Endometriosis Diagnosis,Chronic Pain? What a drain

What is Endometriosis 

Hi,

My name is Alexandria, and I suffer from Endometriosis, Chronic Pain, a flipped Uterus, Endometrioma’s, Ovarian cysts, Anxiety and Depression. I’ve been on and off bed rest for the past 2 years. Everything in me is screaming to stop writing my story. It is terrifying being so vulnerable and comes with a huge jab to my pride. But I know it’s time for me to stop hiding, stop being scared of rejection and time for me to raise my voice, share my story and ask for the support I truly need.

So… here goes nothing…

In September, 2019 I started to experience a lot of pain in my pelvic area. The pain got so bad I ended up in the emergency room. After multiple visits and painful, intrusive and exhausting pelvic exams and ultrasounds- internal and external- the doctors determined I have and have had multiple ovarian cysts. I had never been on birth control so this was the first step doctors took to slow the formation of cysts.

With pain meds and birth control in hand, I was sent on my way. Within days I was back at the hospital. Still excruciating pain with no answer, I was losing hope. I did multiple more trips to see multiple doctors where they send me off stating “good luck”. Finally, I was referred to see a gynecologist, but the earliest appointment available was Jan 2020-3 months away.

So, I waited and continued to work. The pain was getting worse by the day. I would cry in my office from the pain. I would hide my face, the pain and stress… hoping to appear “normal.” It was catching up to me and I ended up calling in sick to work to take countless trips to the hospital and sitting in the emergency room for 12+ hours at a time. So many more painful, terrifying tests. Ultrasounds lasting over an hour and leaving me in more pain than before. With tears running down my cheeks as the doctors pushed and pried at my pelvis I wanted to stop so bad. But I wanted answers more.

“Block out the pain” became my motto. These tests just sent me home with more pain and a new Opioid pill. Thus creating a fear of the doctors, hospital and drug dependency making it more terrifying to reach out for help.   I was finally put on an antidepressant medication while I was contemplating suicide, seeing no hope in my future. I was caught in a never-ending cycle of pain, depression, and anxiety losing my career because of my health. Struggling more than I ever had in every aspect of my life. My relationships and friendships were ending because I had no hope, no answers, no understanding only pain, fear, and my bed… he doctors handing me the weapon to end it all. #opiodcrisis
 
January 2020 came. I started to explain my symptoms to the gynecologist and she immediately diagnosed me with Endometriosis. Completing an exam and confirming her diagnosis. Putting me on a specific medication to manage the Endometriosis symptoms. Previously I was  taking a similar medication that was a 2mg/daily to 200mg/daily. This pill was prescribed with caution though as the long term effects are not known. Typically they only prescribe the pill for 6 months, but I have been taking it for 14 months now.

The meds did immediately give some pain relief, but I had to stop taking birth control as this was a hormone medication. Stuck in a catch 22, the gyno then recommended an IUD as this could also help with pain management and would likely slow my cycle and hopefully slow the production of endometriosis. I was scheduled for an appointment to get an IUD in March 2020.
 
March 2020 a month we all know well. The world shut down. Apparently, my doctors had tried to cancel the appointment, but because of my anxiety I couldn’t answer the call and coupled with depression, I didn’t check the voicemail. On March 22 my mom drove 3 hours to take me to my appointment so I didn’t have to go alone… again to the doctors.

When we arrived, I was told that all “non-emergency” appointments were cancelled until further notice. I immediately burst into tears and told the nurse, “It may not seem like an emergency on paper, but to me this is a life or death.” The nurse looked me in my eyes and could see the desperation. The helplessness. The fear. I was told to wait and they saw me. Heather was my nurse, more like my angel, told me it was going to hurt but to do everything I could to bear the pain because the alternative was to surgically implant the device.
 
The gynecologist came in and tried to insert the IUD. She was pulling, prying, trying to make the path for the IUD. The pain was unbearable, but I pressed on. I slapped my hands over my mouth and was screaming on the inside. Tears were free falling but nothing could stop me. I needed help and I needed relief. I need the hope. Finally, the doctor stopped, told me it cannot be inserted this way. My uterus is flipped completely backwards on a 90 degree angle.
 
The only option was to surgically implant the IUD. But due to covid, the appointment could not be booked until October 2020. Seven more months filled with pain, hiding my condition, still working, still stressing, not allowing myself to slow down and accept my new reality. Finally October came. I was able to get the IUD surgically implanted and hoped to get back to “normal.” I pushed myself, like I always do. Back to work 3 days after surgery.
 
By January 2021 my stress was at an all time high and my endometriosis flared up creating pain that made even the smallest of tasks impossible. I couldn’t move, couldn’t work, couldn’t talk, couldn’t breathe… the world closing in around me. I found myself at work more than once laying on my office floor, lights off, tears flowing, crying out for help but I was alone. I knew I couldn’t continue like this. I saw no end, no help, no options. Just fear, failure, disappointment- not only to myself and my family, but to my employees, my boss, my reputation, my pride…
 
Feb 4th. My birthday. A day I love. My day. For the last two years I haven’t been able to celebrate because of the pain. This year, 2021, I received “the call.” I have been accepted into the chronic pain centre and they wanted to book the first consultation! I was so relieved I cried. The doctors believe my pain. It’s real.
 
On March 17, 2021 I had my first zoom meeting with the Chronic Pain Centre. They talked about the treatment plan they have for me. Physio therapy, psychiatrists, trying new medications, dieticians, pinching nerves, pain injections and so much more that I have yet to experience.  I have been on medical leave since March 2021 to focus on healing my health – both physical and mental. I cannot go on not honouring what my body and my mind are going through. I start my treatment in person with the centre June 2021. For the first time I feel Hope.
  
I need to heal and to do that I need your help. I need support. If you are able to donate- anything will help. Medications and treatment are expensive. If you cannot donate monetarily, please share my story and at the very least, just reach out to say hi. I appreciate the love. I thank you with my whole heart.
 
I want to heal and bring awareness to unseen conditions we suffer with. You are not alone.