A woman whose life has been ‘put on hold’ by a rare pelvic condition says the pain is so excruciating she can’t even wear underwear.
Marion Jones, from Herefordshire, works as a commando every day due to “scorching agony” from nerve damage that doctors believe was caused by an operation to remove her womb.
The 68-year-old man suffers from pudendal neuralgia, a long-term incurable pain caused by damage to the pudendal nerve, which carries sensory information from the buttocks and genitals.
The retired bank clerk said wearing underwear, leggings and jeans makes the pain ‘unbearable’, so he avoids wearing them at all.
The ‘debilitating’ condition, which affects just one in 100,000 people, has forced her to take early retirement and give up most of her social life.
Marion Jones, from Herefordshire, goes through commando every day due to “scorching agony” from nerve damage that doctors believe was caused by an operation to remove her womb.
The 68-year-old man suffers from pudendal neuralgia, a long-term incurable pain caused by damage to the pudendal nerve, which carries sensory information from the buttocks and genitals.
Ms. Jones’s symptoms began in August 2011 after undergoing 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 womb, bowel, or bladder, slip down from their normal position and bulge into 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 from, is aimed at relieving pressure on the vaginal walls and reducing the chance that the prolapse will return.
Ms Jones said: ‘I have no children and was past childbearing age so the operation didn’t really worry me.
“I had also read about several other women who suffered a prolapse and had hysterectomies at the same time, so I assumed it was standard practice.
“The doctors warned that it would take a while for the inside to heal and offered him some cream, as well as several pills.”
But shortly after the surgery, Ms. Jones began to experience shooting pain, which she described as a “drill” attacking her vagina and rear.
She said: “I couldn’t take the pain anymore, so I visited a vulva specialist three years later for an exam, which left me screaming in agony.”
She was referred to a gynecologist who diagnosed her with pudendal neuralgia, a form of prolonged 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 burning, crushing, stinging, and shooting pain. Symptoms also include 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: ‘Sometimes I feel lonely, when I could really use a hug or go out with friends.
“I have not had any intimacy since my operation, but I always hoped to find a new partner after my divorce; now, all hope is gone, as my life is on hold.
‘Jeans, leggings, tights and underwear make the pain unbearable, where I have decided to stop wearing them completely and go as a commando.
“All this searing agony made me quit my job as I couldn’t bear to sit at a desk all day and struggle to get out of the house because my pelvis is on fire.”
The retired bank clerk said wearing underwear, leggings and jeans makes the pain ‘unbearable’, so he avoids wearing them at all. In the photo: Marion Jones before pudendal neuralgia
The ‘debilitator’, which affects just one in 100,000 people, has forced her into early retirement and giving up most of her social life. In the photo: Marion Jones before pudendal neuralgia
In an attempt to help others and find support for herself, she has created a Facebook awareness group called Pudendal Neuralgia and Pelvic Pain UK. She has also published a book called Bits and Butts AZ of Pudendal Neuralgia.
Ms Jones said: ‘Mentally, it has changed me as a person, as I loved going out with friends, but now, my day ends at 6:30 p.m.
“I have always hoped that I would somehow find a cure for this condition through research, medication or treatment, but so far, nothing is helping me.
“I have tried every medication available, which just messed with my mind, and I also see a chiropractor every month for acupuncture.
‘I started the Facebook group to feel less alone. We now have over 1400 members and I still can’t believe how many people suffer from this condition.
‘I wanted so badly to enjoy my retirement, but now that is no longer possible. I really hope medical professionals start taking this more seriously.
