A woman who suffers from the same condition as BBC presenter Naga Munchetty says that she goes through tampons “every 20 minutes”.
Nikki Allford, 32, suffers from adenomyosis, an extremely painful condition affecting her uterus. The condition causes the lining of the womb to bury into the muscular wall of the womb.
The severity of the symptoms varies, but often include heavy periods that last for a long time, severe period pain, a feeling of pressure in your tummy and bloating.
Allford has suffered from adenomyosis since she was 19, but was only diagnosed with the condition five years ago.
“Since I was 19 I’ve been back and forth to doctors with symptoms and having surgery and being in constant pain,” the IT worker, from Hemel Hempstead, explains.
“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. I had to have surgery as it was just a mess in there and the doctor's thought I had ovarian cancer.
"The surgery was to see if I did have cancer, but I in fact had cysts on my ovaries but I did not get a diagnosis. It was great to see Naga Munchetty reveal she too suffers from adenomyosis.
“I hope this gets more people talking about it and leads to more doctors getting clued up on what it means.”
Mistaken for endometriosis
Allford says she’s found her experience trying to get her diagnosis “disheartening” and that doctors often thought she was mistaking her condition for endometriosis – a condition that sees the lining of the uterus grow outside of the uterus.
“I’ve been repeatedly asked, ‘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,” Allford recalls.
“I don’t understand the reason behind why it’s not well known. There are millions of women suffering from this.”
Adenomyosis affects around one in 10 women of reproductive age in the UK, and one of the only ‘cures’ for the condition is to get a hysterectomy, a procedure that removes the womb completely.
Allford says she has “begged” doctors for a hysterectomy but they have “simply refused”.
“I begged a doctor to have a hysterectomy when I was 29, but they said ‘what if you want to have more kids in the future?” she explains.
“I already have three wonderful children and I want to go and enjoy my life with them.”
Allford says some of her symptoms include feeling full all the time and being extremely bloated.
“I’ve been asked before when I’m expecting - when actually I’m just having a flare up,” she adds. “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. I cry every day about it, but I think people are becoming more aware of it."
Additional reporting by SWNS.
Watch: Endometriosis - Women in severe pain put off GP visits because of 'medical gaslighting' and thinking pain is normal