Lowri's Story
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.
Fionnula's Story
Endometriosis has affected me both physically and mentally in many ways for many years. Leaving me at times, finding it impossible to go about my daily life. Quickly, myself and those around me began to realise my chronic and excruciating symptoms where more than just “bad periods”. After many years of a multitude of doctors’ visits, scans, tests, medications, and misdiagnosis I was finally diagnosed with what I always knew was endometriosis.
Not long ago, my first laparoscopy surgery detected I had stage 4 endometriosis. Hearing “we did find endometriosis” took years of weight and anxiety off my shoulders, in the sense that I finally had answers. However, I was completely unprepared to learn that my endometriosis had caused my bowel, uterus, and ureter to fuse together - leaving me with the diagnosis and subsequently crippling pain. In the near future, I will be having a second, larger surgery, in the attempt to separate the organs effected and remove some of the disease.
As of now, like a lot of endo warriors, I have absolutely no idea what the future holds for me in terms of my endometriosis and how it will impact me in years to come. Having endometriosis can be scary but I am so grateful to the endometriosis community, including Endometriosis UK, for guiding me for many years, even when I did not have an ‘official’ diagnosis. Those who advocate for endometriosis provided, and continue to provide me with advice, knowledge, comfort, and hope. Sometimes half the battle is being listened to but being part of such a strong community of women dealing with this horrific condition like myself every single day, makes me feel accepted, heard, and valid.
I am beyond proud of myself, my younger self, and everyone out there who is continuing to battle endometriosis too - diagnosed or in the process - we are never alone!
Demi's Story
It wasn’t an easy road to getting a diagnosis – even after knowing it for years. I went back and forth to the doctors, but as time progressed, so did my pain and symptoms. I had to educate myself and be my own advocate.
I finally got my first surgery in April of 2022; it was such a bittersweet moment. I finally felt heard and seen. As days went by after my surgery, the sadness began to creep in. The realisation of “it’s going to be with me forever” and all the what ifs...
I was diagnosed with stage 3 endometriosis, it was found both inside and outside of the pelvic region. I’m currently in a position of waiting for tests from a thoracic surgeon, I am experiencing a whole new range of symptoms, so it feels like every part of me right now is suffering. I’m scared of what’s to come and I’m scared of what’s going on inside me.
But above all I am so proud. I am proud of myself for fighting to get answers, my fifteen-year-old self is proud of how I didn’t give up, I’m proud of how I manage to still get by and I’m proud that I have become the strength that I didn’t know I carried.
I have been welcomed into a beautiful community, the endo community is there for you on those days where you have questions, need advice, and I have genuinely gained so many new friendships. Being chronically ill is something I still struggle with, but I am grateful for what this journey has taught me, about women’s health, about myself and about so many other people. I still have a long way to go, but every now and then I stop to remind myself how far I’ve come and how I’m still smiling.
Mirfat's Story
I remember being in Post Op ward and the consultant telling me, I have endometriosis, instead of being in shock or being sad, I smiled, it was a smile of relief that this terrible disease finally has a name, that the pain I had been having for years and the dismissiveness I had been facing for years by a multitude of professionals, finally had a name, that I could go home and tell my family/friends that my pains were not phantom pains neither were my periods ‘normal’.
For me, endometriosis is a debilitating condition. It does not just cause physical pain but also an emotional and mental one. I have endometriosis covering my pelvis, ovaries and bowel and I have been told that the disease could have an impact on my fertility. At times I get upset about the delayed diagnosis and the impact it continues to have on the quality of life and wondering had I been diagnosed sooner rather than have to advocate for myself for nearly 15 years to be taken seriously and be seen by a specialist, would my life be different? A life of ‘ifs and buts’.
Desperate to find out how I could improve the quality of my life, I started searching online, and that is how I came across Endometriosis UK Support Network. I am finally in a place where I can connect with people who ‘get me’. The support of my wonderful endo sisters-who are true warriors - sharing our stories makes me feel like I am in a place where I belong. That’s why the work of organisations like Endometriosis UK are SO important for us all. They work, fight and support everyone relentlessly so we can get heard sooner, treatment is more accessible and make sure no one suffers in silence!