I cheated a little with my interview. In my defense, I was sick. I had a really bad cold and couldn’t really speak to long without coughing. So I had Casey answer the questions via email. I figure I’m excused since we had such a nice lengthy conversation the week before when she interviewed me for her blog. It’s gift to meet all of my endosisters. I cannot wait for the march in DC.
I Interviewed Casey Berna, LMSW Endometriosis and Infertility Patient Counselor and Advocate.
Casey was diagnosed in her 20s when she and her husband were trying to conceive. She says, “We went to a reproductive endocrinologist, who after ruling everything else out, thought I may have endometriosis. He did an exploratory laparoscopy and found “Mild endometriosis”. My endometriosis was much more pervasive by the next surgery.”
What is your worst symptom? “Ugh. Currently I have bad rib pain and when I had my last period it was very painful for me to breathe deeply.”
What is the worst it’s done to you physically/ emotionally?
“Endometriosis grew through my bladder and made a hole in it. That was pretty bad. I believe it also caused my daughter to be born 6 weeks early. She thank goodness was healthy after a stay in the NICU. But her birth was very traumatic and we were very worried about her. Living with a chronic illness like endometriosis is very difficult. I am aware of how the disease holds me back and that can make me feel sad at times.”
What are you doing for pain relief?
“Right now I use my heating pad and some Tylenol. I just had an excision surgery in October, which brought me a lot of relief. I cannot take serious pain meds and I took so much Motrin I gave myself the start of an ulcer right before my last surgery.”
Who’s going with you to the march?
“My mom is going with me. She recently told me she had horrible periods when she was young. She used to pass out from the pain. She also suffered from many miscarriages. I am going with my Aunt Donna who is a recent uterine cancer survivor. She also told me she had painful periods and often leg and back pain with her period. I am going with my mom’s best friend from childhood. She was diagnosed with endometriosis 30 years ago and actually lost one of her kidneys due to the disease. She is shocked and appalled how little has changed in terms of treatment.”
Why do you want to attend the Million Women March in DC?
“I want to attend because I listen to many patients talk about their stories and they are so similar to my own. It took many years to get diagnosed and by the time they did, their whole life and health had been impacted forever.
It is time for this disease to be taken seriously. It is time for the medical community as a whole to understand the disease and its’ implications. It is time for better diagnostic tools and treatments to be available for patients and it is time to start moving in the direction of a cure.” To this I say, Amen!!!
What do you hope happens as a result of the march?
“I hope endometriosis is no longer an invisible disease and the world gains a better understanding of what patients go through on a daily basis.”
Do you think we can make a difference?
“Yes. I have to believe that we can make a difference or else I will just crawl into bed, under the covers and never get out. There has to be hope. We are the hope.”
Casey did have her miracle daughter through IUI. She’s had 34 embryos tested with PGD and all were genetically bad. She’s also had 4 miscarriages as well. She has something called translocation. You can read more about it here. She’s an inspiration to many and I enjoyed talking with her. I’m looking forward to meeting her in 10 days!