A woman whose life has been “put on hold” by her unusual pelvic condition says the pain is so horrific she can’t even wear underwear.

Marion Jones experiences “searing agony” every day as a result of pudendal neuralgia, a long-term issue caused by damage or irritation of the pudendal nerve, which supplies areas such as the b-m and genitals.

The retired bank clerk, who has undergone surgery in the past, says there is no cure or treatment for the “debilitating” condition but has chosen to speak out in hopes that it will help others.

She has even been forced to quit her job earlier than expected, as the pain of sitting at a desk for endless hours is just too intense.

“I feel lonely at times, when I could really do with a cuddle or go out with friends,” Marion, from Herefordshire, told NeedToKnow.Online.

“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 68-year-old’s symptoms first started in August 2011.

She was referred to a gynaecologist by her GP, and this became the start of Marion’s nightmare.

The doctor told her she had a prolapse and would require a hysterectomy.

The surgery went well but soon afterwards, the searing pain began, which Marion describes as a “drill” attacking her v-gina and bottom.

She 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 nothing worked.

“I couldn’t bear the pain any longer, so I visited a v-lva specialist three years later for an examination, which left me screaming in agony.

“Once again, I was referred to a professor of gynaecology, who informed me about my condition.”

Very little is known about pudendal neuralgia but in Marion’s case, it is believed damage occurred as result of the hysterectomy, which triggered the condition.

It affects just one in every 100,000 people in the UK.

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, as well as published a book called Bits and Butts A-Z of Pudendal Neuralgia.

Marion 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.”

ENDS

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