I have endometriosis: a debilitating and painful disease that affects 1 in 10 women.
What is endometriosis? Tissue similar to what lines the uterus finds its way elsewhere in the body, forming lesions and scar tissue that can bind organs together. This can cause serious complications, including a need for bowel resection or catheterization. It also causes severe monthly or daily pain. This isn’t a minor ache or a case of “bad cramps”. This is gut-wrenching, knife-stabbing, gripping the toilet in a cold sweat pain. This is passing-out from pain. Muscle relaxers and heavy narcotics barely touch the pain.
What’s even worse is that it takes an average of 7-10 years to get diagnosed, due to the stigma of a ‘woman’s disease’ and a lack of education. I’ve been suffering the worst of the pain for the past 7 years. Doctors told me I could not have endo, even though it’s genetic and runs in the family. After years of failed hormonal treatment attempts, I finally got an official diagnosis in December 2015. This was via exploratory laparoscopy, since the only way to get a diagnosis is to surgically go in and look. Upon waking I was told that I had Stage II endo that pulled down my colon, but that the disease was removed and all was put back in place. I had great hope that I would be pain-free. The first month went by and I felt terrible. Then the next month, and the next the pain got increasingly worse. After much research, I found out that my doctor used cauterization to burn off the disease. This is not good (and what most Ob/Gyns do). It’s akin to weed whacking poison ivy: this stuff has roots and grows back with a vengeance. I was worse off than I’d ever been. Furious and struggling to pay off medical bills, I searched everywhere for an answer.
The only proper treatment is excision: cutting out the tissue by the roots and painstakingly removing it from every organ. This takes hours and can only be done by the most highly-skilled surgeons; there are only a few in the country. I found the Center for Endometriosis Care in Atlanta, GA, where patients fly from all over the world to have surgery. After getting an immediate response from my application, I put in motion all plans to have the procedure. The most difficult part is that health insurance does not understand the time needed to properly treat the disease. Therefore, most all excision specialists are out-of-network, making the operation much more expensive.
My surgery will happen on October 11th. I am flying down on the 9th for prep, plus several days of recovery in Atlanta afterwards. I will also be off work for at least 8 weeks.
I need help with travel expenses (my dear boyfriend John will be my caretaker), and lodging. The biggest expense will be the out-of-network physicians fees, but luckily the hospital fees are in-network. My donation goal estimates the total for all these expenses (which could increase, and I will update accordingly).
For more information on the Center for Endo Care (CEC) and the disease, please see: http://centerforendo.com/lapex-laparoscopic-excision-of-endometriosis/ Other resources include: http://www.endofound.org/ and Endowhat, a great documentary: http://www.endowhat.com/
If you are unable to contribute to this campaign, please pass it along to educate others. The biggest problem is misinformation. We can no longer be quiet about endometriosis. We must stand up and battle because we deserve a life without constant pain.