A mum who suffers from same ‘little known’ condition as Naga Munchetty has periods so heavy she goes through tampons every 20 minutes.
Nikki Allford, 32, suffers from adenomyosis, an extremely painful condition affecting her uterus that causes womb lining to bury into the muscular wall of the organ.
The severity of the symptoms varies wildly, but often include heavy periods that last for a long time, severe period pain, a feeling of pressure in your tummy and bloating.
For Nikki, who was diagnosed five years ago but has been living with the condition since she was 19, it manifests in all of these ways.
The mum-of-three from Hemel Hempstead, Hertfordshire, said: ‘Since I was 19 I’ve been back and forth to doctors with symptoms and having surgery and being in constant pain.
‘Around 2010 I was going to the doctor’s literally twice every week. I had extreme haemorrhaging and would often collapse on the floor in pain.’
After undergoing surgery to see if she had cancer, cysts were found on Nikki’s ovaries but she didn’t receive a diagnosis until years later, which she attributes to misconceptions and a lack of knowledge.
BBC Breakfast presenter Naga Munchetty recently revealed she has the condition, saying the resulting pain is sometimes so bad it ‘takes her breath away’.
The 48-year-old told Radio 5 that she’d spent ‘decades’ going through painful periods, being told she was ‘just unlucky’ or ‘it was one of those things’ before her diagnosis eight months ago.
‘It was great to see Naga Munchetty reveal she too suffers from adenomyosis,’ commented Nikki. ‘I hope this gets more people talking about it and leads to more doctors getting clued up on what it means.’
Nikki, who works in IT, says her experience with healthcare professionals has been extremely disheartening, with many completely unaware of the illness and others simply disregarding her previous diagnoses.
During one appointment, the doctor confessed he had never heard of the illness before and began googling it on his computer while Nikki sat and watched.
She said: ‘I’ve been repeatedly told “do you mean endometriosis?”
‘After I told one woman who I saw for an appointment that I had adenomyosis, she told me I was pronouncing endometriosis incorrectly.
‘I don’t understand the reason behind why it’s not well known. There are millions of women suffering from this.’
One way to get rid of the immense pain is to have a hysterectomy, but Nikki’s requests have so far been refused.
‘I begged a doctor to have a hysterectomy when I was 29, but they say “what if you want to have more kids in the future?”‘ she said.
Nikki – whose daughters are aged 13, eight and five – has been through seven miscarriages and does not want any more children, saying she ‘wants to go and enjoy [her] life’ with the three she has.
Describing her symptoms, she explained: ‘You feel full all the time.
‘You also have this extreme bloating that is so intense it makes you look pregnant. I’ve been asked before when I’m expecting – when actually I’m just having a flare up.
‘When I get period cramps, they are so intense they feel like labour contractions.
‘And the bleeding is so heavy, I have to layer sanitary towels on top of each other and I get golf ball size clots. My mum calls it putting my “belt and braces” on.’
Nikki has set up her own support page for other women also suffering from this little understood illness, and hopes raised awareness will help improve treatment options.
‘I cry every day about it,’ she added. ‘But I think people are becoming more aware of it.’
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