Summer's Endometriosis Treatment
$3,815 of $30,000 goal
I am raising money to help pay for endometriosis excision surgery. Excision is the "gold standard" of endometriosis treatment, with the lowest rate of recurrence after surgery. I'm planning to have my surgery at Vital Health Institute, a world-renowned endometriosis specialty center located 30 minutes away. Unfortunately, the majority of the cost is not covered by insurance and must be paid out of pocket.
Endometriosis is an incurable chronic illness in which tissue similar to the lining of the uterus occurs on other parts of the body. The pelvic cavity and reproductive organs are most commonly affected, but the disease can attack almost anywhere, causing severe pain, internal bleeding, scarring and even permanent organ damage. The pain can be accompanied by extreme fatigue, nausea, immune disorders and a host of other symptoms depending on the location and extent of the disease. You can read more about "endo" here:
What It Really Means To Have Endometriosis
and here: http://endocenter.org
I was officially diagnosed with endometriosis in 2008, but I have lived with it since adolescence. I knew something was wrong in 2002, when my health issues began interfering with college classes and other aspects of my life. Despite crippling menstrual cycles that lasted for weeks at a time, the first doctor I saw told me that "a little cramping is normal" and sent me on my way. I dropped my classes when I could no longer attend or keep up with course work.
(An average entry from my pain journal.)
A few years later, I began to experience pelvic and abdominal pain independent of my cycles. Then, and only then, did it cease to be classified as "normal." At 24 years old, back in college and working full time, I finally heard the name of my disease. By then the pain was a constant companion. In January 2008, my doctor performed laparoscopic surgery to confirm the diagnosis and attempt laser removal of endometrial tissue. Unfortunately, this procedure is not a cure and the rate of recurrence after laparoscopy is high.
When my pain came back stronger than ever, I spent the next several years playing guinea pig to a series of doctors and specialists, trying every possible treatment available from traditional and alternative medicine alike. When none of them worked, as my pain levels climbed and my quality of life plummeted, I finally consented in 2012 to the total hysterectomy my doctor had been pushing. Hysterectomy is not a cure.
When I woke up from surgery, I was told that I have deeply infiltrating endometriosis (read more: http://www.pelvicpain.org.uk/index.php?page=deep-endometriosis ) which could not be operated on at the time. These surgeries have complications of their own, including adhesions (which can cause even more pain) and surgical menopause at 29 years old. As my condition worsened I had to give up school again, then work. Since then I have seen three more doctors, and each has told me there's nothing they can do.
Endometriosis must be excised completely or it can continue to proliferate, even after removal of the uterus and ovaries. Excision surgery is performed by a handful of specialists in the United States, and Dr. Andrew Cook at the Vital Health Institute is one of the finest. This procedure is my last, best hope to take my life back from the ravages of a disease that has tried to take everything from me.
Left unchecked, it will continue. UntiI I undergo excision surgery or someone finds a cure, I will spend every day in debilitating pain. Although endometriosis is not fatal under normal circumstances, the nature of my disease puts me at risk for complications including bowel perforation and kidney failure. What I fear more than any of that is the steady decline in my ability to live. Before I got so sick I was active and adventurous, full of dreams and plans and ideas. I am still the same person inside--at least I know she's in there somewhere--but my existence today is very different. Even if I never get better, I will keep trying to make the best of each day I'm given. But I know I could do so much more. With a little help from my friends, that chance is within reach. Thank you so much for taking the time to read my story.
Fight Another Day!
I've created a Facebook event page for the "Feats of Wonder Fun and Fitness Challenge" at https://www.facebook.com/events/1715661045353024/ Here you are welcome to share your activities, follow along with updates and suggest new challenges. It can be as simple as posting about the walk you took today. All participants will receive a small thank-you gift from me.
I also hope to raise awareness for endometriosis and find sponsors to contribute to my Endo Fight Fund by accepting challenges and performing Feats of Wonder. Name the feat and I will try it! This whole thing started with push-ups, but where it will end is anyone's guess. Tune in for the thrilling conclusion!
"Complex cases of endometriosis, where organs in the pelvis fuse together, lesions infiltrate deep into tissue or where the disease crosses surgical specialties from bowels to intestines to ureters, uterus and ovaries can take up to nine hours to excise.
But the relative lack of surgery-based clinical studies showing effective treatment, Hopton said, has left insurance companies to pay the same meager reimbursements for meticulous, nine-hour surgeries as for 30-minute attempts at laser destruction.
In the language of money in American medicine, coding, no specific code exists for different laparoscopic endometriosis procedures. Using Medicare codes, for example, all endometriosis laparoscopies are expressed as 58662. That code pays between $615 and $950, depending on a patient’s location.
For specialist surgeons who spend years training, those rates are untenable. Those payments set a baseline for private insurers to negotiate reimbursements, setting a kind of glass ceiling for rates."
And so excision remains a kind of holy grail for most endometriosis patients. I know that raising this kind of money is a huge undertaking, but I have seen others succeed and go on to reclaim their lives. While I continue to explore other treatments and to pray for a miracle--for a true cure for all of us--I will keep working and saving toward this long-term solution. Your help has already been invaluable. Thank you for the gift of hope, and for all your support and aid to the progress of this quest of mine.