Why I Volunteer: Michelle's Story
I had always suffered problems since starting my period on my 11th birthday (such a good birthday present!). I'd miss a week a month from school stuck in bed in agony with no one to understand or listen. It was a very lonely time. At the age of 23 in 2016, I was diagnosed with endometriosis, I had never even heard of it before. It was a relief to finally know what I had been suffering with and to prove that it wasn’t in my head.
I was at a dark time in my life living with this illness as I felt it was controlling and ruining my life. Thankfully, a new group in my area had just been set up and I joined as it’s first member. It was a lifeline to know I wasn’t the only one in the world with this despite it feeling that way.
Shortly after, I had the opportunity to become a group leader at the Forth Valley Group and I knew I had to do it as I remembered how it felt to be alone in a dark place with no way out and I didn’t want anyone else to go through that. I hated how the condition can sometimes control lives and bodies so much, yet so many still don't know about it. So, I use a lot of my energy to try to educate people as much as I can and I’m passionate about bringing about some change as I feel it’s been brushed under the rug for far too long.
I’ve noticed that having the group and being able to support other sufferers has allowed me to regain some of my power that I felt endometriosis had taken from me.
I always aim to make sure the group is as relaxed and welcoming as possible, I like the meetings to be casual with no pressure to speak if someone doesn’t want to, a safe space for people to come and be around fellow sufferers. That in itself takes the weight off peoples shoulders, which makes a massive difference and it means a lot to me to be able to help people in this way.
Thank you Michelle for sharing your volunteer story with us and for your support for those with endometriosis in your local community. If you'd like to get in touch with the Forth Valley group, or find your local group, please visit our Support Groups page.
Jakia's Story
"I started my period at 9 years old and we hadn't had 'the chat' at school yet. I thought I was dying. Since then, my pains were frequent and my periods painful and heavy.
Back then, the only treatment offered was to be put on the pill. It helped slightly, but the pains got worse and I wasn't any closer to getting answers.
Fast forward a few years and my absences from work were getting worse. I would have to ring and explain how I couldn't stand up or had heavy bleeding. Discussing with senior managers why my absences were so frequent was nothing short of embarrassing.
I am now 40 years old, have had three surgeries and have diagnosed endometriosis and adenomyosis. Coming from an Asian background, talking about this, or anything gynecological/sexual health related had always felt taboo and many of us would only get information from the classes provided during the last years of junior school. When seeking advice, I was fobbed off and asked varying questions of 'why wasn't I married?', 'don't you want children?'.
This prompted me to be more open about having my condition. I feel more dialogue and transparency is required to be open about these issues, so that we are prepared from a young age. Luckily, I met support group leaders and joined my local group, and I haven't looked back since. Having like-minded sufferers is a comfort and not having to explain why you feel rubbish, or low made things feel easier.
Currently, I am undergoing induced medical menopause, with an impending hysterectomy*. I am pleased now to have a medical team who are empathetic and considerate and do not judge me based on my age and ethnicity."
Thank you Jakia for sharing your story.
Discussing endometriosis is not always easy. If you feel that talking to someone with lived experience may help, our support services, run by trained volunteers are here for you. Find out more here.
*Treatment and management options for endometriosis vary from person to person, it is always best to discuss your unique needs with your healthcare team.
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."