Living with endometriosis can be very a debilitating condition, leaving its sufferers feeling so disconnected from their bodies. For Ainsley Duyvestyn-Smith, photography helped her reconnect with hers – after more than a decade of battling with the invisible and incurable disease. Now, she’s launching the “world first endo empowerment photoshoot”, in hopes others can find their way back home to their bodies too.
It took about a decade before Ainsley Duyvestyn-Smith finally got her endometriosis diagnosis.
Endometriosis is an incurable condition where tissue similar to the lining of the uterus grows outside of the uterus. It can be found in various places, most commonly in the pelvic region like the ovaries and bowel.
Ainsley began experiencing symptoms like heavy periods when she was about 16. Back then, she says, it was fairly manageable because her issues were really just limited to when she was having her period, so she could at least plan around them.
But as she got older, it was getting progressively worse.
“[In] my early 30s, it got to the point where I couldn’t manage it anymore,” says the 34-year-old. “The pain turned into everyday, quite intense pain, and there was no medication that would work.
“My periods were always bad, but they went to a next level of bad to the point that I would be on the floor crying, unable to move, in and out of consciousness sometimes.”
The Pain COMPLETELY Disconnecting You From Your Body
Endometriosis really took over Ainsley’s life. She says she had to stop working and go on the sickness benefit because of the level of pain and fatigue she felt every single day.
Ainsley was officially diagnosed with it at 32, and even after having robotic laparoscopic surgery to cut out all the damaged tissue, it often comes back just a year or two later.
“It’s been really hard because I was a very active person, I had a very active social life. I always felt really confident in my body. I was reasonably fit.
“The pain completely disconnects you from your body… You almost have this out of body experience when the pain is that bad, that you just want to disconnect and try to pretend that it’s not happening to you.”
She says she gained 15 to 20 kilos because of the medication she was taking.
“That really messed with me because I didn’t recognise myself anymore. My body just looks so completely different to how it once was and none of my clothes fit me.”
On the occasion she had the energy to go out, she says none of her dresses would fit her, her skin looked horrible and she just didn’t look well.
“It’s taken a really long time to try and be kind to myself, as well as not blame myself and embrace the changes.”
Photography was Healing For Me
As a photographer, it was only natural for Ainsley to document how her body has changed over this time, which she says has been really healing for her.
“It helps me appreciate [my body] because I worked out that I can still look good in photos, and I can still feel confident, sexy and powerful when I’m in the right frame of mind.
“Seeing other people’s bodies that look like mine, and I think that they’re beautiful. If I think their bodies are beautiful, why don’t I think that my body is beautiful?
“My body is similar to theirs, and so it just helps me zoom out a little bit and see the diversity of people that come in front of the lens… and being able to make them feel confident and sexy.”
Bringing the Same Healing Experience to Others
This is how the Endo Empowerment Photoshoot came to be. It’s a unique and body-positive portrait experience aimed to help people with endo reclaim their own bodies.
Looking for a way to use her experience in a way that could not only help her, but also others who have lived with endometriosis.
(Plus, $50 from every shoot will be donated to Endo Warriors Aotearoa, a charity that supports people with endometriosis and fights period poverty!)
“I really wanted to provide a space for people who have endo to come together, to feel confident and connected to their body… To slow things down, take a breath, and have a few moments of gratitude.”
She says the photoshoot experience is its own thing, but getting the images back and then looking at your body is a whole different moment.
“Being like,’Oh my god I’ve put on 20 kilos but I LOOK AMAZING.’ It doesn’t have to be this awful thing all the time.
“We have to try and find joy amongst the pain.”
