- EXCLUSIVE: Woman goes commando because of ‘scorching pain’ from nerve damage
- Marion Jones suffers from pudendal neuralgia, which affects one in 100,000
A woman whose life has been put on hold by a rare pelvic condition says the pain is so terrible she can’t even wear underwear.
Marion Jones, from Herefordshire, goes commando every day because of “scorching pain” from nerve damage that medics say was caused by surgery to remove her uterus.
The 68-year-old suffers from pudendal neuralgia – incurable long-term pain caused by damage to the pudendal nerve, which carries sensation information from the buttocks and genitals.
The retired bank clerk said wearing underwear, leggings and jeans makes the pain “unbearable,” so don’t wear them at all.
The “debilitating” condition, which affects only one in 100,000 people, forced her to take early retirement and give up most of her social life.
Ms Jones’s symptoms first started 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 uterus, bowel, or bladder — slide down from their normal position and bulge out 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 — aims to relieve pressure on the walls of the vagina and reduce the chance of the prolapse returning.
Mrs Jones said: ‘I have no children and I was already past childbearing age so the operation wasn’t much of a concern to me.
“I had also read about several other women who had had a prolapse and had a hysterectomy at the same time, so I assumed it was standard practice.
“The doctors advised it would take a while to heal inside and offered some cream as well as several pills.”
But soon after the surgery, Mrs. Jones experienced a burning pain, which she described as a ‘drill’ that attacked her vagina and buttocks.
She said, “I couldn’t bear the pain any longer, so three years later I visited a vulva specialist for an exam, which made me scream in pain.”
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 burning, crushing, stabbing, and stabbing pain. Symptoms also include increased sensitivity to pain, which can make clothes feel uncomfortable.
Studies estimate that it affects one in 100,000 people worldwide and women are twice as likely to get 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 use a hug or go out with friends.
“I haven’t had intimacy since my surgery, but I’ve 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 altogether and go commando.
“All this searing pain has led me to quit my job because I can’t handle sitting at a desk all day and I struggle to leave the house because my pelvis is on fire.”
In an effort 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 titled Bits and Butts AZ of Pudendal Neuralgia.
Ms Jones said: ‘Mentally it has changed me as a person as I used to love going out with friends – but now my day ends at 6.30pm.
“I have always hoped that somehow I would find a cure for this condition through research, medication or treatment, but so far nothing has been able to help me.
“I’ve tried all the medications available, which only messed with my head, and I also go to a chiropractor for acupuncture every month.
‘I started the Facebook group to feel less alone. Now we have over 1,400 members and I still can’t believe how many people suffer from this condition.
‘I was so looking forward to enjoying my retirement, but that is no longer possible. I really hope that medical professionals will take this more seriously.”