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A mother battling the same agonizing womb disorder as Naga Munchetty has told how doctors also dismissed her plight, urging her simply to “move on”.
Nikki Allford, 32, has adenomyosis, a little-known condition in which The uterine lining burrows deep into the muscular wall of your uterus.
Yesterday, BBC presenter Munchetty, who has been suffering since she was 15 but was only diagnosed at the age of 47, told MPs they were not taking her seriously and urged her to “suck it up” for more than three decades.
Her battle has left her, at times, screaming in agony and in pain so intense she could lose consciousness.
Allford has suffered similar agony, describing her cramps as “so intense they feel like labor contractions” and revealing she has to layer pads on top of each other to cope with heavy bleeding.
Nikki Allford, 32, has adenomyosis, a little-known condition in which the lining of the uterus sinks deep into the muscular wall of the uterus.
The severity of symptoms varies greatly, but often includes heavy periods that last a long time and severe menstrual pain.
Other women may experience swelling and pain during sexual intercourse.
Allford, from Hemel Hempstead in Hertfordshire, has been living with the disorder since her teenage years, although she was only diagnosed five years ago.
Speaking of her own battle with adenomyosis, the IT worker said: ‘Since I was 19 I have been going back and forth to doctors with symptoms, had surgery and been in constant pain.
‘By 2010 I was going to the doctor literally twice a week.
“I had extreme bleeding and often collapsed on the floor from the pain.”
Ms. Allford recalled a doctor telling her: “You just have to keep going.”
Ultimately, Allford underwent surgery because doctors feared she might have ovarian cancer, a disease that can cause similar symptoms.
Following Ms Munchetty’s appearance before the Women and Equalities Committee, Ms Allford said: “It was fantastic to see Naga reveal that she too suffers from adenomyosis.
“I hope it gets more people talking about it and more doctors knowing what it means.”
Allford stated that many health professionals were completely unaware of the disease and others were simply ignorant of it.
She said: ‘I have been repeatedly told “do you mean endometriosis?”
‘After I told a woman I saw at an appointment that I had adenomyosis, she told me I was pronouncing endometriosis incorrectly.
‘I don’t understand the reason why it’s not well known. There are millions of women who suffer from this.”
Allford has suffered similar agony, describing her cramps as “so intense they feel like labor contractions” and revealing she has to stack pads on top of each other to cope with heavy bleeding.
Naga Munchetty first revealed she had the condition in May, telling her BBC Radio 5 Live show that her husband (pictured in April 2017) had been forced to call an ambulance after a flare-up.
In some cases, surgery to remove the uterus, a hysterectomy (which Munchetty said she resists to avoid early menopause) is the only solution to adenomyosis, although it is not suitable for younger women hoping to conceive naturally. .
Munchetty, 48, told yesterday how doctors dismissed her symptoms and told her “you’re normal” and that “everyone goes through this.”
During an appointment, Allford’s doctor said he had never heard of the disease before and began Googling it on his computer while she sat and watched.
One way to get rid of the immense pain is to undergo a hysterectomy, which Allford has requested time and time again. But the doctors simply refuse, he said.
She said: “I begged a doctor to do a hysterectomy when I was 29.
‘But they say, “What if you want to have more children in the future?”‘
Allford, who has three daughters, ages 13, 8 and 5, has suffered seven miscarriages and does not want any more children.
She said: “I already have three wonderful children and I want to go and enjoy my life with them.”
Charities estimate that around 10 per cent of women suffer from adenomyosis, which is similar to endometriosis and can remain undiagnosed for years.
It occurs where the lining of the uterus (the endometrium) burrows into the muscular wall of the uterus. The displaced tissue then continues to act normally (thickening, breaking down, and bleeding) during each menstrual cycle.
Allford says her symptoms peak around three weeks into her menstrual cycle.
She said: ‘You feel full all the time. You have this extreme swelling that is so intense that it makes you look pregnant.
‘I’ve been asked before if I’m pregnant, when I’m actually having a seizure.
‘When I have period cramps, they are so intense that they feel like labor contractions.
“And the bleeding is so intense that I have to put pads on top of each other and I get clots the size of a golf ball.”
It is not known exactly why adenomyosis occurs. But the NHS notes that women with adenomyosis are “likely” to have a predisposition due to their genes, immune system and hormones.
Ms Munchetty addressed the Women and Equalities Committee alongside broadcaster and former reality TV star Vicky Pattison, who shared her own experience with premenstrual dysphoric disorder.
Vicky Pattison also said doctors made her feel “stupid and ashamed” and “even more invalidated” when she visited them in pain. Her symptoms, including “crippling anxiety,” insomnia and fatigue, were dismissed as premenstrual syndrome (PMS) by doctors across the country, she said. Ms Pattison is pictured with her partner Ercan Ramadan last month.
Allford has created her own support page for other women who also suffer from this little-understood disease.
She said: “I cry every day about this, but I think people are becoming more aware of it.”
Ms Munchetty yesterday told how doctors dismissed her symptoms and told her “you’re normal” and “everyone goes through this”.
This was “especially” prevalent in “male doctors who had never experienced a period and then among female doctors who had not experienced period pain,” she said.
Munchetty first revealed she was suffering from the condition in May, telling her BBC Radio 5 Live show that her husband had been forced to call an ambulance after an outbreak. She told how she screamed non-stop for 45 minutes.
Munchetty, 48, also revealed that she is resisting a hysterectomy to avoid triggering early menopause.
She appeared alongside fellow TV star Vicky Pattison in a revealing discussion with MPs on the issue of women’s health.
The former Geordie Shore star told how she was made to feel “stupid and ashamed” amid her own battle with premenstrual dysphoric disorder (PMDD).