sigmoid to the lower aspect of the uterus. That was dissected down until we could perform a supracervical. At this time, the cautery was used to remove the uterus from the cervix and the specimen was removed from operative site. The right fallopian tube and ovary were then isolated with fine dissection."

When the doctor spoke to my husband and me immediately after surgery (once I was awake), she had indicated the reason for this decision was to avoid injury to my ureters that were heavily encased in adhesions (scar tissue). I'm thinking that she either left that out of the above statement or meant to type "ureters" instead of "uterus" in the first sentence. Regardless, it is clear that my surgeon was having to think on her feet and make decisions on the fly. Again evidence that she hadn't anticipated what she found.

When I moved on in my file to the post-op pathology report from the lab, I found other information that hadn't been passed on to me.

The post-pathology report states that there was a benign sessile endometrial polyp in my uterus "showing a striking degree of papillary and eosinophilic metaplasia".

Yeah... when I first read that I was thinking what you're thinking right now... WHAT?!?!

So I looked stuff up. Here's what I found:

• A sessile polyp (less common than a pedunculated polyp) is an elongated flat mass in the inner lining of the uterus that can cause heavy menstrual bleeding (which I had).
• A papillary metaplasia is a uterine lesion often usually found in women that have estrogen levels that aren't balanced by equal progesterone levels (which I had) as well as women with endometriosis (which I had).
• Eosinophilic metaplasia "refers to the phenomenon in which endometrial cells are replaced by other types of cells which are either not seen or very rarely seen in normal endometrial glands". This phenomenon can also be estrogen induced. [Eosinophils or eosinophiles are white blood cells that are one of the immune system components responsible for combating multicellular parasites and certain infections in vertebrates. They are "acid-loving" and are normally found in the lower gastrointestinal tract, ovary, uterus, spleen, and lymph nodes. Increased levels are associated with auto-immune diseases.]

Interestingly, according to one source I found, one possible cause of endometriosis is metaplasia. This source also states that papillary metaplasia is rare and usually found in post-menopausal women (usually benign as it was in my case).

Here's why the pathology report is significant...

Prior to 2003, I had read a book about the symptoms associated with estrogen dominance. I had many, so I decided to order a saliva test through the internet to test my hormone levels and see if my hunch was correct. It showed that my estrogen levels were normal but that my progesterone levels were those of a post-menopausal woman (I was 33 and far from menopausal). Because my progesterone levels were so low in comparison to my estrogen levels, I was estrogen dominant. This fact was confirmed by a formal blood test when I was pregnant in March 2003 and I was subsequently classified as a "high risk pregnancy" because of such low progesterone levels. I lost the pregnancy at 13 weeks not knowing that the reason was because of the endometriosis and not my hormone levels.

Now that I sit here with my surgical report in my hands, I can see how everything is interconnected--more mysteries solved and more vindication after being told by one former doctor there wasn't anything wrong with my uterus and that I was imagining things (I only saw her once).

But the increased enlightenment and vindication still doesn't help the nervousness I feel about the path forward. I still have to juggle getting medical advice from doctors that are covered by our health insurance and getting a second opinion from a doctor who isn't.

I try not to think about it too much. Otherwise, I find myself tearing up or clinching my teeth from the stress. And teeth clinching just gives me a sore jaw and a headache. That's the last thing I need on top of everything else.

It feels much better to crank up some of my favorite tunes and have a sugar-free Popsicle or two.

Things I wish I'd been told years ago about endo

The past couple of weeks, I've been preparing to go back "into battle". One of the ways I do that is to arm myself with as much information as I possibly can. As I've scoured the internet for the latest information and research on my disease, I've found some amazing facts. I've started a link list in the sidebar of this blog so others can locate the same resources I have.

But one resource struck me so deeply I had to give it its own post.

From the website of the Endometriosis Association:

What we know about endometriosis today is in large part due to continuing research by the Endometriosis Association. Here are just a few of the breakthroughs our research has revealed

• Endometriosis can be caused by exposure to dioxins: groundbreaking research started in 1992 shows that endometriosis can be directly related to environmental toxins such as dioxins, providing for the first time a provable cause of endometriosis Learn more
  
• Endometriosis is an immune system disease: research shows endometriosis is an immune disease as well as an endocrine disease
• Endometriosis linked to autoimmune diseases: research shows links to autoimmune diseases in women with endometriosis
• Pain: research shows links to cancers in women with endometriosis Learn more
  
• Age: research shows endometriosis is beginning at a younger age, is more severe, with more symptoms, and is more debilitating in girls and young women currently diagnosed
• Diagnosis: research continues on noninvasive diagnostic techniques

Think "killer cramps" are normal? Think again!
Take this quick questionnaire
from the Endometriosis Research Center.

"...And knowing is half the battle" ~G.I. Joe

A few weeks ago I was going through my normal routine of reading some local news when a headline on our local newspaper's website caught my eye.

"Endometriosis pains millions of women yet remains misunderstood and misdiagnosed"

Having been diagnosed with endometriosis 5 years ago, of course I was curious what they had to say. As I read through the article there wasn't much that was new to me... except for one little word... "disease". Over and over the word "disease" was used to describe what I had. Slowly it began to sink in that what I had been diagnosed with 5 years ago wasn't a "condition" or a "syndrome". It was a disease. And as I began to explore more resources, I realized that despite my hysterectomy 5 years ago, this disease is not something in my past. It is very much a part of my present reality.

Earlier this year I got a flu that was going around that walloped the heck out of everyone's digestive tract who became ill with it. I was no exception. As the months went on and I began to feel other digestive related maladies, I kept chalking them up to hold-overs from the flu I'd had.

But as I read the article again and again, I began to let myself connect up my symptoms with what I'd felt in the past. And the more introspection I did, the more I realized that the "monster" I had thought I had vanquished hadn't been done away with. It had only been knocked out for a while.

"Even with surgery, however, endometriosis is difficult to diagnose because it can take on different colors and shapes, and can be hidden.
"'It's more like if you got up in the morning and the bed sheets are all messed up and there's a quarter in there. It's easy to miss it," [Dr. Andrew] Cook said. "There are folds and tissue and the bowel gets down in there. You've got to basically pull the bed sheets straight and make sure you see everything.'
"As a result, a woman can wait nearly a decade or longer before being diagnosed with endometriosis, according to a survey of 4,000 North American women conducted by the Endometriosis Association."

I had gone for over 20 years before being diagnosed, so the "messed up bed sheets" in my body were far worse. Five years ago, my doc had me in surgery for cyst removal and a hysterectomy, not for what she found. She'd most likely left enough "quarters" for a whole party of kids to have a hey day at Chuck E. Cheese.

Great.

As I hunted the internet using keywords like "post hysterectomy endometriosis" I was given a rude awakening with new information about my disease that my doctor hadn't told me about 5 years ago.

From Heather Guidone, Surgical Program Director, Center for Endometriosis Care:

"Endometriosis persists after hysterectomy because hysterectomy removes organs, not necessarily disease. Any implants left behind in the abdomen will continue to thrive in their own self-sustaining life cycle (it matters not if the ovaries are removed), because the implants themselves produce an estrogen-synthesizing enzyme called Aromatase.

"The key to successful treatment of Endometriosis lies in true excision, which the surgical dissection and meticulous removal of all disease - from all locations, including bowel, bladder, etc., which many surgeons are reluctant to treat and simply leave behind. True specialists, however... are able to intervene laparoscopically and thoroughly eradicate all disease.

"Endometriosis recurs after hysterectomy in women who did not have the disease excised in more than 40% of cases within 5 yrs. [Accreditation HealthCare Commission stats]."

Double great.

I'm pretty certain what my body is feeling and trying to tell me. And the thought of going back to where I was before Halloween 2005 makes me want to run far away to a tropical island to lay in a hammock for the rest of my life (something Hubby isn't going to let me do).

To complicate matters even more (if that's possible), I no longer have the same healthcare coverage I did 5 years ago. I'm now a Kaiser Permanente patient which means the majority of my care must come from one of their facilities unless it's something so specialized that they don't have the facilities to treat it. It also means that my entire surgical history is outside the Kaiser system.

It just gets better and better, doesn't it?

This past week, I've spent most of my time emailing my Kaiser GYN about referrals, filling out the forms necessary to get my entire 2005 surgical file in my own possession (something I should have done a long time ago), and battling a blasted cold that decided now was the perfect time to infect me.

The good news is that my doctor has already sent through a referral to the recently formed Chronic Pelvic Pain Clinic at our local Kaiser facility, and I've already heard back from the clinic that I'm on the waiting list to be seen. I've also been told that they deal almost exclusively with endometriosis cases.

While I wait for Kaiser, I'm pursuing getting a second opinion from Dr. Andrew Cook (the doc quoted in the article above) who is here in the San Francisco Bay Area. The only problem is he isn't covered through my healthcare. Still, I feel strongly that I need a specialist with his expertise to take a look at my case. Once I have my 2005 file in my hot little hands, I'll be going to see Dr. Cook.

In the meantime, I'm trying to ignore the discomfort I'm feeling almost constantly now. If I focus on the positive and give myself permission to rest as needed, I'll get through this much easier... at least that's what Hubby keeps telling me.

What Is Endometriosis?

From the Endometriosis Research Center:

Over 5.5 million women in the United States alone suffer from a painful, chronic gynecological disease known as endometriosis. Affecting more women than breast cancer, endometriosis is a leading cause of female infertility and hysterectomy. The disease can have a debilitating impact on a woman's life and her relationships; in some cases rendering her unable to work, care for herself or her family, or go about her normal routine. Studies have even shown an elevated risk of certain cancers and autoimmune diseases in endometriosis patients. Currently, there is no definitive cure for endometriosis.

The Missed Disease

The average delay in diagnosis of the disease is a staggering 9 years. The disease is often confused for Pelvic Inflammatory Disease, bladder infections, Irritable Bowel Syndrome and a multitude of other conditions. It is important for patients and physicians to work closely together to detect, treat and effectively manage endometriosis at the onset of symptoms.

What is Endometriosis?

Endometriosis is a disease in which the endometrium (the tissue that lines the inside of the uterus which builds up and is shed each month during menstruation) is found outside the uterus, in other areas of the body. These implants still respond to hormonal commands each month, and break down and bleed. However, unlike the lining of the uterus, the tissue has no way of leaving the body. The result is internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue. Endometriosis lesions can present themselves in almost any color, shape, size and location. The lesions can be virtually any color including black, red, white, clear and more, and they can be microscopic in size. Endometriosis implants can be spread throughout the entire pelvis including the reproductive organs, bowels, bladder, diaphragm and other areas in the body, and may not be visible without proper magnifying equipment and thorough examination. While uncommon, endometriosis has even been found lodged in the skin and the brain.

Symptoms of Endometriosis

Symptoms include, but are not limited to:

• heavy bleeding and pain before, during or after menstruation (pain is not normal!)
• nausea
• constipation
• diarrhea
• pain with intercourse
• ectopic pregnancies
• miscarriages
• infertility
• backache
• bladder pain
• premenstrual spotting
  

How is it Diagnosed?

Endometriosis may be suspected based on your symptoms. However, the disease can only be definitively diagnosed via surgery; either a "keyhole surgery" known as laparoscopy ("lap") or the more invasive laparotomy.

How is it Treated?

Studies have shown the most effective treatment for the disease is thorough eradication of all endometriosis. Unfortunately, if all the disease is not removed, there is an extremely high rate of recurrence.

Who Gets Endometriosis?

The outdated, misinformed theory that "white career women who delay childbearing" are the prime candidates for endometriosis could not be further from the truth. The disease knows no racial or socioeconomic barriers. It can affect any woman of reproductive age, from as early as a girl's first menstrual period. Endometriosis is also commonly found in women who have undergone hysterectomies and post-menopausal women [studies have shown that endometriosis implants produce their own estrogen and thrive even if all other hormone-producing organs are removed or non-functional] .

My story... in a very large nutshell

I don't care... I'm going to talk about it

I know there's a lot of people that don't like to talk about "women's issues". It makes them squirm as they frantically search for an opportunity to change the subject. That's probably the reason why I'd never heard of endometriosis before I was diagnosed in 2005. That's why so many women suffer from this disease in silence and/or ignorance. Well, guess what... I don't care. I'm going to talk about it!

What is endometriosis?
Click here to find out

A not-so-brief history of my life once I became "a woman"

I started menstruating at 14 1/2 years old and almost immediately suffered severe cramps. But since the other women in my family did too, I was told it was "normal".

As I aged into my 20's, my cycles got shorter and my flow got heavier. The pain was excruciating (often at a 9 or 10 on a scale of 1 to 10). I learned large doses of ibuprofen would dull the pain enough that I could rock myself into a fitful sleep and just sleep the pain away. Needless to say, I did a lot of sleeping every month.

By my late 20's, I was beginning to have odd pain in my right shin bone that would radiate through my leg. I went to see my general practitioner about that. Lots of tests were run, but no conclusive diagnosis could be reached. On the advice of my GP, I went to see an OB/GYN who diagnosed me with severe PMS and put me on birth control pills.

I got married in my early 30's. We immediately started trying to get pregnant so I went off the birth control pills. Year after year went by with no success. In the meantime, I was having increasing pressure in my lower abdomen and pelvic region in addition to the intense pain with my periods. There were days I couldn't stand up straight.

During the rest of the month, I felt like my uterus was blowing up like a slowly inflating balloon. My former OB/GYN had left her practice, so I went to another one who told me I couldn't possibly be feeling the sensations I was describing. She inferred that I was imagining things and wanted to put me on birth control again. Not helpful. That was the first and last time I saw her.

I persevered on knowing I wasn't imagining things but was at a loss for answers.

In 2003 (just before our 5th wedding anniversary) we got our fondest wish--a positive pregnancy test. All the blood tests and doctor's appointments were scheduled. I was excited because I was going to finally get the OB/GYN who had a stellar reputation in our community--such a reputation, in fact, that she only took patients with a positive pregnancy test.

My first blood tests showed my progesterone levels as extremely low so I was immediately prescribed progesterone cream to prevent losing the pregnancy and was classified as a "high risk pregnancy".

When it came time for the first ultrasound (something we had envisioned as being a wonderful bonding experience with us getting to see the heartbeat for the first time), my doctor was out of the office so it had to be performed by one of her colleagues. He noted that my uterus had a weird shadow on it, and he couldn't find a heartbeat this early. He mumbled that I must have miscalculated how far along I was. *sigh*

A second ultrasound with my own doctor went even worse than the first with her using insensitive language right off the bat. Just a note to anyone who cares, phrases like, "Well, this may not be a viable pregnancy..." aren't very good bedside manners when dealing with a high-risk pregnancy and a couple that has only been able to get pregnant once in 5 years.

I made an appointment with another doctor for a second opinion.

Before even seeing me, the second doctor ordered another ultrasound (this one performed by an ultrasound tech at an imaging facility). I wasn't going to get the results until I met with my doctor at our first visit. The day before my scheduled appointment at 13 weeks along, I started showing signs that I was having a miscarriage. A phone call to the doctor's office resulted in the advice, "Since she has an appointment tomorrow, just have her keep that appointment and we'll see her then." I miscarried at home--painfully and traumatically. The next day I went to my appointment. No one had noted on my file that we'd called to say I was miscarrying. So in the midst of hormonal chaos I had to explain repeatedly that I'd lost the pregnancy the day before to every disinterested member of the office staff.

The doctor saw me. She said I was fine. She didn't like the progesterone cream I'd been put on because it was a brand from Europe and a name she didn't know. She thought that may have contributed to the loss of the pregnancy. She ended our appointment with, "You can start trying again in 6 weeks."

I never had another positive pregnancy test again.

I don't care... I'm going to talk about diarrhea too

In the spring of 2005, I began to have digestive problems (that's code for "diarrhea"). The issues got progressively worse. I went to my OB/GYN with my concerns, because my Grammy (maternal grandmother) died from ovarian cancer. I wasn't going to mess around anymore. This was too serious to be dismissed again. I forced the issue by telling her that my symptoms were too much like my Grammy's were prior to her ovarian cancer diagnosis. My doctor ordered a full ultrasound.

The first ultrasound revealed that I had an ovarian cyst. Finally! Something someone else could see that didn't belong there! Hallelujah! I wasn't crazy!

My doc put me on a month of hormone therapy (birth control pills) to see if the cyst would shrink. After a month, another ultrasound was ordered. The second ultrasound revealed that the cyst hadn't shrunk... it had grown! It was now the size of a racquetball. The ultrasound also found a second odd-shaped oblong cyst (cysts are usually round). That one was the size of a Snickers bar and completely baffled my doctor.


The Halloween that changed my life

By October (a month after my 39th birthday), it became clear that I would have to have surgery to have the cysts removed. Laparoscopic out-patient surgery was scheduled for the morning of Halloween 2005. I was going to spend Halloween "under the knife"--kind of ghoulishly appropriate, I thought.

Three days before my surgery, I met with my doc for my last pre-op appointment. I asked her how likely it would be that the cysts would came back. She said it was highly likely. Out of the blue I asked, "Wouldn't it be best to remove my ovaries completely because of the history of ovarian cancer in my family?" She was stunned, took a second to regroup, and then advised me that if I chose that route, I should have a full hysterectomy so I wouldn't be at risk for uterine cancer (apparently, risk increases when the progesterone levels drop after ovary removal). I felt strongly that a full hysterectomy was the right way to go. She was still a bit stunned (so was my husband who was also at the appointment). My doc made some phone calls and scheduled the operating room necessary for the more involved surgical procedure. Instead of an out-patient surgery, I would be in the hospital for 5 days. But the surgery was still planned for Halloween.

Interestingly, when the surgery happened only a couple of days later it was very fortuitous that the operating room had been set up for a full hysterectomy. Here's why...

Once inside me, my doctor discovered that my reproductive organs were encased in adhesions (scar tissue). She immediately suspected endometriosis. Since endometriosis cannot be detected via ultrasound this was quite the "surprise". My uterus, fallopian tubes, and ovaries had become one mass encased in gnarled scar tissue. And the whole mass had adhered to the outside of my colon (hence, my digestive problems I'd been having). Scar tissue also encased my ureters (the small tubes leading from the kidneys to the bladder). The ovarian cysts that were detected via ultrasound were also due to endometriosis. My doc determined that I had at least 20+ years worth of damage from the disease that had gone undiagnosed all these years despite my pleas to at least 3 other doctors that I felt something was wrong.

Needless to say, surgery went twice as long it should have in order for my doc to remove as much as possible in the limited time she had. Blood transfusions in my blood type were unavailable so she had to do as much work as she could before I was in danger of bleeding out. She spent most of her time carefully removing the mass that was adhered to my colon without jeopardizing my colon. Although she had planned on a total hysterectomy (removal of uterus, ovaries, fallopian tubes and cervix), she chose to leave my cervix because the surrounding scar tissue was so bad she didn't want to run the risk of cutting my ureters.

I came out of surgery anemic and pale from loss of blood. My husband tried not to react when he saw me in post-op. He mentioned I was very pale. In my groggy state I said, "I decided to dress up as a ghost for Halloween." That's me... always trying to find something funny in every situation.

When I was told about what my doctor found and that biopsies had been sent to the lab to confirm it was endometriosis, my silent response was, "What's endometriosis?" In the days I spent in the hospital, my husband and I looked up everything we could find on the internet about endometriosis.

My surgical recovery went very well. In fact, I felt better 5 days after the surgery than I had felt just a week prior to surgery--that's how bad I felt before surgery.

After about 6 weeks of post-op recovery, I felt like I'd stepped into a whole new life that was finally free from the mysterious pain that had plagued me since I was 15 years old. I started to call my surgery my "Halloween Hysterectomy" and it became the milestone that I measured where my old life ended and my new life began.

My doctor told me I couldn't take any hormone replacement therapy (HRT) because if there were any rogue endometriosis cells left in my abdomen, they would continue to feed off any estrogen in my body and go through the monthly cycle that the tissue of the uterine lining does. The internal bleeding and subsequent scarring would come back along with the pain. They'd wreak havoc on my body again. She also strongly advised me to lose weight with the reasoning that because body fat produces estrogen it could also increase my risk of recurrence.

Over the next 6-8 months as my body healed from the surgery, I realized that I never wanted to go back to that place that I had been in for 20+ years--"Endometriosis Hell".

Because of my doctor's advice, I mistakenly thought I was the sole deciding factor as to whether or not my endometriosis would come back. I didn't understand that I had a disease that has no real remedy except removing all the endometriosis (something my doctor hadn't been able to do). I also didn't know that regardless of whether I had ovaries or body fat pushing any hormones through my veins, the insidious endometriosis implants (what the rogue cells are called) have their own "life support systems" that they can feed off of to grow and wreak havoc.

I found WeightWatchers and embarked on a journey of educating myself about nutrition and how to eat for wellness. Initially, I lost 45 pounds and kept it off until the end of 2007. Then slowly, my body started to revolt against my efforts. Despite the significant lifestyle changes I had made, my health started to deteriorate again. In spring 2010 (almost 5 years since my surgery), my digestive issues were back. I felt the same sensation of feeling like a slowly inflating balloon was in my lower abdomen. My reprieve hadn't seemed to last very long.

Except one thing was very different this time around... I knew what I was fighting, and I knew the enemy. It has a name. I could face all of it head on as long as I knew. That is where my story began again...

Follow the story of my second surgery chronologically by going to the links above in the sidebar at right -->