How People on the Internet Help Me Navigate Endometriosis

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After my endometriosis diagnosis, I honestly didn't know where to start when it came to alternative treatment options. I'd already had surgery, which did help my symptoms, but I was by no means cured (since, spoiler alert: there is no cure). I found myself needing more than what doctors were offering. There was very little information given to me, and after being told by a specialist to just return when my pain got "bad enough for another surgery," I realised I was going to have to do some research for myself and figure out how to minimise my symptoms in other ways.

If you're unfamiliar, endometriosis affects 1 in 10 women, but despite being a common condition, it's under-researched and very often misdiagnosed — so much so, the average diagnosis time is a staggering 7.5 years.

I've had multiple appointments with doctors about my endometriosis, and although I couldn't survive without the NHS and absolutely appreciate it, after asking my consultant what dietary changes I could make to ease inflammation, I was told "there is no scientific evidence to prove diet makes a difference, so that won't help." A specific "endometriosis diet" does exist and whilst there aren't conclusive studies on its effectiveness, I did find this book helped me with triggers. I knew I had to take matters into my own hands. But it wasn't just private healthcare or specialists I turned to for support, it was strangers on the internet.

I found support groups, personal blogs, and Twitter accounts dedicated to supporting people with endometriosis and sharing experiences. I followed these accounts, read up on their stories, and realised that I wasn't alone in my unpredictable symptoms. I got in touch with them while researching ways to cope day-to-day with the condition and ended up communicating with many on them on a semi-regular basis.

Their conditions vary, some also have adenomyosis, some are unable to continue working, and some are sadly sharing their experiences with infertility. They share their struggles, their triumphs, and their experiences with different treatments; offering support that you won't find in a doctor's office. Fortunately, I am still able to work and my endometriosis isn't as severe as a lot of these women, but they still offer support in a way that others many not understand. I am still trying to figure out how to adapt my life to not "overdo it," this means finding exercises that don't aggravate my pain, but still allow me to be active. One of these ladies suggested yoga and now it's an integral part of my routine to keep my pain minimal.

The online community is also a great way to communicate with other people about their experiences with treatments that aren't yet widely researched. I asked a few people what their experiences were with Zoladex infections, as this is a treatment I was offered. I came to the conclusion (with my doctor's help) that, actually, it wasn't a path I was ready to go down yet. Thanks to first hand advice from people really going through it, I was able to make an informed decision.

Here's to all the people on the internet who literally help each other to get through a day at a time, despite the difficulties and pain that get in the way. The internet offers a support system that wasn't available to the generation before us and I'm so grateful to have it.