What have you demystified about your female body that you wish you knew when you were younger?

I always thought periods were meant to be painful, and that was just something all women/menstruators had to deal with. I never learned about conditions like Endometriosis until I was in my 20's and actively trying to figure out what was going on with my body. My biggest learning over the last few years is that you know your body best, and you have to trust that if it's telling you something isn't right - it's telling the truth. Every body is different and you have to find what works for you - you shouldn't manage your body a certain way just because one person has told you that it's 'right' or 'normal'. Your 'normal' will be different to anyone else you meet. I also learned there's no quick fixes, so don't worry if it takes time to figure out what's best for you.

 Have you been diagnosed with a women’s health condition? If so, how did you know something wasn’t right, and what was your journey like to get answers?

I have Endometriosis and had excision surgery in January this year. For me, the biggest telling point that something wasn't right was the fact that I couldn't manage or get on top of the pain I was experiencing throughout my cycle, even with high dose Opioids. There were other symptoms too - like nausea, ovulation pain, extreme fatigue, bowel issues etc. I put up with it getting continually worse for two years before I reached a point that I couldn't do it any longer, and that was when I decided to start the journey of being investigated for Endometriosis. I'd been doing my own research for a while and felt like I had the information to know there was something serious going on, and that helped when I decided to start the diagnostic process. 

What was your diagnosis experience like?

I was incredibly lucky that when I decided to start the diagnostic process, I had people who listened to me first time, and made it all straight forward. I'm very aware this sort of experience is the minority! Within a few months I'd been to a new GP, seen a specialist, been through all the additional appointments and booked a surgery date. 

That said - it's important to acknowledge the journey that got me to this point. I didn't properly finish puberty until I was 18 - I was dancing full-time from the age of 14 and lost my period all together. I'd been put on the pill once when I was 13 to try and sort my period, which was all over the show (plus painful and heavy when it happened), but I got migraines with aura so had to come off the pill. I didn't get a period again until I stopped dancing at 18. I once again fell into irregular & painful cycles, was then put on the mini-pill which helped ease things for two years before I got break through bleeding and small cramping. I decided I needed to let my body try and settle, and see what happened when it was left to it's own devices. My cycle became regular straight away, but not long afterwards, the pain started and then continued to get worse and worse over the following two years (plus the rest of it!) before I decided to then try to get a diagnosis.

How has your condition changed your daily life?

Prior to surgery I learned to strategically plan social events (as best I could) around when I expected I'd be having pain or flare ups. But it was unavoidable that I'd have to re-schedule or cancel plans when pain hit unexpectedly, or alternatively push through events if it wasn't an option to cancel/rebook. That always felt like I was letting people down - even when my friends/family/colleagues were understanding and supportive. 

I work in Sport & Recreation which prioritises wellbeing. Despite this, it took me so long to realise the impact Endo was having on my own wellbeing every single day. It took such of a toll on my mental health just to manage Endo pain day to day and stay positive, especially whilst working an active job that advocates for people to 'be well'. Quite ironic! Alongside this, I produce dance works and teach ballet, both of which are people-facing, busy jobs, and can often involve travelling to tour a work. Managing flare ups in the middle of a show season made me feel like I couldn't deliver to the high standard I set for myself, and sometimes I still sit here thinking 'how did I get through that and still do such a good job?'. It makes me proud but it wasn't pretty.

Endometriosis impacts every area of my life. Post-surgery I'm feeling more optimistic about managing it overall, but it's like I'm getting know my body all over again, and I haven't found my 'new normal' yet, so sometimes I get caught off guard if I end up not feeling well some days. But I'm looking forward now, rather than back. 

 Have you tried anything that has helped you manage your symptoms?

Now I'm 5 months post surgery and my main focus for the rest of this year is truly taking care of my health and my body. I'm currently on progesterone (daily), which started after surgery, with the aim of this suppressing ovulation and slowing down any regrowth of Endometriosis as long as possible. Aside from this - I'm seeing both a health coach, and a psychologist who specialises in chronic illnesses and pain management. They are supporting me as I'm working to make habitual changes in my lifestyle, routines and physical well-being that are sustainable, as well as work on my mental approach to managing pain, symptoms, and the grief of knowing that I'll always have Endometriosis, there's no cure, and I'll have to manage it my entire life. It's a process, but I'm starting to notice that when I look after myself (even with small things like sleep, proper meals etc) my capacity and ability to manage any Endo situations is so much better. It's challenging but I'm enjoying the process of taking care of my body and mind after years of ignoring them.

What’s one thing you wish more people understood about women’s health?

Honestly, understanding anything more than they do now!! The fact that more research has been done on men's baldness than women's health is actually ridiculous. That aside, I think more awareness surrounding chronic conditions such as Endometriosis, PCOS, PMDD etc is vital. People don't need to know the ins and outs, but just need to know that these conditions exist, and they affect so many women. Also - there's no 'one size fits all' with women's health. We need more education surrounding what happens to women's bodies every month, and what signs/symptoms might suggest that something isn't right. The more people that understand this, the better. 

When your body feels hard to live in, how do you take care of yourself?

I am really working on taking care of myself when my body feels hard to live in. I'm trying to re-wire my expectations of myself, and learn to stop fighting against my body, but rather to work with it. That is high on my priorities. Sometimes I nail it, and sometimes I don't, but we're getting there. The key things for me, are slowing down, not pushing through if I feel unwell, and taking time out for myself to breathe and figure out what I need. Often the immediate actions will be - getting my wheat bag (I have multiple at home, work etc), taking pain relief (luckily not the super heavy stuff anymore), and finding a quiet place. I'm working on shifting my focus in the hard moments to do what I need to make my body feel safe, acknowledge what's happening, and reminding myself it will ease eventually. For anyone who goes through that mental battle - you deserve to do what you need for your body, it's so important, and it's always worth it. You've got this.