Frequently Asked Questions

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Hi! I'm Sarah, your friend with endometriosis...so yes, I do have endo. 

I was diagnosed with Stage 4 Deep Infiltrating Endometriosis in Sept 2023. 

I've been actively sharing my experience on TikTok with everything related to Endometriosis since June of '23, which is when I started on my journey to diagnosis and healing. 

In July of 23, I started fertility medicine (IVF Egg Freezing), at my surgeon's recommendation, prior to my surgery. In Sept '23, I underwent laparoscopic endometriosis excision surgery with one of the very best endo experts in LA, where he had to remove endo from 26 different places in my body - including my ovaries, posterior cul-de-sac, bowels, bladder, ureters, peritoneum, countless ligaments and muscles, and also my appendix. 

I had a rare complication from that surgery that almost killed me and landed me in the ER...only 2.5 weeks later. It was a rough year. Unfortunately, I've been struggling with pain ever since...and I'm doing everything humanly possible to feel better. I'm sharing my personal experience with various endometriosis treatments, different medical practitioners, life style changes, in hopes that it helps you too.

LOL nope. 

I'm a Entertainment & Tech Marketing Executive, I've never taken a single class in medicine....

BUT - I was a debate nerd for 5 years. So I'm really great at research. 

AND - Thanks to my job, I'm explaining complicated topics daily to rooms full of toddlers....I mean, executives...and I've been doing this for years now. If experience serves, I'm pretty qualified to explain complex issues in a way that makes sense to most people. 

AND - I have Endometriosis, and much like you, I'm sick of suffering and feeling helpless.  After 20 years of disappointing, dare I say negligent, medical care...I quickly realized that I needed to take my health, and my future, into my own hands. I needed to start learning everything that my tiny little brain could about endometriosis.

While I'm not a doctor, I'm learning how to level the playing filed by leveraging Artificial Intelligence (AI) - like Google AI and Chat GPT - to help research the facts and science related to endometriosis. I love making AI more accessible to women, and in that process I know I'm teaching myself (and others) how to use it. 

AI is such an important tool for us, and it really isn't that scary.

...So am I doctor? No. No, I'm not. 

I'm not offering you medical advice. 

I'm offering you my research and my opinions, as someone who cares, someone who has been there, as a friend who actually empathizes and listens. 

Sadly, most of us don't have doctors like that.

I can tell you mine. Things I notice before my period starts (w/ stage 4 endo):

• I’m peeing more frequently and sudden urgency (way too many close calls)
• Or I get “phantom pees” where I have to go really bad but nothing comes out. This happens a few times in a row.
• My mood gets worse ☹️ anxiety, depression, panic attacks, short temper, lots of crying (even though I know this is gonna happen, it always always does, in the moment I never realize).
• My IBS-C gets worse and it’s a struggle to poo no matter how much miralax I take 
• night sweats
• FATIGUE - a level of exhaustion that healthy, “always tired” people never experience. It’s all I can do to get up
• PAIN - 🐘 elephants stomping on my uterus, 🔪⛏️stabbing pain in one or both ovaries, 🪢🗜️my insides are being pulled/squeezed/stretched, cramps so intense it feels like my uterus is actually trying to yeet itself. 
• Advil + Tylenol at max dosages do not come close to touching the pain 
• BLOATING - my endo belly gets so big it hurts my skin. Tight clothing on my waistline feels like murder. 
• Huge knockers 😂😂 they swell up 2 cup sizes 
• Low grade fever - 99.1-99.3 (not a real fever but it’s enough to feel crappy)
• Period flu - stuffy/runny nose, sore throat, aches, nausea 
• Hard to breathe deeply / catch my breath. Occasional sharp stabbing pain in chest and/or heart. (Diaphragm endo)
• Cyclical low back pain
• Shoulder/neck pain (it’s a constant for me but it gets way worse)
• More hair loss?? 😭😭
• Sudden craving for sweet or salty food
• Brain Fog - I can’t think clearly, facts and words get jumbled, my memory is shot, deep thought is so hard
• Burning sensation like a yeasty before the bleeding starts?? (Just me?)
• sensitivity to hot or cold 
• Existential dread - feels like something terrible is about to happen and I can’t explain it 
• sensitivity to certain smells
• random face rash around my nose/chin
• Overwhelming desire to run away, move apartments, end relationships (that I later regret)
• Nausea/vomiting from feeling abnormally full after a meal
• Eye allergies!?! 
• Tooth pain
• heart racing 24/7
• Insomnia - harder to fall asleep or wake up