Anastasia Antalek Testimony
Proponent HB 142
My first gynecologist, Dr. Sejal Pederson, was (and still is) wonderful and I have the upmost respect for
her that she was not afraid to say she didn't feel comfortable doing another surgery after she officially
diagnosed me at age 15. I had been suffering with extremely painful periods that would cause me to
miss school since I was 11 but started seeing her at 13 when I started birth control. My mom, who has
also been my biggest advocate, had endometriosis so we suspected that I did too, since it can be
hereditary. At the time, she was with a different practice then she is now, so she referred me to another
doctor whom she felt could handle my disease better with my age. It took a few doctors and second and
third opinions, another laparoscopy, and multiple failed treatments of hormone drugs, like Lupron that
has terrible side effects and did not stop the growth of the endometriosis, until I ended up back where I
started with the owner of The Reserve.
By the time I was in college, I was having a laparoscopy nearly every semester with a surgical arm
instrument called the Da Vinci Robot. I was so tired of being in pain that I believed my doctor,
exhausting all treatments, that surgery was the only option, and the Da Vinci Robot was supposed to be
less invasive with a shorter recovery time. My other option was to find a man and become pregnant,
which was not a solution for a 20 year old trying to achieve her dreams. Ironically, I was also told that
my chances of getting pregnant after 25, would decrease significantly, so there was always a "biological
clock".
One thing that always makes me smile is that I made it through college in four and half years. I worked
hard, in school and at my part-time job, so that I could have that extra bit of fun when I was not hurting
or sick. Even some grades I had to sacrifice because there were days I just couldn't get to class with the
pain, but that also meant I didn't hang out with my sorority sisters or boyfriend either. It is that time and
memories lost that I miss the most. In December 2010, I graduated from Kent State University, with a BA
in Business Administration, majoring in marketing. My dream degree was being an interior designer and
I had to give up my sophomore year because of my health and the intense course load. Two days after
graduation, I had my 11th endometriosis surgery and again that May. I was not getting better, and the
truth was, I was getting worse. After my doctor suggested a risky procedure called a presacral
neurectomy (PSN), where they cut the nerves at the bottom of your spine that could stop the pain
signals from hurting of menstrual cramps. He seemed way to eager to try this procedure on me that only
has a 50% chance of working and that he only had done handful of them. I thank God every day that I
did not let him do that surgery and I started seeking a specialist that would help me, even though I knew
there was no cure for endometriosis.
Now four years ago, there was not the same information about endometriosis that there is today, and
all of the big hospitals and regular gynecology offices practiced the same hormonal therapy approaches
and surgical techniques of ablation, lasers, dilation & curettage (D&C), and a partial or full hysterectomy.
A friend in North Carolina told me about Dr. Sinervo at the Center for Endometriosis Care in Atlanta,
Georgia, where they did a different kind of surgical technique that significantly reduces the
endometriosis from returning right away. The procedure was skilled excision and they remove the
endometriosis at the root, instead of burning or cutting off only the top few layers, and less than 100
specialists out of over 55,000 gynecologists in the United States perform this. I submitted the paper
work, and Dr. Sinervo called saying he believed he could help me with excision and a PSN (which he had
done thousands of).
I had to get my postoperative reports from the hospital where my surgeries were because my doctor
would not release my records from his surgeries to the CEC or myself. I wish more than anything I could
read his notes of my previous surgeries, especially that May and December, because I lost both fallopian
tubes in August 2011. Dr. Sinervo had to leave me on the operating table to go out and ask my parents if
he could remove both of my fallopian tubes. Both of my fallopian tubes were so badly diseased
underneath that they could not be saved and that was the reason I was not getting any better. I was 700
miles from home and just turned 23 and I thought my life was over and went into a deep depression. I
just went through a horrible break-up to a person I thought I was going to someday marry and I was
being told the only way I can ever have my own child is to have In Vitro Fertilization (IVF). I am thankful
that I did not lose everything and hope someday I will find someone that will share my dream of kids
with even if it may not be God's original way. Even though the emotional pain is not as strong as that
day in Atlanta I still feel that loss that was taken away from me and wonder if maybe they could have
been saved in previous surgeries.
If I knew now, what I knew four years about endometriosis, I would never have let my original doctor do
all of those surgeries. I will be 27 this June and I am not living life the way I am should be because of this
disease. Even though, my 13th endometriosis surgery with Dr. Sinervo is so far successful and my
endometriosis has not returned, until a few months ago I thought it did. Thankfully, I found an
endometriosis excision specialist at the Cleveland Clinic, who has seen this type of pain that mimics
endometriosis in other women that have had multiple surgeries like me. I told him I just wanted to live
my life again and in a very honest conversation, he told me I was never really living a life, not with
having that many surgeries and recoveries. As much as I did not want to believe it, he was right. I now
live with severe nerve pain, an NSAID allergy that destroyed my bladder lining and weakened my
muscular-skeletal lining, and other chronic illnesses that all stemmed from the medicines, treatments,
and ultimately "those" surgeries. He asked me why I let this doctor do so many robotic arm surgeries on
me, and it is because that is what I thought my only option was if I wanted to be pain-free. Even if it was
for a tiny bit of time, I did not want to be sick and in pain. I know I signed a release for those surgeries,
but I was not aware that I might always live with pain that is ten times worse than the endometriosis
pain ever was years down the road. Due to the daily amount of pain I am, I cannot hold a job, drive a
car, hang out with my friends, have a relationship, and live at home with my parents. As fortunate and
blessed as I am to have my parents, this not the life I had envisioned for myself.
Even through all this pain, I am still advocating for women all over Ohio and the world, through our Ohio
support group ‘Color Ohio Yellow for Endometriosis’ and the Worldwide Endomarch. I am the CoPrecinct Manager of Ohio and work towards raising awareness and fighting for them. We have an
international team of dedicated activists who are united and organized and working now to educate the
world and make a difference and we hope you will join us in the fight for medical justice, so that at least
180 million women and girls no longer have to suffer in the shadows of silence. Endometriosis is one the
cruelest diseases on Earth because it can strike women and girls in the prime of their lives with the most
unspeakable, unbearable, mind-blowing pain; pain on par with child birth labor and even some cancers.
All while also potentially causing irreversible damage to multiple organs and potentially robbing women
of life-long dreams of fertility. There is barely any sympathy from society, family/friends or medical
professionals, all while being belittled and ridiculed as weak or mentally unstable, accused of faking it or
imagining it all or, worse, being accused of being a liar and drug seeker. I will not give up on these
women and I hope Ohio will not either and help me raise awareness by making March Endometriosis
Awareness Month. Our goal for next year is to have an Ohio Endomarch along with participating in the
Worldwide Endomarch goals. These goals consist of nationwide endometriosis education in school
programs and Advocacy Week, which will occur mainly in Washington, DC., but also hopefully in state
capitals the week before ‘World Endometriosis Day.’ World Endometriosis Day is always the last
Saturday in March, making next year’s on Saturday, March 26, 2016.
I do not want anyone to ever experience what has happened to me and sadly, I know there are other
women that have, even by the same doctor that I saw and doctors all across Ohio and the USA.
Endometriosis is life-changing disease that if not treated properly can impact your life forever even after
they finally find and see a skilled excision endometriosis specialist. I want there to be hope for women,
girls, and future generations that maybe one day there will be a cure or at least better healthcare from
the beginning.
I want to thank Representative Hagan and her aid Victoria for being the only state official to take the
time and listen to our cause. This means the world to us, we are forever grateful to them after
contacting every state official we could find, and I hope we can all Color Ohio Yellow.
Anastasia (Annie) Antalek