Your share could raise $30
Before you go, did you know that simply by sharing this campaign, you could help it raise $30? It's an effective way to support the cause.No thanks
- Add on tab
- Pin it
Patrick Hennessey hasn't added a story.
a personal statement by Ellen Greer
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 underdiagnosed, 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 minimizes 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 meager 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 realize 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.
Visit our facebook page:
Learn more about endometriosis:
HighlightsSee all activity36
Delete media item?
Delete this item from the media gallery? It will also be deleted from any related story update.
Set as ?
The campaign video will appear in social media and email.
The campaign cover picture will appear in social media and email.
The will appear at the top of your campaign page and in social media and email.
It will be removed from the top of your campaign and won't be used as default in social media and email. The will remain in the media gallery.
Add to a Facebook Page tab
You can add to a tab on any Facebook Page which you manage.
Please note that as of Nov 2017, only Pages with 2,000+ fans are able to install custom tabs.
How to remove a Page tab It looks like you don't have a Facebook Page yet. How to create a Facebook Page It looks like you don't have a Facebook account linked. Click here to edit your account settings
Share a link
Delete this story update?
Any pictures or videos will remain in the campaign's media gallery.
Thank you. We take reports like yours very seriously. Our goal is to keep the community safe.
Please know that we may contact you for more information, but that we won't notify you personally of our decision. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Thank you. We've already received your previous report. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Tell us about the problem. Please fill in both fields below.
Record a video
Upload a video
Nothing grabs attention for your cause like a personal video. Take a minute or two to record one now. Record a short video message of support. Or upload one from your device. You can preview or redo your video before you post it.
Nothing grabs attention for your cause like a personal video. Upload a short video message of support. Upload a short video message of support. Or record one right now.
- Most effective video length: about a minute.
- Maximum length: 5 min.
- You can preview or redo your video before you post it.
Heads up! The existing video will be replaced.
Email your friends
Join our team
Tell people why our cause matters to you. Your personal message will encourage others to help. Easy, effective, optional.
Say it in video
Short personal videos by supporters like you are incredibly powerful. Record one right now and you'll help us raise more money. Easy, optional, effective.
Add a personal goal
Set a personal fundraising goal. You'll encourage more contributions if you do. And rest easy. There's no obligation to achieve your goal or bad consequences if you don't. Easy, optional, effective.
We have a video!
We'd love to show you our campaign video. Want to take a look?
, you're already on the team.