A woman whose life has been ‘put on hold’ by a rare pelvic condition says the pain is so horrific she can’t even wear underwear.
Marion Jones, from Herefordshire, goes commando every day due to ‘searing agony’ from nerve damage that medics believe was caused by an operation to remove her womb.
The 68-year-old suffers from pudendal neuralgia — incurable long-term pain caused by damage to pudendal nerve, which carries sensation information from the bum and genitals.
The retired bank clerk said wearing underwear, leggings and jeans makes the pain ‘unbearable’, so avoids wearing them at all.
The ‘debilitating’ condition, which affects just one in 100,000 people, has forced her to retire early and give up most of her social life.
Marion Jones, from Herefordshire, goes commando every day due to ‘searing agony’ from nerve damage that medics believe was caused by an operation to remove her womb
The 68-year-old suffers from pudendal neuralgia — incurable long-term pain caused by damage to pudendal nerve, which carries sensation information from the bum and genitals
Ms Jones’ symptoms first started in August 2011 after undergoing a hysterectomy — surgery to remove the womb.
A gynaecologist recommended the procedure to treat her pelvic organ prolapse, which is when one or more organ 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 tummy and genitals, discomfort in the vagina and difficulties passing urine.
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.
Ms Jones said: ‘I don’t have any children and I was past child-bearing age, so the operation didn’t really worry me.
‘I had also read about several other women who suffered a prolapse, undergoing hysterectomies at the same time, so I assumed it was standard practice.
‘Medics advised it would take a while to heal inside and offered some cream, as well as various pills.’
But soon after the surgery, Ms Jones started to suffer from a searing pain, which she described as a ‘drill’ attacking her vagina and bottom.
She said: ‘I couldn’t bear the pain any longer, so I visited a vulva specialist three years later for an examination, which left me screaming in agony.’
She was referred to a gynaecologist 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, shooting and prickling pain. Symptoms also include an increased sensitivity to pain, which can make clothes feel uncomfortable.
Studies estimate it affects one in 100,000 people worldwide and that women are twice as likely to suffer from it than men.
This suggests more than 500 adults in the UK and 2,500 in the US have the condition.
Ms Jones told NeedToKnow.Online: ‘I feel lonely at times, when I could really do with a cuddle or go 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, as my life is on hold.
‘Jeans, leggings, tights and underwear make the pain unbearable, where I’ve decided to stop wearing them completely and go commando.
‘All of this searing agony has caused me to quit my job, as I couldn’t handle sitting at a desk all day and I struggle to leave the house because my pelvis is on fire.’
The retired bank clerk said wearing underwear, leggings and jeans makes the pain ‘unbearable’, so avoids wearing them at all. Pictured: Marion Jones before pudendal neuralgia
The ‘debilitating’, which affects just one in 100,000 people, has forced her to retire early and give up most of her social life. Pictured: Marion Jones before pudendal neuralgia
In a bid to help others and find support for herself, she has created an awareness group on Facebook called Pudendal Neuralgia and Pelvic Pain UK. She has also published a book called Bits and Butts A-Z 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 finishes at 6.30pm.
‘I always hoped that I would somehow find a cure for this condition through research, medication or treatment, but so far, there’s nothing to help me.
‘I have tried all the medication that is available, which only messed with my mind, and I also see a chiropractor every month for acupuncture.
‘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 now that’s no longer possible. I really hope medical professionals will start to take this more seriously.’
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