Amanda’s Endometriosis Story: Toronto Endomarch 2016

Amanda’s Endometriosis Story: Toronto Endomarch 2016
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For a lot of women with endometriosis, they’ve had to deal with something that I like to the call the three misses – misdiagnosed, misunderstood, and missed moments. I’ve had to deal with these too. My name is Amanda Gullace and I am here to share my story with you.

At First, I Didn’t Understand My Symptoms

I vividly remember the day I got my period. My stomach hurt so I went to the bathroom, which was followed by a loud scream for my mom. I ran downstairs and my mom smiled at me and hugged me and told me “Congratulations, you’ve become a woman.”  She told my Dad, and then she proceeded to call family all over to tell them the great news. All I thought to myself was “What the heck is all the celebrating about? My stomach is killing me and how can someone bleed this much and not die?” If I only knew then what I knew now.

My cycles were always heavy, 10 days long, terrible cramps, nausea, the whole shebang. I went to my family doctor and was told “Every girl has to deal with this; you have a low pain tolerance.”  And that I am a drama queen. She put me on birth control and said that this would help me, and when one didn’t work we would try another and another and another.  I did not understand symptoms of what I would later learn about myself.

One day at work, my pain was so bad I had to leave; I didn’t want to go to the hospital, so I went to the walk-in clinic. The doctor sent me for an ultrasound and as she was poking around at my abdomen she said “Have you heard about endometriosis?” I was like “No, what is that?” She immediately grabbed a referral form and said “I am sending you to see this specialist. He knows about it and will be able to help you.” I was so grateful. She listened to me. Hope was now present and I was not crazy.

My Endometriosis Diagnosis

The specialist appointment came around and he sat down and busted out this picture of a uterus with red dots all over it. He explained what it was and informed me that surgery was the only way to diagnose, so I booked it.  Surgery was August 3rd 2011, and it was confirmed- I had endometriosis in addition to 2 paratubal cysts in my fallopian tubes. The doctor said I was only stage 2 out of 4 and they had gotten everything. He prescribed me another birth control pill to take and said I would feel much better. And I did, I had a great year, things were manageable and I felt like I was finally back to being me.

Fall 2012 rolled around and I started feeling things that were way too familiar. I went back to my family doctor and she said “You had the surgery. It fixed it. You just have a low pain tolerance and are dramatic.” I had enough – I took my files and I found a new family doctor, who is so wonderful. She referred me to an OB in town because she was young and aware of the disease and she thought this would be a good fit.

Effective Treatment Was Hard to Find

Well, that appointment was a bust – I was rushed, she skimmed through a list of 11 things – 10 being hormonal treatments with terrible side effects and the 11th thing being surgery.  She felt a second surgery wasn’t necessary. I left that appointment with a handful of pamphlets of different medications and eyes full of tears. I knew that masking this with hormones wasn’t right for my body – I knew I needed the surgery.

I had heard of a great OB about an hour west of me, so I asked my family doctor and she sent the referral to the specialist. I also asked for an MRI because I knew something else was up.  It was a one year wait to see the doctor, never mind the long wait for the surgery. Most Canadian women with endometriosis know what that is like.

I stopped taking my birth control because it wasn’t working and it was making me physically sick. I probably have tried 8 different types and I knew how sensitive my body was to synthetic hormones. When I stopped taking it that took a huge toll on my body. My hormones were out of whack! The disease had taken control of my mind and body. I did not know who I was. I can honestly say that at that point I went into a depression. I did my best to hide my depression from some friends who didn’t understand what was going on. I missed a lot of events. I did not want to get out of bed because I was in so much pain and so fatigued, and even showering sucked the life out of me. I was told comments like – “You don’t know pain until you have a baby” and “You’re lazy – it’s all in your head.” I can go on and on but I’m confident you’ve all heard the same things.

My pain would get so bad I had multiple trips to the ER. Blood work  and ultrasounds always came back normal. No matter where I went it was the constant theme was no one was able to take the pain away. My appointment finally came around and my MRI results showed that I also have adenomyosis in conjunction with endo – that would explain the heavy dragging sensation, leg pain and numbness and a whole list of other symptoms. She agreed with me that a second surgery would help followed by the insertion of the IUD. I was hesitant because of what I’ve heard but I was confident and stayed positive and gave it a chance.

Finally, Feeling Better

Surgery went well – she cauterized what she saw, she confirmed the adenomyosis and successfully inserted the IUD. Recovery was harder than the first go around, but after 6 months things slowly started to fall into place and slowly get better. I had to give the IUD time to work and my body proper time to fully recover. I’m not talking 4 to 6 weeks: I’m talking 4 to 6 months, if not longer. The pain was still there but it was not to the extent of what it was prior to surgery. At that point in time I realized that this was going to be a part of my life and the only thing I could do was accept it, learn more and empower myself, and educate myself because knowledge is power.

I was on Instagram one day and I decided to search endometriosis and I was surprised there were posts about it. I followed a bunch of people and made connections and felt confident in raising awareness about it myself. I saw there was a worldwide endo march and I knew I had to be there. I contacted a girl name Meredith and we instantly clicked. She was happy, positive, outgoing, and she provided me with life style changes to help with managing my symptoms. I also met a girl named Rachel. Immediately the connection was strong – her energy was beautiful. She provided me with information about Reiki, meditation and yoga, and how to incorporate that in my life. This was extremely helpful. These two women inspired me, brought out that person I knew I was. I was not this disease. I had endo. Endo doesn’t have me.

My First Endomarch

I was so eager to learn more and meet all these women I’d connected with online. So I booked my flight to Washington DC for the first Endomarch. I was 25 years old and it was my first time flying alone – of course I was anxious and worried about what if I became sick or didn’t feel good. But then I thought to myself “Look at how far I’ve come. I go to work every day even when I can barely move and I push through – I handle each day like a boss. There is no reason why I can’t do this.”

And I am so incredibly proud of myself and thankful that I did. The endo march was the most incredible experience of my life. I will never forget walking to the hotel banquet area and seeing a sea of yellow, hundreds of people from all over America – I just burst into tears and women who I had never met came up to me and just hugged me because they knew.  Every single person in that room knew.  I never felt so safe before in my life. I met a girl down there who talked to a girl in Canada – through her I found out about Canadian endometriosis advocate Angela Wice. Through her I found out about the Toronto endometriosis support group. And that group has inspired me more. These women are incredible and I enjoy going to the meetings no matter how I’m feeling because I always leave feeling so much better and full of good energy.

Living Well With Endometriosis

This journey has been a roller coaster, but now I can say I am in a good place. I have accepted that I have endometriosis and adenomyosis but they don’t have me.

I have accepted and acknowledged, and I have educated myself and others to created awareness.  I shifted my focus to the light and chose happiness. I know it sounds crazy – how can I be happy when I am in pain? But you can do things in your day that make you happy. On days where I don’t feel good and I’m on my way to work I drive with a smile on my face and I pump my favourite song. I look crazy smiling all by myself but I don’t care – that smile on my face for 15 seconds makes a world of a difference. It helps me get my mind right and put my game face on to take on the day.

Jan Silverman, the facilitator of the support group meetings had said something that has always stuck with me. There is always something good that happens every day. So even when you have the worst day ever , take a moment, think and reflect about one good thing that happened. It could be as simple as the cashier at the store was so friendly and nice. That was a moment of good energy and probably a moment where you had a smile on your face, or at least wanted to.

Endometriosis is something that there may not be a cure for in my lifetime but it is my goal to spread awareness and enable people to live the lives that we’ve been so blessed with. Some days I can’t feel my leg – but I’m grateful I still have my limbs and that I can walk. I’m grateful for the people in my life who have supported me on this journey and who are standing here today. And I’m grateful for endometriosis because without it, I wouldn’t have met the most incredible strong women who will be in my life forever. You all keep me going.

There is a song called Freedom on Beyonce’s new album. There is audio played at the end of the track of her grandmother on her 90th birthday saying “I had my ups and downs, but I always found the inner strength to pull myself up. I was served lemons but I made lemonade.” Ironically lemons are yellow, so let’s take our lemons and make some sweet lemonade.

We need to stand together, create awareness, and educate people because each one of us is making a difference in the lives of others, but it starts with yourself. You have to take care of you first before you can help others.

 

Written by Amanda Gullace. When endometriosis doesn’t cause her to be in debilitating pain, she loves to be outdoors, bake delicious gluten free vegan treats and spend time with friends and family. She is on a mission everyday to create more awareness of this awful disease.