Why We Need Awareness – Endometriosis

Hello, my name is Onagh, and I’m … Well, I’m back. I am a Severe Stage IV Aggressive survivor.  I was diagnosed in 1999 for the final time with Chronic Severe Aggressive Stage IV Endometriosis.  I have been silent in the Endo Community for many years now, and in the stretch to get my Memoir into manuscript form on the 12th Anniversary of my 1999 surgery, I have recently re-joined and have been reading Endo mail and blogs.

I have 300 pages of Manuscript within one revision of headed to the Market.  My goal, set 3 years ago, was to get “the Book” in a sensible format and in front of “Somebody Important” by March 2011, twelve years after the most debilitating surgery a woman can endure.  It is now a memoir, and I have discovered through my reading/research that in 12 long years not a lot has changed in the Endometriosis Community.

We need Endometriosis Awareness because in the 12 years since I went silent in the Community nothing has changed.  Oh there is great lip service and announcements and other research, but as for the treatment of women enduring the disease, the same time honored disrespect and dismissal remains front and center of the Endo Woman's struggle for a pain free quality of life.

We need Endometriosis Awareness because the typical Woman with Endo has Stage 1 or 2, if they are staged properly at all, are not receiving proper treatment.  Most are staged through an Ultrasound by a Gyn who is accustomed to looking for arms, legs, fingers and toes, not Chocolate Cysts and Adhesions.

We need Endometriosis Awareness because in 2011, young Women are still being told a debilitating menstrual cycle is “normal”.

We need Endometriosis Awareness because the Medical Community as a whole still believes that Hysterectomy is the cure for Endometriosis.

Endochick:  Why we Need Awareness #1
http://endochick.wordpress.com/2011/03/06/why-we-need-awareness/

We need Endometriosis Awareness because the Health Insurance companies and the Doctors they contract with are not willing or able to manage Endometriosis pre or even post Hysterectomy

Endochick:  Why We Need Awareness #2
http://endochick.wordpress.com/2011/03/08/why-we-need-awareness-2/

We need Endometriosis Awareness because Health Insurance companies and the Doctors they contract with are not willing or able to manage the Bureaucracy of referrals and red tape they have placed around the treatment protocols for Endometriosis

Endochick:  Who Pays for Medical Mistakes
http://endochick.wordpress.com/2011/02/01/who-pays-for-medical-mistakes/

PubMed.gov -
Actuarial analysis of private payer administrative claims data for women with endometriosis.
http://www.ncbi.nlm.nih.gov/pubmed/17407392

We need awareness because Women are not dying from Endometriosis.  Instead their lives are strangled and twisted, their emotions stripped raw, and their immune systems attacked, until the disease progresses and their lives are in limbo.  They are diagnosed with Breast Cancer, Colon Cancer, or worse, Cervical, Uterine or Ovarian Cancer.   The mortality rates do not take the progressive nature and contribution Endometriosis gives to the holistic view when calculating statistics.

NationMaster.com – Endometriosis Mortality rates
http://www.nationmaster.com/graph/mor_end-mortality-endometriosis

Ovarian Cancer Mortality Rate Stage IV
http://www.ehow.com/about_5200712_stage-ovarian-cancer-life-expectancy.html

Uterine Cancer & Fibroid Mortality Rates
http://www.nuff.org/health_cancer.htm

I represent the worst case scenario for Endometriosis.  I represent what happens when Endometriosis Awareness is not communicated, funded or sponsored.  The women in my class of Endo are among the 1%-3% of Stage IV who have what is classically known as Ovarian Remnant Disease.   It means we continue to battle Endometriosis long after the Hysterectomy cure has been administered.

In 1999, the life expectancy for someone like me was 3-5% within the first year and 15-20% the second year.  Twelve years later and the first year life expectancy is now 17%.  While this is an improvement statistically, however, when reading the blogs and boards, it is not the same picture.

The Health Insurance companies are worse than ever in processing Endometriosis related treatments and referrals.  It is still a well known fact that the PPO option is really the only way to treat Endometriosis and for the lucky few with the financial resources, to pay for the Infertility related/classified treatments out of pocket.

Because of this failure on the part of the Insurance companies, the Pharmaceutical industry has given us a paltry few drugs to manage the disease, and instead, focus on the general female condition.  Take the recent advertisements for drug treatments focused on women with Irritable Bowel Syndrome.  Many of the drugs excluded women with Endometriosis by the very nature of their chemical makeup.  Women with adhesions and dysmenorrhia, the 2 hallmarks of Endometriosis, were prevented from using the drugs under any circumstance.

IBS – Help for IBS
http://www.helpforibs.com/footer/medications.asp

Women with Endometriosis are relegated to hoping they can find a trained Physician with enough knowledge of both the disease, the authoritative protocol versus the Insurance Company protocol.  With luck they have found a GYN with a staff who understands the creative billing codes needed so that she can get the $300 shot of Lupron every month to keep her hormones suppressed to slow and stop the march forward of Endo’s progressive attack on the body.   Maybe she has found a way to remain at the very edge of Stage II Endo by delicately balancing her hormones, if only she could find a consistent Physician within her HMO who would order the right blood tests and prescribe the correct amount of hormone replacement.  Maybe, like me, they cannot take synthetic hormones most prescribed and heralded as miracle cures by the Health Insurance/Medical Industry, and she needs compounded all natural hormone replacement.  The trick she must perform is finding a way to get her very expensive Health Insurance plan to cover the alternative prescription which runs $350-$500 per order.

Do you think Breast Cancer patients are experiencing this level of Medical Malfeasance?

Do you think any of the Physicians associated with the Susan G Komen Foundation make the Insurance referral errors and medical misdiagnosis that Endometriosis patients experience?

The Endometriosis Research Center (ERC), the Endometriosis Foundation of America (EFA), the Endometriosis Treatment Program, and the Center for Endometriosis Care (CEC) have made tremendous strides in the treatment of Endometriosis independent of the Pharmaceutical and Health Insurance Industries pressure to avoid Excision Therapy.  What is missing in the Cause is the connections and lobbying necessary to pressure Health Insurance companies to sponsor and support the treatment of Endometriosis as a gateway disease to Cervical, Uterine, Ovarian and Colon Cancers in Women.

In 2011, the Organizations at the Forefront of Endometriosis Research must take a new position and begin to use their knowledge and influence with both the Health Insurance policies towards the treatment of Endometriosis and demand a change in the classification of both the disease and its treatment protocols as Infertility related.

I am a firm believer that the work of Drs David B. Redwine, MD, FACOG (EFA & Endometriosis Treatment Program),  Robert B. Albee, M.D., FACOG (CEC), and Ken Sinervo, MD, MSc, FRCSC (CEC) directly contributed to my survival of Stage IV Endometriosis.  With the work they published on the internet between 1996 and 2000 they provided the foundation I needed to endure my battle with both Stage IV Endometriosis and the Health Insurance Company.  Through the education these physicians and the Organizations they are affiliated, gave me the knowledge and the power to navigate the HMO/PPO world of Endometriosis and get referred to Dr Ronald Leuchter, a Gynecological Oncologist at Cedars Sinai Comprehensive Cancer Center.  I was able to communicate with my physician and go through the surgical experience with informed consent.

Endometriosis needs Awareness at the Social, Political and Financial levels.  We need more independent research without the strong arm of the Pharmaceutical Giants putting profit over care.  We need Lobbyists in our Political infrastructure influencing the Health Insurance Monoliths that better business decisions in the classification and treatment protocols for Endometriosis will lead to lower over all health care costs for women and reduce the incidence of Breast, Cervical, Uterine and Ovarian Cancers.

Support Endometriosis Awareness.  Donate to the Endometriosis Research Center (ERC), or the Endometriosis Foundation of America (EFA).  Wear a yellow ribbon to show your support of Research for the Cure of Endometriosis.

The Endometriosis Research Center (ERC)   http://endocenter.org/

Endometriosis Treatment Program  http://www.endometriosistreatment.org/

Center for Endometriosis Care (CEC)  http://www.centerforendo.com/

Endometriosis Foundation of America (EFA)  http://www.endofound.org/

EndoChick:  Endometriosis: the silent life sentence  http://endochick.wordpress.com/

The Jamaica Inn – Endometriosis  http://thejamaicainn.wordpress.com/category/endometriosis/

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