Endo Excision for All

For those of you who might not know me, I'm Brittany. I'm reaching out to seek your support as I prepare for an essential endometriosis excision surgery—crucial for my health and well-being.

My journey with endometriosis has been incredibly challenging. As long as I can remember, my periods have been more than just inconvenient—they’ve been overwhelming. In my younger years, the pain was so intense that I often missed school. I would try to alleviate the agony by taking scalding hot baths, sometimes nearly passing out from the heat and pain combined. Crawling to my parents' room at night, I would find myself on my hands and knees, crying from the unbearable discomfort.

A vivid memory stays with me: at 11 years old, I was at a slumber party when I woke up in the dead of night, writhing in pain. Too nervous to wake my friend's mother, I turned to my friend, who offered me two Midol pills. Even though I hadn’t yet learned to swallow pills, desperation drove me to chew them. It was disgusting, but I didn’t care.

At 15, I visited an OBGYN, only to be reassured my symptoms were part of "adjusting to becoming a woman" and labeled as merely "painful periods." He suggested the pill for relief, never mentioning endometriosis. Grasping at any solution, I accepted the prescription. While the pill dulled the pain somewhat, allowing me to attend classes, it never fully resolved the issue. I completed nursing school and eventually decided to stop taking the pill to see if I could manage without it. However, the pain promptly returned. In my gut, I knew something was wrong, but that little voice in my head telling me it was all just a part of womanhood rang louder than my gut. I decided to tough it out as best I could.

I adjusted my life around the pain, developing coping mechanisms, rescheduling events, canceling plans, and relying on extra-strength Tylenol and Ibuprofen daily during my periods. Over time, the pain changed. Instead of debilitating cramps, I started experiencing intense aches and throbs in my lower back, extending down my legs and into my feet. This aching was so severe that I thought I had sciatica. I didn’t connect the dots, assuming it was just the physical toll of being a nurse. Now, I realize that cyclical extreme back and leg pain is a major red flag for endometriosis.

In my yearly physicals, red blood cells started showing up in my urine screenings without any signs of UTIs, and I noticed increased urinary frequency and burning. These symptoms are also indicative of endometriosis, something I wasn’t aware of then. My periods became shorter, consisting mostly of frequent clots. Again, now I know this is a sign of endometriosis.

Concerned about my shortened periods, I had my fertility tested at 31. The results showed my egg count was 0.7—equivalent to that of a 40-year-old. This alarming data point propelled me into researching endometriosis more deeply. I finally had evidence that something was wrong. However, when I went to see my OBGYN nurse practitioner, I was told my AMH level was just the “low end of normal” and not to worry. I was dumbfounded. The reference range for this value spans from 0.1 to 14, encompassing those in menopause to individuals with PCOS. How could this be considered normal for someone my age? I was furious, but I finally realized I was being gaslit, time and time again, by the medical professionals I trusted.

This compelled me to dive deeper into endometriosis research. I was determined to find answers and stop the cycle of misinformation. I discovered the unfortunate reality that women's health is severely underfunded and under-researched. I learned that standard OBGYNs often perform ablation surgery on women with endometriosis, instead of the gold standard excision surgery, which actually removes endometriosis lesions rather than simply burning the entire abdominal cavity. I learned that standard OBGYNs are not qualified to recognize and excise endometriosis lesions, despite the insurance companies stating they are.

After tirelessly searching for an endometriosis excision specialist, someone truly qualified to treat this condition, I found Dr. Behbehani. From our first meeting, she was a revelation. Dr. Behbehani was the first doctor to genuinely listen to my concerns. She spent almost an hour with me, allowing me to share my full history and experiences. Unlike others, she personally conducted my pelvic ultrasound, rather than delegating it to a technician.

Dr. Behbehani validated all of my concerns, including those about my AMH egg count and the constant pain I've been enduring. During the ultrasound, she discovered that my right ovary is twisted behind my uterus and has become scarred to my back abdominal wall. This upcoming surgery aims to remove all the endometriosis lesions and scar tissue in my abdominal cavity. It promises to liberate me from the relentless cyclical pain that consumes two weeks of every month. That's half of my life spent in discomfort and misery.

Moreover, this procedure holds the potential to reverse the ovarian damage I've suffered, giving me a real chance to have children naturally, without resorting to IVF. This surgery is truly my light at the end of a dark tunnel.

You might be thinking, “you’re a nurse, how could you miss this?” Well, unfortunately, in nursing school, little was taught about endometriosis—limited to symptoms like heavy bleeding, passing large clots, and debilitating pain that makes attending school or work impossible. Through my research, I have learned that endometriosis is so much more than that. It is a multifaceted, systemic inflammatory condition. Endometriosis is not something anyone should have to “just deal with.” It’s not just part of being a woman; it’s a serious condition demanding attention and understanding.

However, the financial burden is daunting. The cost is significant, and my insurance refuses to cover Dr. Behbehani's fee, instead suggesting I undergo the outdated and ineffective ablation surgery with a standard OBGYN. But I can't accept that. I deserve the proper medical care needed to tackle this disease head-on. In fact, every woman on this planet deserves the same.

Once I'm on the path to recovery, I am determined to advocate fiercely for women's health. But first, I need help from my community. In an act of vulnerability and desperation, I am reaching out to ask for assistance to cover the $9,000 out-of-pocket medical expenses. Your support would make all the difference in helping me receive the care I need, and in enabling me to stand up for others in similar situations.

Thank you for your time & consideration.

With love,

Brittany

Help Launch Endo Excision for All: Funding Hope for Endometriosis Patients

Hello, I'm Nicole Notar, and I've started a foundation called Endo Excision for All. While other foundations focus on research and advocacy, we're tackling the missing piece of the puzzle: actually helping women pay for excision surgeries.

Why We Need Your Help

Endometriosis affects millions of women worldwide, causing debilitating pain and significantly impacting quality of life. The gold standard treatment is excision surgery, but here's the problem:

1. Lack of specific insurance coding for excision surgery severely limits coverage and reimbursement, forcing patients to forego treatment or accumulate crippling medical debt.

2. Scarcity of skilled surgeons within insurance networks creates substantial barriers to access, leading to prolonged suffering and potential disease progression.

3. Exorbitant out-of-pocket costs render this essential treatment unattainable for many patients in dire need, perpetuating a cycle of chronic pain and diminished quality of life.

That's where Endo Excision for All comes in.

Our Goals

1. Direct Financial Support: The majority of funds raised will go directly to covering or contributing to the cost of excision surgeries and related expenses for those who can't afford them.

2. Advocacy: We're working to raise awareness about the importance of excision surgery over less effective treatments like ablation.

3. Policy Change: We're fighting for the creation of a specific insurance code for excision surgery to make it more accessible.

4. Education: We're committed to helping women understand their options and navigate the complex world of endometriosis treatment.

How Your Donation Helps

Your contribution will kickstart our efforts to make a real difference in women's lives. Here's how we'll use the funds:

- Directly assist women in accessing excision surgery

- Support our advocacy efforts for policy change

- Invest in fundraising initiatives to expand our reach and help more women

It's important to note that we are an all-volunteer organization, and no money is used to staff the nonprofit.

Join Our Mission

Every dollar brings us closer to our goal of making excision surgery accessible to all who need it. Your support can change lives, offering hope and relief to those suffering from endometriosis.

Thank you for considering our cause. Together, we can make a significant impact in the lives of women battling endometriosis.