Holly's story
"If going through my university experience with suspected endometriosis taught me anything, it's that I am still capable of living a fulfilled life despite the pain and fatigue that often controls my day-to-day life."
I'd often be seen in nightclubs wearing an electronic pain relief device and my bag was always full of heat pads and painkillers, though I missed out on things when the pain got too bad. I would often have to leave lectures early when the pain became unbearable. It was frustrating that my education was being compromised.
Since endometriosis still isn't talked about as much as it should be, I felt I was constantly explaining to lecturers, managers and peers, what I was going through and why I had to have certain routines in place, which often felt taboo rather than empowering.
It made my experiences with things like sex and alcohol especially complicated. These are things I feel are seen as ‘rites of passage’ in student life. This took a toll on my mental health, it was hard to feel 'normal' when struggling with things that weren't a big deal for my peers. It was also difficult feeling that I came across as lazy when living in a house share for the first time.
After seven years of visiting the doctor, I am now (at time of writing) preparing for my first laparoscopy. I'm keen to open a wider and more positive conversation surrounding the condition. I found it incredibly comforting to know there was not only a word for what I was experiencing, but also a community of people going through the same. From there, I was able to find resources and start healing mentally."
Since sharing her story, Holly has shared the brilliant news with us that she will be graduating from University with a 2:1. Holly hopes that in sharing her story, she can help others to feel less alone a that they too can have a fulfilling student experience despite the challenges endometriosis can bring. Congratulations Holly!
Endometriosis UK's specialist advisor Joanne Hanley says, "With a lack of awareness, those with endometriosis feel they need to explain their condition and symptoms to gain understanding from others. With changing environments, whether this be in education or work settings, having to have these conversations with new people can be daunting.
Although overwhelming, it can be helpful to speak out about your diagnosis, whether this be with a friend, teacher/lecturer, or colleague. I advise all adolescents and young adults in education to reach out to their school nurse or teacher, those within colleges and university should access student support and student services for guidance and support.
Creating awareness and speaking out about your endometriosis and symptoms allows for adjustments to be made to support you. Simple things like toilet passes and access to sanitary products can help reduce worry and stress."
Lydia's Story
“On 14th May 2023, I received my diagnosis of endometriosis following a diagnostic laparoscopy. Although this isn’t necessarily the best news, I’m overwhelmed with relief.
My periods have always been a struggle. I remember the pain starting when I was around 19. I would be rolling around in agony for days before I would start bleeding. I would be tired and anxious the week before and during my cycle. My university work suffered, and I felt like the world’s worst employee because I was so spaced out, tired, or would have to call in sick during my cycle. In my experience, there could often be a discrepancy in what I shared with some bosses and what they actually understood, which made me feel ashamed.
After countless GP appointments and speaking with different practitioners, I was told repeatedly that my pain was most likely normal and is just “the sad reality of being a woman”. As a member of the LGBTQ+ community, I’ve been in long-term relationships with women and this felt difficult to approach at most of my initial appointments. It seemed to be less understood and when some of the GPs I spoke with asked about painful sex and contraceptives, as soon as I would say that I’m in a relationship with a woman the questions would stop. I don’t know if this made them feel awkward, but to me it felt like because I don’t have sex with men, then it was assumed that painful sex wouldn’t be one of my symptoms.
From my experience with seeking diagnostic treatment for Endometriosis, it seemed as if there was less willingness to listen. A lot of the GPs I saw would just assume I was straight which just creates a level of awkwardness. As a gay person you do accept that ‘coming out’ isn’t a linear process and the first time you do it will never be your last. However, I do hope that with time, this becomes less of an issue because I know for some people, this can be really difficult and might prevent them from seeking help for their Endometriosis. This is why Pride is so important and continues to be key in breaking down barriers that still exist for queer people. Although so much progress has been made towards equality, each year Pride acts as a reminder that there are still people in this world that do not feel that they can live authentically as who they are.
I moved near Liverpool when I got the opportunity to do a job I’d always dreamed of, working for an MP and registered with a new GP. This was a blessing in disguise. My new GP was the first I had seen that really listened to me and gave me a referral to Hospital immediately. It’s taken two years to get to the top of their list due to COVID and wait list pressures which I completely understand. I got my letter a few months ago inviting me to see the consultant and just yesterday (at the time of writing) had my diagnostic laparoscopy and subsequent diagnosis.
Today, I feel sore and little out of it, but mostly I feel relieved and so thankful to all the practitioners that believed me and helped me finally get answers. I would urge anyone that is suffering to always keep pushing for answers and don’t accept that this is your fate.”. I’ve followed Endometriosis UK from afar throughout this process and their online presence has been a source of knowledge and comfort. For this I’m very thankful and certainly want to find ways to get more involved.”
It is unacceptable that, like Lydia, so many feel that their experience is undermined due to their sexuality. This Pride Month and always, Endometriosis UK campaign for vital change for those facing additional barriers on their endometriosis journey. You can read more about our work to support those from LGBTQIA+ communities here.
Do you have a story to tell? We’d love to help raise your voice. Share your story here.