Naomi Kilmany's life has been shaped by the realities of living with endometriosis, a condition that went undiagnosed for seven years. Now, she's channeling her experience into advocacy, using her platform to empower others.

 

Name: Naomi Kilmany

Day job: Disabled content creator & marketing manager

Home: Naarm/Melbourne Vic

Flow: Medium

Length: 3 days

 

Tell us a little bit about yourself.

My name is Naomi. I’m a disabled content creator and marketing manager from Naarm/Melbourne.

 

Was your period painful from the get-go?

My period was debilitatingly painful from my very first cycle. I still remember my first period so distinctly. I was complaining to my dad about stomach pain; from then on, it just worsened.

 

Can you tell us how you got diagnosed with endometriosis?

It took 7 years for me to be diagnosed with endometriosis. Every cycle that passed, I was told that it was just ‘a bad period’ and that birth control should fix it. The pain was excruciating and affected my work, my self-esteem, and my sex life, yet no one would listen. In 2021, I was finally heard by a family gynae/obstetrician and was referred to see an endometriosis specialist in Melbourne. I was diagnosed through laparoscopy a few months later.

Can you tell us about your symptoms, both then and now?

My periods were always accompanied by severe cramping and pain that radiated through my lower back and thighs. I also always struggled with painful and inconsistent bowel movements. For the past two years, the pain has become a daily occurrence that rarely goes away. I experience pain with urination, bowel movements, ovulation, my menstrual cycle, intercourse, arousal, walking, and standing.

My first surgery was unsuccessful in providing any relief. I was uneducated on all things endometriosis and still didn’t believe that I had it due to all the neglect I had already faced, so I opted to see a randomly allocated surgeon in a public hospital. It’s only since speaking to so many other endo sufferers and advocates that I’ve learned how poor the treatment I received was. Six weeks ago, I received genuine excision surgery with a specialist, and my pain has improved significantly since then.

 

How has your treatment journey been?

It has been tough, but sifting through the misinformation from doctors and online “health gurus” is tougher. Being on a disability pension and uninsured through this time has added to this struggle due to the long wait times for public treatments and therapies. Through my second surgery 6 weeks ago, I have finally noticed some improvement in my pain and symptoms, and I am beyond grateful.

 

Why is it important to you to tell your story?

As a young person, experiencing all these symptoms and being made to feel as though they were normal was incredibly isolating. I was made out to be a drug seeker and an exaggerator. I spent years ignoring my needs and wondering why I couldn't keep up with everyone else. Experiencing this alone, without any guidance, made me want to help prevent others from going through the same thing. Knowledge truly is power when it comes to endo. Talking about my journey online lets anyone who comes across my content know they’re not alone. We often feel we have such a unique experience due to a lack of societal representation. Still, you’d be surprised how many people have a similar story. I’ve found a new purpose by showing up for our community and improving our current lack of representation.

 

Endometriosis often impacts fertility. Is this a concern?

My partner and I have discussed this. I’m unsure what I’ll want or how I’ll feel about it if or when I get the news that I may struggle in this area. Now, being a mum isn’t something I’m actively planning, which has helped me put it back in my mind. We will make whatever decision feels right for us when the time comes.

How do you balance life with a chronic illness?

Honestly, I’m still figuring this one out. I’m currently on a disability pension to support myself while I learn to manage my endo and other chronic health conditions. It’s hard to learn the balance between letting yourself rest and doing enough that you still feel accomplished and satisfied at the end of the day. I think the way society has trained us to thrive for constant productivity and success is unhealthy and unrealistic, especially for people with health issues and disabilities. I’m currently working on doing things that make me feel happy that’s attainable.

 

Any wisdom on staying positive?

Distraction (reality TV), self-care (the Scarlet Period self-care line is my go-to!), and journalling help me with this.

 

Can you share with us what you had in your hospital bag when you had your lap surgery?

• Neck pillow
• Extension cord/long charger
• Earphones
• Earplugs and eyemask
• Movicol, de-gas & electrolytes
• Super loose, stretchy underwear
• Nightie and dressing gown

What’s your advice for someone looking for help?

Getting diagnosed with endo can be validating but very daunting. It can be hard to know where to start. Finding an endo support group on Facebook is a good first step. These groups often have lists of recommended surgeons and plenty of experienced endo sufferers ready to listen and answer any questions. Connecting with other endo sufferers taught me so much about the disease. I also felt validated after hearing from many people in similar situations! However, it can be very overwhelming hearing other people’s stories, so go at your own pace and take breaks. Living with endo is a marathon, not a race, so there’s no rush to figure it all out at once.