Trying to shine a light on endometriosis sufferers

For Endometriosis Action Month, Anita Nneka Jones talks to Prudence Wade about her frustrating journey – both before and after getting diagnosed

Like many women, it took Anita Nneka Jones years to find out she had endometriosis. From around 14 years old, Jones – who is now a presenter on the Premier League channel – says she started getting “intense period pains”. They were “overwhelming”, she recalls, to the extent “it had an impact on my life, because I missed so much school”.

Now 31, Jones says she “accepted painful periods were going to be a part of my life” and tried various things to help, including going on the pill which gave some relief. Around the time she was 26 or 27, she says: “All of a sudden, the pain started to increase again, but something that was distinct this time was I was having pains in my pelvic area when I wasn’t bleeding as well.” When she was going through this, she saw a friend of a friend post on Instagram about being diagnosed with endometriosis, and Jones “identified with virtually all” the symptoms she mentioned.

“Something clicked for me when I saw this post, and her talking about how much damage this thing had done to her,” Jones says. “I still wasn’t fully aware of what it was then.” But she saw a gynaecologist in 2018, and was diagnosed with endometriosis after having a laparoscopy.

Her story isn’t unusual. Endometriosis UK (endometriosis-uk.org) says getting diagnosed might “take some time”, as “the symptoms of endometriosis are very similar to other common conditions”. Awareness and understanding has been an issue too. The charity says there is an average of seven-and-a-half years “between women first seeing a doctor about their symptoms and receiving a firm diagnosis”, yet one in 10 women of reproductive age in the UK have endometriosis.

Since her diagnosis, Jones’s journey with the condition has been tough. At points, she’s learned to live with it – she even thought it might have been under control, but the pain would later return. She has had surgery, and taken the decision to freeze her eggs.

While everyone has different experiences with endometriosis, from Jones’s perspective, this is what she wishes people knew about the condition:

You might struggle to be believed

Feeling the need to “fight your case” is “unfortunately, a common theme when you talk to women with endo”, says Jones, who is an ambassador for Endometriosis UK.

She describes “fighting for your case to be believed – that the pain you’re experiencing is not a figment of your imagination, you’re not a drama queen, you don’t have a low tolerance for pain”. That’s why Jones felt some kind of relief when she got her diagnosis, because she realised “all this time I’ve said something was wrong with me, I wasn’t making it up. There’s actually a reason for it”.

Jones urges women to “believe your intuition – if something doesn’t feel right, especially with your period, don’t hesitate” to really highlight the pain you’re feeling.

It’s something she wishes she had done more of.

Some people find it extremely painful

Every person experiences endometriosis differently, but Jones describes the physical pain as “feeling like someone was stabbing me in my private area, or raking a hanger left to right – and intense migraines”.

She adds: “If I knew when my period was going to be, I’d shuffle my calendar around so I wasn’t doing too many things, because you’re so tired. You know you’re probably going to have to cancel the plans anyway because of either migraines or pain, and you just can’t get out of bed.”

There can be mental anguish as well

“When you’re given the diagnosis, you go through – at least in my case – this whole period of feeling like utter crap for not pushing further. I had real regret and guilt that I had to talk to a therapist ... Because I don’t feel like I fought my corner enough, and it took that long to get the diagnosis.”

Review your options as soon as possible

In Jones’s experience, there was a lot she didn’t know about endometriosis – before and after her diagnosis. She was under the impression she wouldn’t need to worry about fertility issues until she was around 32 but she found out endometriosis can severely affect fertility, particularly if you’ve undergone surgery, as she had.

This spurred her to freezer her eggs – something she knows she’s “extremely fortunate” to be able to do, as it’s not an inexpensive process. That’s why she urges people to “start to review your options” as soon as you’re diagnosed, so you can make the decisions that are right for you, and aren’t left with feelings of regret.