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

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

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

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

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

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

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

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

Great.

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

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

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

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

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

Double great.

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

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

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

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

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

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

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