Known as "Chronically Ellen" on social media, Ellen is a self employed garden-to-table expert and photographer living with multiple chronic illnesses. Diagnosed with endometriosis in 2017 at 25, a diagnosis delay of 12 years, she has had multiple laparoscopic surgeries and procedures related to her endometriosis and often uses her social media platforms to spread awareness. This Endometriosis Awareness month, she reflects on what is "normal" and the future of Endometriosis care in New Zealand.
Mid-February I sat down with my gynecologist for our three-monthly scheduled catch-up. We joked about recent personal life events and caught up like old friends. We have known each other since 2017 and John* has been like the third person in my marriage. He is someone both my husband and I trust explicitly, and we often joke he knows my pelvic region better than my husband does - cue the canned laughter. After a review of how my health had been overall and how my ongoing endometriosis and adenomyosis symptoms were presenting, he paused for a moment and thoughtfully suggested that it may be time for another surgery. This surgery would be laparoscopic for what is jokingly referred to as a "clean out" surgery in which the pelvic area (and beyond) is examined carefully and any endometriosis found is removed by excision surgery and adhesions dealt with. Excision surgery is considered the gold standard and effectively cuts the endometriosis out by the root, not just burning the top of it off. We discussed animatedly how it usually takes me ages to recover from these surgeries due to neurological and nervous system complications. We planned that we could combine other surgeries I have had in the past and have botox injected into my pelvic floor, nerve block injections, long-lasting anesthetic inserted into my uterus, and hormone therapy post-surgery, the works. Then came the tough part. As this would be my third laparoscopic surgery and I experience ongoing pain and re-growth, it was time to look at organ removal.
I have a particular ovary that is forever getting cysts, stuck to things, giving me grief and I refer to it as my naughty ovary. John was more than comfortable with the decision to remove this and said he usually takes the fallopian tube at the same time. No complaints from me there. Then came the more delicate topic of my uterus. What to do with my tilted uterus that was slowly being mutilated by Adenomyosis. I brought up the fact that he had previously said I would be an ideal candidate for a hysterectomy, and he came to a complete stop.
“"But why?", you ask. Having your uterus removed at a young age is not just about the decision to have or not have children.”
John knows that since the day he met me, I have adamantly never wanted children, never had a maternal inclination, and much prefer the company of my self-sufficient cat. I must point out here that this is a multi-faceted choice stemming from childhood trauma, a lack of mother figures in my life, and my continued ill health/genetics. I do love children, in fact, I love my niece and 3 nephews dearly and would fight a bull to protect them, but it's just not something that has ever been in the life plan for my husband and I.
Knowing this about me, my gynecologist still referred me to a clinical psychologist before approving the surgery. "But why?", you ask. Having your uterus removed at a young age is not just about the decision to have or not have children. Having pelvic organs removed is a major surgery with life-altering effects on your hormones and the possibility of inciting peri-menopause. The elephant in the room here is that the risk here is the effect on my length of life-span. Soberingly, everything that my gynaecologist does is to improve my quality of life so I can live it, and often that comes at the cost of its length. So I believe he was correct to do his due diligence here and just make sure that I am 110% comfortable with the risks.
At 32, Menopause is not something I should be thinking about. It shouldn't be in my life plan, and if alarm bells haven't started ringing already, no it's NOT normal to have a relationship like this with your gynaecologist. However, in my case, it's a necessary normal for me.
“It's important for him to really know and understand me to tell when I am masking, in pain, in need of help, or afraid to ask for what I need.”
Endometriosis is unfortunately an extremely common inflammatory disease affecting 176 million individuals globally, and about 120,000 of those live in New Zealand. This translates to around roughly 1 in 10 girls, women, and those assigned female at birth living with this chronic condition. I can guarantee someone you know personally will be living with this, whether you are aware of it or not. THEY may not even be aware of it just yet or have received a diagnosis yet. For such a common condition, the fact that the average years it takes to receive a diagnosis is over 8 years is astonishing and truly mind-boggling. Whilst the healthcare system in New Zealand is currently in crisis, it's easy to surmise that this figure will easily slip backwards, not forwards as people are often told their symptoms are "in their head", "made up", or at worst "normal". The culture in NZ of pulling up your socks and getting on with life is at best toxic. Whilst this is slowly shifting, and people are realising it's OK to ask for help, OK to admit when something hurts, and OK to not be OK, the diagnosis rates are still not improving.
I am fortunate enough to be looked after in the private healthcare system, and when I need attention I have John's mobile number to text/ring, and have me in surgery the following day in case of extreme emergency. I thank my whanau every day for the privilege of taking out that insurance when I was born. However I chat with the community daily, and the stories people share with me about their experiences, are mortifying. Reading like modern-day medical horror stories, what people are being put through is just not right. They deserve better. We all deserve better. Your sister, mother, wife, deserve better.
“There is however hope. Organisations such as Endometriosis New Zealand are working hard with the government to implement a standard medical pathway for endometriosis diagnosis”
This will put it on every GP's radar in the country and speed up diagnosis and early intervention significantly. Right now it's left up to the individual GP to educate themselves to know when to refer a patient to a gynaecologist (even though it's still not a given that the patient can be publicly seen due to waitlist times). Endo Warriors Aotearoa are out in the community fundraising and not only providing support but also physical care parcels for people experiencing surgery. The topic is also gaining more media coverage and knowledge is truly power in this case as it empowers individuals to be able to advocate for themselves to their healthcare professionals.
The momentum for change we once had was pushed over flat on its face thanks to the Covid-19 pandemic (like many others) and the NZ government priorities shifted in response to that. With the continued support and buzz around events such as Endometriosis Awareness month, I believe we are slowly regaining that momentum.. and when enough people stand together and stand up saying enough is enough, change really can happen.
*name redacted to protect privacy
If you or someone you know suspects endometriosis is affecting your life, you can seek help and further information from the following agencies:
ENDOMETRIOSIS NEW ZEALAND
Email: info@nzendo.org.nz
Phone: 03 379 7959
ENDO WARRIORS AOTEAROA
https://www.endowarriorsaotearoa.com/
Email: info@endowarriorsaotearoa.com