Endo Excision for All

Hi, I'm Raina. I'm 34, and I have stage 4 endometriosis.

On June 20, I underwent excision surgery with Dr. Nicholas Kongoasa in Atlanta — one of the few specialists in the country truly trained to remove endometriosis at its root and promote integrative aftercare. After years of pain, confusion, and misdiagnosis, I am happy to have found a path forward — and I took it.

During surgery, Dr. Kongoasa discovered deep infiltrating endometriosis affecting my bowels, and had to remove my appendix, which had been compromised. The recovery hasn’t been easy, but the relief from relentless pain and the chance to feel at peace in my body again has made it more than worth it.

The surgery and recovery stay came to $8,500 out-of-pocket, plus $800 in hotel costs while healing far from home. I was able to secure 12-month interest-free financing, and while I’m deeply grateful for that, the monthly payments are still a challenge as I recover and try to rebuild my energy, strength, and financial stability.

Endo changed every part of my life — physically, emotionally, professionally. I used to be an avid dancer, a doctoral researcher, and someone who loved to move through the world with energy and purpose. Over time, that world shrank. Even walking became painful, and brain fog, digestive issues, and chronic fatigue became my normal.

I’ve done everything I could to manage naturally — from gut healing and bioidentical progesterone to clean nutrition, acupuncture, and integrative care — but it simply wasn’t enough anymore. I was having multiple large endometriomas over 10cm every few months, with intense bloating and pain.

To stay afloat, I took a remote job at lower pay so I could manage symptoms from home. I’ve missed dancing, time with family, and the career I once chased so hard. But I’ve also poured my experience into something meaningful: my page, @bloom.beyond.endo, where I share honestly about the journey — what helps, what doesn’t, and what I wish I knew sooner. That space has become a lifeline, not just for me, but for so many others navigating this invisible illness.

If you’ve made it this far, thank you. If you feel moved to contribute to my healing journey — even just a few dollars — it would mean the world. And if that’s not possible, sharing this page or sending prayers is just as impactful.

Your donation helps with:

- Monthly payments toward my $8,500 surgery bill

- Recovery expenses like supplements, acupuncture, and pelvic therapy

- Allowing me to keep creating free resources for the endo community

I’m hopeful that this is my turning point — toward more movement, more life, and hopefully, dancing again.

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.

After years of being dismissed by doctors, I was finally diagnosed with endometriosis at 27. My journey began at 14 with severe pain, and worsened through my 20s as I built my culinary career.

An ineffective "exploratory" ablation surgery in December only made matters worse and accomplished little. Now I've found hope with Dr. Colon, an endometriosis excision specialist who can properly treat my condition and preserve my fertility.

We need $6,000 upfront for his fees, with additional surgery costs reaching up to $14,500. This doesn't include travel to Atlanta, accommodations, or post-op care.

Your support will help cover these critical medical expenses and give me a chance at both pain relief and starting the family we dream of.

Thank you for helping me fight this battle against endometriosis.

With gratitude,

Maria

My name is Sabrina Ramirez; I’m 28 years old, a nurse, a wife, and a mom of two small kids, fortunately. Growing up, periods are not something that receives empathy. The pain and heaving bleeding are deemed to be normal. I vividly remember starting my first period at 11 years old in P.E. class after running. I was in excruciating pain, and the pain didn’t stop. The only relief I would get is balling up into the fetal position.

My mom did her best, creating an “emergency kit” of extra underwear, pads/ tampons, and Tylenol because of the numerous school calls telling her I once again bleed through my clothes. At the age of 16, I went on the birth control pill for my irregular periods and heavy bleeding, feeling some relief as my periods started to regulate. I was even able to come off of the birth control around the age of 20.

A couple of years later, I had my two children, Matthew (5) and Ellie (2). After these pregnancies, I decided to get the IUD, only to be met with 7-day long periods, irregularity, and numerous hemorrhagic cyst ruptures. After numerous ER and urgent care visits, worsening pelvic pain, and bleeding, I removed my IUD in November of 2024, only to have no resolution of these issues.

My gynecologist chalked it up to the IUD, then PCOS, and finally suspicion of endometriosis. After multiple ultrasounds “only showing functional cysts” and normal labs he agreed to do a diagnostic laparoscopy. At my pre-op appointment, he stated I should cancel as he was “not going to find anything” - clearly unknowledgeable about how endometriosis doesn’t typically appear on scans.

Enough was enough, and I gratefully met Dr. Behbehani. I am so thankful to her for validating my concerns and pain while educating me that my cyst is not just function, my left ovary is adhered to the back of my uterus, and endometriosis is indeed suspected.

In attempts to get the surgery covered, insurance was not willing as it is out-of-network, and my initial provider was unwilling to write a referral as he is not properly trained on endometriosis and doesn’t understand the severity. Here I am, almost a month later, calling my insurance every day to negotiate some type of coverage, but hopes are low as there is still no insurance code for deep infiltrating endometriosis excision surgery.

I pray for the day to get the surgery I undoubtedly deserve and for the day women no longer have to advocate tooth and nail just to cross their fingers for gold-standard medical care.