Endometriosis Awareness – The Quest for Treatment

It took Identity Theft, The Affordable Care Act, and a 2013 phone call from the White House to bring me back to treatment for Endometriosis.

While the Media is focused on Planned Parenthood and Abortion, the real Women’s Health Emergency resides in the Middle Class Demographic of Working Women who are battling Endometriosis, Poly-Cystic Ovarian Disease, and Ovarian/Uterine Cancers. These Women work diligently hard to ensure they have proper Health Care and would not know where to find a Planned Parenthood.

We can’t relate.

We can’t relate, because Planned Parenthood can’t help us.

In my journey to a Cure for Me, I remained on the cutting edge of Medical Technology, always researching the next possible cure for Endometriosis. As the disease the Air Force Physicians could not treat grew at an alarming rate, my nights & weekends spent pouring over Medical Journals in the Library paid off: in 1991 I entered a Clinical Trial for Lupron Depot, the very drug Air Force Surgeons were prohibited from administering to me because in 1991, the strictly Male Chemotherapy Drug had not been approved for use on Women.

When the disease moved to my Pulmonary System in 2003, I had been fighting the disease for 16 years. Being out of options with no access to any Physician who could spell Endometriosis, I declined all Treatment for Endometriosis in March of 2004.

Between 1998 and 2004, the Medical Community failed me in ways that were unbelievable and not one had to do with actual Medical Technology or Knowledge Base. Politics, Bureaucracy, and Money are the sole reasons I have struggled with Medical Care for 20 years.

I was denied access to care and proper treatment for my Endometriosis because of Money – either not paying enough in monthly Premiums, not having the Co-Pay of $2,500, or because I have a disease who’s treatments have exceeded yearly and lifetime monetary caps.  When the ACA came along I thought there was Hope. I was so very very wrong.

I was denied access to care and proper treatment because the Primary Care Physician contracted by my Health Care Insurance Company refused to spend the extra time in properly documenting and justifying the referral to a Specialist. Money.

I was denied access to care and proper treatment because Health Care Administrators, the non-medical facilitators, hold a firm belief that Endometriosis is a made up disease.

When the White House Task Force for Women Veterans called me in June 2013, I had no intention of picking up the Endometriosis Battle ever again. I had documents stating I wanted to let whatever happens … happen. This rejection of Endometriosis extended to the Support Communities. Over the years, as my disease grew worse, and morphed away from the typical Endometriosis Cases and ventured into the Unknown, I started being censored on the internet support groups and in Local Area Support Groups. My story was too scary, my experience too horrifying.

I didn’t expect to find my Identity Thief in the Veterans Administration System, even though I had a suspicion. When I walked into the Santa Barbara County Veterans Clinic to file a Claim for the sole purpose of shutting my Mother up, my only intention was to Stalk my Stalker. I already knew the treatment options for Stage 4 Aggressive Endometriosis Post-Hysterectomy Bi-Lateral Salpingo-Oopherectomy was limited. Pulmonary Endometriosis is rare, and Cerebral Endometriosis completely intimidates the Medical Community. I knew there was nothing for me at the VA. But my mother married an uneducated misogynist pig who only watches FOX News, and listens to Rush Limbaugh, and he had her believing the VA would cure what ails me. Granted the man can’t spell Endometriosis, but he knows.

Imagine my surprise to discover the Women’s Program inside the Veterans Administration is quite competent and well versed in working with rare, complicated, and intimidating diseases. It might have something to do with being so close to the CDC, HHS and NIH, but what do I know?

In my Quest for Treatment over the years, I found the Key to Endometriosis Care is the Ring Leader: how good is the Primary?

The ACA does not address the issues of Endometriosis Diagnosis & Treatment. Instead, the ACA exasperates the situation and places larger, more cumbersome barriers the Woman must overcome to access true Health Care.

When a Primary drags out diagnosis, under the guise of giving their patient a Life Sentence, it is really about Money. Each visit and prescription and treatment course is more money in the Provider’s pocket. Endometriosis is literally the Medical Community’s Cash Cow.

The first Endometriosis Bonus comes slowly, approximately every 3-6 months, as the wrong diagnostic tools are used, the wrong and unnecessary tests are run, and the billing is completed for at least 18 months. Why is this important? Even under the ACA, a Woman with Endometriosis still must pay an annual deductible, often times well over $8,000 per year.  By 18 months of struggling for diagnosis, the Woman has paid nearly $12,000 out of pocket to the Physician.

At around the 2 year mark, the Physician is faced with the proverbial Rock & Hard Place, as they must refer the patient for further Treatment. The lack of firm diagnosis, and the ever present “suspect” verbiage applied to the Medical Records, combined with the receipt of real Money for Services, the Physician is now teetering on Fraud.

Enter Mental Health Services.

The Rock the Physician faced, Fraud, and the Hard Place they were attempting to avoid, referral to an Endometriosis Specialist such as a Gynecological Oncologist, can be alleviated with a diagnosis of Depression and/or Anxiety. The reasoning goes like this: the Woman is suffering perceived pain because she is Depressed and/or Anxious. By relieving the Anxiety, and lessening the Depression, the painful symptoms will go away and she will “feel better”

The important piece in this scenario is Cost. A referral to a Psychologist and then a Therapist, with the added benefit of Prescribing Anti-Depressants and Anti-Anxiety medication is thousands of dollars less than surgery. The benefit here is that the Woman is still paying out of pocket for Services. The treatment will be approved for 6-12 months, ensuring another $8,000 payment is made to the Providers via the Woman’s annual deductible.  The ACA can not, and was never designed to stop this behavior.

As the timeline flows, the Woman is now approaching 4 years without a diagnosis. It is now time to Pay the Piper. Endometriosis treatment can no longer be delayed, so off to the Gynecologist for Surgery to confirm Endometriosis ($35,000), followed by a round of Chemotherapy… I mean Lupron Depot. Six months, 3 shots, for a total per visit cost of $31,000 (times 3). Of course $4,000-$8,000 of that expense will be paid directly to the Provider by the Woman receiving treatment.

Keep in mind the disease is has been growing for 4 long years without treatment. The damage to the Woman’s Organs will be pretty extensive. Therefore, the Surgery will take longer and be more complicated, raising the cost to $85,000 because the disease was left untreated.

Once Chemotherapy starts, the pain will often return in the first Round. These side effects are always denied by the Physician, due to the bulk of Gynecological Practice relies on Lupron Depot for many Off Label Uses in Women’s Health.

Enter Behavioral Health & Addiction Services

As a result of the side effects, her Physician will prescribe opiates for 60 days at an unbelievable dose. The Woman will spend her days cutting pills to find the right balance of low grade pain and functionality. At the end of 60 days, when she attempts the refill as she prepares for her second Round of Torture, she will be denied the opiates and referred to Addiction Counseling. Now, in addition to being on Chemotherapy and walking the streets unattended, she has to tell a group of Addicts and Felons about her Disease, which she is still in treatment for, and will be for another 5 months.

This is the reality of Endometriosis in 2017 under the ACA. The proposed AHCA would have made the abuse even worse.

When the media serves you stories on Facebook about defunding Planned Parenthood, remember they are defunding an Organization that is incapable of serving over 20 million Us Citizens nationwide, and our population is growing.


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