Monday, January 20, 2014

What does the Endomarch mean to me?

I suffered from endometriosis long before I knew what it was or that I had it. No one should have to go through years of pain, thinking or being told it was "normal." No one should have to go 7-9 years with multiple misdiagnoses before accurate diagnosis is made. No one should have to go through inadequate and at times harmful treatments and yet still end up with the same pain and affliction.

My story, in short form, goes like this:

I had hard times with periods but thought that was normal.
I functioned for a few years, but college found me being more incapacitated.
It got bad enough I finally had to quit a demanding job and find one that was part time with less call.
I still didn't realize how abnormal it was to be that incapacitated. I guess I thought I was weak.

My pain worsened and stretched beyond my period days. "Irritable bowel" symptoms worsened.
The doctor thought of a few diagnoses and tried to treat them but they didn't help.

Friends and family finally convinced me I needed further care.
I saw a nurse practioner who tried a few things and suspected endometriosis.
At this point, my pain was month long with acute episodes during periods- not to mention fatigue, bowel symptoms, etc.- that left me barely able to work at all and bedbound for about 3 days with no sleep because of intractable peritoneal pain.
I was referred to an ob/gyn who could perform surgery.

The ob/gyn wasn't convinced it was endo, but after about passing out, I told the doctor it was time for surgery.
The ob/gyn performed surgery and, to my relief, found endometriosis.
I say relief because there was an explanation for my pain. It had a name.

He ablated the endo he found in the posterior cul de sac and put me on continuous birth control.
I was amazingly better but still had some symptoms.
Unfortunately, those symptoms crept back up again.

After doing all he could for me, he referred me to another doctor who performed excision and did more surgeries on endo patients.
I had another surgery where endo was found on my bladder, uterus, peritoneum, round ligament, and uterosacral ligaments.
My story doesn't end there though.

Years of terrible pain had left me with pelvic floor dysfunction (hypertonic). I still have symptoms that might indicate adenomyosis. I still get uterine polyps. I might still have some endometriosis. I still have some hormonal imbalances. The evil of endometriosis is that it rarely travels alone. It brings its malevolent friends along- pelvic floor dysfunction, interstitial cystitis, adenomyosis, hormonal imbalances, and the list goes on. It has kept me from having the educational, professional, and quality of life opportunities that I would wish for. It's a long and winding road with no end in sight. That's why I march.

I was blessed that my doctors believed my pain and suffering. They kept searching to figure it out and offer treatments to help beyond "take a pill." There are so many myths and misinformation out there. Things that modern research has long since rebutted. I've been told by acquaintances to get pregnant or have a hysterectomy and that would cure me. Endo also seems to be shrouded by silence of being a "female" issue- the way breast cancer once was. If every other commercial seems to be for erectile dysfunction and October can be engulfed in pink, I think endometriosis can be talked about without embarrassment. I believe it is past time for the myths to be dispelled, the misinformation to be corrected, for research to be funded, treatments to be advanced, and better education to the medical community. This is why I march.

Please join me and the other women for
Endomarch on March 13, 2014.