Endometriosis and Infertility Awareness Videos 2015

Hello valued endometriosis community members! I am putting together three separate videos for Endometriosis and Infertility Awareness. Two of the videos will explore the effects that endometriosis and/or infertility have on mental health. One of the videos is entitled “think endometriosis” and will talk about the effects that misdiagnosis and mistreatment have on the patient, the quality of life and their fertility.

These videos are for education purposes and also to help other patient feel less alone. Infertility and endometriosis have a profound impact on mental health.  Anxiety and depression are a common side effect of struggling with these diseases. Yet, it is not often talked about or it is ignored. Trauma and grief are also a big part of the lives of women suffering from these illnesses, yet women don’t always know they are experiencing these things.  It is time to shed some light on these issues to help patients understand what they are feeling. Mental health care providers need to be sensitive and aware of these patient needs so that they are not dismissive. Doctors need to not only treat the physical needs of each patient but ask the patient how their emotional health is and give them resources for extra support.

My “Think Endometriosis” video is directly aimed at educating the medical community at large. So often the patient’s journey to seeing an excision specialist is a harrowing one filled with well meaning, but uneducated doctors that do more harm than good. I first started going to a gastroenterologist at the age or 19. Had he diagnosed me, I would have had far less surgeries, far less pain and would have made better choices regarding my fertility. I have talked with women who have gone to the top reproductive endocrinologists that this country has to offer and yet their advanced endometriosis was missed and their treatments unsuccessful and written off as unexplained.

It’s time to bring these horror stories to the forefront in hopes that doctors educate themselves and change the way they treat endometriosis patients and think about endometriosis. Most often women do not have the energy to confront the doctors that are not giving them the treatment that they need or those who have mistreated them. They simply move on to someone who can help them and not look back.  Hopefully sharing these stories will help patients who suspect endometriosis not have to go through the cycle of trauma that other patients have endured before them. Maybe even well meaning doctors who may see this video will change their ways.

When: Saturday March 7^th from 10am -2 pm . I will have brunch available in the conference room for patients to socialize and will assign half an hour increments where I will take each patient into another room and record them.

Where: Maria Droste Counseling Services 33rd and Madison http://mdcsnyc.org/

What: I will ask patients a series of questions regarding their journey to diagnosis. I will ask patients to open up about the emotional toll endometriosis/infertility has taken on their lives, their relationships, the way they view themselves and their overall mental health.

I am going to post the video on my youtube channel and share over social media. I will also present it at a lecture I am doing at Fairfield University.

If you are able to attend or have any questions, please send me an email caseyberna@gmail.com .  I may be able to also do some skype interviews. I am working on that possibility.

2015 Endometriosis Events to Look Out For

 

March is Endometriosis Awareness Month! Why is awareness so important? Endometriosis is a horrible, invasive and painful disease. Unfortunately, not many people know about endometriosis or “think endometriosis”.

This lack of awareness is pervasive, effecting the medical community, family, friends, employers and society at large. This lack of awareness and understanding only further devastates patients that are already suffering. Doctors fail to diagnose patients in a timely manner and often use treatments that further harm the patient instead of help. Employers do not understand when patients need time off. Family and friends sometimes do not understand the disease and fail to support patients in meaningful ways. Society as a whole does not understand or take endometriosis seriously. Yet, this disease has a serious, profound impact on the life of a patient. 

Turning your facebook page yellow may seem simple and maybe even silly, but it will help start a conversation with those you are connected with. Sharing your journey with endometriosis, or the journey of someone you love on social media or in your community, can help someone else get diagnosed, get proper treatment or feel less alone.  Participating in organized events near you helps create a larger impact. The more voices that join together the louder we can be heard. It is time to end the silence.

Here are some ways to participate. If you have any questions, feel free to email me caseyberna@gmail.com.

Events You Can Do From Your Living Room

1)      Turn Facebook Yellow for Endometriosis : Really simple, for the month of march let’s have facebook turn yellow! Ask all of your family and friends to do it too.  http://www.endochallenge.com/
 

2)   Thursday, Mar 5, 630pm EST  http://on.fb.me/1CdcZDC Let's Talk about Endometriosis! Join Dr Sinervo from the esteemed Center for Endometriosis Care in Atlanta and The Endo Challenge  Details and RSVP at link - http://on.fb.me/1CdcZDC

3) Participate in Knock Out Endo’s powerful social media campaign by joining their facebook page and share why you pledge to Knock Out Endo… https://www.facebook.com/Knockoutendo

4) Are you on Instagram? Follow Endometriosis Advocate EndoHappy this month and take her Awareness Month Photo Challenge! 

5) Advocate Ask Me About My Endo is encouraging folks to take pictures of Ruby the Endo Roo out and about to raise awareness and qualify for prizes.

 

 

6)      Donate Money to help Endometriosis Patients or Endometriosis Non-profits. There are awesome non-profits who are campaigning this month who would appreciate your support. I am focusing on helping two specific patients in need.  An endometriosis patient and a dear friend of mine, a military spouse, has emptied her life savings to fight to keep her forever family together and is now in desperate need of excision surgery.  If a certain amount of money is raised, I get a pie in my face! Win-win! http://www.gofundme.com/pieface4family 

In addition, a personal patient of mine is about to be homeless, is a single mother and has severe endometriosis and adenomyosis. She needs help getting on her feet again and quickly. If you are interested in helping her please email me at caseyberna@gmail.com
 

Global Events

1)      On March 28^th, communities across theglobe will be working in conjunction with Worldwide EndoMarch to participate in awareness events. Check out their website to see what is going on in your community. EndoMarch is organizing two main events this year in Palo Alto California and Washington D.C. To register for these events and get more information at http://www.endomarch.org/  If you plan on attending the D.C. event make sure to go to the social event the night before run by some of my favorite leaders in the community: http://www.eventbrite.com/e/endosocial-2015-tickets-15783198973
 I had so much fun in D.C. last year. I made a video of the experience!

 

 

2) Endometriosis.Org has put together an extensive list of endometriosis events happening around the globe. Go to http://endometriosis.org/news/support-awareness/endometriosis-awareness-2015/ to check it out!

 

New York City Events

1)      On Saturday March 7^th, from 900am-3pm, I will be interviewing patients at Maria Droste Counseling Services to be put in a series of awareness videos. I will be lecturing at Fairfield University regarding the impact infertility and/or endometriosis has on mental health and I am looking for women to come and share their stories to present to the class.  I am also formulating a video called “think endometriosis” highlighting the medical mismanagement so many patients get and the devastating it effects it has.  If you can make it email me caseyberna@gmail.com

2)      Come hear expert endometriosis excision surgeon Dr. Seckin and celebrity and women's advocate Padma Lakshmi, co-founders of the Endometriosis Foundation of America, speak about endometriosis on March 10^th. http://www.92y.org/Event/Endometriosis.aspx

 

4)      On Saturday March 28^th, EndoMarch in conjunction with the EFA, are encouraging endometriosis patients and their supporters to storm the Today Show Plaza to make some noise and get some attention for this silent disease. Sign up here: http://www.chancesour.blogspot.com/2015/01/participate-in-endomarch-through-ny.html
 If you do not have anything yellow to wear to the Plaza, buy one of these cute t-shirts here and in doing so your donation will support the amazing programs the EFA leads in educating young people and supporting patients.  

 

5)      From April 10-12 the EFA will be holding its annual Medical Conference and Patient Day.  Urge your doctors to attend the medical conference to hear the best experts come and discuss the disease. Come to the EFA’s free patient day to get invaluable resources and the latest information regarding endometriosis. Make sure to plan to come out afterwards for a drink with fellow attendees!  

6)      Sometime in the fall I will be hosting an endometriosis retreat! If you are interested in more information and would like to be put on the mailing list, email me at caseyberna@gmail.com

Hooray for Endometriosis Awareness! Looking forward to seeing some of you at these events and seeing all the yellow awareness spread across the globe to honor our stories and our experiences!