'My chronic illness has cost me £160,000 in 18 months'

Can you tell me a bit about you and your life?

Hi I’m Jen! I’m an online educator for endometriosis and adenomyosis - both of which have completely turned my life upside down. I went to the University of Cambridge and studied Law and Economics, and then explored a career in corporate property but it wasn’t really my thing, so I actually left to set up my own wedding cake company!

It was hugely successful and we did some incredible things over nine years. Hundreds of wedding cakes, thousands of celebration cakes, hundreds of thousands of cupcakes and we baked for some incredible people. King Charles (then Prince Charles) even called us “genius” and we shipped cupcakes out to New York to appear on a national TV show.

But my pain and other symptoms were increasing - and you can’t really call in sick for someone’s wedding. My husband would work a twelve hour day and then come to the bakery to make sure I didn’t miss any orders because I was curled up on the floor unable to move. Eventually, in 2021, I made the decision to close the business because it had just become untenable.

How and when were you diagnosed?

I was in so much pain that I was vomiting, unable to move, crawling on the floor, and bleeding so heavily I would pass out. After 22 years of symptoms I was diagnosed, and last year I had a radical surgery for endometriosis to prevent organ failure and a hysterectomy to remove the adenomyosis. My fertility and the chance to have children was yet another thing these diseases took from me.

What do you do for a living now?

I’m now an online educator and campaigner, which - while it obviously doesn’t pay masses - is hugely rewarding, and to be honest being able to pick up a bit of financial independence after relying on my husband for two years is BLISS. Bonus that it’s doing something I’m incredibly passionate about!

Have your diseases impacted you financially?

Over the last 18 months since my diagnosis, endometriosis and adenomyosis has cost my family around £160,000 in direct and indirect costs. And I am not alone. The official statistic for endometriosis is that 1 in 10 women or AFAB have the disease… although truthfully that number is likely to be much higher! One aspect that just isn’t spoken about is the financial burden of that.

Let’s talk about it!

It includes indirect costs such as loss of earnings, but also the direct costs; prescriptions, trying private and holistic treatments (I’ve tried everything from acupuncture, physiotherapy, CBD, hypnotherapy, tens machines etc) and then the actual cost of my private treatment. Unfortunately with endometriosis, the NHS waiting lists are exceptionally long, with many waiting years for their surgeries. I simply couldn’t wait that long but I hate how many people are suffering and that just isn’t an option for them.

It wouldn’t have been possible for me either if not for my parents. I’ve been exceptionally privileged. It’s also vital that an endometriosis specialist is performing the surgery, and we have precious few of them in the UK (and world!), and so going privately ensured I had control over who was performing my surgery.

A poll on my Instagram recently revealed that a terrifying chunk of people were putting the cost of their treatment on credit cards, and taking out loans - even a second mortgage. The largest proportion were borrowing from family like me.

What should the government/policy makers be doing better?

Where do I start?! We need to increase education about endometriosis across all touchpoints. The system needs a radical overhaul and I’m proud to be a tiny part of trying to make that happen. We need funding. Desperately. Funding for research, for specialists, for theatre spaces, hospital beds and multi-disciplinary teams. We need true co-production of research and policies and to fully engage and collaborate with grass roots organisations and campaigners that are active in communities. And we need prioritising. For too long endometriosis patients been dismissed and trivialised. But our lives are being ruined.

What does the future hold - any plans, worries or hopes?

To raise awareness, to support those diagnosed on a personal level and to change the landscape for future generations at an institutional level. On a personal level; our mortgage is up for renewal soon. I genuinely have some sleepless nights worrying about it, as my income has dropped so much from when it was taken out.

Do you have any advice for those where you were?

Be open. Don’t suffer in silence - there are so many of us in the same position. You can apply for PIP - it is far from a perfect system but can be a lifeline for many. If you are forced to look for private treatment, really do your research and find an expert in this incredibly complex disease.

Is there anything else you would like to add?

I guarantee that a good chunk of your audience will know this topic all too intimately. Somehow the subject of cost surrounding the disease is always sticky to everyone. March is Endometriosis Awareness Month so I want to encourage everyone to have share their stories and troubles!