Livingwithendometriosis_

Happy Birthday Dr. Eugenio-Colón ! 🥳🥳

Appreciation and celebration! HAPPY BIRTHDAY, Dr. José D. Eugenio-Colón - DrEndometriosis 🎉🎂🥳🎈🎊🎁

Them: How long have you been experiencing your cramps?
Me:

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sO mUcH rOoM 🥴🫠

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Excision with a proper Endometriosis Excision Specialist is the gold standard of Endometriosis care. However, it would be blind of us to assume that our care will start and end there.
Many can not afford to get that specialized care. And those who do, usually spend years before AND after dealing with the damage it caused to their bodies (tissues, organs, nerves, etc.)
I’ve had doctors literally refuse care when they hear the word ‘Endometriosis’. As for the doctors who do actually see patients with Endometriosis, most of them end up spreading false information to their patients, mis-treating the disease, and neglecting to see it for what it REALLY is (unintentional or not, it’s still not okay).
Extrapelvic Endometriosis is NOT rare. It is time to stop treating Endometriosis like it is a reproductive disease. IT IS NOT A REPRODUCTIVE DISEASE.
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CenterForEndometriosisCareDr. José D. Eugenio-Colón - DrEndometriosis Endo What? Endo Girls Blog The Endometriosis Summit: Patient & Practitioner Town Meeting Andrea Vidali MD Endometriosis, Adenomyosis , Miscarriage

Not that it’s ever really been fair to begin with.
I can’t tell you how many times I’ve encountered a doctor that was genuinely sympathetic to patients but didn’t know what to tell them because according to everything they know ( on top of navigating what insurance tells them ) they should be the one treating you. However they know you have already tried every pain medication and birth control route, done the therapies, endured the surgeries, survived the lupron/depot shots, and are still in pain with numerous uncontrollable symptoms.

ENDOMETRIOSIS NEEDS ITS OWN SPECIALTY.

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🌸Endometriosis is not the same for everyone🌸
🌸The only thing that is consistent between every single patient is that their Endometriosis is still not the Endometrium🙃🌸

Happy Holidays from my fused, dysfunctional endo-damaged insides! 🎄

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🔔 REMINDER 🔔
Endometriosis is a whole body disease 🎗️

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🥴🤣😭
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Not to mention the misinformation, years of mistreatment, and the doctor’s appointments that leave you feeling worse than when you went in. 🫠
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• Endometriosis Awareness Month 2023 •

Going to a new doctor is stressful enough in the first place. The blood work, exams, personal questions, re-discussing your medical history and not knowing if they’re going to be supportive or dismissive, etc. But then when you mention you have Endometriosis, one of the first questions you hear is “but are you on birth control?”

Let me get one thing straight, birth control is NOT an actual treatment for Endometriosis. For most, not only does it not help, but it causes severe side effects (hair loss, acne, weight gain, nausea, headaches, mood changes, etc.). It’s different for everyone. A lot of us even take it continuously because our doctors tell us it’s better to just not have periods, yet we can still have 2-3 periods a month, heavy breakthrough bleeding in between, and often other irregularities. Personally, I remember bleeding once for 6 months STRAIGHT. And that was while on Lupron.

So why even stay on birth control you ask? Because a lot of doctors refuse to even bother seeing us as patients if we won’t stay on birth control or try their other medications like lupron/depot/orilissa. Why is this? If I have tried your recommendation of treatment for YEARS and it’s just made me more miserable, I should be allowed to turn down that option without fear of rejection, being shunned, or called stupid.
Heck, I should be able to deny it PERIOD.

It is my body and Endometriosis causes enough damage without having to put up with the side effects of birth control. Stop using coercion to force your patients to keep taking birth control and other hormone altering medications.

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Endometriosis is NOT a uterine disease.

Endometriosis Education Boot Camp 🎗️

resources worth following :
Endo Girls Blog CenterForEndometriosisCare Endo What? Extrapelvic Not Rare The Endometriosis Summit: Patient & Practitioner Town Meeting Dr Endometriosis

Lady Bug Custom Gifts 🌻🫶🏻

I am Obsessed with how these came out, y’all. they are gorgeous. I can’t wait for mine to come in the mail so I can start repping endo in style! 🌻😍🥹
If any one wants to support our endo efforts, i’ll share the link to these beautiful earrings below 👇🏻
(Also, her etsy page is full of other beautiful earrings and other items also, so check it out!)

https://www.etsy.com/listing/1428322425/endometriosis-awareness-earrings?click_key=f5b41446a1fca625b8da16cdaeff6000ebf27599%3A1428322425&click_sum=197a93a8&ref=shop_home_feat_4

March is Endometriosis Awareness month🎗️

Endometriosis affects 10% of women. Although the disease is relatively common, it is not very well known, extremely misunderstood, and considered taboo.

Most doctors constantly misdiagnose this disease and give infective and damaging treatments. Endometriosis has always been considered a reproductive disease. Current research shows that it is so much more than that.

Endometriosis can be found, and has been found, everywhere in the body. It causes severe, chronic pain month long throughout the body in those affected.

I know this because I am one of these 1 in 10💛

An endo sister reached out to me and asked me if I could make clay earrings with an endo awareness ribbon and sunflowers on it. I was more than happy to give it a shot. I cannot express how happy I am with how they turned out!!😍

These earrings are a beautiful way to begin to spread awareness for this disease💛

If you’d like to learn more about Endometriosis, check out Livingwithendometriosis_. She has so much information on her page and she keeps all the research up to date, correct, and easily understood. She is also the one that reached out to me about these earrings💛

Thank you, Laura, for the inspiration and for all the hard work you put into putting out the correct information for endo!!💛

Endometriosis Awareness Month • 2023 •
I don’t even know what to say at this point that hasn’t already been said a million times.
No other choice but to stay impatiently patient while we wait for the rest of the world to catch up and realize what a big problem this is.
🎗️🌿

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Loving someone with endometriosis.
Please give this a quick read and share.
And if you have endometriosis or know someone who does, please feel free to leave any other info/advice you’d like to include in the comment section! 💛

Things like diet modification can be helpful for some in pain/symptom management. But it is just one small piece of the puzzle to managing this disease. It is in no way a cure, no matter how hard you stick to a diet and what you add/cut out.
Promoting this sense that if you follow a specific protocol of juices and foods you can cure your endometriosis is not only harmful in the way of further delaying proper treatment of the disease, it’s also extremely damaging mentally those who have tried diet after diet, restricting just about everything, and still having severe pain. It leaves them thinking it’s their fault, like they still must be doing something wrong. That is HARMFUL. STOP IT. You did not cause your endometriosis. and your diet, no matter what it is or is not, is NOT the reason you still have it. Please know that 💛

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Endometriosis is a devastating, confusing disease. You often leave the exam room or post-op room more confused than when you went in. My hope is that these slides help break some of it down, making it that much less scary to understand what we do know about this disease. As well as prepare you for reading your surgical reports and your future discussions with your doctor!
Shoutout to Endo Girls Blog for helping me put this together, and always letting me run everything by her to ensure I’m never sharing any misinformation (even when my anxiety makes me do it 10 times). Kate, you are the MVP and one of our fiercest advocates! I don’t know what I would do without you! 💛
Endometriosis specialists / advocates, are there any additional terms you would have included?

Sources:
Allen-Masters Windows: https://www.endometriosis-india.com/peritoneal-endometriosis/

uterosacral ligaments: https://my.clevelandclinic.org/health/body/23261-uterosacral-ligament

infundibulopelvic ligaments: https://www.ncbi.nlm.nih.gov/books/NBK499943/

resection: https://www.medicinenet.com/what_is_the_difference_between_emr_and_esd/article.htm

Endometriosis definition: Kennedy S. et al. 2005; Klemmt et al. 2018; Saunders et al. 2021

Adhesiolysis definition: “100 Questions & Answers About Endometriosis” - David B. Redwine, MD, FACOG (Book)

DIE - definition: ; additional source with more education - https://www.sciencedirect.com/science/article/pii/S1553465019312993

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