STRUGGLING THROUGH ENDOMETRIOSIS AWARENESS MONTH AND WHY THAT IS OKAY.

March is endometriosis awareness/action month and, although my work is about endometriosis, I have struggled a lot with it this year.  It is easy to forget how overwhelming it can be during awareness months, more so when you base your entire PhD around living with the condition, but I have calmly accepted that it is okay to struggle with the month.

This year’s endometriosis awareness month has been somewhat more difficult than the previous years since my official diagnosis but it is also three years since my original excision surgery date was cancelled as I was due to go down to theatre. In two weeks time it’ll be three years sine my excision surgery which turned into realising that having that surgery did not, in fact, make much improvement for my pain. Now that it is coming up to three years since my last surgery, it has become an even further waiting game whilst I (hopefully) continue with my injections for a little bit longer. It’s another waiting game for MRI results to check for regrowth and the possibility of adenomyosis alongside the endometriosis plus the joys of waiting for a date for getting my coil change that was part of my “management” originally. All of this combined with the posts I have come across online and in articles, has just been emotionally overwhelming for me.

It’s 2025 and more awareness is coming out for endometriosis (and adenomyosis) but waiting lists in the UK, for gynaecology especially, are getting worse and the average diagnosis time for endometriosis is now 8 years and 10 months. Terrible being a massive understatement here. The more stories of experience I see being shared, the more I think that I have lucked out in how long it took for my diagnosis, I then will realise that it isn’t luck at all and it was still a terrible timeframe for me. Every year I think it will get better but it never feels like it does, it just feels like we are screaming to a brick wall at times. It’s emotionally exhausting seeing all of these people share their stories, experiences and horrors. We shouldn’t have to do this but we do, just to get some recognition. To get the hidden to be seen is a never-ending fight.

I’m also fighting a battle of needing to share my work but needing to protect my emotional wellbeing and I don’t think people realise how many people with endo will feel this way around the awareness month. I have to remind myself that this is my life and that the research I have chosen to do explores living with endometriosis: it’s okay to step away from the awareness month. I’m not sure what the future holds but for now it’s waiting for appointments and trying my best to manage it all and hope that care improves for endometriosis soon.

I am thankful to have some amazing support around me and for them reminding me when to just take a step back and breathe, have a break from it and come back to it.

Prostap3 injection for endometriosis.