WCE Patient Highlights

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PATIENT HIGHLIGHTS OF THE WORLD
CONGRESS ON ENDOMETRIOSIS

1. What were the highlights of the conference for you?
I had the pleasure of volunteering at the conference which was, in itself, a highlight. It was helpful to see doctors as people without them measuring their words so carefully and just being open about how damaging this disease is. There was no sugarcoating, no roundabout answers, just truth.

Hearing their own frustrations with the lack of answers and hope that they could give helped me deal with my frustrations. It helped to know that they were in the same place as me: looking at this damage and trying to find a cure, or a biomarker to at least move one step closer to lessen the damage. Hearing them speak about how they longed to be able to give hope to their patients, how they cared for their patients and hated giving them generalizations and unknowns.

I felt like this week gave me tools to be able to forge ahead, it gave me the strength to keep fighting and advocating for myself, knowing that there are others advocating on my behalf out there. I was treated like a person, not as a patient, not as someone broken that they were going to try to fix, but just as another person looking for answers. The medical side of things was fascinating to me. It helped me understand what is going on inside of me. It helped to hear the statistics and research and be able to step back and look at it from a different, more removed point of view. One of the biggest highlights was getting a free textbook, Endometriosis: A Concise Practical Guide to Current Diagnosis and Treatment. I have been reading this little bits at a time and though some of it goes completely over my head, I have been learning so much about my body!

2. Did any presentations stand out to you?
I thoroughly enjoyed hearing anything Dr. Sawsan As-Sanie had to present. She spoke clearly, with passion about her subjects and also spoke about her patients as humans and not just as a subject or a number. There was a very good presentation on the value of Visanne as a medication to treat Endometriosis which I thought was very well done.

One of the best presentations for me was by Deborah Bush from New Zealand. She spoke about patient centred approaches to improve quality of life with passion and knowledge and is doing very good work where she is. It made me a little jealous of women who live there. I was able to hear Linda Giudice speak on the implications of delayed diagnosis for endometriosis. This is a subject that directly affects me after a 14 year delay in diagnosis. I appreciated much of what she had to say and found a lot of it very applicable and still hopeful.

3. Did you learn anything new about Endometriosis? If so, what?
I learned so much during my time and even more after. I was given tools and resources there that I didn’t know about before. I heard doctors passionately explain what their research goals were to relieve suffering and focus on higher quality of life. I learned the reasons why some foods make me feel better and some hurt me. It’s so much easier when I know why I’m told don’t do this or do that.

I learned why I feel pain so quickly and severely and how my brain actually looks differently on scans due to the long term pain I’ve had. I learned that there are some things I’m more prone to that my doctor wouldn’t have told me about such as certain cancers and different risks in pregnancy that the typical woman. But this knowledge is not defeating: it helps me prepare and keep an eye out for things in order to protect myself. Ignorance is not bliss: closing your eyes to possible negative things won’t stop them from happening. In my opinion, I’d rather be prepared than finding more damage too late.