Endometriosis UK Volunteer walks the Camino

Could you tell us a little bit about yourself?

I’m Aneka, a born and bred North Londoner - living in Islington. I’m a bit of a data nerd and have my own social listening agency called Fly On The Wall Digital - it’s my baby! I’m a keen gym bunny and actually trained as a personal trainer a few years ago. 

Could you tell us a bit about the incredible fundraiser you’re taking on for Endometriosis UK?

 I feel so strongly about ending the stigma and taboos associated with endo that I’ve created a campaign called Let's Endo The Silence. First and foremost, I want people to talk about the condition, ask questions, educate themselves, so we can ultimately start normalising conversations about endometriosis.

What motivated you to fundraise for Endometriosis UK?

I’m actually part of the Endometriosis UK team, working as an online moderator for their Health Unlocked forum. The team has been really supportive, when I was diagnosed I called the helpline several times and for the first time in my endo journey, I felt acknowledged and listened to. 

I will be taking on the 500-mile Camino de Santiago for my fundraiser. As a keen trekker, I feel like it’s the perfect challenge for me. This year has been really tough and I can’t wait to be on the camino, wearing my Endometriosis UK t-shirt and raising as much awareness and money as possible.

I know that the money that I raise will go towards people overcoming the impacts of endo, and will work towards a future where everyone has access to the right care and treatments. 

Ending endometriosis starts by saying it. 

My fundraising link is: www.justgiving.com/LetsEndoTheSilence - I will post photos from my trek each day on my Instagram @AnekaH as well as on my JustGiving page.

What was your experience of getting diagnosed with endometriosis?I had been struggling with debilitating pain for around 8 years - not knowing what was wrong with me after being continuously misdiagnosed or ignored by doctors. When I was diagnosed with endometriosis, I found out it had spread across my ovaries, bowel, bladder and lower back. I had to make a really tough decision: either to carry on waiting for the NHS, after already waiting for two years, or go private and pay a significant amount of money out of my own pocket. I wish I had been able to access care quickly through the NHS, and it’s not fair that people are having to pay for surgery that should be provided on the NHS without long waits. I was really struggling with my mental health and found the uncertainty of not having a surgery date secured too hard to deal with.

You’re completely right – it shouldn’t be the case of wait or pay for those with endometriosis. That’s why we’re calling for endometriosis to be given due priority, so that those living with the disease and waiting for care are not left behind. We’re so grateful that you’re raising money for us, to help us continue to campaign to drive down diagnosis time and ensure everyone has access to the right care at the right time!

What have been the main challenges for you in living with endometriosis?It's the uncertainty and the lack of control around the disease. Not knowing if the surgery will help manage my pain is hard to deal with. As well, there’s still such a lack of education concerning the disease and I’ve received so much conflicting information from medical professionals.

What advice would you give to someone who has just been diagnosed?

Pushing for tests really helped me get a full picture of how developed my endometriosis was. I highly recommend making sure you have the right specialist and that you trust them.

Looking back, I wish I had done more research into endometriosis specialists. And you can always ask for a second opinion if you aren’t receiving the right support.