The day started off with registration and juices and fruit and giving time to mingle and get settled in before speeches and 'break-out sessions' took place. I found it interested that as I looked around the different sections of the room and people began to talk that many of the patients were sitting together on one side and the doctors and medical professionals were all together on their side. There was a variety of speeches given from doctors that practice in the United States, Germany, Caribbean, and Puerto Rico. Speeches were focused on specific topics and every few speeches there was an open floor for questions from the audience for about 15 minutes.
The first topic was on endometriosis in general and then the discussion moved towards treatment, fertility, genetic patterns in endometriosis patients, hysterectomy, and pain management. I found that I was able to learn and take something away from each speech. Many doctors discussed the fact that pain is not and should not be permanent, the type of planning needed for surgery to avoid over-treatment of endometriosis, and when a hysterectomy or radical surgery is justified, requested, or needed.
I found the fertility discussion led by Dr. Braverman to be one of the most interesting discussions of the day. While I am not TTC today, knowledge is powerful. He discussed "silent" endometriosis where patients are experiencing infertility but have no other endometriosis symptoms and how through lab workups and genetic reviews of his patients he narrows down the possibility that a patient has silent endometriosis. In his experience, patients with silent endometriosis are much more successful after surgery and endometriosis diagnosis and treatment.
Before lunch was served Padma discussed her endometriosis story briefly with everyone attending the event. For lunch, everyone chose between grilled vegetables or a sandwich and each try came with pasta and a salad. I had the grilled vegetables and thought they were awesome, but not very filling. It was difficult for patients that were on the endo diet too as they could not have the pasta portion of the meal because it was not gluten free. In the future, I feel a gluten free option for patients would be a good addition or substitution on the menu.
We then broke out into group sessions. I attended the pain management section which was led by a pain management doctor and a psychologist. Patients expressed their anxiety, fears, and frustrations with endometriosis. I found this to be particularly therapeutic to be able to tell our stories to each other and doctors and to be heard. Both doctors in my section were particularly caring and compassionate. They seemed to truly want to help and listen to us (the patients).
The group reconvened and there was a speech made about pain management and the options for pain management for endometriosis patients. These options included different groups of medications, nerve blocks, and pelvic physical therapy was briefly mentioned. This speech closed out the day and was followed by cocktail hour.
Cocktail hour gave patients, medical professionals, and supporters time to mingle, meet each other, and ask personal questions. After cocktail hour a group of us went out to dinner for a night out. It was wonderful to sit at a table with everyone again and not worry about being self conscious or if you felt tired or had diet restrictions. Sometimes, a night out with the girls is needed-and what better girls than endo sisters??