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Me, myself and endometriosis

May 5, 2020

 

My name’s Claudia. I’m 29 from Perth, Western Australia and run the Instagram account @me_myself_and_endometriosis. I’ve been diagnosed with Endometriosis, Adenomyosis and Fibromyalgia. To put it bluntly, Endo ravaged my life.

 

My chronic health issues showed up a few months before my period did. I was 11 and the symptoms that first sent me to the doctors were intense abdominal pain, extreme bloating, nausea, diarrhoea, rectal bleeding and losing blood with bowel movements. 

 

 

After months of testing, I was diagnosed with Crohn’s Disease. My period showed up a little while after the diagnosis, accompanied by severe cramping, heavy and irregular bleeding and pelvic pain.

 

Despite being on continuous medication to control the Crohn’s, my symptoms only progressed and at age 15, they truly reared their ugly heads. On top of what I previously mentioned, I then began experiencing severe chronic migraines, frequent UTIs and upper body pain including in my URQ, chest, armpit, neck and upper back. These pains were joined by extreme fatigue, shortness of breath and feeling faint. 

 

Unfortunately for me, having the Crohn’s diagnosis seemed to stop medical professionals from delving deeper into my case and so, for the next 10 years, I kept presenting as if in a Crohn’s flare but all testing, including colonoscopy, would come back clear.

 

Eventually in 2017 I was told I may never have had the disease to begin with and had been misdiagnosed for the majority of my life. The doctors did not give me any other options as to why I would present with these symptoms if I did not have Crohn’s, they just sent me on my way. 

 

So off I went, trying to live life as normal. 

 

At the beginning of 2018, my health was rapidly declining to a point I could no longer ignore. I knew I had received the news that I may be dealing with a misdiagnosis, so I started to research. That’s when I found out about Endometriosis and essentially diagnosed myself.

I was finally referred to a gynaecologist and underwent my first laparoscopy which revealed severe, deep endometriosis.  But not knowing what I know now, I had ablation surgery performed instead of excision and it led me to become so sick I thought I may die.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I was 20kg down, vomiting 20+ times a day, in immense pain, bleeding from my rectum almost continuously, losing control of my bladder, unable to shower or dress myself, or to even walk from my bed to the couch. I was dependent on opioids, depressed, anxious, suicidal and terrified of what my future would hold. Every single day was unfathomable agony.

 

I began joining support group like Endometriosis Perth Sisterhood of Support and Nancy’s Nook, chatting to other women with the disease and finding out everything there is to know. That’s when I discovered the Centre for Endometriosis Care in Atlanta. With concerns of the disease having travelled to my chest cavity, full of desperation, fearing for my life, and no trust left in the health system at home, I decided travelling to America for life changing surgery was my answer. I sent in my records for review, and after speaking with the team at length, it was all arranged.

 

In October 2018 I flew to the CEC to have expert excision surgery & VATS. Endo was found all over my pelvis & abdomen, especially my bowel.

 

I am now 18 months post-op & after another surgery to check for adhesions etc, am happy to say I am still endo free (Adenomyosis and Fibromyalgia are two separate beasts I am still trying to manage)!

 

Not only has excision changed my life physically, but mentally, emotionally, spiritually and even sexually. It did this by giving me hope. Each day I feel better, is a glimpse into a future I never thought possible before.

 

Endometriosis should not be the path of multiple, unsuccessful surgeries and misdiagnoses. 

I’m now using my story to help educate, advocate and raise awareness for this debilitating and underrepresented disease. It takes, on average, 7 to 12 years to diagnose. This is too long! I don’t want to see other young women waste their whole adolescence on misdiagnosis.

With any chronic illness, there are times when you think you will never feel better again, that there is nothing you can do & no one who understands you. I’m here to remind you that there is hope & help out there.

 

x x x

 

- Claudia
 

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