Endometriosis Looks Like Me: Making the Invisible, Visible
By Giorgia Mori
The endometriosis community is incredibly diverse, with each individual’s unique story part of the rich tapestry of endometriosis awareness. Endometriosis is often plagued by the myths that surround it: endometriosis is just a bad period, endometriosis means you can’t have children, endometriosis only effects women, endometriosis can be cured by pregnancy, endometriosis is a career woman’s disease…and so on. These myths perpetuate an image of what an individual with the illness looks like, but the reality is so much more diverse. In “Endometriosis Looks Like Me” we challenge the notion that endo looks like just one thing, and present the many varied facets of a life, and an individual, with endometriosis. In this blog we meet Giorgia Mori, an Italian woman living in Brisbane, a researcher and scientist, a mother. Giorgia is passionate about making the invisible side of endometriosis visible through creative works, and in this blog she generously shares her story and a thought provoking video about the reality of invisible illness. You can follow Giorgia on Instagram here.
YC Photography (@yulia_yc.photography)
“So, you are telling me you are in pain, but you keep going with your normal daily activities…this means your pain is not excruciating, isn’t it?”.
If you are affected by a chronic illness, after reading/hearing this you are either upset, angry, resigned, or maybe you are hurt, sad, you feel hopeless. It is because of statements like:
“but you don’t look sick at all”, or
“but you look really good”
that I pretend everything is ok even if it is not, because what is invisible for you is very much visible for me. Struggling to “look ok” when I wake up in the morning, if I can actually get out of the bed…and knowing that you can’t see my pain - it’s not making me feel better. So, I don’t want to hear it.
The first symptoms started in 2014, 6 years ago. I was told I had a premenstrual disorder and that there wasn’t much to do. But my period pain, my mood swings, my bloating, my gut symptoms were getting worse every month, so they did a scan. “You have adenomyosis”.
Now that I am writing it, I notice that even Microsoft Word doesn’t recognise this word. Adenomyosis is a disease where the endometrium grows into the muscle of the uterus, it can cause pain to the back and down the legs, with general associated feelings of fatigue, depression, anxiety. Adenomyosis can affect fertility. It can cause subfertility (delay); recurrent miscarriages, premature labour and premature rupture of the membranes (qendo.org.au).
“If you want to have kids, it won’t be easy”.
At that time, I was still studying for my PhD, and I just started my career as a scientist, so having a baby wasn’t something I was thinking about. I was fully immersed in my job and managing my light “pre-menstural disorder like” symptoms with natural supplements and my gut symptoms with a specific diet low in certain sugars.
In 2016 I got married and, unexpectedly, I got pregnant. Only now I realise how lucky I have been.
After giving birth and at the end of breastfeeding my doctor put me on the birth control pill, to manage the adenomyosis. And that is when everything got worse. It wasn’t just a period pain anymore, or isolated mood swings. It was terrible cramps for two weeks before my period, it was the anxiety, the brain fog, the fatigue…and then the leg pain, oh the leg pain…the feeling is that of having a fire inside me, preventing me from doing normal activities like biking, doing the stairs, walking, laying on the bed…nothing helps.
In the meantime, I relocated from Italy to Australia - Brisbane, and after changing birth control pill, and trying an intrauterine device, my new doctor suggested me to have an exploratory laparoscopy. At the beginning I was scared. I had never had a surgery before, I was in another country, another language, far from my support network. It took me a couple of months to actually convince myself that I couldn’t keep going like that, I wasn’t living, I was just existing.
After the surgery, they said they couldn’t find any adenomyosis but they removed some endometriosis (i.e. endometrium-like tissue found outside the uterus). I was surprised but I trusted my doctor, and waited to heal to see what the after effects of the surgery were. I had a couple of very good months. No leg pain, no back pain, no bloating, no cramps, no brain fog, no fatigue…but a big problem was still there, the painful intercourse…and I already knew that there was something else going on.
Time goes on and my pain was back, worse than ever. I ended up at emergency because the pain was unmanageable, and all the other symptoms I had before the surgery were back.
“There is nothing we can do for you”
“At least it’s JUST endometriosis”
I then went back to my doctor. “You can try to have another baby and see if the symptoms get better”. “You should have another surgery”.
I decided to go for a second opinion and showed the new doctor, an excision specialist (i.e. a gynaecologist devoted to gynaecological surgery and specialised in minimally invasive removal of endometriosis lesions), some photos of my previous surgery. It turned out the first doctor missed my adenomyosis, and it is also possible that my endometriosis is back, or maybe some adhesions from the previous surgery…it just looks like a never-ending story, with no real solution.
What astonishes me is that endometriosis is a common disease, it is not a simple disease to treat, and there is still no cure for it, not even a solid medical plan for endometriosis/adenomyosis patients.
Since I have been diagnosed with these diseases, I have made regular visits to gynecologists, pelvic physiotherapists, yoga teachers, I have even considered Chinese medicines, acupuncture sessions. Endometriosis/adenomyosis require specialist treatment but there is no formal accreditation or training in treating them. Not even for symptoms improvement. I can’t remember who once asked me “so is this thing growing where, into your nose?” …really?? And how are you supposed to treat me??
There is no education on these diseases, and I am not just talking about doctors. I would like my friends to know about it without me having to explain it a thousand of times, my parents, my co-workers. I would like workplaces to be prepared to make arrangements for helping people affected by these diseases to better manage their symptoms. Just allowing few days a week to work from home would benefit a lot. I wish I could have a room to use as a break during my working hours, for laying on the floor, my legs up against the wall. Simple, small things that can give me enough energy for keeping up with my activities for another few hours.
Instead, I have to be strong, I have to keep going, I can’t show how I really feel and if I do complain too much with some close friends, my husband, my mum, my sister…I feel like a burden to them.
At the same time, I feel blessed for having them, my family, my friends, my daughter…my daughter…how can I hate my body when it gave me my daughter? And how can I complain about “just” a pain when I have a wonderful life, an amazing husband, a successful career? I complain because I have everything that I could ask for and can’t fully enjoy it. Because I am in pain, all the time, 24 h a day, 7 days a week. I am angry, and I keep asking myself why me? It’s just unfair.
But after all, all I can do is keep going…be happy about what I have, and recognise that my family, my friends, my colleagues, also strangers I meet in my everyday life, they all contribute in giving me a reason for keep fighting, for keep loving this life despite all the pain.
This is why I NEED people to be aware of what endometriosis and adenomyosis are. Because EVERYONE can help, with little small things. But if you don’t see my disease, you can’t really see me, and you will make judgments, you will give advices, you will put pressure on me and you will make me feel ashamed of who I have become.
And now a last thing, for all the people, of any age, that, like me, are fighting the same battle:
Educate yourself, listen to your body, trust your gut, choose your best option and share your journey. Someone will listen, and that someone will save your life.
CREDITS
Photography:
Yulia Chichkanova, YC Photography (Stills)
Emilia, Emz Imagery (Video)
Make Up
Location
Queensland Russian Community Centre
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