Impromptu Endometriosis Update/Awareness

Choosing Hope.

When I found this article in one of my Endometriosis Facebook groups last week, I intended only to hit "share." But as I started writing words that I hoped would help others listen -- so that God willing, other women may be saved the same length and depth and breadth of unnecessary suffering as me--it was as if a dam broke open. 18 years of suffering poured forth into possibly the longest Facebook "status" I've ever shared.

But for good reason. The more I learn along this journey, the more I understand that some information bears repeating. So I've copied both my words and the linked article here in hopes that it will more quickly ripple out to the women who so desperately need it.

"Hear me loud and clear. Hear me through the 18 years—more than half my life—of suffering in pain so intense that even morphine barely took the edge off.
Hear me as I echo every single word the woman who wrote this article has bravely shared. 

“Endometriosis…it won’t kill you, but it will make your life a living hell.”

[Endometriosis is when the uterine lining grows elsewhere in the body, damaging both its host tissue and all the tissue surrounding it through secretions and internal bleeding, and creating its own estrogen causing progressive hormonal imbalance and fatigue.

Endometriosis is more than just painful periods. It can be excruciating ovulation. It can be pain all the time or pain none of the time with infertility or miscarriage. It can be lower back pain and leg pain and lung pain and pain in the diaphragm. It can be unexplained digestive and bowel issues. It is a progressive disease surrounded by myths, mistreatment, and even arguable malpractice. So here are the facts – if you, your wife, your sister, your daughter, are suffering, please ask me about how to find an excision specialist.] 

Surgical Excision -- completely cutting out all endometriosis implants, is the only true effective treatment for endometriosis.  

1. Not ablation, or “burning” the top with a laser while leaving the “roots,” which-- unbeknownst to me--my previous surgeons (NaPros to boot) thought was effective, and couldn’t understand why my pain persisted and worsened after their (invasive, expensive) surgery. So of course their only logical conclusion was that they'd done their job and the rest was "in my head." 

2. Hormonal birth control does not treat endometriosis. It occasionally provides temporary relief of symptoms, while allowing endometriosis to continue growing unchecked & damage surrounding tissues, leaving women worse off than before. Not to mention all the life-altering HBC side effects currently being argued through various lawsuits. And for what it's worth, Bioidentical hormone treatment failed me just as spectacularly for the same reasons. It's a band-aid for symptoms. 

3. Lupron does not treat endometriosis. It too masks symptoms and introduces a whole host of other issues that, at an alarming rate, leave women permanently damaged. 

4. Diet does not treat endometriosis. Controlling diet can occasionally limit symptoms caused by endometriosis like inflammation and IBS, but diet alone can never remove the wayward endometrial cells that grow on the tissue in and around the abdominal cavity. Only surgical excision—actually physically removing them—can get rid of them. 

As for me? 

I’m lucky to have fully learned the necessity of excision treatment and excision specialists this past year, even though I thought--and had trusted--that this is what my previous surgeons, supposed Endometriosis “experts” had trained in and were performing (nope, just ineffective ablation). 

I’m lucky that when I found an excision specialist and showed him the images from my last surgery, he could point out every bit of endometriosis that was completely missed, and every "treated" lesion that was only partially burned (instead of cut out) and left to wreak more havoc. 

I’m beyond lucky to have an excision specialist in my state within reasonable driving distance when so many women have no other option than to board a plane to find adequate treatment. 

I’m lucky that after 10 different doctors and 3 separate surgeons failed me, I had enough strength to keep researching and try one more time. Entire days of my life have literally been dedicated to reading and researching in desperation. 

I’m lucky that I had done enough research to know better when 8 of those doctors told me that hormonal birth control (often a controversial brand) was my best option, and when 7 of them shook their heads as I turned down Lupron when they casually offered it like an after-dinner mint—not one of them cared to discuss the potential dangers or side effects. 

I’m lucky that on every occasion, I made it to the car or further before the tears arrived instead of having a breakdown in the office of such purported “specialists,” especially the ones who chose appalling, patronizing remarks when I didn’t implicitly trust their {ultimately incorrect} recommendations. 

I’m lucky that three of my five pregnancies resulted in the children we are blessed to raise, and that even though I initially intended to delay pregnancy, God in His wisdom knew to send our beautiful children as soon as possible, prior to the fifth failed doctor when my body effectively shut down. 

I’m beyond lucky that I was able to become pregnant at all, when so many women with this disease suffer both the physical pain and the impossible ache of empty arms.
I’m lucky in so many ways, but I’m still beyond appalled that the most advanced medical community in the world and the stanchions of modern feminism have failed us so consistently and thoroughly—not even caring to glance our way despite an outcry of tens of thousands of women begging to be heard and believed, despite petitions and open letters to the ACOG from underpaid and overworked excision specialists trying to save a staggering 10% of America’s women from internal destruction. 

I will let the author of this article speak to the rest of my personal experience:
"What does it say about our culture when our medical establishment consistently ignores and belittles not only a severe and disabling illness in close to one in ten women, but actual visual evidence of highly destructive disease? When it distrusts women—highly educated, intelligent women—and relegates them, with disinterest bordering on contempt, to a lifetime of severe pain and disability, despite repeated attempts over decades for help?" "

Which brings me to where I am today.

Though I haven't wanted to admit it, I can tell since my last surgery 18 months ago that I've become progressively weaker and worse for the wear. I've had to stop almost all of the active enjoyments of life, and my pain and fatigue are at an all-time high. The house sits in a mess most days and even thinking of attending the regular outings and gatherings I once loved feels like a colossal effort. My once strong and capable body has shrunk to a pitiful skeleton; I use my limited energy to muscle through the work and family requirements that I must, while the rest falls by the wayside.

In August while desperately searching for a new doctor after my most recent one once again failed me, I joined a slew of Endometriosis groups on Facebook. One woman finally recommended a specific group with that hosts over 36,000 members and shares not only a wealth of information on proper treatment [excision,] but an up-to-date listing of specialists that actually have the skill to properly perform this highly complex and difficult type of surgery. [Again, please contact me to find out more about this group if you are in need of information or a specialist]. I was initially incensed that the only specialist in my state was over an hour drive from me, but soon found out that several states have none at all, and countless women have boarded planes and crossed country borders and filed insurance appeal after insurance appeal to get the treatment they deserve from an excision specialist. I am one of the lucky ones.

I called in September and was not able to get an appointment until the end of November because the specialist closest to me is so overloaded with patients that he barely has time to sleep. This is the case for literally every excision specialist in practice. But he still took ample time to review my records, and with one split-second glance at my previous surgical pictures, he positively identified all the endometriosis that prior surgeons had missed or not completely removed.

And so, with hope of someday regaining this memory of my former active life, I face the big excision surgery in less than a month. Suffice it to say that it will be much more involved, both the surgery and the recovery, than any of my previous surgeries because this time it will be done correctly. My excision surgeon will spend much longer than the average laparoscopic ablation surgery carefully finding and removing all endometriosis lesions {he is personally trained in robotic-assisted excision through the DaVinci method}. This means that any areas on organs or surrounding tissue that must be treated - ligaments, fascia, intestines, etc. - will require their own equal and intentional recovery.

This surgery will also be much more involved because my endometriosis has been progressing unchecked for so many years due to ineffective approaches from other doctors and surgeons.

Tragically this means that my main reproductive organs are now so affected and too far gone that even my excision specialist cannot "save" them from the damage already done.

I'm sure I will share more when I'm ready, but I cannot begin to express the emotional grieving process this creates on top of attempting to work through the serious discernment required for such irrevocable and life-altering decisions that once done, I can never take back.

I'm far from unique in the matter; I've encountered countless women from all different backgrounds and countries and faith/non-faith traditions in my endometriosis groups -- all walking this road together and agonizing over the same decisions, grieving together as women over the same physical losses and soul crosses.

I am inexpressibly grateful, though, for the immeasurable support I've received from family and friends and even strangers who have poured themselves into helping and selflessly listening. I'm forever indebted to my Spiritual Director for his wisdom, and the kindness of the Eternally Loving Father for granting me a peace that surpasses understanding as I worked my way through one of the biggest of these decisions {though there are others I am still painstakingly discerning through}.

Above all, I choose to hope that this procedure will bring the healing I have been pursuing for so many long years, and that the right information will continue to land in the hands of all the women who need it -- so that each affected woman has the chance to fully live out her irreplaceable earthly mission, and gift the world with every bit of her God-given greatness: mind, body, and soul.



*The websites I've linked throughout this post are some of the most trusted Endometriosis informational sites and studies. There is an overwhelming amount of misinformation across the internet, but these sites are maintained by individuals who have devoted their life's work to properly understanding and treating endometriosis, spreading trustworthy information, and whose research has been backed by patients who have found lasting relief. I have copied some of the main studies and urls below.

https://endocomprehensive.blogspot.com/
https://www.ncbi.nlm.nih.gov/pubmed/28456617
http://endopaedia.info/resources.html