The pathway forward....

I returned from the North of California to recover at Jason's parents house, two doors away from home.  Dad and Mom graciously accepted me into their home to continue my care.  This decision was made because the night before my trip home the family that was still at the household all started to get a stomach virus.  I am so grateful for the transitions that I am experiencing in my recovery and see blessings in all of it.

I am having challenges, emotionally and physically as I am recovering.  It is not as easy as one would think to sit and rest and ask others to do for you.  There are going to be many facets and challenges to my recovery.  We were made aware by Dr. Cook that surgery was just the first step in my healing.  My body has been beaten down with disease and medicines trying to help the disease, for so long.... And now the pathway forward needs to be given the time it is due.  I constantly have to remind myself of the extent of the surgery that I had, in order to give myself the permission to still be where I am at currently.   I did have four organs removed and my insides skinned, after all. 

My next step now that I am back was to find a team leader to oversee my health care.  I lost my other Kaiser doctor, in the process of my fight for healing, and was seeking and praying for a replacement.  I looked to the Kaiser in Woodland Hils, CA.  I began reading bio's of physicians that were located at that facility.  I came across Dr. Diedre T. Fisher.  Her bio showed that she worked and trained at the CEC, Center for Endometriosis Care, in Georgia.  This was excellent news.  Dr. Sinervo who runs the facility is one of the few Doctors who does surgery similar to Dr. Andrew S. Cook, who did my surgery.  The CEC would have trained Dr. Fisher in the latest techniques and studies regarding Endometriosis.  I decided to give Dr. Fisher a try.

I made and appointment with Dr. Fisher and was miraculously able to fill a spot that somebody had abandoned in her schedule and was able to be seen by her the same week as my call.  I met with Dr. Fisher today.  I was very nervous about meeting her, afraid that the Kaiser machine would deny my care or that Dr. Fisher would be put off by the whole fight against Kaiser I had been through or the fact that I went outside of Kaiser for surgery, against Doctors recommendations.

When I finally got to meet Dr. Fisher it was amazing!!  She put me at ease immediately.  She asked me questions, read my pathology and operative reports and looked at the pictures of the extent of my disease and listened.  Then Dr. Fisher looked at me and told me that there was only 8 people that she is aware of that had the capability to remove this disease, at this extent, and I had found one of them, Dr. Cook, whom she was familiar with.  She confirmed that our family made the right choices to have surgery outside of Kaiser with a specialized team and that I was truly blessed to have family that believed me over the physicians at Kaiser that were recommending against surgery and full excision.  I got up and threw my arms around her and began crying and she just held me and said its all going to be okay now.  

Once I confirmed with Dr. Fisher that I was going to be transferring all of my care over to her, she said that she was very excited to witness my recovery.  She reminded me that my body has been through so much for so many years, upon years, that it was in a sort of Post Traumatic Stress state.  It will take some time to unravel the damages.  Dr. Fisher created a team for me, saying she wanted to support me in various ways during my recovery.  First she has set me up with a Specialized Physical Therapist who will work through the damage to my abdominal cavity.  Then she has ordered a specialized massage therapist who will work through the rest of my body.  In a month or so the accupuncturist will be added to my recovery team.  

I was reminded by Dr. Fisher, who agreed with Dr. Cook's Nurse Practioner, Kaja, that my "New Normal" will take months to experience.... Kaja saying up to a year or so, due to the fact that I had been stationary for so long before surgery, had the extent of that disease for so many years, and such a complicated surgery.

Dr. Fisher left me with the following orders:  rest, light walking with a gradual increase, she cautioned me to take the pain medications, saying "don't be afraid to take the pain med.s as they are helping me heal not covering a problem", and focus on anything that is calming, relaxing and enjoyable.  I have been ordered to get some sunshine each day and to work on changing my eating habits to fight the endometriosis from returning.  <Endometriosis is fueled by inflammation; stress, white flour and white sugar are triggers for inflammation.  Those I my first three items that I will be tackling in this next phase. >

The importance of Dr. Fisher may never be realized by anyone besides myself.  It was like when I received my operative reports and pathology reports and pictures of surgery.  I had a fully trained intelligent medical professional employed by Kaiser, who looked at my life and validated all of the things I have been experiencing physically and emotionally.  She recognized the damage both of body and mind caused by being denied the surgery and questioned and doubted and disbelieved by an entire Kaiser medical community.  She acknowledged the extent of the debilitating pain that I was living in daily and the pain I am experiencing now.  It was a huge moment and huge weight lifted.  

Although it is not easy coming to grips with the fact that my body no longer has the capacity to give birth and regaining my trust in doctors again, I have much hope.  That hope is in God.  God has come alongside me in a multitude of ways both small and giant and provided for me repeatedly.  God has sent me many people to be an encouragement via texting, listening, talking, praying, cooking and other minute ways that didn't involve people.  God is truly my provision.  I am renewed constantly that I am in the palm of His hand and that I can trust His plan.  I still have endometriosis, as this is an incurable disease, but by God's grace and power, I have hope to be in remission.

Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time.  Cast all your anxiety on Him because He cares for you.  1 Peter 5:6-7

Reporting in...in Tears...

On April 29, I had a follow up appointment at Dr. Cook's office before I left for the long drive home.  While I was there I was blessed to be able to receive my copy of the Operative Report and the Pathology Report.

This was a truly moving event.  Yes, I cried!  I had received photos of how awful the state of my insides were, and this was very validating.  But receiving a description of the detail of all of my surgery and the best part of all, the results of all the tests done on the bits and pieces they removed from my body --- the pathology report.  Tears of relief and tears of joy were enjoyed and celebrated with a cake pop!

I had been warned that the pathology might not show the whole picture because the pathologists don't test every speck of sample they receive.  They test one part of each piece.  If the disease was next to that part, it would not be noted on the pathology.  So we were unsure that endometriosis, and adenomyosis with leiomyomas would be proven.

The pathology report showed the extensive endometiosis, the extent of the adenomyosis and that I did have leiomyomas!  There was no doubt, there was the proof!  This was not in my head.... I truly had disease!!  Now I am not rejoicing in this disease... but when you are faced with what you know to be true, and you are told by professionals that you are wrong and can't be helped, there is much relief and rejoicing that is done.
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These are some of the things that Kaiser Dr.'s told me prior to surgery:

I don't have Stage IV Endo - Dr. M
I do have Stage IV Endo, and my entire abdomen is "cemented" in place - Dr. G
If I tried to have the Endo completely removed I would end up in a colostomy bag - Dr. G / Dr. M
"One Dr.'s cement is not another Dr. cement" Dr. M commenting on Dr. G's cement comment.
I don't need surgery, I just need physical therapy - Dr. M
My only options are more hormonal treatments and pain meds - Dr. G
We will wait until I have a bowel blockage before we deal with the extent of the disease - Dr. G
The non Kaiser surgeon (referring to Dr. Cook) would lie to me to get my money and falsify my results - Dr. M and Dr. G
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Now I had gone through the dreaded surgery that would supposedly leave me incapacitated and I had seen pictures that I truly was diseased and needed help - - and now I had proof in writing that it actually was tested and proved to be the actual disease and surgery a necessary step to health.  You can only imagine how happy I was to finally have this all proven.  I was not crazy... I was not making up my pain... It was all real!  I am not some crazy person that thinks she knows more than doctors with years of training (well, that kind of fits me), I am not some crazy lady that wants a radical surgery...  It was all real!!

Days In The Trees....Views of Recovery

My medications have lessened  and I am more cognizant of my life the last few days and these days in the trees have been immersed in tranquility.  We have had a couple of rainy days, but mostly the days have been a delightful dose of sunlight filtered through the swaying branches of these Giant Sequoia's.  Such straight, tall trees that sway in the wind.  The wind which builds in an echoing roar through the branches as the it climbs the hillside and wanes away into the sky.  The beauty and solitude of the surrounding nature is overwhelming.  The simplicity of the quaint, comfortable house is very healing.  I will let the rest of the words develop in your own mind through the pictures of the different views I have had.  When my Dad arrived, he brought my sister's chair which is a reclining lounge chair which allowed me to relax outside and soak up some of the surroundings.  So from my seat I have taken several shots of the surrounding view.  You will never catch the scope unless you are here in person though, as it always is with me, I can never capture exactly what I long to on the camera.

My first venture outside... all bundled.

This is the side deck.....

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 The view from my bed...

 My views are mostly looking up!

 the road going past the house...

 Out front... Whitney walking up the drive...

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The view from the back deck...

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 On the brick patio...

A grateful mention....

I can not say enough about this recovery time away from home.  There are many facets to this time that bless me to my deepest fibers.
Let me list some:
family going out of their way to take care of my home while I was gone and my precious daughter, Kaylee, friends taking time out of their week to spend time with Kaylee and help with my house, family taking time out of their busy lives to spend time nursing me back to health, the constant outpouring of prayer and encouragement of friends from all over and the immense and indescribable beauty of God's creation.

I have very little memory of the first week after surgery.  I know that Jason's Mom and my mom, Miriam and Diane, paired with Jason and Whitney, took care of my every need.  I was carefully lifted from bed to get to the restroom or the sofa, a detailed list of pain med.s and dietary med.s were kept and dosed to me on a religious schedule, I was fed with the utmost care each day, all day, and I had to be walked to keep my body functioning properly, but not too much--- and every aspect of my life was not in my control.  I wanted for nothing.... and although I don't remember much of that time, as I was VERY medicated due to the radical nature of the surgery, I do remember the acts and the impressions of cushions of care and layers of love that were surrounding me during that time frame.

(Again...not many pictures taken during this time.)

Then the Moms left, after Easter and my care was left to Jason and Whitney.  I am so grateful to my husband who saved up every ounce of vacation time to arrange to be with me before, during and after surgery for as long as he could.  Jason has been my rock and my constant encouragement that God's hand was on this situation.

Jason was relieved by my Dad, Jerry, who arrived on Wednesday or Thursday of last week.  My Dad has carefully doted on my every need.  My dad has carefully meal planned and feeds and logs my meds,  Even as he has very pressing matters at work, he came up here to finish off my recuperation time and take me home in the most comfortable vehicle available to me, the Expedition.

Whitney has been my constant source of company and entertainment.  I am thankful that she so willingly gave up her time to hang out with me.  I have enjoyed hours of time in her company.

In the Hospital....Surgery #4

When I researched hospitals, Good Samaritan did not have good ratings via the computer, and I was disappointed when I found out that I would have to have surgery at that location.  I can tell you that from admitting all the way through, I had really good care.  The admitting nurses were my favorite, mainly because I remember them more clearly, as my surgery was delayed several hours.  They kept me comfortable hooked up to a gown that had a warm air blower attached via a tube.  It was crazy, but super comfy.

All of my family showed up, just about, all that could be there.  Dad (Jones) and Kaylee (and William) stayed home to hold down the fort.  It was nice as they kept rotating visiting with me before surgery.... and possibly after surgery, which I just don't remember.  Although I hear stories of me singing "I feel pretty, oh, so pretty" after surgery, so I think I am glad that I don't remember!

 (other people there but not pictured were Jason and my mom, Diane.)

 God provided me with an unbelievable peace going into the surgery and leading up to the surgery.  Other than some requests for encouragement from my wonderful husband, that I can make it and everything will be fine, I was very much at peace.  By the way, I don't know how my husband escape photos, but he did, I didn't catch any photos of him on the whole trip!  Anyway, back to God....  I am very grateful and don't know how it is possible....although I do know.... God promises His Peace that passes all understanding.  And that is what was granted me.  I am a fearful person by nature and I was entering into the biggest surgery of my life.  ON TOP OF the fact that I was told the day before that my uterus was diseased and may or may not be symptomatic after surgery.... so I had to rest in the decision we had made to remove the uterus, and how much of it to remove.  It is crazy to think that the smiles in those pictures are not just drugged manifestations of bravery... those smiles were genuine.... there was joy and laughter on my lips as I waited.  Now...to be honest, I was given some oral medication when I was admitted, but I stand by the fact that I handled the event with peace.

"2 Thessalonians 3:16 Now may the Lord of peace himself give you his peace at all times and in every situation.  The Lord be with you all."

T.M.I ~~ WARNING~~ This part is not for the faint of heart.... Read with Caution...VIVID PICTURES

I have some more details of my surgery after my follow up appointment with Dr. Cook yesterday.  I won't have the full scoop until I receive my post operative report, which may take a number of weeks.

I am showing two of the pictures that I received from my surgery. 

This picture below (not a picture of me) is a picture of a healthy abdominal cavity.  The uterus is resting in the middle with the fallopian tubes hanging over and surrounding the ovaries.  The bowel is laying separately  towards the bottom of the screen and there is lots of space to be seen.

WHAT I SHOULD LOOK LIKE:

ABOVE IS NOT A PICTURE OF ME.
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First:   This is the view looking down at my abdominal cavity. THIS IS A PICTURE OF ME , from surgery.  What you see is the uterus with the bowel adhered to the walls of the uterus and somewhere in that mess are my fallopian tubes and both ovaries.  Absolutely NO space between any of those organs in my abdominal cavity.  The Doctor tried to scope my bowels to see if there were an blockages or roots growing through and he could not run a tiny scope in through them because of the kinks and strangulation of my bowels caused by the endometriosis.

THIS IS WHAT I LOOK LIKE

THIS IS A PICTURE OF ME BEFORE SURGERY

The basics of what was discovered during surgery was that I had a large endometrioma or (chocolate cyst) in or on my left ovary, I had total "cul de sac obliteration" , my bowel was adhered in clumps to itself and adhered to the surface of the uterus.
cul de sac obliteration:  Cul-de-sac obliteration secondary to endometriosis implies the presence of retrocervical deep fibrotic endometriosis beneath the peritoneum. This endometriosis is located on or in the anterior rectum, posterior vagina, posterior cervix (the cervical vaginal angle between the upper vagina and the cervix), the rectovaginal septum, or the uterosacral ligaments; often one area predominates.

Endometriosis inflames and blisters and pulls and attaches organs together, fusing them with something called adhesions.  You can see by the above pictures how the disease can ravage your insides.

SECOND:  This picture above shows my cervix, which is all that is left of my uterus and it has been completely cleared of endo lesions.  I know this picture looks awful, but this is actually a good job and good work.  All the blackened areas have been coagulated due to bleeding. I had wide excision of my peritoneum as well.  

peritoneum:  The peritoneum is thin membrane that lines the abdominal and pelvic cavities, and covers most abdominal viscera. It is composed of layer of mesothelium supported by a thin layer of connective tissue.

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More details of the surgery will be revealed when the report is finished in a few weeks.

I am fearfully and wonderfully made.  Thank you Lord.

My pain is at a resting 5-6 and I am currently being tested for infection and awaiting the results, just as a precautionary measure.  I will keep you all updated.

Prayers:

Pain to diminish

No infection

Complete healing

health and strength for my care givers

safe travels for my Dad who is arriving to help

That I would be able to reduce my pain meds soon

Post Surgery Update

I am sitting here in a quiet home in the middle of a forest of giant sequoia's, writing this blog post.  This will be brief due the fact that my vision is hampered by some of the med.s that I have been taking.  I will confirm with the doctor about my vision, but I am sure it will clear up in a few days.

SO...we had a pre-surgery surpise.  Yes, afternoon before surgery I was diagnosed with Adenomyosis.  Short story on Adeno, it is endometriosis disease growing inside the wall of the uterus.  This is also incurable and as it progresses enlarges the uterus.  Many of the indicators for Adeno are shared with Endo, so there was no way of knowing for sure.  Within hours we made the decision to let go of my uterus.  This fact is still sinking in with me.  It may seem trivial to some, but not having my uterus will take some mental adjustment.

Another pre-surgery surprise was that my appendix would need to go.  Due to it's location to the endo and the appendix ability to hide endo or cancer it was decided that this organ would go too.  Also, sometimes appendicitis (which is deadly) can be ignored and written off as endo pain.  These were the Doctor's recommendations.  

After surgery the Doctor told my family that we had made all the right decisions about what to do in surgery and he felt he had gotten everything out.  

We are now 3 days out form surgery and I am walking about here and there, but mostly sleeping.  In fact, I am going to sleep now.  I will hopefully make a more coherent entry after my meeting with the doctor tomorrow.  

Prayer requests:

endo is all gone

pain would diminish

vision would be clear

chest would be clear (I have some rattling in there post surgery)

Thank you to all who have been sending me well wishes and prayers.  I really appreciate this and will be sending responses when my vision improves!

THanks

Laura

Between Now and Then

I have not posted on here.  The news I had to post was too discouraging for me at the time, and somewhat angering.  But I can not go forward whilst leaving this giant gap of time filled.

Here is a very brief update regarding the battle against Kaiser.

I lost!

Yep, they officially denied me about 6 weeks ago.  Since then I have been battling my health and time constraints counting up to today.

My family has graciously shepherded me towards surgery, paying for the surgery ourselves.   This was difficult to come to grips with, all of this for me?  Is this the right choice?

And the answer is yes.  After months and months of research into this doctor, Dr. Andrew S Cook, and his practice, that is the answer we have.  I have attempted to research other means of help, whether it be another type of treatment or surgeon, and Dr. Cook keeps showing up in the strangest ways to confirm our path.  And to that end, we Praise God, He left us a trail of breadcrumbs to follow.  Money is just money - - and I know I see money as a longed for trip to Australia or so much desired home improvements - - it is all still just money.  God has met our need and we rely on Him all the more as we wade through this financial maze.  And isn't that our purpose anyway?  Our purpose here, to draw closer and closer to God?

So now begins the journey.

The State Of this State of Health Care...

I am at a stand still with Kaiser.  It has been three weeks since I provided Kaiser with their requested documentation regarding my evaluation by Endometriosis Specialist Dr. Andrew S Cook.  I have waited as patiently as humanly possible for a response.  

Jason and I have then been planning other ways to get the treatment needed.  We decided to apply to the new insurances that are available to get a PPO, that way even though it would cost us thousands of dollars, the rest would be covered and I could begin to heal.  

But .... In hearing back from the State of California Department of Managed Health Care the new plan is effectively halted.  They said my best bet was to file a complaint against Kaiser for the surgery.  If the State of California deems my surgery necessary then Kaiser will be forced to comply.  I will have an answer within 10 - 30 days from the time of submitting my case.  The State of California DMHC also warned against signing up for the Covered California Insurances for several reasons... one, being that many doctors are not yet accepting this insurance, also that due to computer glitches many people that legitimately need help are stuck in a mind boggling limbo waiting for treatment, and lastly that the insurances are radically different, for example Blue Shield PPO and Coveered California Blue Shield PPO would not provide the same services.

So, today I write two research papers:  One explaining the necessity of the type of surgery/treatment that I am requesting and how or why Kaiser can not provide that treatment.  And one explaining the pain and effect that my current condition is having on my life right now.

Please pray for my focus and for the resources to support my case be easily located.  Pray also for the officials that will be deciding my case with the State of California and those that are still contemplating my case at Kaiser.  Pray for my doctors at Kaiser not to take my request for outside surgery as a personal attack, as it appears is happening, but to truly be able to discern my need and struggle.

Thanks.

If you're in pain--why not just take pain killers? (By Endo Hope)

I hope that all of my readers take the time to read the link on this blog entry.  This explains so clearly to those that do not deal with chronic pain, some of the ins and outs of pain killers.  I did not write this but I would have gotten to this topic.  

There is no sense in me re-writing it because Michelle did it so well! 

To all of my Chronic Pain friends this blog entry is exactly what you will want to read!

READ THIS:

ENDO HOPE BLOG ENTRY ~ You Are In Pain... Why not just take pain killers?

The Next Step ~ Prayer Needed

My last post left you with the visit to Los Gatos, to Vital Health Institute, where I was examined by Dr. Cook and a preliminary surgical plan was put together.  I knew I would come home to more phone calls to try to keep my case moving.

What I uncovered upon my return was that the next step after this evaluation was for the current Kaiser Gyn Surgeon and the Vital Health Gyn Surgeon to speak on the phone.  Once this was done, IF the Kaiser Gyn agreed, then the referral would be sent on to his supervisor over the Gyn department.  IF that was approved, then the referral would be complete.  I was even informed that this could possibly be done in one day.  This sounded so easy?!

Well, easy was not the right word.  Actually getting two busy Gyn Surgeons to speak on the phone at the same moment to each other has proven to be quite a challenge.  After many calls and emails to both Medical facilities to keep the attention and focus on my need, over the last week, the Doctors were finally able to decide on a time to have a conference call today.  

So praying family and friends:

Please be praying for a miracle:  For the surgery to be approved by Kaiser.  The Phone conference will happen on WED.  FEB 12 at 11:30AM.

I have been struggling since last week with still increasing pain that is leaving me either too medicated to be social or in too much pain to be social.  Forgive my distance.  I have a difficult time focusing and thinking clearly right now.

Why Keep Your Ovaries - A non-Endometriosis Point of View

I think most people would agree that during the development of young girl to woman the ovaries play an important role.  This is commonly accepted knowledge.  Without ovaries the woman would not be able to have children and develop appropriate bone density.  After menopause the ovaries are useless.....right?  

WRONG!!!

It didn't take much investigation to come up with amazing reasons to keep your ovaries, ladies.  This article doesn't have to be just for ladies, because I think the entire public should be aware that these organs provide life sustaining purpose in a woman's body even after menopause is complete.

I think the first and most basic thing I want to address is that menopause itself is a long drawn out process.  Most women take a number of years in perimenopause all the way through to complete menopause and are not aware of the intricate process that is going on inside of their bodies.  They are mostly aware of the outward signs of menopause.  Menopause can be extremely uncomfortable for some women as they go through this life changing process that lasts years.  It is quite dramatic and ridiculously stressful on the body to go through the entire process of menopause in a moment.  The body usually has years to slowly prepare itself for the lessening of estrogen and during surgical menopause it is suddenly shocked into menopause.  This is not an easy or laughable condition.  

Now the real news!  Did you know that the ovary still produces hormones after you complete menopause?  It's true.  I have found some articles or websites for you to check out to read specifically and below I have listed some quotations from other sources that explain in short what I am talking about.


"It sounds logical to remove our ovaries to prevent <possibility of ovarian> cancer <as a precaution during hysterectomy>, but as you will discover in thie oh so-important chapter, gals, you must absolutely not surrender your ovaries unless you and your physician decide the benefits outweigh the risks. Why?  Because as you will learn, scientists (two of whom I interview in this chapter) now know, that even after menopause our ovaries continue to produce small amounts of hormone that protect our vital organs against disease…diseases such as heart attack, stroke and lung cancer.  Up until a few years ago, it was standard practice to remove a woman’s ovaries during hysterectomy to definitively prevent her from developing ovarian cancer. Although that was a reasonable approach at the time, we now know so much more about the connection between ovary removal and disease, even death, and quite frankly, not enough women are aware of this." 
- See more at: Don't Ova-React / The Unhysterectomy

"The primary reason: Getting rid of ovaries may very well do away with the risk of ovarian cancer, but it  increases our chances of developing heart disease—which is a far more common killer. "The fact is that you are about 30 times more likely to die of heart disease than you are of ovarian cancer. So if you’re looking at odds, you’re generally better off keeping your ovaries,” says Parker, who is also the author of A Gynecologist’s Second Opinion."

"What, you may wonder, is the ovary-heart connection? And what can ovaries possbily do but cause trouble after we’ve gone through menopause? Here’s the explanation in a nutshell: While our ovaries might produce a diminishing amount of estrogen after we go through menopause, they continue to produce testosterone and androstenedione, which still provide crucial protection against heart disease. (Never mind that testosterone also helps preserve our sex drive, bolster energy levels and maintain lean body tissue.) Women in Parker’s study who did not take any therapeutic estrogen after their ovaries were removed faced an even higher risk of heart disease and stroke. Not for nothing, women who had bilateral oopherectomy along with their hysterectomy also had higher rates of lung cancer, according to Parker’s research,"

I really hope that you take the time to read this information below as it has a lot of technical details that will help you understand the use of these vital organs.

A Scientific Argument as to Why Doctors Should Leave Ovaries Intact / by the Athena Institute

Women Who Keep Ovaries Live Longer / NY Times Article

The Function of Ovaries After Menopause / EHOW

To my women friends:   I hope that you spread this news around.  There are some doctors out there that haven't gotten the updates and don't understand that the ovaries do really provide necessary life sustaining hormones to women after menopause.  This is not to say that there are real and legitimate reasons to remove ovaries at times.  The purpose of this post was to educate, so that women can make a well informed decision.

To my men friends... talk to your wife about this and your daughters, but probably not other women.... that would just be creepy.

Specialist Evaluation

On February 3, 2014 I finally got to meet with and be examined by an actual Endometriosis Specialist.  In the middle of a big battle with my insurance company I was finally given permission to be evalutated by Dr. Andrew S. Cook.  

The visit was very educational.  The easy way to put it is that Dr. Cook knows his stuff.  He spent a great deal of time reviewing my records, explaining procedures and listening to and answering my questions.  I received a very thorough examination in which he determined and confirmed some of the issues that I am facing.  

I never felt rushed and Dr. Cook was open to answering or repeating answers to the many questions I had during my appointment.  His office staff was very nice and accommodating, offering me water and trying to calm my frazzled nerves.

So... down to the nitty gritty of it all.  If you don't want any gory details please skip to the last paragraph.

My Stage IV Endometriosis was confirmed with suspected possible bowel resection and pelvic floor dysfunction.  The recommended treatment is wide excision, sometimes known as peritoneum stripping.  Dr. Andrew S. Cook will remove all the Endometriosis and a portion of healthy tissue surrounding.  It is suspected that most of my peritoneum is impacted by Endo, which would result in most, if not all, of my peritoneum being excised. (He will only remove what is necessary)  It was determined that I either have cyst(s) on my left ovary or a hydrosalpinx, which is a blocked fallopian tube that is filled with fluid.  The possibility exists that my left Fallopian Tube would need to be removed and possibly, if the left Ovary is too intertwined, this would have to be removed as well. (although I am hoping that does not happen.) He was able to determine through ultrasound that my right ovary is cemented onto my uterus.  He was also able to determine both by reading operative reports and ultrasound that my culdesac may be very affected by Endo.  There was no mention of removal of my Uterus at this point.  The only purpose for doing that would be if he found that my Uterus was affected inside the walls (called Adenomymosis).  This is not suspected at this point.

I am asking to keep my Ovaries and Uterus.  Besides allowing for child bearing, and bone growth, the Ovaries and Uterus provide a womans body with many things it needs as her body progresses into menopause and beyond.  (Please stay tuned for up coming post on the importance of Ovaries in women.)    Removal of those organs as a treatment for Endometriosis alone is an ineffective, damaging and outdated solution.

Now that Pelvic Floor Dysfunction is under consideration and a mention of possible nerve issues, the surgery might not produce immediate relief from pain.  With this in mind we first seek God as healer and also plan to set up physical therapy and other necessary treatments to fully recover from leaving this disease for so long in my body.

The battle for surgery will wage on again with Kaiser.  I will begin my phone calls again tomorrow and try to push through an approval based on Dr. Cook's evalutation.  Please pray for God's wisdom and our Peace in this situation as the timing for this is very delicate.  Jason and I are putting our full trust that God will make the decisions and choices very clear for us.  Please pray that God will move Kaiser or open up other doors if He wants us to have this surgery. 

God Provides Movement

I got home from work today and put together another intricately written letter to Kaiser Permanente Sourthern California to address all of the points that I found questionable in the visit I had with the "Kaiser Specialist" last Wednesday.

I made contact with the Outside Referral Department Supervisor to investigate where I would address this letter.  The Supervisor told me that I should set the letter to the side for now because Kaiser has 

APPROVED MY PERMISSION TO HAVE AN OUTSIDE EVALUATION!!!

This is not an approval for my surgery, but this is a positive step and I am much encouraged, although I am trying to stave off excitement so that I don't find myself disappointed if /when I have to resume the fight again after this visit.  

For the time being, I will stay in the moment and focus on providing Dr. Cook with all of the necessary information to be able to properly evaluate my case.  

I am so grateful to God for all the little things.  And I am thankful for this glimmer of hope.  Now we again lay this at His Feet, to determine what His Pure and perfect will is for my health and my future.

Please begin to pray for Dr. Cook and all of his staff and for the Kaiser Permanente people involved in my case that God's will would be determined through their skill, God's mercy and wisdom.

Let love and faithfulness never leave you;

    bind them around your neck,

    write them on the tablet of your heart.

Then you will win favor and a good name

    in the sight of God and man.

Trust in the Lord with all your heart

    and lean not on your own understanding;

in all your ways submit to him,

    and he will make your paths straight.

Do not be wise in your own eyes;

    fear the Lord and shun evil.

This will bring health to your body

    and nourishment to your bones.

PROVERBS 3:3-8

LACK of Treatment Update - Kaiser Permanente Southern California

This has been a very draining and emotionally exhausting two weeks.   

After my referral sitting on the desk of the chief of the Gyn. Department at Kaiser for over 30 days.  The calls to Kaiser Permanente Southern California are so numerous that I have, at this point, given up updating the phone calls list that I had on my page. I have had about 30-40 calls since I last updated that list.  Many of these calls simply leaving voice messages.

I know that my last update was optimistic about being put on Expedite etc.  Well, there was some misunderstanding in that process.  The short story is that I was denied expedite status and I just found out today that they don't have to give me an answer for 180 days.  This is very, very perplexing.  I can't tell you how frustrated and angry I am.  

I was told I could call and get help from the State of California Department that oversees all medical care.  I called and waited on the phone for 30 minutes before leaving my number on an automated service to be called back.  I have ... surprise... not been called back.

Finally, at the last minute, at the end of last week, Kaiser Permanente decided they did have specialist in Endometriosis.  I asked them if this was so, why had I not been referred to him years ago?  I was told I had to see this Doctor of theirs.  I asked for his experience with advanced stage IV endometriosis removal surgery. < I was told, just today, that Kaiser does not produce or track success or failures of their Doctors.>  I denied going to see this Dr., stating that if I can't prove his experience in black and white, then I am unwilling to submit to his care at this point.  My case manager at Kaiser and my husband urged me to agree to a meeting so that we could prove to Kaiser we exhausted all of our efforts within Kaiser.  I reluctantly did this.  Kaiser Permanente tried at first to put my appointment off for the standard wait time for this Doctor.  I was then given a very last minute appointment, where I AGAIN submitted to examination and pelvic ultrasound.  The visit did not go very well in my perspective.  

I did find out at that visit that Kaiser records do not show my two previous surgeries that happened outside of Kaiser.  I had given these records by hand to my Gyn. And he did not put them in the system.  I have recitfied that and turned in my operative reports, again, to be entered in the system.  

I am making calls daily to Kaiser Permanente for answers, and to make progress on my case; Trying to be the squeaky wheel.  This is challenging to do while I am feeling so terrible and trying to live my life.  

All of this is more frustrating and disturbing than I have written, and if you knew the half of it you would be furious with this giant conglomeration that is Kaiser Permanente Southern California.  

 My prayer is that I would trust God more and be a shining example to my daughters of how to do life in a difficult situation.  Pray also for my mind:  I have had a tremendous battle to fight in my mind this week... fears have crept in of every kind... and now my newest realization.... That I may not be able to plan or participate in my first born's High School Graduation this June, or her 18th Birthday celebration.  At least not the level that I would like.

But, in the end, the sun rises and sets; there is nothing really new. (Ecclesiastes)   I know my God has plans for my life (Jeremiah 29:11) and amidst the anger of this situation and the pain, I am determined to set the example for my daughters of how to find the joy and peace (Philippian 4:12) in my circumstances.  I am determined to overcome fears by taking every thought captive (2 Corinthians 10:5) and meditating on what is true, noble etc. (Philippians 4:8)

14-01-03 Treatment Update 2

I received a call from the Expedited Review Unit at Kaiser today.  I was informed by this department that they had received my appeal and would be actively working on it over the next two days.  I asked if I could give any information to the person or team in charge of deciding my case and was at that point told that I have until noon Satruday the 4th of January to turn in anything that I want to have them use in consideration for my case.  The documents have to be faxed only, but noon.

I have been researching Endometriosis for quite some time now, but the information that I had been gathering was still in quite a disarray.  I immediately began writing and over the hours of this afternoon and evening have put together two letters totaling 15 pages.  I also have dozens of pages of supporting documents including a letter from Dr. Cook, which is the Doctor I am seeking surgery with.  Also included are emails between my Kaiser Gyn and myself that support some of the things that have been offered to me as treatment.

I would really appreciate prayer over the next few days especially.

No matter what the decision is, I am confident in God's power over my life and I know whatever will happen will not be a surprise to God.  God has a plan for me and my family.  One of my prayers throughout all of this is that I will really be able to experience the richness of God and share that with others as I go.

~~**  Okay!  Document sent with 15 minutes to spare!  40 Pages of Appeal!

Thanks for following~

14-01-02 ~ Treatment Update

Dear Family and Friends,

This is one of many updates that I will put out regarding the process of trying to get the proper treatment for my endo.

After multiple calls to the Kaiser Referral Department (KRD), I discovered  that my referral had slipped through the cracks.  Over 30 days later and my referral was just sitting on the desk of the head of the GYN dept in Kaiser Panorama or North Hollywood, not sure which.  I am sure it would still be sitting there if I hadn't called REPEATEDLY.   I was given a referral by my Kaiser GYN (KG),  the day after Thanksgiving.  The referral turn around should be in the neighborhood of 5 business days.  

My current calls to Kaiser Referral Department (KRD) today gave me the information that my Referral was denied.  

This was extremely emotional, even though I expected to receive a denial from the first try at a referral.  

Some good things came from this call.  I spoke to an employee in the KRD that assured me that actions were being taken amidst the local departments regarding my referral being ignored for so long.  This employee also told me that according to what she could see she was confused that the denial was put forth stating that services could be handled within Kaiser, but that there were no services recommended to/for me.  She said she would be contacting my KG to find out the recommended treatment.  She asked me to call Member Services and appeal the denial of my referral.  This KRD employee also assured me that she was going to help me every step of the way and that she thought that my appeal would be approved.  This was very encouraging to hear.

I called the Member Services Department (MSD) and spoke to an employee who, miraculously, had suffered under the disease of endometriosis.  This employee was very sensitive to my case and although she had little experience how to help me herself, after some time, she was able to communicate with a supervisor and formulated a plan.  This MSD employee has filed an Expedited Complaint and Appeal.  I was told that I will be contacted within 3 business days regarding this complaint.  When I called the KRD back, she agreed this was the correct next step for me, and now I wait for the 3 business days.  

We are encouraged by this news and ask that all our praying friends and family would press in for God's will in this situation.  

Personally, it was an emotional afternoon having to plead my case to people on the phone and try to explain how halted my life really is.  And I am also encouraged by the news that some employees think my referral is warranted a positive response.  At the same time, I am fighting to get a surgery that I am terrified to get.  So, needless to say, I am ... well....as I said... emotional.

Thanks for your prayers!  Stay tuned to my blog for the latest updates or to learn more about my disease.

All is Well~

~Laura

What is it REALLY like to have Endo...

What It Really Means to Have Endometriosis

"...Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, and her ability to live her life in very basic ways.

In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.

Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.

Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.

A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.

The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.

As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.

Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.

Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.

The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.

Reference:  http://www.vitalhealth.com/blog/endometriosis/what-it-really-means-to-have-endometriosis/

WHAT IS ENDOMETRIOSIS?

ENDOMETRIOSIS

Little is commonly known or understood about Endometriosis. What is known is that it can strike between 10 and 20 percent of American Women of childbearing age.

The name Endometriosis comes from the word "endometrium", the tissue that lines the inside of the uterus. Normally, this tissue builds up and is shed each month and is discharged as menstrual flow. In case of Endometriosis, a small piece of this endometrial tissue is "misplaced" and is found outside the normal lining of the uterus. It may be located on ovaries, tubes, intestines, walls of abdomen and pelvis or the ligaments supporting the uterus.

Unlike menstrual fluid, which is discharged during menstruation, blood from the misplaced uterine lining causes the surrounding tissue to become inflamed or swollen. This may produce scar tissue (adhesions) in the area of endometriosis or can develop into what is commonly called "implants", "lesions", "nodules", or "growths".

What causes endometriosis?

We do not fully understand why endometrial tissue grows outside of the womb in some women, but not others. It probably has something to do with genetic factors, since Endometriosis frequently runs in families. We do know that the female hormone estrogen makes the problem worse. Women have high levels of estrogen during their childbearing years.

The Mystery of Endometriosis is that while some women have severe pain, others who have the condition have no symptoms at all!

Symptoms

Pain is the most common symptom of Endometriosis. Some women have severe cramps during their periods. Women that have progressively more painful periods with age usually have Endometriosis. Other women have pain during intercourse or during urination or bowel movements.

Infertility occurs in about 30-40 percent of women with endometriosis.

Ovarian cysts filled with endometriotic material (dark, chocolate colored substance) may be detected with ultrasound. However these are present in less than 20% of women with Endometriosis.

Who, What, Why, When, HOW....

WHO:     I have Endometriosis, Stage IV Endometriosis, also referred to as Endo.  I was diagnosed just over 10 years ago by laparotomy.  I have had 3 surgeries so far.  I have denied a fourth surgery about 2 years ago, because I felt hopeless at the pain and scar tissue the surgery would cause.  The type of surgeries I have had have been ineffective.  

I am now fighting my insurance company to get approval for a full removal of my deep stage IV Endo and Endometriomas (cysts of varying size attached to my ovaries) by an Endometriosis Specialist Surgeon.  

WHAT:  Endometriosis is a condition that affects 176 million women across the globe in different stages.  The average time until accurate diagnosis is 7-11 years.  Endometriosis is a NON CURABLE disease that is listed as not being life threatening.  But the truth about Endometriosis is that it may not directly end my life, but has directly halted my life in many ways.  . Many women with advanced Endo begin to present with all sorts of endocrine related ailments.  Deep Endometriosis can risk life by blocking bowels or blocking urinary arteries etc. and lead to emergency procedures or situations that could be life threatening.  

I will be making blog posts of my research of studies and information with the newest scientific studies of Endometriosis.  Currently there is not a lot of research out regarding Endo.  I will include links, descriptions and other information that may help you understand endo and other chronic illnesses.  I will also be posting on my fight with Kaiser Permanente Southern California.  I will also post updates on my quest for proper treatment.

WHY:  If you will choose to read this blog, you will join in support for me on this part of my life journey.  I am writing this blog as a release for my frustration, to gather all of my material in one place and most importantly to provide my loved ones with a place to learn and grow in the understanding of My Endo Life.  Until there is a cure or my Lord decides to heal me, this is my path.  I have spent a over a decade knowing I had Endometriosis, but essentially burying my head in the sand regarding proper care or treatment of the disease.  As a result, I am to the point where I have been almost stopped in my tracks.  My daily life is altered by an ever increasing gradient of pain.  I am left having to be very cautious about what I agree to do and sometimes I just have to cancel life to deal with the pain.  

The emotional challenges of Endometriosis are also why I am doing this blog. I don't look sick (thankfully) but it can lead people, from afar, to conceive me as lazy, aloof or uncaring, attention seeking or selfish.  I struggle with telling people details about my illness, and risk being left out of things, or risk them pitying me.  I struggle with not telling people what is going on, because I am inherently honest, and genuinely want people to know and want people to be educated and to be able to relate to me.  You can see my dilema.  By the way, I feel quite dramatic sometimes when I share about this... but this is actually quite dramatic at times  I also struggle with looking forward to the future, or making any future plans.  Even a dinner date next week can leave me in a sweat.

Another emotional struggle is the lack of accurate information that exists for this disease.  Many sound, bright Gynecologists, believe they have all the information necessary to effectively treat Endo, but in reality their education of the actual disease and their knowledge of most recent studies is usually ineffective at best, harmful at worst.  Many women are still duped into believing lies and myths about Endometriosis, resulting in the loss of their Uterus and sadly sometimes their ovaries, which throws them into a whole new set of health problems and often still leaves the Endo thriving. < Although every case is different and some women had no choice for other reasons compounded by Endometriosis>  There is conflicting information everywhere and studying sources and studies is long and challenging.

Much of what you will be reading is my constant desire for the most current information to make the best decisions for MY personal care and to be able to share the information that I have learned with other women who fight along side me - - other women whom I affectionately refer to as my Endo Sisters.

WHEN:  Over the last year and a half, my pain level has been slowly increasing.  I have had a few trips to ER for severe bouts with pain.  I have been put on an harsh hormone medications that I have been given too many times than what is safely known to give, that have given me lasting side effects that compound my problems instead of reprieve them.  I have also refused any more hormone altering medications.  

I am fighting currently to have surgery with Dr. Andrew S. Cook, of Vital Health Institute in Los Gatos.  

HOW:  How do I manage?  Well I have an amazing support team of a very understanding husband and children, as well as sets of parents that rescue me constantly. I have a husband, sister and friend, and my endo sisters to hear my heart when I feel like I can't carry my load any longer.  And I have a strong Faith in God that holds me when it would be easy to question "Why me?"

In fact, God never promised me a rose garden.  I have been promised His steadfast Hand to hold me and His Faithfulness to guide me when I can't see the pathway through the darkened valleys.  I have been promised that no matter what I face I have a Strong Tower to protect me and teach me.  I will learn and grow from the adversity that I now walk.  I have been promised a future like none you can imagine....  A future of freedom..... Heaven.

Bloom Where You are Planted!