On average, Endometriosis takes 7-10 years to be diagnosed. While I’d like to say it’s because it’s some inherently mysterious or rare disease (it’s not— it affects 1 in 10), it’s most likely because we have a tendency to not take women’s pain seriously. This was true in my case and it took years of alarming symptoms (age 13-20), in which I was continuously reassured it was in my head, before somebody took my pain seriously and ordered an ultrasound. What they found made their eyes go round in a way I can only describe as the exact opposite of casual dismissal. I had two large ovarian cysts— one the size of a pomelo (google it—yikes), and the other the size of a grapefruit. That was only a small portion of the war zone going on in my body, as the majority of Endometriosis cannot be picked up by any scan. I was able to have the Endometriosis excised shortly after, which was a relief, considering I had a cyst that was blocking off my intestines, preventing me from being able to eat more than a small cracker without feeling sick. I was told that I should feel better following the surgery and was reassured by doctor after doctor that my surgeon was one of the best around for treating the disease. However, what followed were a series of years (AKA my twenties) of increasing pain, scary drugs, and advocating for my symptoms to be understood and adequately treated.
The pain persisted after the surgery and since I had exhausted every birth control on the market without relief, my last option was to treat it by going through chemically induced menopause at age 23. This made me a very angry person, as chemical castration tends to do to a person, and after a three month course of the shot, I had to stop taking it, as the side effects were too severe and were causing bone loss, and also I was still in pain. I had exhausted all of my options. Or so I thought.
At this point, I ended up taking up a vegan diet to help with the pain, stopped wearing normal people pants (yes, that’s why I live in spandex), joined clinical drug trials, went into temporary courses of menopause, started acupuncture, and lived off heating pads and Aleve. This sort of worked until…
At some point, I realized I was living my life in bed, except to go to work. Around this time, I had to quit my job to make my health the number one priority. Easily, the most terrifying of symptoms has been when I started losing my ability to walk because of the Endometriosis and inflammation. The Endometriosis has started to affect the nerves in my back and those that run down my legs. I find myself collapsing more and more. Also, I have found eating to be more and more challenging of an activity. Every time I eat food it feels like I am digesting a family of steak knives. Sitting in a chair is difficult because all of my organs are stuck together and it hurts to have them pulled apart. Breathing has become more difficult, as the Endometriosis infiltrates my diaphragm, making it difficult for my lungs to expand. So leaving the house these days, as you might have guessed, is a difficult task, what with the whole needing to sit, eat, and breathe thing.
The Good News!
Unfortunately, because of the lack of awareness and the complexity of the disease, there are few surgeons that can adequately excise 100% of the disease. There is a persistent, erroneous belief that Endometriosis “grows back” no matter what is done to remove it, even though the scientific evidence points to the fact that this is simply not true. Because this belief persists in the medical field, most surgeons are not adequately trained to fully remove the disease from all the organs it can grow on, most likely because they believe the disease will grow back anyway. Luckily, I found an OUTSTANDING surgeon at the Center for Endometriosis Care in Atlanta. He is one of few surgeons able to fully excise the disease from any organ (including my intestines and diaphragm) and keep it from recurring! His recurrence rates for the disease are as low as 7% and he has helped thousands of people be essentially cured from a disease they were told they would live with for life.
This means I could stand, walk, eat, have a job, do all the fun human things! However, with all great things, there are costs involved.
The costs involved are hefty, since this procedure that could change my life is recognized by most insurances as “medically unnecessary” and also, out of network. That means that every single cost involved will come directly out of my pocket.
On May 24, I will undergo surgery that will cost somewhere between $23,000-$39,000, depending on the amount of work that needs to be done once they look inside. Included in that is the cost of the excision surgeon, the colorectal surgeon, the thoracic surgeon, the anesthesiologist, the pathologist, and the general hospital stay. Other costs will include flights out to Atlanta for the people taking care of me and a two week hotel stay while I recover.
Your donation will go directly to the surgery or the costs associated with staying in Atlanta. The surgery will remove Endometriosis from all the sites in my abdomen, including my bladder, intestines, ovaries, uterosacral ligaments, appendix, diaphragm, and potentially lungs.
I’ve had to put my life and dreams on hold, as my focus has shifted to getting through each day. It would be amazing to have the chance to sit in chairs, walk down the street, eat a meal, and breathe without pain. More than anything, it would be amazing to feel like I had the chance to not only dream about where I would like to have my life go next, but actually be able to execute it without pain ruling my life. When I say life-changing, know that I am not someone prone to hyperbole, at least when it comes to my health. It is hard to comprehend what life could look like after this surgery, but know that every donation will be treasured beyond what I can convey in words.
I have Stage 4 Endometriosis and deal with debilitating pain every day. I have spent a decade going through difficult and inefficient treatments and it still persists. There is a surgery that can essentially give me my life back and potentially allow me to live Endometriosis-free. You can help get me there by donating or sharing! Thank you so much!
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