Change needs to happen.

Throughout March we raised as much awareness as possible of Endometriosis. We educated others and hoped that it would create better understanding of what life is like when living with a chronic condition. It gave us a voice which we used and talked about what needs to change. As I sit here and write this I have mixed emotions. Since January this year there have been more than 100 deaths to suicide within the Endometriosis community. There have sadly been 2 within the last 48 hours. It speaks volumes about the pain that sufferers endure. We all know how helpless endometriosis can make us feel and how isolating it can be. I guess it puts things into perspective and with helping run a support group I put a message out highlighting to other ladies that “it’s ok not to be ok” and that “it’s ok to reach out for support” and they can do so by a message either on the group page or privately to one of the admins. It’s about letting others know that they aren’t alone through this. Early intervention is so important. 

There is still a lack of understanding amongst doctors. I’ve spoken to a few ladies who are in the process of being diagnosed and are being told there pain is either “constipation” or “just bad period pain.” There is a Menstrual Wellbeing toolkit on the RCGP website that can be accessed by clinicians but looking at going forward how do we encourage doctors to use this toolkit in order to ensure quick diagnosis and treatment? Is it more about highlighting that this toolkit exists and building menstrual conditions into CPD within the workplace? I’m incredibly lucky to have a good GP who understands endo and has put supports in place for when I need them i.e. if I run out of painkillers, need to be seen or be sent up to the hospital.  Unfortunately other ladies don’t have that and having good quality care and support is key when living with a chronic condition.

Last week we had the Worldwide Endometriosis March in Glasgow. This was well attended and attracted attention from the public. We gave out leaflets with information on the condition which included details of support groups that run across Scotland. There was various banners and signs created which highlighted how us sufferers feel in regards to the condition. It was also important to highlight that Endometriosis doesn’t discriminate and that everyone should have access to the right care and support regardless of gender when suffering from this condition. 

Endometriosis Awareness Month may be over but that doesn’t mean we won’t stop raising awareness and educating others. I just want to give a shout out to those who are campaigning to improve care and treatment especially Monica Lennon, thank you for all that you do. Also Edinburgh Council for acknowledging that this is an important issue and awareness is needed. We won’t stop fighting for change💪🏻