By Michelle Roberts and BBC Radio 5 Live
The BBC's Naga Munchetty has revealed she has a debilitating womb condition.
Naga lives with a changeless symptom that tin go truthful acute that she has to scream. A flare-up astatine the play was truthful atrocious her hubby called an ambulance.
The presenter told her BBC Radio 5 Live listeners: "The symptom was truthful unspeakable I couldn't move, crook over, beryllium up. I screamed non-stop for 45 minutes."
One successful 10 women is thought to person adenomyosis, yet it tin often spell undiagnosed for years.
Naga has been sharing with her listeners her agonising hold for answers and a treatment.
She said: "Right present arsenic I beryllium present talking to you: I americium successful pain. Constant, nagging pain.
"In my uterus. Around my pelvis. Sometimes it runs down my thighs.
"And I'll person immoderate level of symptom for the full amusement and for the remainder of the time until I spell to sleep."
Other women person been successful interaction sharing their experiences.
What is adenomyosis?
- It is simply a information wherever the womb lining (the endometrium) grows wrong the muscular partition of the womb too
- Although not life-threatening, it tin origin terrible symptoms
- These see highly dense and achy periods, a bloated tummy and symptom during enactment oregon erstwhile going to the toilet to poo
- Contraceptives tin beryllium tried to spot if they lessen the symptoms, but for immoderate women, country to region the womb, a hysterectomy, is the lone solution
Naga, 48, says she is resisting the hysterectomy way astatine the moment.
Jen Moore, 34 and from Cambridge, had a hysterectomy precise precocious to dainty hers.
Naga recorded an interrogation with her successful the days starring up to the surgery.
Jen said: "I cognize it's the close determination for maine and my body. But it's a monolithic determination astatine immoderate age."
Jen does not person children but says she ever thought she would person the enactment oregon chance. "So determination is simply a small spot of affectional rollercoaster going on."
She says the symptom of adenomyosis "feels similar I person a bowling shot sat wrong my pelvis pushing retired connected the bones from the wrong retired trying to interruption them. It's excruciating... It's relentless."
Like Naga, Jen's symptoms began arsenic a teen erstwhile she started her periods.
"I vividly retrieve being 11 and connected my parents' chamber level incapable to basal up straight, passing retired each period from symptom and humor loss."
When the household sought aesculapian help, Jen was enactment connected the contraceptive pill to "regulate" her hormones and sent location with nary different investigations oregon a diagnosis.
Jen remained connected it until she turned 30, inactive experiencing monthly bleeds that were "crazy heavy" and "like a fearfulness scene".
"Whenever I would spell to the doc to explicate it's happening, again, I was conscionable told 'it's normal'. At 1 constituent I was told to 'stop making a fuss'.
"So yet you conscionable commencement questioning yourself, don't you? Almost gaslighting yourself."
Jen persevered with seeking assistance though and was precocious referred to a specializer doc who diagnosed her information - adenomyosis, positive different period-related occupation called endometriosis.
Jen says: "I'm angry, I'm infuriated, I americium devastated. I'm each of these things."
She got bushed of radical saying "but you don't look sick" and turned to her make-up creator friend, Kate, to assistance amusement what the information feels like, by coating bruises and cuts connected her abdomen and thighs. She has posted photos connected Instagram to rise awareness.
GP Nighat Arif, who specialises successful women's wellness and has written a publication astir menstruation and menopause, says consciousness astir the information among healthcare professionals is improving.
But she says it tin beryllium hard to "join the dots" and marque a speedy diagnosis due to the fact that the symptoms tin beryllium mistaken for different things and tin alteration betwixt women.
"Even connected an ultrasound scan the diagnosis of adenomyosis tin beryllium missed oregon not seen. Many younger women besides tin get placed connected hormonal contraceptive treatments to negociate dense periods and truthful 'mask' the diagnosis," she says.
Consultant gynaecologist Liza Ball advised: "Period issues often get 'normalised', which is frustrating. Ask to spot a GP with gynaecology grooming to sermon attraction options that suit you.
"Don't endure successful soundlessness and question assistance if you deliberation you person adenomyosis."
The Department of Health and Social Care says it is committed to improving the wellness of women - it precocious launched a 10-year Women's Health Strategy for England - and volition beryllium updating wellness accusation provided connected the NHS website to supply much item connected conditions specified arsenic adenomyosis.
'It crushed me'
Julia Allen from Cardiff was yet diagnosed with adenomyosis and endometriosis successful her mid-forties aft decades of suffering.
She says she was "back and distant to the doctor" from the property of 14 owed to precise dense and achy periods.
"I would person to instrumentality spare apparel to schoolhouse and yet enactment owed to the flooding I experienced. This was mortifying, particularly successful a clip erstwhile radical didn't speech astir these kinds of things," she says.
"Over the years I was told it was irritable bowel syndrome oregon constipation. I yet had a scan, wherever speckling successful my uterus showed up. The GP turned to maine and said 'I don't cognize however to dainty you' and that was that."
Julia says she was ne'er capable to conceive, contempt repeated rounds of IVF treatment, which she believes whitethorn person made her adenomyosis worse.
"When I yet had my hysterectomy my advisor came to my country and said 'if I had seen you 20 years earlier, you could've had a baby'. It crushed me. My organs and insides person been ravaged."
Have you been affected by the issues raised successful this story? Help and enactment is disposable via BBC Action Line.