Forced to choose between her health or job: how endometriosis threatened an entrepreneur’s career

Upon first glance, Florie-Anne looks and speaks no differently from any other young businesswoman. Sporting vibrantly dyed red hair, she comes off as confident, relaxed and well-spoken - one would never assume an underlying long-term health condition looms over her like a dark cloud. Her tone becomes serious as she speaks about her struggles with endometriosis and how it has affected her work.

Endometriosis is a condition where tissue similar to the inside lining of the uterus, known as the endometrium, starts to grow in other areas of the reproductive tract, such as in the ovaries or fallopian tubes. About one in 10 women of reproductive age in the UK suffer from the condition and 10 per cent of all women worldwide have it, according to the Endometriosis UK charity.

Graphic: Sian Hopkins

Born and raised in France, Florie-Anne Virgile, 34, started working professionally at the age of 22 on TV sets and filming on location. Naturally driven and career-oriented, Virgile launched her first TV production company in Paris two years later with her partner at the time and worked exclusively behind the scenes. It was energising but exhausting at once due to the nature of the job, which included working nights and weekends.

"It was an amazing adventure, but at the same time I had this issue that I had to deal with," she says. “Being in this job, it’s clear that as a woman, you have to change a little bit. You have to become more male in your attitude to impose yourself on others and make sure that you’re respected."

Working in the TV and film industry is a very demanding field, and male-dominated. Before she was diagnosed at the time, she was also struggling with fatigue and issues with her thyroid.

"Saying that you’re hurting or need to rest is just not even in the realm of what you can say to other males who want your job and company," she says. "I had to put my health aside in order to do my job, and that’s also how my condition got worse quickly. I just didn’t listen to my body or to the warning signs."

Her friend and co-worker, who was also chief editor of one of the documentaries they were working on, once saw Virgile coming out of the toilet in deep agony and in tears. It took her friend calling out that this was not normal and that she needed to see someone, for her to realise that she needed to take her health more seriously.

Virgile first encountered complications in her reproductive tract in her early teens - a cyst bursting in her ovaries. She went into surgery unsure what it was, nor did the medical staff know either at the time. She was put on the pill shortly thereafter as a quick fix.

"They told me I would have to be on the pill all my life until menopause to make sure this kind of cyst didn’t happen again," she says. "Whilst I was on the pill, I had heavy periods - painful and more tiring compared to my friends, but manageable."

After being on the pill, she began to experience peculiar migraines. That was when she started to develop migraine auras - intense head pains that cause sensitivity to light and sound, which can last anywhere from a few minutes to an hour.

Once again, she had to go to A&E, and they still could not figure out what was happening to her. After speaking to her GP, he advised her to stop taking the pill as it was causing her migraines.

She then saw her OB-GYN who put her on the coil, a copper IUD. It was fine, and she was initially happy with her choice, but that’s when her endometriosis symptoms flared up.

"I started having huge pains - not just during my periods but also during the second week of my cycle," she says. "I had to take super heavy anti-inflammatory drugs, which just didn’t work."

Her eyes momentarily close and her face grimaces as she recalls this time in her life.

It got so bad for Virgile that at one point she couldn’t sleep for several days in a row, couldn’t stand up, and going to the toilet was excruciating. Her quality of life was significantly reduced, and she was simply exhausted.

She tried to see her OB-GYN again a few more times, but she felt like her symptoms were being dismissed and that she wasn’t being listened to.

"I didn’t see her when I was at my worst," she says. "I think as women, we tend to hide our pain, so we forget about the previous pain we were in a few days before because we don’t want to over exaggerate anything."

Then, finally, her OB-GYN suggested she should have a scan done.

Graphic: Sian Hopkins

"The guy who did the scan looked at it and said, 'I don’t know what I’m seeing, but this all wrong'," she says. "It was a very scary moment. He couldn’t find my left ovary and said to me, 'You need to see a specialist, there are some masses in your reproductive tract',"

"I got on the tube, and I was crying, wondering 'do I have cancer?'"

Fortunately for Virgile, she was able to see a reputable specialist in France. After doing an MRI, and going over the symptoms she was finally given clarity and at long last, a diagnosis.

Diagnosed with endometriosis at 26-years- old, Virgile has been in and out of surgery, prescribed different medication and treatments, and endured chronic pain for well over a decade.

Endometriosis can affect women of any age and there is currently no known cure for the disorder, according to the NHS. Although it is a long-term condition and there is no cure, it can be treated with medication and other alternative treatments. It is often quite pain-inducing and can be severe, especially during the menstrual cycle.

This is due to the endometrial-like tissue acting as it normally would (thickening, breaking down, and bleeding with each period/cycle) but because this tissue can’t exit the body, it becomes trapped. This can also cause cysts when they form in the ovaries.

On average, it takes women about eight years to be formally diagnosed with the illness. New guidelines from scientists at University College London and University College London Hospitals will hopefully lead to better treatments and support for women with endometriosis.

With experts welcoming the development in medical care, it could mean a quicker diagnosis for women dealing with the condition. Virgile is currently on the coil and in a much better condition than she was.

"I am quite happy with how I live my life now, despite the fact that I have this condition permanently," she says.

In addition to being put on the coil to stabilise her condition, she watches what she eats, tries to have a better work-life balance, practises sports often, and sees a naturopathic practitioner regularly.

"I know how to say no, I take care of myself more, I try to not work long hours like I used to. I used to work all night to finish a project or a deadline. I won’t do that five days in a row now," she says.

Endometriosis is the second most common gynaecological condition in the UK and costs the country about £8.2bn a year to treat, which includes loss of work and healthcare costs.

Virgile feels it’s vital now more than ever to spread awareness and bring focus to women’s health issues, which are often complicated and misunderstood. She also hopes that women listen to their bodies more and not put any discomfort off until it's too late, especially when it comes to their reproductive organs.

"Periods shouldn’t be painful to the point where you have to stay in bed. You shouldn’t lose too much blood. If you feel like your periods are getting in the way of living a normal life, that’s not okay, don’t wait. Act on it as soon as possible, as it is something that you have to learn to live with," she says.

The causes of endometriosis are unknown, at its worst, the condition can cause fertility complications and a higher risk of ovarian cancer.

However, that’s not putting a stop to Virgile’s endeavours; having moved to the UK from France about four years ago, she now owns her own business.

She currently works as a journalist, TV producer, and is the founder of London-based multimedia story-telling agency, Myth-To-Measure.

When asked if she will stop anytime soon or slow down, she confidently says:

"When you do this work, it’s a work of passion, so it’s been my life for a long time. I’ve hired three more people this year to make sure that I don’t overdo it and that I’m able to manage my health while at the same time effectively run my company."

This is from the Kindred. Identity issue, out now. Purchase the copy through the link here.