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.

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.

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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.

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.

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.

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 -->