Accurate Information On Endometriosis | Awareness Month | My Journey

I am #1in10, and I'm on a mission to spread awareness on proper treatment of endometriosis so other women, I pray, can avoid suffering for the same life-altering span (18 years) as me.

Endometriosis is a likely-genetic disease where tissue similar to that of the endometrial tissue in the uterus (which either nourishes a newly-formed baby or is shed through menstruation if conception doesn't occur) grows outside of the uterus; usually in the abdominal cavity, often on other organs within the abdomen, and sometimes rare locations such as the lungs, throat, or even in the brain. This displaced endometriosis tissue responds to hormone fluctuations as well as produces its own estrogen, and causes widespread and progressive acute pain, fatigue, and infertility among many other symptoms.  

This is not a small problem. Approximately 10% of women worldwide endure endometriosis (akin to the number of women with diabetes), yet for the majority of women suffering from endometriosis, adequate healthcare is almost impossibly difficult to obtain.  

Effective Treatment vs. Misinformation

Excision surgery is the only way to fully treat endometriosis. Not all endometriosis surgery is excision, aka laparoscopically cutting out the disease. Not all excision surgery is done by a skilled enough physician. Hormonal treatments, diet, and pregnancy may provide some women temporary symptomatic relief, but endometriosis can progress undetected, still causing damage to tissue and fertility, even if symptoms are managed for a time by prescriptions (which carry their own often-dismissed side effects) or other means. Breaking down each:

• Ablation and incomplete excision surgery with self-purported specialists will not cure endo. Even if it helps for a time, the roots of the disease remain and can quickly return. {I would know, as I experienced this with 3 prior surgeries with "specialists" before finally finding relief from my 4th surgery/1st full excision with a true specialist.}

• Diets, no matter how healthy, do not treat endo. They may help manage symptoms, reduce surrounding inflammation, and restore gut imbalance from prescription pain management/NSAIDs, but on their own, diets cannot make endo lesions shrink and/or disappear. Endo produces its own estrogen and can continue to damage surrounding tissue, reduce/inhibit fertility, or spread. I myself have been on a gluten/dairy/soy/corn/everything-free diet for years due to digestive issues. I will continue at least until my severely damaged gut is healed, but even with an unbelievably restrictive diet, endo still progressed. 

• Hormonal birth controls, IUDs, and aggressive synthetic hormones therapies like Lupron, Depo, or the new Lupron-like pill [Elagolix] currently being aggressively marketed by AbbVie DO NOT DEFINITIVELY TREAT ENDO. Not only that, many doctors tout these most aggressive forms as a great long-term solution and send women on their way, never monitoring bone density or other KNOWN side effects. Countless women are suffering from permanent bone and joint damage, teeth that start breaking, vision problems, etc. from Lupron-like treatments which were never presented to them as potential issues. And again, though these treatments may help manage certain endo symptoms, reduce pain surrounding the menstrual cycle, and show some semblance of "helping," on their own, hormonal treatments--either synthetic or bioidentical (which I have tried)--cannot make endo lesions go away. Even when the ovaries are completely and violently shut down (as with Lupron), endo can still produce its own estrogen, progressing, spreading, and damaging surrounding tissue, continuing to reduce/inhibit fertility, and/or spread. 

On average, there’s less than one truly trained and educated excision specialist per state in the US with adequate knowledge and skill to effectively treat endo. Most Ob-GYNs operate off of old and incorrect information from the ACOG, often pushing hormonal treatment over early and complete removal of endometriosis--and if they do perform surgery, most surgeons aren't trained to adequately identify all presentations/colors of endometriosis, or effectively excise all disease from all locations, therefore only removing it superficially or missing large portions of disease. This is like lopping the top of a weed while leaving the roots to grow, or superficially removing some of a tumor, leaving the rest to spread/damage surrounding tissue. Who would call that an acceptable treatment? Yet MOST “specialists” have learned to treat endo this way, because from the top down in the ob/gyn training world, those who aren't actual endometriosis experts continue to perpetuate the use of old data, incomplete studies, and low standards of treatment, and preposterous myths* during the brief training that new ob/gyns receive on Endometriosis. This means continued pain, fertility issues, and severe impact on quality of life.

*Myths: such as the claim that pregnancy or hysterectomy are a"cure" for endo, when endo by definition is a disease outside growing in locations outside of the uterus which produces its own estrogen independently of the menstrual cycle, and will continue to progress wherever it is located in the pelvic cavity after hysterectomy. I can also personally attest to my pain continuing throughout pregnancy, even as a midwife looked me in the eyes and told me I shouldn't be in pain because "pregnancy cures endometriosis." Women deserve better. 

Where to Find Real Help

{Correct Information Sources / Listing of Trained Excision Specialists / NaPro Information}

If Endometriosis is your reality, run, don’t walk, to an educational group on FB called Nancy’s Nook! 

A woman named Nancy Petersen started this group after suffering through her own cross of endometriosis as a young woman; she finally discovered a group of doctors and advocates who have devoted their lives to learning about the disease and treating the disease effectively, and she is continually advocating for endometriosis patients in the world of healthcare and sharing up-to-date information for suffering women in the group.

There’s an approved list of excision specialists in the files section of Nancy’s Nook based on extensive screening & patient feedback. These adequately-trained specialists are hard to come by. There’s currently only one in the entire state of CO, and it took me months to get in to see him, and months following to schedule my surgery. 

For my Catholic/crunchy friends, Dr. Hilgers, father of NaPro, is the ONLY NaPro [currently] listed. [Pray with me that there will be more who obtain the necessary length of training, mentorship, and specialty from an expert]. I sadly had to get over this. So will you. It was especially maddening for me, considering I had two expensive, useless surgeries with TWO different local NaPros doctors, at least one of whom trained directly under Dr. Hilgers, who himself understands the correct treatment of endo. If he gets it and has adequate skill, this should be the MO of every other NaPro, right? I thought so, and therefore implicitly trusted the NaPro docs I found with my care and treatment. I felt crazy in the head soon after both surgeries when the pain and issues returned, scheduling appointment after appointment asking why I was in worse pain, what had gone wrong, why my fertility was still out of whack. These NaPros could only shrug & send me for labs & CT scans and colonoscopies and suggest ludicrous, ineffective drugs that don't stop endo from progressing (like Lupron, which can cause horrific, life-long damage), when all along it was simply ALL the endo STILL left in me! After requesting my records and reading my old surgical reports this past year, I could only shake my head in pain and regret.

UPDATE May 2018 - Fabulous news! Another NaPro was just added to the list: Dr. Steve Hickner in Ann Arbor, MI. I was actually briefly under Dr. Hickner's care when a new NaPro clinic opened in Denver, and it was one of the most positive experience's I've ever had with a doctor, but sadly I was unable to schedule surgery with him before he relocated out of the area. I highly recommend him. 

The Difference a TRUE Excision Specialist Can Make

At my consult in November with my true excision specialist, he took one look at my previous surgical pictures, and in less than 3 seconds pointed out all of the endo my previous surgeons had completely missed or only partially burned.

He found & removed all of it at the end of February, including a ton from several areas not shown in my previous pictures.

I’m so lucky to have found him, but because my endo was allowed to progress for so many years across so many organs, including my uterine surface, I had to have a heartbreaking hysterectomy in addition to excision. Please understand that this hysterectomy was not to treat the rest of my endometriosis; it was only a small part of the treatment plan, done specifically because of the amount of disease directly on my uterus. I still had to have all the other areas of disease painstakingly removed from other locations where it was previously missed and wreaking havoc: the uterine cul-de-sac and all across my abdominal wall, my remaining ovary, my bladder, bowel, and uterosacral ligaments. Blessedly, other somewhat common areas of disease (ureters, diaphragm, gallbladder, appendix) were clear for me.

By God's grace, I have been able to offer much of my suffering to our Lord over the years so that it was not wasted.  But I’ll always wonder how much of my fertility I could’ve saved or prolonged had I found my way around the misinformation sooner.

But I still have a chance to save any woman I can possibly reach from the same fate. Please, don’t have needless surgeries and submit yourselves to unnecessary suffering. 

One little anecdote: I tried a new self-acclaimed "specialist" earlier this year because I didn't want to have to drive further or wait months for an appointment with the one true excision specialist in our state. [Crazy, now that I know how many women have to get on a plane or drive for days just to reach an actual specialist]. I also wasn't completely convinced yet that a specialist from the list on Nancy's Nook would be any better than one I could find on my own. I was went to the appointment with the concerned that I might be dealing with adenomysosis in addition to endometriosis -- a different form of the disease which is located deep in the uterus and painfully grows into the uterine muscle and wall. This "specialist" did an ultrasound, told me I had a perfect-looking "textbook" uterus (awkward), told me the chances I had adenomyosis were next to nil, looked at my previous surgical pictures and said the previous surgeon clearly removed it and it was only stage 1, maybe 2... and then he lectured me for an extended time about why I needed to start Depo-Lupron injections immediately under his care. I declined, said I was not comfortable with that form of treatment, and tried to gracefully end the appointment which was clearly going nowhere. But he kept pressing--he said that I was clearly very well educated and had done my research, which needed to be respected, but that I needed to trust his experience. He actually said, "I can help you, but you have to want that kind of help." He wouldn't let it go. I escaped with my dignity and dry eyes until I got to the car, where the frustration was too much -- such rabid pressure and misinformation preying on the desperation of so many women, virtually drowning in pain--and the tears of this dismal reality poured out and blurred my vision.

My visit to the true excision specialist a few months later was night and day; he immediately identified every issue, apologized (as did his nurse) for the duration and intensity of my pain and mistreatment at the hands of other doctors, in addition to providing a plan of action based on years of sound study and experience. And--big surprise--when the pathology report came back after my recent excision surgery and hysterectomy, the lab confirmed that I did indeed have adenomyosis in my uterus... you know, the very form of disease that other "specialist" said I definitely didn't have. My true specialist also said my endo was at least stage 2 or 3.

I am now a month post-op, and though it is still early on and I am still trying to be realistic while my {not-so-young-as-before} body recovers from MAJOR surgery, I can definitively say that the endometriosis pain is gone. I have another month designated for full recovery, and I plan to take advantage of things like pelvic physical therapy to prevent against scar tissue, but I have not been this pain-free since...I don't even remember. It's been a long time coming,

Learn from me, and all the lessons I learned the hard way.

Read the info from the Nancy’s Nook Facebook Group before going to your next appointment. Use the search function for your symptoms and questions. Find an excision specialist from the listing in the files, and give yourself all the hope I have and can already feel in my body now. Learn about correct treatment and fight the widespread information that keeps women in the unacceptable cycle of suffering.

The Faith-Based Side of Things

As for the mental, emotional and spiritual side of things, shortly after my excision surgery I shared these words below in honor of a campaign during the month of March to raise awareness on the commonality of Endometriosis, the prevalence of unacceptable treatment, and what acceptable treatment actually is.


"March is Endometriosis Awareness Month

I debated sharing this image, but ultimately realized the truth it represents is so much bigger than me.

This is the 4th time I’ve sported these marks, but the 1st time they’ve held the promise of an #EndometriosisExcision specialist with full knowledge & skill to definitively identify, find, & remove all of this insidious disease.

It’s also the 1st time such wounds bring more finality than questioning; less wondering about what our family might one day look like, more acceptance & thanksgiving for the family we’ve been given.

These 4 visible, dark wounds from last week have been prefaced by 12 others—now faded into tiny, silvery scars, blending innocently with the marks of the precious lives that once stretched my stomach & continue to fantastically stretch my heart.

These tiny wounds run deep. They mark half a lifetime of constant suffering and pain that one study just likened to the severity of heart attack pain. Far deeper they mark persistence, strength, & sheer grit when the only option was to press on.

And collectively, these wounds carry a soul component far greater than any physical one.

They mark a hundred thousand “unanswered” questions—prompting growth, abandonment, & an ongoing, hard-fought battle to continue choosing trust. They spurred a quest for truth & took root as the seeds of dogged hope.

These wounds hint at the increasingly heavy, crushing cross I drug through the years toward Calvary—finally understanding how I’ve always been accompanied by, and more often carried by, my Savior.

Yes, these marks call to mind the wounds of Christ—teaching me how my own small wounds, when united with His great ones, can break my heart open with compassion for others, & give me the power to offer myself as a co-redeemer for souls at the pleasure of my Savior.

And after the long, necessary lesson of learning how to lay down this tired, battle-haggard body for Christ, I now have hope—kindled by the light of His glorified body, opening the eternal door to redemption—that these new wounds of mine may indeed lead this ravaged but evermore purified body to its own tiny resurrection."

Info Straight from Nancy's Nook

Finally, I present to you a good summary of the above info from Nancy, which I'm sharing with permission from the Nancy's Nook Facebook page.

Excision is excision is excision right? No, not right. First, excision and ablation are coded the same for insurance purposes and they are not the same.

Secondly, excision is a highly skilled procedure that not only takes additional training to do well, but there are multiple factors in treating endometriosis.

You have to know what it looks like, and that it can go thru an evolution in color appearances. (Study on evolution in color with lab data here: http://endopaedia.info/origin33.html)

Traditionally doctors were taught that endo was black disease on the ovaries. If that is what you are after, likely up to 75% of the disease will be missed and left behind. The ovaries are not the most common site of involvement, in fact, they are 7th and 9th in order of frequency of involvement, meaning 9 other areas of the pelvis are more frequently involved than the ovary, So looking at ovaries is not going to get you very far in pain relief.

The distribution of disease in the pelvis is far beyond the ovaries. The uterus, ligaments, bladder, pelvic floor, ureters, pelvic side walls are all more frequently involved than the ovary. It is not uncommon for surgeons to skip working in the cul de sac (pelvic floor). Symptoms do correlate with the location of disease frequently but sometimes pain can be referred to other areas. So it's important to have an accurate understanding of the symptoms of endometriosis. If the surgeon does not believe the bowel can be involved, then chances are that is a red flag for limited experience.

You have to have actual training and certifications to operate beyond female organs. Not many gyn's do, which is why the specialists will often have surgeons they work with regularly for bladder, bowel, lung, and sometimes diaphragm. So the plan for dealing with the disease in these areas needs to be laid out in advance. Otherwise, it gets left behind (as it should when doctors are not trained).

Some doctors will intentionally leave disease behind with the intent to "clean it up with lupron or other such drugs", this philosophy is doomed to failure. It all needs to be removed if it is symptomatic. Pain relief is what you are after but you need the proper skill set in the operating room.

You cannot go to a gynecologist and say, I want excision of my endo. It is not that simple. First, they need to have been trained in MIGS (minimally invasive gynecological surgery) which involves a fellowship and nearly a years additional training. This needs to be accompanied by mentoring in what endo looks like, where it is found and how to effectively remove it. Just being MIGS trained does not ensure expertise in endo surgery.

When the bowel is involved, it is not enough to send you to a colo-rectal surgeon, as there is a much higher chance of a colostomy or ileostomy when the bowel is involved than with a colo-rectal surgeon who works with an endo team regularly. Aside from that, general surgeons and colorectal surgeons have no training in endometriosis and likely will miss disease simply because they do not know what it looks like and where it is likely to be found.

"My specialist" is often commented on here referring to non-nook doctors, when we look at their training they really do not have any training specific to endometriosis. Being a gynecologist does not ensure adequate ability to deal with endo effectively. The same holds true for many fertility doctors, they are trained in fertility not endo surgery. So if you have had multiple treatment failures, then it might be time for an opinion with a truly trained surgeon.