PRESS RELEASE: “All I want for Christmas is for my bowel not to be stuck to my uterus”! Endometriosis warrior gets her Christmas wish by having life changing robotic surgery.
“All I want for Christmas is for my bowel not to be stuck to my uterus”!
Endometriosis warrior gets her Christmas wish by having life changing robotic surgery.
It was three and half years ago since I was last on a plane. The plane that I took apprehensively to return back to Melbourne after living in Italy for nearly eight years. At the time I said goodbye to everyone in Italy thinking that I would quickly return after resolving my medical issues in Australia. At the time I could never have anticipated what was to lay ahead of me.
Since returning to Melbourne, the last three and half years have been nothing more than years gone by, filled with intoxicating pain.
In 2017 I had my fourth surgery for stage 4 endometriosis in which my ovary, tube and obturator nerve were removed. During this lengthy surgery they encountered several complications and in effect I have not been able to recover ever since. I was left with permanent nerve damage which caused partial paralysis to my left leg, I generally walk with a limp. To this day, my leg occasionally collapses from underneath me. I get leg twitches, cramps and sometimes it feels like it is actually on fire. These seem almost like the more ‘joyous’ symptoms out of the bad bunch.
Endometriosis is a non curable disease which currently affect 1 in 10 women in Australia. It is a disorder in which the tissue that normally lines the uterus grows outside of that.
A few days after the surgery, I started experiencing stabbing and debilitating pain in my left pelvis, where the ovary once was. I knew that something was wrong, I have never experienced any such pain after my other surgeries. It is a pain that I have constantly lived with for over three years, there is no break or relief. The pain literally stops me in my tracks and bowls me over. Unimaginable pain. Pain that stabs me in my pelvis, radiates to my spine, sciatic nerve, and down my leg. It is constant, relentless, agonising and exhausting.
My full time job during these years, has been to find answers, a cure, some relief. I have tried consulting with every specialist, have experimented with various medications, and also tried a holistic and dietary approach. I have spoken with surgeons, doctors, had MRI’s, CT scans, countless invasive internal ultrasounds, physiotherapy, osteopath, psychologist, chronic pain management specialist, pelvic floor physiotherapy, naturopath, acupuncture, kinesiology, maya care, wurn technique, pilates and yoga. Always to be told “I’m so sorry, it’s so complicated, we can’t help you, unfortunately you have to live with the pain”.
As a person that has lived with endometriosis for 31 years, I am not stranger to pain. My personal experience is that every single month without fail, I experience severe bloating, pelvic contractions, cramps, vomiting, diarrhea, brain fog, sweats, back pain and dizziness. Woman who have have given birth and have endometriosis draw similarities between the pain. However, as a 41 year old woman, I have never had the privilege to be able to make the comparison for myself.
However having your uterus stuck to your bowel is taking pain to the next level. Although the original fundamental problem is endometriosis, the pain that I am now experience is a consequence of surgery.
Over 2 years ago I was finally diagnosed with the root problem. My bowel is attached to my uterus and pelvic bone. Literally this whole area is stuck together like glue. ‘Stuck’ is the perfect layman’s term. The whole mid half of my body is physically stuck together with pelvic adhesions crushing vital organs and nerves. Due to the complex nature of the issue, I have not been able to find a qualified person to help. All involved that have been educated on my diagnosis, have agreed that surgery is the only cure. However every surgeon has graciously admitted that they are not qualified and that there are too many risks involved.
During these years I have been fighting for myself. I have refused to accept that living with this pain is my life sentence. As a single woman, I have forced myself to get out of bed every single day and actively searched for answers. There have been some days when I have wanted to stay in bed, but I have not found any comfort there. If it was up to our system, I would indeed be rotting in bed and would be heavily medicated.
I have not accepted this. I have not taken no for answer, not once. I have gone to war for myself every single day knowing that someone out there had to have a solution.
Earlier this year, I was referred to a surgeon in France who specialises in my very specific case. COVID hit and we could no longer travel. However, he referred me to a surgeon in Sydney who trained with him in robotic surgery.
After months of diligently assessing my case, outweighing the pros and cons, he decided that surgery was the right decision.
I was scheduled for surgery mid year, but then the border closed between Victoria and NSW. I have spent these months patiently waiting for the boarder to open, knowing that I have the potential ability to be pain free.
The last three and a half years for me have felt like I have been in ‘lockdown’. Trapped in a body riddled with pain, surviving and not living. I had a warm up to the strict lockdown Victorian rules, as my life had already drastically changed. Participating in a fraction of what I used to be able to accomplish. Not being able to do or go where I wanted, a loss of social life and loss of income. The main motivation behind selling my house was to fund the inability to be able to work, and pay for all of the treatments which are exorbitantly costly. While there is no denying that 2020 has been a terrible year for all, personally it has merged with the previous years for me.
As we emerge from lockdown, borders are opening, people are flying again and everyone is excited to embrace the normalities of life. I am ecstatic for a completely different reason. For someone that has flown hundreds of times and visited over 50 countries, you would think that travelling would be one of the things that I miss most, but it’s not. Health is the only thing that matters, everything else follows after that.
Yes, I am excited about getting on a plane again, but this time it is to meet my surgeon and his robot in Sydney.
