March is Endometriosis Awareness Month.
Endometriosis is defined by Endometriosis.org as “a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body”.
Endometriosis can have a devastating effect on the quality of life of sufferers of this condition due to the painful symptoms that the disease carries and the fact that it is the biggest cause of infertility in women.
Although this is a condition that affects 1 in 10 women, the average diagnosis can take up to 7 and a half years, and with this unacceptably long diagnosis time, the goal of Endometriosis Awareness is to raise awareness of the symptoms of Endometriosis with the goal being more women receiving diagnosis and treatment earlier.
Ash is one of my boudoir stylists who wanted to do a shoot to celebrate herself while living with this condition and spreading awareness about this debilitating disease.
Ash shares her experience on living with Endometriosis and her search for a diagnosis:
There I was, in my early 20’s in yet another doctors office.
The scene had become all too familiar.
‘Nothing seems to be wrong with you’.
Even though I had heard those exact words too many times to remember, they always left me feeling the same.
A deafening silence filled the room, until the sound of myself crying snapped me back to reality.
I make eye contact with the professional sitting before me, the look of defeat written all over my face.
‘What now?’ I ask, with more desperation lingering in my voice then ever.
Funnily enough, I always knew the answer.
‘We could try you on some birth control?’
Ah birth control. I had tried and tested so many options and all had failed me.
The doctor sitting before me would probably have known that if he had taken his time to actually read up on my history.
But I was used to this treatment by now.
I decline the offer and leave yet another appointment with no answers, no help and no hope.
Months later, I find myself sent home from work, again.
My boss tells me I can’t work the way I am.
I know it, she knows it. But what else can I do?
I find myself curled up on the couch, my eyes are sore and stinging from my tears. I’ve had enough, I need answers, I need help, I feel my sanity being pushed to it’s breaking point.
My computer in front of me, I become Dr Google, and start typing in my giant list of symptoms:
Chronic pelvic pain.
Painful and heavy periods
Painful bowel movements
Google results: ENDOMETRIOSIS
Endo-what? For the past 5 years in which I had actively been seeking help for my problems, this is the first time I had even heard of endometriosis! For 5 years, I had been told it was just a period, there is nothing wrong with me, there’s nothing they can do to help. And in minutes of searching online I had discovered this thing called endometriosis!
My eyes are glued to the screen as I absorb all the information I can. It feels as if I had written all of these symptoms myself. I’m in disbelief that I have potentially discovered the name for this awful disease that has been destroying my life. I call up a new doctors surgery and demand an appointment the very next day. I’m on a high, I believe I have finally been able to put a name to all of this.
Upon meeting this new doctor, I explain my history, my experience, and I don’t not suggest that I have endometriosis, I TELL him I have endometriosis. He just stares at me and shrugs his shoulders and comes back with a smart ‘it sounds like it’. But I am feeling too elated to care about his smug tone. When he suggested yet another ultrasound like the doctors before him, I finally get to use my own smug tone and reply to him- ‘endometriosis can only be officially diagnosed with laparoscopic surgery.’ I demanded a referral and set out to find myself a surgeon.
Unfortunately my new found source of hope was short lived. I had found a surgeon. He had agreed to a laparoscopic surgery. I had the surgery. Yes endometriosis was found, less then 24 hours later I was returned to theater with internal bleeding and a surgeon who refused to come back and fix his mess.
Over the next 7 years, This utter disregard for my mental and physical health became apart of my life. I had learnt to accept that. I had accepted the struggles with fertility. The struggles of facing daily activities. Being talked down to constantly. Invasive appointments. Being treated like a drug seeker when I would go to the emergency room. Being told it’s just a period. Having myself compared to others constantly in how I dealt with my issues. I would be lying if I said I didn’t experience times of great darkness.
Endometriosis stole from me. It had stolen my life. Robbed me of the mother I wanted to be. Robbed me of the wife my husband deserved. There were times I had withdrawn so deep that I didn’t know if I would ever come back, or even if I wanted to. Thoughts of Suicide were frequent, and always there lingering in the back of my mind like a filthy secret I desperately tried to hide.
But this is not the end of my story. I decided to stay and fight, not only for myself and my family. But for the other women out there, who just like me, were turned away, not taken seriously and who felt like they were fighting a losing battle. I wanted to become an advocate for women’s health, to spread awareness about endometriosis. I am determined to love my body, despite all it has put me through, because it is mine. I am not a sufferer, I am a survivor.
In 2018 I teamed up with an incredible boudoir photographer, my dear friend Renee Lee, and I took my power back. I showed myself that I am still beautiful, sexy, powerful and above all, strong. I will continue to love myself, flaws and all. Endometriosis has no cure. And I will continue to spread awareness to all women who are doing their best to survive such a cruel illness. You are more then just your diagnosis. You are a woman, and you are perfect. Trust yourself. Painful periods aren’t normal. Fight to be heard and to normalise women’s health! Together we can strive to find a cure.
The second part of Ash’s boudoir shoot will be shared soon!
For more information about Endometriosis, visit Endometriosis Australia