ENDOMETRIOSIS
(END-OH-ME-TREE-OH-SIS)
This week's blog post is something I am intimately familiar with, having endured six laparoscopies since been diagnosed with endometriosis at age 19, after many years of horrific, life-stopping periods. For my entire reproductive life, I have had a loud voice in the back of my head, challenging my ability to conceive, carry and birth a child. As someone destined and longing to be a mother, this is a harsh reality to face. Specialist after specialist - scan after scan - my dreams of motherhood seemed increasingly less likely.
Just getting through a period was hard enough. I would have to take time off school, to curl in a ball and ride out wave after wave of crippling pain. I missed many important dates, avoided making plans around Aunt Flo and couldn't keep up a full-time job. When I landed a dream job as a State Manager for a cosmetics company, I tried to persevere through the pain, eating pills like they were breath mints, driving long distances on strong painkillers and working from my laptop in the ED ward in hospital.
The pivotal moment that shattered my future with the greatest role I had ever acquired, came when I was hit with a pain so sharp, so severe that it dropped me to the floor in the middle of the women's department in Myer. Queue a tear-filled call to my colleague who then sent my superiors out with a wheelchair to get me to my car, to be driven home. It was this moment, this cruel, pain-stricken moment that I felt endometriosis had won. I was single, in a high-stress job, with a mortgage and a failing reproductive system. I couldn't maintain a job, let alone a relationship - I thought I would never be a mother. But happily, I was wrong. Endo didn't win.
I researched, questioned, persevered and along with an amazingly supportive partner and family, a killer healthcare team and some fierce determination, I became a mother to my darling Poppy Jean. Facing a diagnosis on your own can be daunting and heartbreaking, and leave you wanting answers, with no idea where to get them.
The truth is, just like periods, endometriosis is a topic that is often considered taboo, leaving many women to suffer in silence. Those who muster up the courage to speak up are often met with ill-informed, offensive and incorrect advice and opinions - from friends, strangers and sadly even some medical professionals. The lack of awareness and misunderstanding of such a prominent disease leaves many people scratching their heads on encountering the long-winded tongue-twister of a word. Where to from here?
Enter Endometriosis Australia.
Endo Australia is a non-profit organisation established to abolish misinformation, educate sufferers and the general public alike and provide accurate, up-to-date information on the latest scientific studies, whilst providing support groups, fundraising events and details of national incision specialists by state.
Endo Australia has dedicated the month of March to increasing the awareness and understanding of endometriosis, with fundraising events such as the yearly 'Endo March' campaign (details here). The organisation was established to encourage women to obtain the knowledge and information to take charge of their gynaecological health and be taken seriously. Commonly normalised by too many health practitioners as 'just period pain', endometriosis is finally being acknowledged as more than just a troublesome period. But what is it?
WHAT IS EN-DO-MEE-TREE-OH-SIS?
According to Endometriosis Australia:
"Endometriosis is a common disease in which the tissue that is similar to the lining of the womb grows outside it in other parts of the body.
10% of women suffer with endometriosis at some point in their life with the disease often starting in teenagers. Symptoms are variable and this may contribute to the 7 to 10 year delay in diagnosis. Common symptoms include pelvic pain that puts life on hold around or during a woman’s period. It can damage fertility. Whilst endometriosis most often affects the reproductive organs it is frequently found in the bowel and bladder and has been found in muscle, joints, the lungs and the brain. In a Australian government report, endometriosis is reported to cost Australian society $7.7 billion annually with two thirds of these costs attributed to loss in productivity with the remainder, approximately $2.5 billion being direct healthcare costs."
HOW DOES IT FEEL?
Women with endometriosis may endure horrendously painful periods and often pain during other times of their cycle - during ovulation, during sex, before and after menstruating and sometimes when moving their bowels or emptying their bladder (read more here).
This chronic pain and discomfort can cause immeasurable pain and heartache, affect relationships, decrease fertility and quality of life - not just physically but professionally and psychologically too.
Endometriosis can be extremely debilitating, however the amount of disease present on surgical examination doesn't necessarily correlate with the level of pain, leaving many sufferers feeling baffled. Sadly, many specialists dismiss women presenting with abnormal periods and basically tell them to take some painkillers and persevere. It is this flippant dismissal and 'suck it up' mentality that can lead to an unnecessarily prolonged and drawn-out diagnosis.
SEVEN YEARS BAD LUCK
As mentioned above, a diagnosis of endometriosis takes, on average, between seven to ten years. SEVEN TO TEN YEARS. That's somewhere between 84 and 120 periods, countless days off work/school, a multitude of doctors, referrals, scans, possible ED visits, not to mention the emotional toll of having to repeat yourself time and time again, to often less-than-sympathetic health care professionals.
The only definitive way to confirm the presence of endometriosis is via laparoscopic surgery, where your gynaecologist will put you to sleep and insert a camera into your belly button to have a look around. Even then - if the Dr is not a certified excision specialist, they may not be able to identify the diseased tissue and you're a surgery and several thousands of dollars in the red, with no answers. The only way around this is to consult with a board certified excision specialist (find your local specialist here) in the first instance.
THE MYTH-CONCEPTIONS
The most frustrating part of speaking out about endometriosis is the old-fashioned, false 'cures' that are often provided. To date, there is no cure - there is no prevention, either (Denny E, Mann CH 2007). Not pregnancy, not hysterectomy, not eating only green foods or drinking the tears of a bee at midnight, under a half moon. The only method of eradication is via surgical intervention - and even then, it is likely to grow back - even after a full hysterectomy (Rizk B et al. 2014).
THE HOPE AMONGST THE HURT
If there is anything I have learned from my own experiences with endometriosis, is that there is hope. Each day, with every Endo March that passes, the world is becoming more informed of the prevalence and indiscriminate nature of the beast that is endometriosis. With every new diagnosis, we are empowering women to push back against the attitude of complacency and seek treatment without unnecessary delay.
START THE CONVERSATION
If you experience heavy or painful periods and/or worrying gyny symptoms, please consult with your GP as a first point of contact, and peruse the links below for more information about endometriosis.
SHARE WITH US
If you are an #endowarrior like myself, why not share a pic to get the world talking? The silence needs to stop and we need to make some noise, and March is the perfect time to do so. Simply snap a pic of yourself wearing/holding something yellow, with the hashtag #endothesilence and become an active part of bringing this illness into the light. Be bold, be brave and speak up - #endowarriors the world over, including myself, will be so grateful. Let's end the silence together.
For more information:
Endometriosis Care Centre Australia
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Comments
SIlent Severe & SHITFUL!
What about endomyosis? (Hope I spelt that right) tEndometriosis inside the uterine walls that cannot be seen! more research definitely needed to understand the suffering.
P:S – When I referred to a ‘GP’ diagnosing the condition, I actually meant a specialist. Whoops! :)
Great article!
I think the real struggle medical professionals have with endometriosis is its inconsistency. There are so many variations between cases and differing symptoms, there’s no clear outline for the diagnosis of the disease. Women are best-placed to know their bodies and cycles so if they suspect their issues could be related to the disease, going to your GP armed with your own research and diary of symptoms might be a bigger step towards being taken seriously instead of being dismissed as ‘just another whinger with bad period pain’.
The #endothesilence campaign is a brilliant step in the right direction, in raising awareness. Personally, I think it’s terrible that there is still no other way to diagnose the condition other than surgery, no matter how ‘simple’ the procedure is meant to be. I can certainly understand a GP’s hesitance to diagnose the disease as it’s a big call on their part – particularly when this diagnosis then could mean the patient needs to promptly undergo a surgical procedure. I would like the campaign to press for more research of the condition, allowing medical professionals to gain more of an understanding of it and hopefully leading to more knowledge with regards to diagnosis and perhaps even a method of diagnosis which does not involve surgery! :)