A fluffy hot water bottle isn’t a typical symbol of strength, but for Anita Nneka Jones, having the confidence to take hers to work and even share photos of it on Instagram was a major breakthrough.
The 30-year-old Premier League presenter is a vocal ambassador for Endometriosis UK, spreading the word about the debilitating condition that affects one in 10 women, causes serious pain and can result in infertility.
Anita has it, the hot water bottle helps – and she’s no longer embarrassed to say so.
It’s been a long, tough journey to get to this point.
Like most women with endometriosis, a condition where tissue similar to the lining of the womb grows in other places, Anita was forced to wait far too long to get a diagnosis.
The average wait is seven-and-a-half years, but Anita endured 14 before being told the monthly agony she’d been suffering was not, as many doctors had told her, just hard luck.
Problems began when she was 14.
“It felt like a wire hanger was being scraped across my inside, like someone was stabbing me repeatedly,” she recalls. Often sent home or unable to go to class, she missed around 60 days of school.
Despite indications that something was seriously wrong – including a trip to A&E with suspected appendicitis – Anita was told by doctors that “some women get worse periods that others”.
As a teenage girl, she felt embarrassed, didn’t understand that her pain wasn’t normal or know vocabulary like “pelvic pain” and “clots” to express what was happening.
While friends might mention they were on their periods, that was as far as conversations went.
At 18, doctors suggested she take the Pill but that didn’t help either and her mental health suffered.
“It impacted on my social life a lot. I couldn’t plan anything when my period was coming. There was this feeling of dread in the run-up to it.”
Despite textbook symptoms, no doctor ever mentioned endometriosis and Anita never heard a black or mixed race woman talk about it.
In her late 20s, she chanced on a social media post from a friend of a friend who’d been diagnosed with a condition with a strange name.
“I think I cried when I read all her symptoms. I identified with each and every one. At that stage, I was in pain for two weeks of every month, taking strong painkillers and not knowing what was wrong,” she says.
“I didn’t know women who looked like me could get it, that’s one of the reasons I’m so open about it now.”
Anita insisted on seeing a specialist. Endometriosis can’t be detected on scans and in June 2019, she had surgery. She came round from the anaesthetic to be told that, yes, she had the condition.
While it’s news nobody wants to hear, having a diagnosis felt revolutionary.
“It’s given me the confidence to talk about it. It’s empowering. But there are so many women who don’t have that and the fear is that people will think you’re exaggerating.
“You don’t have the words to tell the doctor what’s going on.”
The surgery included a procedure to fix a coil, which caused bruising to Anita’s cervix and left her in pain for six months.
Eventually the discomfort subsided and symptoms did improve, although she recently felt so ill again she had to take time off work.
She follows the “no CRAP” diet – no caffeine, refined sugar, alcohol or processed foods – which has helped many women.
Playing tennis and keeping fit gives her a sense of control and has a positive impact on mental health, although Anita says she’s also learned to listen to her body, be flexible and accept changes to her routine.
“I had to see a therapist when I was diagnosed. I had so much guilt and regret, I was angry with myself for going to the doctors for years upon years and letting them tell me that it was a figment of my imagination. I needed to come to peace with that.”
She also had to process the news that there’s no cure and endometriosis can cause fertility problems.
“It is a very emotionally challenging time – I have to think about my career and ask myself some serious questions like, do I want to go into egg preservation?”
Anita’s followers on social media have been supportive, including the men, who’ve shared their own partners’ struggles.
Now when she’s asked at work why she’s got a hot water bottle clamped to her abdomen, she has no problem explaining exactly why.
“Before my diagnosis, a male colleague asked why I had it – if I was cold. I was dying inside. How do you explain it feels like a bomb’s gone off? Now I can tell them why. That’s the power that comes with a diagnosis.”
- March is Endometriosis Awareness month. Go to endometriosis-uk.org for support
