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My story: Ellen Greer.

Posted Jan 26 2013 2:00am

The symptoms began when I was 12 years old. It started out as unbearable, debilitating menstrual pain. I was spending several days each month at home in bed with a heating pad. My mother tried to tell the doctors that something was seriously wrong. They dismissed it as normal, gave me ibuprofen, and told me to suck it up - this was just the price I'd have to pay for being a woman.

Foolishly, I believed them. Little did I know that I actually had endometriosis: a painful and incurable pelvic disease that affects millions of women throughout the world, and is a leading cause of infertility. The pain can be so severe that it is commonly compared with childbirth. To this day, endometriosis remains chronically under diagnosed, and is often treated ineffectively - if at all.

Today, at age 31, I have had a total of 3 laparoscopic surgeries, and have been subjected to the full gamut of expensive hormone treatments. I have had to deal with contradictory medical advice, ineffective treatments, and the ever repeating message that this is somehow “in my head”.
Over the years, my pain became more frequent, occurring between periods, sometimes as often as three weeks out of a month. I was given ineffective medications and strong hormone treatments. While providing some temporary pain relief, the hormones caused unbearable side effects such as headaches, nausea, vomiting, extreme weight loss and violent mood swings. More importantly, these hormones do nothing to actually treat the disease.
Some doctors recommended a hysterectomy (complete removal of the uterus and ovaries). Others advised me to have a child, based on a pervasive myth that this can “cure” endometriosis. At 23, I was advised to either try to have a baby or sacrifice my fertility with a full hysterectomy, followed by hormone replacement therapy that would last until menopause. At that time, I was still in college and not ready to start a family. In considering a hysterectomy, I wondered how I could reconcile my identity as a woman without a uterus or ovaries. Fortunately, I refused to accept these options. (As I later learned, neither of these methods actually treat the disease).
To make matters worse, endometriosis often goes hand in hand with a host of other ailments, such as Irritable Bowel Syndrome, chronic fatigue, frequent urinary tract infections, fibromyalgia, and a weakened immune system. I suffer from all of these. The result is that I have all but forgotten what it means to feel well. I frequently miss work, and almost never go out for social engagements. I have suffered pain so debilitating that it has prevented me from achieving my academic goals, enjoying my hobbies, and simply living a normal life.
Like too many women, I have been living in a hall of mirrors. I have had to put my life on hold, and focus all of my energy on merely staying alive. I gave up on school and have worked at Starbucks for the last 13 years - my only source of dependable health insurance. Furthermore, I continually struggle to receive enough pain medication. The truth is: I hate using narcotics. They make make me feel slow, stupid, self-conscious and emotionally unstable. But I have to keep working, and without strong pain-killers, this would be impossible. I am constantly wary of being perceived as a "pill junkie", but what choice do I have?  There is some hope for women with endometriosis. Surgical removal of the lesions is the best way to treat the disease and reduce long-term pain. Unfortunately, many surgeons are inexperienced with identifying and treating these lesions. My previous treatments left me with a disease that never went away.
My last laparoscopy was in December of 2010, performed by an endometriosis specialist in Bend, Oregon. It showed promise, but the pain has returned again in full force, and my condition is once again deteriorating. To make matters worse, that surgeon has now retired. The few doctors left who are well qualified to treat endometriosis are out of my insurance network, thus the burden of paying for another procedure would rest entirely on my shoulders.  Despite these difficulties, I have not given up on finding ways to improve my lot. In my eagerness to find a surgeon who can help me, I was recently referred to a specialist working in Palo Alto at Stanford, Dr. Nezhat. He is the undisputed world champion in laparoscopic surgery, and has operated on thousands of women with endometriosis. He is a pioneer in the use of PlasmaJet, a device that can remove the disease in delicate or hard-to-reach places in the pelvis. Additionally, this technique minimises the risk that adhesions (scar tissue) will form. Adhesions can be as painful as the endometriosis itself, causing organs to attach to other tissues and creating many complications, including infertility.  The most promising aspect of Dr. Nezhat’s treatments is that his patients have reported some of the lowest percentages of disease recurrence. Many of his patients who had been told they would live the rest of their lives in pain, and would never be able to bear children, are now living pain-free and have been able to start families. At this point, Dr. Nezhat’s treatment is my best available option.  Aye, there’s the rub: Dr. Nezhat and his team are expensive. My insurance will cover some of the costs but, all told, I can expect to pay up to $15,000 out of pocket. I have no money. I am still paying for the previous surgeries, and I owe tens of thousands of dollars to friends and family who have helped me in the past. With a meagre barista salary, I can scarcely pay rent and utilities. I am now in collections, and debtors are threatening to garnish my wages.  Fighting my inexorable pride, I have had to push aside all of my obstinance and fear, and embrace my vulnerability in order to make a public plea for help. It is the only option I have left.  Of course, there is no guarantee that this surgery will fix all of my problems. But frankly, I have run out of things to try: dietary changes, herbal supplements, physical therapy, electro-stimulation, stress-reduction, pain medication - even acupuncture. The pain is back, it is as bad as before, and it is ruining my life once again. Given the choice between another standard laparoscopy (which will offer only temporary relief), and a chance to be treated with the latest technology by the best endometriosis surgeon in the world, the conclusion is self-evident: I must see Dr. Nezhat.
I once believed that with ambition, dedication, and hard work, one could achieve anything one’s heart desired. I wanted to be a journalist. I wanted to go to war-torn countries and give voices to those whose suffering would otherwise go unheard. I wanted to publish at least one novel in my life. I wanted a family. I just wanted to leave my mark on this world. But I have all but given up on dreaming. I now realise that none of that means anything when I’m physically broken.
Let me be clear: This surgery is not a guarantee. But it is the best chance I have. Maybe I’ll get well enough to finish school. Maybe that will enable me to get a better-paying job that challenges, stimulates, and makes use of my true talents. Maybe I’ll even be able to bring new life into this world.  I can’t be certain about any of these things, but I can be certain that if I don’t get this surgery, there will be no maybes. I am in so much pain. I am physically and emotionally exhausted. Enough is enough. Something or someone has to give. This is my plea. Please consider being that someone who gives.
 Thank you for sharing your story Ellen. Although the American health care system is so different to the UK's NHS, we still have the same issue here, that if we want non-standard treatments and do not want to go around in circles then we must pay the price for private care. Unfortunately, endometriosis has taken the chance of working away from some and in hand, the chance to be able to afford such costs. Like so many other women across the world needing treatment for this disease, Ellen is desperate to raise the funds to get her life back. Are you able to help her at all?

If you would like to contact Ellen, you can follow her on Twitter  @EllensEndoFund . You can also donate to her surgery fund here  or visit her page on Facebook .

Can anyone relate to Ellen's story? Have you had trouble paying expensive health costs? Maybe you're in the UK and want the same surgery but cannot afford to go private? Do you feel like you have had to give up on the life you wanted because of this disease? Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at  shireen.emlwy@gmail.com  along with a photo and I'll pop it on to here for others to read. 
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