Being finally diagnosed came as a wave of relief – there was actually something wrong and a reason that my pain felt much worse than my friends.”
Could you tell us a little about yourself and your journey with endometriosis?
I was officially diagnosed with endometriosis via laparoscopy in August 2016 following 17 years of suffering in relative silence. I was approaching my 31st birthday.
Five years and various surgical and hormonal treatments which have stopped my periods later (including two lots of chemical menopause), I had excision surgery with one of Wales’s NHS endometriosis specialists at the end of October 2021.
How has endometriosis impacted your mental health?
Before my diagnosis I was convinced that I was just rubbish at dealing with period pain and that I wasn’t as strong as my friends or family members. Being finally diagnosed came as a wave of relief – there was actually something wrong and a reason that my pain felt much worse than my friends.
Since my diagnosis, due to all the hormone treatments and chemical menopause causing me to gain weight, I am now dealing day to day with a complete lack of self confidence in my body image and what is effectively a post-menopausal feeling body at the age of 37. I try to block it out most days (working from home helps as I can just wear joggers all the time and dress for comfort rather than style!).
I also try to distract myself by focusing on how I can help others with endometriosis, hence why I volunteer and get involved in many of Endometriosis UK's fundraising challenges and events, including #WalkForEndo, where last year I walked the equivalent of the length of Wales and this year, one year on from my excision surgery, I ran Cardiff Half Marathon with my sister – not bad for someone that hadn’t jogged anywhere since 1999!
We’re campaigning for mental health support to be offered to those with endometriosis, should someone like to access it. Why do you think this is important?
Mental health support is very important, there are so many different ways that endometriosis can affect a person that it can be overwhelming. Just the offer that professional support is there if and when needed would probably give many of us living with endometriosis a boost, knowing that there is someone we can turn to if we need it. I found that setting up our support group worked wonders for local ladies to chat and vent to other people living with the disease…..no one knows endo better than another person diagnosed with it!
Everyone overcomes tough times differently, is there anything you like to do to take care of yourself on difficult days?
Not going to lie… on difficult days I turn to my good old friend chocolate (and the occasional glass of wine haha!) I am notorious for ‘ploughing on through’ pain and discomfort. I think that’s how I lasted 17 years before my diagnosis. There have been very difficult days in the past though where a good old cry, and some comforting treats helped enormously. There is no shame in a duvet day with TV on and sweet treats. We all need a little break now and then.
Thank you so much for volunteering with Endometriosis UK. What inspired you to get involved as a volunteer?
Growing up and living in mid Wales, it can feel a bit lonely, especially when faced with a long-term health condition, as we tend to fall in between the cracks living in such a rural area, so I wanted to set up the support group to try to ensure there was a safe space and a friendly face when it's needed. During covid when we changed to online meetings, I also found that people from further afield in Wales were joining in with our group too – the geography of our country makes it difficult to meet easily in person and everyone is welcome online if they need a chat.
I have volunteered with Endometriosis UK since 2019 as the Mid Wales Local Support Group Leader. In March 2020 I also started volunteering as the Campaigns and Social Media Volunteer where I run the @endoukwales Instagram and Twitter accounts. As health and education is devolved here in Wales, we use these accounts to share Wales specific campaigning updates, details of local and national events and anything else that might be of interest to the Welsh population.
