Insta, TikTok, Youtube*A year later, and I need two more surgeries! My total hysterectomy is November 16th, and I’m on a wait list for sacral neuromodulation after my Urodynamics surgery showed my nerve isn’t signaling. I’ve had 7 iron infusions, but can’t get to a stable level due to the chronic blood loss from my 12 day long periods. Hopefully the hysterectomy will give me a better quality of life, and keep me out of the ER

Any donations help!

Fundraising goals:

-8k left from last surgery, just surgeon fee

-4 months of pelvic floor therapy (approx $1400)

-month of cat food and litter (approx 200)

-medications, approx $100

-7k of credit card debt from last surgery (infusions, ERs, meds, catheters, special food, transport)

*Hi! My name is Jess, I’m 25, a Lindy Hop dancer and performer in NYC, and I have an aggressive and rare form of endometriosis. I am asking for financial support for my life-saving surgery which has put me in incredible medical debt.

Currently, I am recovering from surgery and due to the severity of my disease and ongoing pandemic, I am unable to work and pay essential bills.

I’m grateful for The Lindy Hop Community that came together to help me with my tonsillectomy in 2019, as well as the up-front costs for Excision Surgery in 2021. Without your support, I would not be walking right now. I look forward to dancing with you when I’m healthier in the future!

If you’d like to donate through another app, or in person, message me on Facebook.

My Endometriosis Story:

I’ve been a professional performer since I was 4 years old, but in the past 5 years my health has rapidly declined to the point where I can no longer do what I love. It’s been a long road of being undiagnosed for 13 years, and treatment has only just begun. When I woke up from surgery, the first thing Dr. Liu and Dr. Larish told me was “You are very lucky”. I didn’t quite understand what that meant until I read the surgical report and saw how close I was to dying. Although it is expensive, It’s extremely important to use a specialist for endometriosis excision as it is very difficult to find and remove. Even after the surgery, I’m still dealing with chronic pain, severe bleeding, bowel and rectal issues, bladder dysfunction, pelvic floor dysfunction, anemia, nerve damage, medical trauma, and immune issues and may be for a long time.

Cost Breakdown:

-Endometriosis Excision Surgery: $30,000

-Trigger point injections: $6,000

-Surgeon consults: $1,900

-Pelvic Floor Therapist: $740/month

-Monthly medications: $140/month

-Monthly supplements: $130/month

-Physiatrist: $800/month

-Follow up Doctor Visits: $500

-ER visits from obstruction caused by surgery: $375

-Gastroenterologist: $200

-Dietician: $250 

-Radiology: $100

-PT tools: $60

-Therapy for trauma: $65/week

 

My Specialized Endo Excision Surgery consisted of:

-Complete Peritonectomy

-Excision of endo off my Cervix and Peri-rectal areas

-Mobilization of my Sigmoid Colon (endo had fused it to my front abdominal wall, left psoas, and left iliac fossa)

-Sutures in my sigmoid for reinforcement due to blunt dissection

-Bilateral Ureterolysis (endo fused both of my ureters and surrounding structures to my pelvic sidewalls, blocking the flow from my Kidneys to my Bladder for an unknown amount of time)

-Excision of thick Retroperitoneal Fibrosis

-Draining of a Paraovarian Cyst (on my Fallopian tube)

-Appendectomy

-Nerve Blocks and Bladder Botox

I will post weekly updates about my progress here, as well as regular updates on @EndometriOhNo on Instagram. I hope that sharing my experience and resources will help others who are struggling to find clarity and direction.

 Thank you so much for your donation and consideration!

*If you’d like to learn more about Endometriosis, I recommend NancyNooksEndo website, TheEndoSummit, and Seckin Endometriosis Center. Also, Here is my own google drive of resources and folders! It includes everything I’ve learned to manage this disease, as well as my surgical report and video. Feel free to use whatever helps you: https://drive.google.com/drive/folders/1-PuX-F61WY1ChW7spghy0YThcJGjePtW