Help Rachel get Endometriosis Treatment

TLDR:

After over a decade of living with debilitating menstrual pain and going from doctor to doctor for answers, I was recently diagnosed with endometriosis and will be getting laparoscopic excision surgery to treat it this summer. Unfortunately, due to a lack of education and funding for research on women’s healthcare allowing negligence of insurance companies, this life-changing surgery will cost me roughly $12,700.

I am asking for support in raising the funds for my treatment and spreading awareness on endometriosis. Please know that if you are not able to contribute financially, even just reading my story below, sharing this (if you choose), and educating others on endometriosis, supports me.

Long story:

It can take on average 6-10 years for patients to get diagnosed with endometriosis—I was diagnosed with endometriosis over 10 years after my symptoms started. Despite being taught growing up not to take no for an answer from doctors who didn’t listen to me or shoved me out of the room while gaslighting me, I still fell victim to the healthcare system’s vast ignorance around women’s health, particularly endometriosis.

Endometriosis is a painful disorder that is caused by cells similar to ones in the lining of the uterus growing elsewhere in the body. It primarily affects women, but because it involves female sex organs it can affect non-binary and trans men as well. Mild cases of this disease can be asymptomatic for some, while for other folks the disease can wreak havoc on the internal ecosystem and cause myriad health problems, especially if it is not caught early enough.

When you do an initial search on endometriosis online, the symptoms that come up not only are nondescript but also, they do not encapsulate how incredibly debilitating this disease can be (copied from the Mayo clinic):

In my experience, I started having debilitatingly painful periods as soon as I hit puberty that would often result in me having to miss school curled up on the couch in immense pelvic pain that no heating pad or pain medication could fully alleviate. When speaking to my first OBGYN about this, the response I received was “that’s what labor pains feel like, so you’re getting a preview for what giving birth will be like!” I was given extra strength pain medication and birth control and was sent on my way with no explanation as to why my cycles were so painful nor any indication that this wasn’t normal.

This theme continued in my life, not only with the chronic pelvic pain and dysfunction I was experiencing but also in the GI issues I’ve experienced that I’ve since learned go hand in hand with endometriosis. In my 20s I went from doctor to doctor for answers only to be told “it’s all in your head,” “it’s just a bad period,” or “your tests came back negative so you’re fine.” All the while, spending days out of every month trapped in the bathroom and in bed with excruciating pain that has pushed me past my limit emotionally. The pain feels like I’m getting stabbed in the uterus while also setting it on fire from the inside; it has caused me to throw up and pass out at times and ultimately has made me terrified of my periods every month.

After years of self-advocacy and fighting the healthcare system, I found a care team in Portland, OR that finally was able to answer the questions about my health I’ve been living with by diagnosing me with endometriosis. Unfortunately, this isn’t the end of the battle. Hundreds of clinical, peer-reviewed journals indicate that laparoscopic and excision surgery are the gold standards for diagnosis and treatment of endo. However, due to the American Congress of OB-Gyn’s not recognizing excision as a specialty, most insurance companies do not cover it thus forcing providers to work out-of-network and patients to shoulder the financial burden for treatment.

I’ve been scheduled for robotic laparoscopic excision surgery on July 30th with Dr. Shanti Mohling. The full cost of surgery remains to be seen following the procedure and fighting my insurance company, but this is what I have been quoted:

All funds raised will go towards my medical bills. If donations exceed the cost of my bills, the rest will go towards covering living expenses as I will be off work for several weeks.

Support can come in many forms than just financial and I welcome all as I continue to manage pain leading up to surgery and navigate the changes I experience following this treatment. This has been an incredibly vulnerable and exhausting journey and I genuinely appreciate any and all contributions made towards my healing. Thank you for taking the time to read this.

Links to more information on Endometriosis: