Meet Claudia Wright! Endometriosis WA's first Ambassador
Claudia Wright is an endoWArrior, endometriosis advocate, social media blogger and mother to a beautiful little baby girl.
As a passionate endometriosis advocate, Claudia raises much-needed awareness of endometriosis via her social media platform @me_myself_and_endometriosis and has featured on Channel 9's Today Tonight as well as in several media articles.
Since 2019 Claudia has collaborated with Basin Jewellery to raise much-needed funds for the Western Australian endometriosis community. The collaboration donated $850.00 to Endometriosis Western Australia between 2020-21 through the sale of Basin Jewellery's endometriosis awareness necklace.
Endometriosis Western Australia is proud to introduce Claudia as its first ambassador!
Dr Katya Fleming, Kiera Collier, Claudia Wright, Monique Alva, Joanne McCormick.
Images courtesy of Vespa Photography
I’m Claudia. I’m 30 years old, engaged to my high school sweetheart, a first-time Mum to a beautiful baby girl & have lived in Perth my whole life.
I was diagnosed with endo after 16 years of debilitating symptoms that only got worse over time.
Unlike so many in our community, my story didn’t start with painful periods. I was only 11 & hadn’t even begun menstruating yet.
What sent me to the doctors was abdominal pain & bloating, ongoing diarrhoea, blood in my stools & rectal bleeding even without bowel movements. I was only in primary school & was terrified.
After extensive testing, I was diagnosed with Crohn’s Disease & started treatment. My family & I thought we had our answer.
A few months later my period arrived & it was painful from the get-go.
By the time I was 14 I was missing school frequently because of my “Crohn’s” & I remember instances of being hunched over, basically crawling out of class to the nurse’s office. I never made the connection, & neither did the doctors, that these “Crohn’s flares” were always around the time of my period. The severe rectal bleeding was always the focus.
At 15 my symptoms became unbearable & unmanageable. I missed 70% of school that year & used to “joke” that the hospital was my second home.
On top of the severe cramping, heavy & irregular periods, pelvic & abdominal pain, extreme bloating, fatigue, nausea, diarrhoea & bleeding from my bowels, I began experiencing severe migraines (every single day for 2 years) & upper body pain.
After undergoing every test imaginable, the new upper body symptoms were assigned the diagnosis of “nerve pain”, while my bottom half was still blamed on Crohn’s (despite never responding to IBD meds). At 16, I had a nerve stimulator placed; running from the base of my skull, all the way down my spine, to try & combat these “nerve issues”.
In my early twenties, my pain & GI symptoms were considerably worse, but all tests would come back clear. I continued presenting to the ER a few times a year, but still, no one ever linked my painful periods to any of this.
Eventually, at 26, after months of more negative testing & again being unresponsive to all meds, I was told my Crohn’s was probably a misdiagnosis, I was being discharged from the IBD clinic & given no other explanation as to why I was still experiencing these symptoms.
For months I was in the dark: gradually getting worse, having to quit my job in PR & feeling like I had been left to fend for myself. I was a shell of my former self.
Then, in February 2018, pain after penetrative sex became excruciating & I realised my issues could be gynaecological.
For the next few weeks I began researching frantically & thanks to those posting for Endo Awareness Month, I finally heard the word Endometriosis. I just knew this was what I had. I experienced every single symptom Google listed & then some (still having no idea that extra-pelvic endo existed).
Within a few weeks, just after my 27th bday, I had had an ultrasound, a referral to a “specialist” & was undergoing my first lap. Not knowing any better, the surgery was with an unqualified gyno who performed ablation.
They told me my disease was incredibly severe, but that they “got it all”, put in a Mirena & told me my best bet would be to get pregnant & breastfeed if I wanted to keep the endo at bay.
I didn’t know the difference between excision & ablation then. I didn’t know anything about endo at all. I just thought I had finally found the answers to my lifelong questions about my health & I would start recovering & everything would be fine.
I was wrong. So, so wrong.
Instead of getting better, I only got worse. Because I had deeply infiltrating disease & only ablation was used, everything inside me became aggravated. My pain was 10/10 at all times, I vomited 50+ times a day, lost 20+kg in a few months & bled constantly from my rectum. I was dependent on opioids & anti-nausea meds & truly thought I was going to die.
I called up the surgeon to tell them of my complaints & they literally told me to go to my GP. They were adamant they’d removed all my disease, so if I was still in pain, it had nothing to do with them.
Again, I began researching frantically. I joined support groups like Endometriosis WArriors, followed accounts on social media & started reaching out to others with the disease.
I learnt about excision & where to find the best specialists. I learnt from Endo WA’s Facebook group, Endometriosis Western Australia WArriors, that people in Perth had also travelled outside of this state for care. I learnt about extra-pelvic endo & that this disease may very well be affecting my GI tract & thoracic area (it would explain my bowel & upper body symptoms). And I learnt that my original surgeon had no business putting me under when they weren’t well versed in the disease at all.
By 3 months post-op, my entire life had been ravaged. I couldn’t shower myself, or dress myself & at times couldn’t even walk from my bed to the toilet. At this stage, I often wished the disease was cancerous, so I’d have a way to end my agony & misery. The other times, it was suicide that plagued my mind.
Michael & my family were devastated & I was desperate. That’s when I found reviews & info regarding The Center for Endometriosis Care. Despite what I knew would be large costs (flights, accommodation, the surgery itself, hospital bills etc.), I presented the idea of flying to Atlanta for surgery with the CEC to my family & seeing my rapidly deteriorating condition, all agreed we would do whatever it took to get me there.
By this stage, it had been 16 years of being shuffled from doctor to doctor, cut open by those who weren’t qualified & being dismissed time & time again. To say I was suffering from the psychological effects of medical trauma is an understatement. And so I sent in my records for review.
Within two weeks, I received my life-changing phone call. The CEC had reviewed my files, could see deep endo from pictures alone & most importantly: they believed me & were going to help me.
6 months exactly after that first op, my Mum & I were off to the US. That surgery found deep infiltrating endo all over my pelvis & especially on my bowel & abdominal wall (nearly up to my diaphragm). As well as the pelvic surgery, I also underwent a VATS (visually assisted thoracic surgery) to check for endo in my diaphragm & chest. Thankfully, no lesions were found in these areas.
The CEC expertly & radically excised all of the endo, (including the larger than 6mm deep lesions all over my bowel without me needing a resection)! They freed up my organs from adhesions, removed my appendix & checked my Fallopian tubes for functionality. They gave me a 5-10% chance of endo ever returning in my LIFETIME (ablation yields a 60-80% recurrence rate within MONTHS-YEARS!) & an 85% chance that I would be able to fall pregnant naturally (as they had prioritised my fertility as well as my life).
Recovery was tough; we stayed in Atlanta for a month altogether & it was nearly 6 months until I stopped feeling raw inside & was able to stop taking daily painkillers.
But, as my endo symptoms slowly started disappearing, it was still evident I was left with some other pain - including in my upper body which reminder: couldn’t be attributed to thoracic endo.
I was diagnosed with both Fibromyalgia (top pain) & Adenomyosis (bottom pain) in 2019 & still suffer from these conditions for most days out of every month.
In early 2020, at 18 months post-op, I finally felt completely recovered from excision. Now that I could attribute my pelvic pain to adenomyosis, it was very clear how different my flares were.
None of the pain I was experiencing I would consider endo-related & I hadn’t bled from my bowels a single time. I was eating healthily, exercising regularly, gaining back my social life & even slowly started working again on projects like The Endo Necklace so I could give back to the community & donate to organisations like Endometriosis WA who had helped me so much.
Now it was time to think about starting a family.
Probably (definitely) because of medical trauma, but also because my recent ultrasound showed some adhesions, Michael & I decided that before we started trying, one last surgery to free anything up & check my Fallopian tubes was needed for peace of mind.
I wanted to know for sure my body was in the best condition it could be to house a baby.
In Feb 2020, I underwent my third laparoscopy & it revealed adhesions that were binding my ovaries to my pelvic sidewalls & a couple of nodules of scar tissue from previous surgeries in my uterosacral ligaments.
What it didn’t find? ENDO!
No recurring endo AT ALL!
I cried tears of joy in that hospital bed. All the time, energy, money, pain, everything that it took to get me to America for surgery was worth it. Michael & I could really try to start our little family.
In April 2020, 8 weeks after that surgery, Michael & I fell pregnant with our now beautiful daughter, Aila.
The pregnancy wasn’t always easy with my chronic pain & a new diagnosis of hyperemesis gravidarum, but the moment I held that little girl in my arms, every single thing I had been through was worth it. She is the true light of my life.
I’m now 7 months postpartum & trying to navigate new motherhood as a chronically ill person, whilst still advocating for this debilitating disease.
That’s why I am truly honoured & so excited to be partnering with Endometriosis WA as their first-ever ambassador!
I am so passionate about spreading awareness for endometriosis, helping those with the disease & giving back to the people, groups and community that have helped me along my difficult journey.
Without the knowledge & information Endometriosis WA provided me about this disease, I wouldn’t be here today.
I am so thankful for their ongoing help & look forward to working together with them to help those suffering from this disease in Western Australia.
- Claudia
If you would like to be involved with Endometriosis Western Australia email your volunteer expression of interest to info@endometriosiswa.org.au, join our support group, donate or fundraise.