Living with an eating disorder alongside Endometriosis, Adenomyosis, ADHD, and PMDD

In this blog, Mimi shares her experience living with endometriosis, adenomyosis, ADHD and PMDD, and how these conditions impact her relationship with her body and played a role in developing an eating disorder during her adolescence.

Living with Endometriosis, Adenomyosis, ADHD and PMDD has impacted my relationship with food, exercise and my body in many ways.  

I was an early bloomer and first got my period at 10 years old. Very early on, I started experiencing severe pain and discomfort, extreme bloating and mood swings.  

Whilst I probably knew more about periods then a lot of people my age, as my mum was working in the women’s health space, there was still a lack of education around periods and pain/hormonal conditions.  

It took 11 years from my onset of symptoms for me to receive a diagnosis, even with a family history of endometriosis. Countless doctors visits, misdiagnosis, and more.  

Throughout this time, experiencing severe pain and bloating led to a level of discomfort with my body both physically and mentally, and whilst I had other contributing factors that led to my eating disorder, I know that these health issues played a big role in my ED developing in my teen years, along with my now diagnosed ADHD and PMDD.  

Whilst all bodies are constantly changing, living with Endo/Adeno meant that my body changes were even more frequent and extreme. It means that I can get dressed in the morning with my clothes fitting me, and then if I have a flare up part way through the day, my bloating can be so severe that I can’t breathe and my clothes are all of a sudden two sizes too small.  

I experience gut issues and discomforts that appear to have no pattern, and everyone seems to have an opinion on how to ‘fix it’.  

Navigating my relationship with food became tricky, as there are so many people telling you to try different things to ‘solve’ my tummy problems. ‘Try this diet’, ‘have you tried cutting this out’. These are all things that health professionals or people online have said to me at various points in my journey.  

The reality is that no food can ‘cure’ endo., and in fact in my experience, these questions and advice generally lead to more harm than good and all it did was contribute to my ongoing difficult relationship with food.  

Over the years, having countless medical appointments, surgeries and procedures can also lead to difficulties with food and exercise. Spending weeks in hospital or on bed rest can also lead to massive changes in routine including eating and exercise habits, as well as the physical implications of procedures such as scarring.  

Add to that having PMDD which is a severe form of PMS that can lead to negative thoughts, suicidal ideation, severe mood swings and depression in the luteal phase (pre menstrual phase). This can mean that for around 2 weeks each month, my mental health is extremely rocky. And, having ADHD (especially undiagnosed for most of my life) contributed to my eating disorder. 

I am now 28, and even after 10+ years of working on my mental health, and 7 years with an official Endo/Adeno diagnosis and in recovery from my ED, it can be so difficult, especially through stressful life changes or during different phases of my cycle.  

For example, I can be having a great few weeks through my Follicular and Ovulation phases, and then as soon as I reach my luteal phase, it feels like all of that work goes out the window. My bloating flares up, my pain becomes unmanageable, and my moods are all over the place. My ED thoughts and body dysmorphia flare back up, I want to quit my job, run away from all my problems, end relationships, my self talk is really negative and just overall I have a really difficult time with daily life.  

 If it’s hard for me to understand, even after years of dealing with it, you can only imagine how difficult it is for others to grasp.  

People struggle to understand dynamic disabilities – how someone can be fine one day/minute, and then bedridden the next.  

I think living in a body that changes so dramatically and experiences such high levels of pain and discomfort regularly can be a lot to deal with, and sometimes there’s a want to escape from it all. To live in a body free of pain and bloating.  

It can be very confusing, and generate a lot of self-blame and hatred towards my body. Wishing that my body was ‘normal’ or being mad at my body.   

That is generally when my body image and ED thoughts come to the surface, wanting to try and control a situation that I can’t. 

Why More Awareness is Key 

I think it’s important for the general public and healthcare professionals to be a lot more educated on these topics. There has definitely been a shift in the last few years, and these illnesses are being talked about more and more. However, there is a long way to go.  

We need people to be more understanding of invisible illnesses, believe patients more and not discriminate against us due to these differences.  

I think it’s also important to know that every person with Endo/Adeno/PMDD is different. What pain management works for some, might not work for others. Some supplements help some people and not others. Symptoms can vary and the management of them can vary.  

Similarly, we should not be enforcing strict diets on people with endometriosis. I am in full belief of equipping patients with supportive information, but not at the cost of their body image or healthy eating patterns.  For me, healthy eating has less to do with what food is on your plate – and more to do with the relationship you have with food. I have learnt a lot about foods that can support me – ie foods that are higher in iron or magnesium. So, I try and focus more on what I can add to my diet to support me, rather than what I should avoid/take away.  

Also – before offering advice, always ask first. Even if you know someone else with these conditions, endo sufferers receive a constant barrage of ‘have you tried this’ messaging, which can really contribute to the self-blame that a lot of us feel. Trust me – most of us have tried it all. I am normally happy to hear from others – I think community sharing is so vital, especially considering the lack of education and support that we can get – but just check in first before offering unsolicited advice, as you don’t know how someone might react to it.  

What Helps Me  

My advice for those impacted by these issues is to remember that your body is a vessel that carries you. It can be so hard sometimes, especially when you are experiencing pain and gut symptoms to remember that it’s trying its best, but it really is. 

Your body needs fuel to survive, just like a car can’t run on an empty tank, neither can your body. You don’t need to do anything to ‘deserve food’, simply existing on earth means that you need to eat.  

Being kind to your body and loving yourself can be a journey, it can take time, but starting with small daily steps can really help.  

Counselling, following body positive accounts, talking with friends and family, finding ways to connect with my body, grounding, dancing, and movement are all things that work for me.  

Other things that have helped me include: 

• Finding a really good psychologist who specialises in eating disorders 

• Finding a good health care team  

• Talking with friends and family  

• Finding community – groups like the Butterfly Foundation’s support group  

• Connecting with and grounding my body, through mindful movement, dancing, swimming, art therapy 

• Following body positive / body neutral accounts  

• Sharing my journey, recovering out loud   

About the author

Mimi Kilbey is a neurodivergent (late diagnosed ADHD), bisexual woman with a lived experience of chronic illness (PMDD, Endometriosis and Adenomyosis), and an eating disorder (Anorexia Nervosa).  

Mimi is also a writer, speaker, advocate and activist and has been sharing her journey of mental health, chronic illness, and neurodivergence to help break down stigmas, educate others and provide support to her community.  

Mimi has been volunteering and working with a range of Not For Profit’s for over 6 years. With a strong background in Fundraising and Marketing she has recently won the Fundraising Institute of Australia’s NSW Young Fundraiser of the Year Award for 2025 for her notable work in the sector.  

Mimi has also recently joined the Eating Disorders Neurodiversity Australia Board. 

Outside of work she loves reading, writing, travelling, dining and dancing – basically anything creative! 

Get support

If you’re struggling with an eating disorder or body image issues, please call the Butterfly National Helpline for confidential and free counselling, on 1800 ED HOPE (1800 33 4673) or chat online or email, 7 days a week, 8am-midnight (AEDT).