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Real members of MyEndometriosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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Collaboration On Endometriosis Care Pathway Project

A MyEndometriosisTeam Member asked a question 💭

Hi everyone,

My name is Alaina Zubair, and I am currently pursuing an MSc in Healthcare and Design at Imperial College London. As an endometriosis patient myself, I am deeply passionate about improving the care pathway for those of us affected by this condition.

I am working on my dissertation, which aims to design and create a peer-reviewed consensus statement to establish a comprehensive and effective pathway of care for endometriosis. To make this project as impactful and practical as… read more

A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member Haha of course! If you can let me know your email address, I will contact you in a few months time once ethics approvals are completed.

Virtual Meet Wed, Jan 31, 2024 10PM Eastern Time.

A MyEndometriosisTeam Member asked a question 💭

Hi everyone, today Shanice and I met virtually and we'd love to meet more of you. If you are interested in joining us virtually Jan 31 at 10PM ET please email (Email address can only be seen by MyEndometriosisTeam users) and I will add you to the guest list. Thanks!

A MyEndometriosisTeam Member

Ok love thank you

How Do You All Handle Work/career? What Do You Do And How Do You Manage Work With This Disease?

A MyEndometriosisTeam Member asked a question 💭
A MyEndometriosisTeam Member

I am lucky to have a job working remote. I have a month of vacation each year, which mainly goes to my surgeries/hospital time, then I recover at home. I would otherwise be fired. My boss had… read more

Endometriosis Research Study

A MyEndometriosisTeam Member asked a question 💭

Hello everyone! I hope you are all doing well. Currently, my professor, Dr. Mary Ramos, and I are conducting a research qualitative study on endometriosis. We have received approval from Kennesaw State University's Institutional Review Board (IRB). As a nursing student and an endometriosis patient, I have observed the lack of effective interventions to manage endometriosis-related pain. Our goal of this study is to gain a better insight into the lives of other young adult endometriosis patients… read more

A MyEndometriosisTeam Member

Hi I'm 28, is there a chance that I can participate in this also?

Excision Funding Stories Wanted

A MyEndometriosisTeam Member asked a question 💭

Hello Beautiful Ladies
I hope that you are doing well. I am looking to collect stories about people's experiences with excision surgeries (in the US) and how they funded them for a project I am working on. If you or someone you know would like to share on this topic, please write back. My email is [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: [[email: (Email address can only be seen by MyEndometriosisTeam users) if anyone… read more

A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member what is your situation when it comes to this issue?

How Do I Know That My Endometriosis Is Flaring Up?

A MyEndometriosisTeam Member asked a question 💭

I have been experiencing pain in my right side that extends to my lower back and down my right leg it feels like a burning pain but at the same time it feels like ovulation pain feels on my side . I tried to touch the area it’s sore to the touch as well . I have emailed my gynae I’m waiting for a response . I am going to the GP today this pain is like wow and I’ve been ignoring it for a while now . My side is swollen too.

A MyEndometriosisTeam Member

Thank you I have been experiencing that pain too❤️

Is Anyone On Disability For Endometriosis?

A MyEndometriosisTeam Member asked a question 💭

I have several painful conditions, endometriosis being one of them, my pain is so severe and now been hospitalized twice due to small bowel obstruction. Also they found I have an autoimmune type of esophagitis. My insides are constantly inflamed and my cysts are very painful especially before and during my period and it’s getting worse every month, last two periods I ended up in the ER. I can barley eat due to all the stomach issues and the fatigue is real. Any advice for getting disability??

A MyEndometriosisTeam Member

Have you seen an arthritis, autoimmune doc. Had blood work ran? That is your first step to getting answers, what about a neurologist as well? Those 2 will be the most important, besides your… read more

Pre Gablin

A MyEndometriosisTeam Member asked a question 💭

Does any body else take pre gablin for pain? X

A MyEndometriosisTeam Member

Oh wow @A MyEndometriosisTeam Member! That is awful. And thanks for my hug!

The UNSPOKEN Truth Behind ENDO.. Opiates.

A MyEndometriosisTeam Member asked a question 💭

So many of us deal with pain that would debilitate our lives, if we weren't able to sustain ourselves with some sort of medication to tackle the flair up. But what works the best?

Most of my doctors have put me on Tramadol first and Oxycodone when I explain how Tramadol doesn't do much for my pain. As well as nerve blockers and NSAIDS (Which I limit always to, when needed). HOWEVER, society has a different view on pain medication and I'm wondering if this has made anyone feel uncomfortable… read more

A MyEndometriosisTeam Member

A tens machine has helped my back pain related to Endo, I've also just tried doing a modified FODMAP diet from my gastroenterologist as I was getting bad flare-ups on my right side near where my ovary… read more

Sweating/ Cold Sweats With Pain

A MyEndometriosisTeam Member asked a question 💭

Does anyone get crazy hot and sweat and then cold sweat with pain? It happens to me every morning once i start moving

A MyEndometriosisTeam Member

Hey there! The medical community has known about endometriosis since the 1800's. Because women have been unimportant in society, our health iasues have always been put on the back burner.

Endo DOES… read more