Sunday, April 12, 2015

EFA Patient Awareness Day

It was such an honor to talk to endometriosis patients about the affects of endo and infertility at the Endometriosis Foundation of America Patient Awareness Day. For those of you that couldn't be there here is my talk!

Endometriosis and Infertility

Intro: Hi there, my name is Casey Berna. I am an endometriosis patient myself; I have had two excision surgeries with Dr. Seckin and four endo related surgeries before I found him.  I am also an infertility and recurrent pregnancy loss survivor.  I am a social worker and I do therapy with endometriosis and infertility patients and I also run monthly support groups through Endowarriors and resolve.

 

Important Things to know about Endometriosis and Infertility

1)      This is hard and you are all superwoman. Having endometriosis, a chronic, painful disease is INCREDIBLY difficult. Navigating infertility is a devastating struggle. When you put these two things together, it creates a physical and emotional crisis that is not really recognized by most doctors, co-workers, family, friends and society in general. Handling one of these things is exhausting and all consuming, handling both at once takes superhuman powers, which in my professional experience, most endometriosis patients seem to possess.

2)      Be gentle with yourself, take care of yourself. Just because you have superhuman powers doesn’t mean you have to use them all the time. Feel free to say no to moving your brother into his new home, skip Cousin Susie’s baby shower or opt out of visiting your friend in the hospital who just had her third baby. I give you permission, no I demand you to protect your heart, body and your spirit during this time of crisis.  When you can remove any toxic people or situations in your life that suck all of your energy and bring you more stress.  I have one patient who calls her mom right before her transfers and tells her she can’t talk to her for a week. During this time, I feel like many of us are just doggie paddling through life, you don’t need someone or something to pull your head below water if you can avoid it.

3)      Be aware of the emotional impact endo and Infertility. Many patients struggle with anxiety and depression. Endo causes fatigue, pain and the diagnosis and treatment of the disease is not simple. Patients undergoing infertility treatments, seeking out third party reproduction or going through the adoption process, often have hope, but their struggle is real and they often feel a lack of control and uncertainty. There are real stressors, financial emotional and physical often associated.  These experiences can be isolating.  Getting involved in the endo and infertility communities changed my life. Connecting with other women online who are going through similar things or attending a local RESOLVE support group can truly help. Get connected. And parts of endometriosis and infertility are downright traumatic. If you feel like you are drowning, reach out; find a good therapist who understands endo and infertility. It will help so much.

4)      Be your own advocate. I have worked with so many patients who, even at the top clinics, have had their endometriosis dismissed or ignored when seeking fertility treatments. Listen to that little voice inside of you when it says that something doesn’t seem right or feel right.  Listen to your body. Educate yourself. Go online. That right I am ENCOURAGING YOU TO GOOGLE. Ask questions in the reliable forums. Read the articles posted on the endometriosis specialists sites regarding infertility.  If your dr. dismisses your questions or the information from specialists or dismisses the role endometriosis can play in infertility, find a new doctor. This is your body. Believe in yourself. Remember you are superwoman.  

5)      Keep faith in yourself. Family building is a stressful and invasive process, it is so intense. Endometriosis can also be an intense, invasive and relentless disease. So many patients come to me saying they feel broken, broken on both a physical and psychological level. There is so much uncertainty, fear and sadness that come with all of this. One of my endo patients, a staple in my RESOLVE group, is an incredible support to others, her warmth and smile light up the room.  She texted me the other day to say her latest IUI failed, and after a very long road, she only has one more left to try. She is losing faith. After cursing the universe for her, I told her that I have no idea how this is all going to come out in the end but that I have faith in her as a person, faith in her beautiful relationship with her partner, and faith that no matter what comes, she will be able to find the strength and tools to figure out her path. This process can make us lose ourselves. But the truth is each one of us is incredible individuals with gifts and strengths. Even though you may not feel it at times, you are more than your endo and you are more than your fertility capabilities.

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