- EXCLUSIVE: Woman goes commando due to ‘blinding agony’ from nerve damage
- Marion Jones suffers from pudendal neuralgia, which affects one in 100,000 people
A woman whose life has been “put on hold” by a rare pelvic disease says the pain is so horrific she can’t even wear underwear.
Marion Jones, from Herefordshire, goes commando every day due to ‘burning agony’ from nerve damage which doctors say was caused by an operation to remove her womb.
The 68-year-old suffers from pudendal neuralgia – an incurable long-term pain caused by damage to the pudendal nerve, which transmits information about sensations in the buttocks and genitals.
The retired bank worker said wearing underwear, leggings and jeans makes the pain “unbearable”, so avoid wearing them at all.
The “debilitating” condition, which affects just one in 100,000 people, has forced her into early retirement and giving up most of her social life.
Ms Jones’ symptoms began in August 2011 after she had a hysterectomy – surgery to remove the uterus.
A gynecologist recommended the procedure to treat her pelvic organ prolapse, which is when one or more organs in the pelvis – such as the uterus, bowel or bladder – slip out of their normal position and bulges in the vagina.
It causes a feeling of heaviness around the lower abdomen and genitals, discomfort in the vagina and difficulty urinating.
A hysterectomy – which takes up to three months to recover – aims to relieve pressure on the walls of the vagina and reduce the risk of the prolapse returning.
Ms Jones said: ‘I don’t have any children and was past childbearing age so the operation didn’t really worry me.
“I had also read about several other women who had suffered prolapse, undergoing hysterectomies at the same time, so I assumed it was common practice.”
“Doctors advised that it would take some time to heal inside and offered cream, as well as various pills.”
But shortly after the operation, Ms Jones began to suffer from searing pain, which she described as a ‘drill’ attacking her vagina and buttocks.
She said: “I couldn’t take the pain anymore so I saw a vulva specialist three years later for a checkup which left me screaming in agony.”
She was referred to a gynecologist who diagnosed her with pudendal neuralgia – a form of long-term pelvic pain, described as “very uncomfortable” and “distressing” by the NHS, caused by damage to the pudendal nerve.
This nerve carries movement and sensation information from the genital area.
When damaged, it can cause burns, crushing, shooting and stinging. Symptoms also include an increased sensitivity to pain, which can make clothing uncomfortable.
Studies estimate that it affects one in 100,000 people worldwide and that women are twice as likely to suffer from it as men.
This suggests that more than 500 adults in the UK and 2,500 in the US have the condition.
Ms Jones told NeedToKnow.Online: ‘I feel lonely sometimes, when I could really cuddle or hang out with friends.
“I haven’t had any intimacy since my operation, but I always hoped to find a new partner after my divorce – now all hope is gone, because my life is on hold.
‘Jeans, leggings, tights and underwear make the pain unbearable, where I decided to stop wearing them altogether and go commando.
“All this burning agony made me quit my job because I couldn’t bear to sit at a desk all day and find it hard to leave the house because my pelvis is on fire.”
In an effort to help others and find support for herself, she started a Facebook awareness group called Pudendal Neuralgia and Pelvic Pain UK. She has also published a book titled Bits and Butts AZ of Pudendal Neuralgia.
Ms Jones said: ‘Mentally it changed me as a person because I loved going out with friends – but now my day ends at 6.30pm.
“I have always hoped to find a cure for this disease through research, medication or treatment, but so far nothing is helping me.
“I’ve tried every medication available, which has only bothered me, and I also see a chiropractor monthly for acupuncture.”
“I created the Facebook group to feel less alone. Now we have over 1400 members and I still can’t believe how many people are suffering from this disease.
“I was so looking forward to enjoying my retirement, but now it’s not possible. I really hope medical professionals start to take this more seriously.