Monday, January 13, 2014

Bloggers Unite for #EndoMarch2014: Week 1 - Basic Info and Why I Am Marching

Rocking my Endo Warrior shirt

You may have read my last post, A Message to my Endo Sisters, but what you might not know is that I have become very active in the Endometriosis Support and Awareness community since my excision surgery in June. I flew halfway across the country to have my endometriosis excised, meaning the tissue was cut out completely, like a cancer. I have written some articles for an online women's health journal, Hormones Matter, about my experiences with Endo and some recipes that I have created for my anti-inflammatory diet. I have also joined several support groups online, and have met some amazing, inspiring women along the way.

I have been gearing up for the EndoMarch in Washington, D.C. on March 13th, 2014. The event will unite women, men, families, partners, doctors, nurses, and advocates whose lives have been changed by Endometriosis, a disease which affects nearly 176 million women and girls worldwide. Dr. Camran Nezhat and his team have put months of effort and planning into this worldwide event to raise awareness, begin early detection screenings, advocate effective treatment, advance training for nurses and physicians, and allocate governmental funding for endometriosis. To find a team in your country, click here

In the US, the EndoMarch will take place from 9am to 9pm, including live music, special guest speakers, a march on Capitol Hill, and a post-march dinner. Registration is free, and you can do so on the EndoMarch website.  I personally cannot wait to meet my Endo Sisters and have my voice heard!

As a Stage IV Endometriosis patient who has lived with this disease for nearly 15 years, and who has been given her quality of life back by a highly skilled excision specialist, I want to tell my story. I think it is incredibly important that girls and women know the signs and symptoms of this disease so that they can get effective treatment as early as possible. Endometriosis stole years of my life, jeopardized my career, destroyed my organs, and negatively impacted my fertility. I spent far too many years of my life on hormonal suppression therapies that came with their own complications. I gained a lot of weight, experienced menopausal symptoms, experienced impaired ovarian function, decreased bone density in my spine, and even lost a decent amount of my hair. The countless doctors I have seen for the pain and detectable complications (mainly, complex ovarian cysts) dismissed my requests for surgery, and gave the disease more time to destroy my body. It took 7 years after my first ER visit for a doctor to finally agree to perform an exploratory surgery. By then, the damage had been done.

Every doctor who comes in contact with women with pelvic pain needs to know what endometriosis is, how it can impact a woman's health, effective treatments with low risk of life changing side effects, and to whom they can refer the patient if they cannot effectively treat her pain (click here to learn more about the difference between burning the surface of endometriosis [ablation or fulguration] and completely removing the disease [excision]). 

Endometriosis does NOT contain itself to a woman's reproductive organs, and is not cured by hysterectomy. Endometriosis has been shown to produce its own estrogen, which feeds the disease. This is why women have pain even during and after hormonal suppression, complete hysterectomy, pregnancy, and menopause. At my excision surgery, just 11 months after my ablation surgery, endometriosis was found on my bowel, left round ligament, utero-sacral ligaments, cul-de-sac, pelvic brim, bladder, ovaries, ovarian fossa, appendix, rectocervical space, and one Fallopian tube. In total, 18 separate sites of confirmed endometriosis. 

Endometriosis is NOT caused by infections, STDs, or retrograde menstruation. Studies suggest that endometriosis is laid down during embryonic development by dislocated endometrial tissue. In fact, patients have been found to have symptoms (such as bowel issues and endometriomas) prior to the onset of menses. The sooner we dispel the myths, the sooner we can start treating the disease effectively. 

Endometriosis DOES come at a heavy price. Not only does endometriosis steal a woman's physical and emotional health, but it steals her ability to be a productive member of her community. Despite our best efforts, many endometriosis patients have had to take significant time off from work and school. Many of us are barely able to leave our beds when our pain is at its worst. A study has shown that the health insurance and loss of productivity costs are estimated at $22 billion in the US alone. Endometriosis is worth allocating funding for research and medical professional training. 

For all of these reasons, for myself and for my Endo Sisters, I am ready to stand up and have my voice heard. Endometriosis is a complex disease with the potential for serious complications. It is a disease that affects every aspect of a patient's life, and loved ones around her. Women with endometriosis deserve better than to be put on band-aid treatments that do not reduce or cure their disease. Endometriosis patients deserve better than to be brushed aside when doctors do not know what to do for them next. Endometriosis patients deserve effective treatment and recognition for the strength and courage they show as they fight this debilitating and life-changing disease. 

I will be joining other bloggers for the next 10 weeks as we Unite for EndoMarch 2014!

I hope to see you all on March 13th!

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