- SIMPLE: A woman is in a coma due to pain caused by nerve damage
- Marion Jones suffers from pudendal neuralgia, which affects one in 100,000 people
A woman whose life has been “stopped” by a rare pelvic disease says the pain is so terrible she can’t even wear underwear.
Marion Jones, from Herefordshire, goes to the emergency room every day because of “extreme pain” caused by nerve damage, which doctors believe was caused by her hysterectomy.
The 68-year-old suffers from arachnoid neuralgia – an incurable long-term pain caused by damage to the pubic nerve, which carries sensory information from the abdomen and genitals.
The retired bank clerk said wearing underwear, leggings and jeans makes the pain “unbearable” so she avoids wearing them altogether.
The “debilitating” condition, which affects only one in 100,000 people, has forced him into early retirement and giving up most of his social life.
Mrs Jones’ symptoms first started in August 2011 after a hysterectomy.
The gynecologist recommended the procedure to treat her pelvic prolapse, in which one or more pelvic organs — such as the uterus, bowel or bladder — slide 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 – aims to relieve the pressure on the vaginal walls and reduce the chance of the prolapse recurring.
Mrs Jones said: “I don’t have any children and I was past childbearing age so the operation didn’t really worry me.
“I had also read about several other women suffering from prolapse who had hysterectomies at the same time, so I assumed it was normal practice.
“The doctors advised that it would take some time to heal inside and offered a cream as well as various pills.”
But soon after the operation, Mrs Jones began to suffer from a burning pain she described as a “drill” that attacked her vagina and bottom.
She said: “I couldn’t take the pain anymore, so three years later I went to a vulva specialist for an examination that left me screaming in pain.”
She was referred to a gynecologist who diagnosed her with long-term pelvic pain caused by damage to the vagus nerve, which the NHS described as “extremely uncomfortable” and “painful”.
This nerve carries movement and emotional information from the genital area.
When damaged, it can cause burning, crushing, shooting and stabbing pain. Symptoms also include increased sensitivity to pain, which can make clothes feel uncomfortable.
Research shows that it affects 1 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 be cuddling or going out with friends.”
– I haven’t had any intimacy since my surgery, but I always hoped to find a new partner after my divorce – now all hope is gone because my life is at a standstill.
“Jeans, leggings, tights and underwear make the pain unbearable so I’ve decided to stop wearing them altogether and become a commando.
“All this burning pain has made me quit my job because I couldn’t stand sitting at a desk all day and it’s hard for me to leave the house because my hips are on fire.”
To help others and find support for herself, she has set up an awareness group on Facebook called Pudendal Neuralgia and Pelvic Pain UK. He has also published a book called Bits and Butts AZ of Pudendal Neuralgia.
Mrs Jones said: “Mentally it has changed me as a person because I used to love going out with friends – but now my day ends at 6.30pm.
“I had always hoped that I could somehow find a cure for this disease through research, medication or treatment, but so far nothing has helped me.
“I’ve tried every medication available that just messes with my mind and I also see a chiropractor every month for acupuncture.
– I started a Facebook group to feel less alone. Now we have over 1,400 members and I still can’t believe how many people are suffering from this disease.
– I was looking forward to enjoying my retirement, but now it is no longer possible. I really hope medical professionals start taking this more seriously.