A secret group of endo entrepreneurs exists out there.

Three of my friends have endometriosis. Another, who had chronic thrush (candidiasis) for years, trained to be a herbalist to help other women manage their health problems. Another woman I know has dysmenorrhea and created a service, products, and books to help menstruators have better periods. A friend who had horrendous (suspected endo) periods is now a best-selling author; another with vulvodynia created a women’s health brand.

Despite this evidence of creativity and passion, I don’t think my group of friends is unique.

I’ve seen it more over the years. Those whose lives have been damaged by endometriosis or other gynecological conditions have risen like a phoenix to share their stories, help others, and motivate change.

Alisa Vitti was driven by her polycystic ovary syndrome to find a way to bio-hack her hormones and live in harmony with her body, resulting in the Flo Living program. Emily Hoyle’s excruciating period pain led her to launch Good Blood, a company that makes merchandise symbolizing menstruation, with a percentage of every sale going to charities that benefit women. Jessica Drummond’s postpartum experience inspired her to launch the Integrative Women’s Health Institute.

The list goes on and on.

We struggle, but we’re resourceful. Endometriosis and other conditions have pushed us so far into a corner that we’ve no choice but to come out fighting: to find solutions, make adjustments, and seek change.

I spent five years trying on different roles to create a work-life balance that suited me, until I realized that the working world was not set up for people like me. I was attempting to fit into a system that wasn’t sustainable or suitable for my health.

So I began creating my own working world. One where I could choose my breaks, have time to exercise in the middle of the day to support my energy levels, start a little later, and create the right environment to deal with my brain fog.

And others are doing it, too.

Last month, the UK parliament held a debate on workplace support for women with endometriosis. Following are some astounding statistics from research carried out by Ph.D student Vickie Williams that were shared during the debate:

• In a study of 7,000 women across 52 countries, over 40 percent had given up or lost jobs due to endometriosis. Others had gone part-time or become self-employed.
• Women with endometriosis lose 10.8 hours per week due to pain.
• Women with endometriosis lose £5,757.72 ($7,420) a year due to lost workdays.

The typical 9-to-5 is not working for us. Many of us warriors are so fired up about the situation that we’re creating businesses out of our passions. We’re finding ourselves in often-desperate situations, but we’re gathering our strength and harnessing our innovation to instigate much-needed change in the world while empowering others to do the same.

So if this is the case, why aren’t more of us talking about it? As a freelancer comprising a team of one, I rely on listening to business podcasts, reading blogs, and taking courses to earn money to pay my bills. I seek knowledge and motivation in these resources because I don’t have colleagues to bounce ideas off or a company that hands me a paycheck every month. But these resources aren’t always relevant to me. The entrepreneurs I follow are often healthy with crazy amounts of energy and don’t face the same challenges I do.

So isn’t it about time, with 40 percent of us being forced out of traditional workplaces, that we had more resources for people like us? Those of us who are working for ourselves while managing a chronic condition need grants to help us start our businesses, financial support to allow us to go part-time, and resources to help us thrive as both business owners and endo warriors. Sure, employers need to do more so those who’d prefer to can stay in their jobs, but those who want to try the entrepreneurial path should receive support, too.

Like everything with endo, we need to create a community by sharing our stories and successes.

It’s time we started to build.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.