Natalie, now 40, had a pudendal nerve entrapment – a rare complication of labour that damages and traps the main nerve in the pelvis – and after five years without a correct diagnosis and UK doctors LAUGHING at her, went to France for help.
She says, ‘Before I gave birth in January 2016, the last thing I thought about every day was my vagina. It wouldn’t even cross my mind. Since I’ve had Selina, it’s all I think about. It started with a minor irritation and became sheer torturous hell.’
The mum-of-one from Wirral was left in a wheelchair, unable to stand, walk, sit, work, take care of her daughter or have sex, and tried to end her life due to severe pain around her vulva and inside her vagina.
She explains, ‘When I was finally referred to a gynaecologist and asked if it could be pudendal neuralgia – nerve pain – he laughed at me and tutted. I left in tears. I couldn’t tolerate nerve pain medication or strong painkillers given to me by an NHS pain clinic and life felt bleak and hopeless.’
Natalie suffered a nervous breakdown and tried to take her own life in 2019 in desperation to end her suffering.
Before having Selina, Natalie regularly went cycling, running, worked out at the gym and had sex with her husband, David – and had no pain. Then her pregnancy ran 10 days over, and Natalie was induced. ‘I was rolling around in horrific pain, which went from zero to horrendous in no time at all.’
During labour, the skincare aesthetician was given an episiotomy, a small cut in the perineum – tissue between the vagina and anus – to help prevent tearing. Daughter Selina was delivered via ventouse, a suction cap attached to her head. Three months later in April 2016, Natalie’s symptoms began.
What is Pudendal neuralgia?
Pudendal neuralgia may feel like burning, crushing, shooting or prickling sensation in the pelvic area, develop gradually or suddenly, and is often worse when sitting down. It can continue to get worse if left untreated. Tests include a physical examination, scans, nerve studies or nerve block injections.
Treatment can include avoiding things that make the pain worse, nerve pain medication, physiotherapy, local anaesthetic and steroids, decompression surgery or nerve stimulation. Not all of the possible treatments are widely available on the NHS. It is estimated one per cent of the population suffer pudendal neuralgia, with more women affected than men.
She says, ‘Knickers and jeans irritated me down there, so I lived in linen trousers and skirts year-round.
‘The sensation grew worse around my vulva and into my vagina until it felt like my insides were being dragged out. I saw my GP, who was sympathetic and helpful, but specialists wouldn’t take my symptoms seriously.’
Three years after Selina’s birth, Natalie was misdiagnosed with vulvodynia (long-lasting vulva pain) and referred to an NHS pain clinic. She found it impossible to tolerate the medications prescribed to her, including painkillers, nerve pain tablets pregabalin and gabapentin, and anti-depressants amitriptyline and Cymbalta. She paid privately for physiotherapy and acupuncture, but her symptoms worsened.
Eventually, an NHS specialist suspected pudendal neuralgia and administered a nerve block – an injection of local anaesthetic to diagnose, and temporarily silence the nerve. ‘It was transformational, but sadly didn’t last,’ Natalie says.
Natalie’s pleas for further help fell on deaf ears, and queries about her pain being caused by a trapped nerve were laughed off by specialists. After being told she’d never sit down again, Natalie had a nervous breakdown in spring 2019.
Wheelchair bound but unable to tolerate sitting, suffering indescribable pain and no longer able to work or parent, Natalie took an overdose of prescription painkillers. Her worried husband broke down the door and rushed her to hospital.
‘When I came around, I was so angry that I’d been saved. I couldn’t bear to live that way anymore and wanted it all to be over,’ she says.
Husband David, a former marine, researched specialists abroad and spoke to medics in Texas, before finding gynaecological surgeon Dr Eric Bautrant, of Bastide d’Auxium Aix-en-Provence, France; an expert in pudendal neuralgia and nerve decompression surgery.
That November, Natalie flew to France and the renowned pelvic pain specialist ran a colour ultrasound scan that revealed her pudendal nerve was indeed trapped, likely due to Selina’s traumatic birth, and was the source of her excruciating pain.
‘He diagnosed the nerve entrapment with a quick scan,’ Natalie says. ‘It was a relief to what was causing my pain, but it was also infuriating. Why hadn’t a single NHS doctor or specialist run that test? It might have saved me from getting so unwell that I’d tried to end my life.’
Dr Bautrant released the trapped nerve in a £7,000 surgery, and when the nerve pain came back – a common trait of prolonged nerve pain – tried radio-frequency ablation, Botox injections and cryo-neurolysis to no effect.
He installed a Medtronic Pump in Natalie’s abdomen to deliver local anaesthetic 24/7 and continually numb the pain, which had been severely aggravated by years of delay in diagnosis and decompression.
Now, on Natalie’s better days, she’s able to walk short distances and work. She no longer feels suicidal, and though she still has pain, it’s slowly improving.
‘Before the pump, the pain was so torturous that I didn’t even love my daughter anymore,’ Natalie says. ‘I didn’t care about anyone or anything. I couldn’t be a mum or a wife, couldn’t work anymore and just wanted to be dead.
‘Now, I am slowly getting my life back, but I’ve had to go to France to get the proper medical diagnosis, operations to release the trapped nerve, install the pump and now refill it. It’s painful, exhausting and so expensive. Why won’t the NHS help me?’
Natalie and David have so far spent £50,000 including the cost of flying and staying abroad for treatment. The NHS refuses to refill the pump’s medication, leaving her to foot £1100 bills and solo trips to Paris every 4-6 weeks.
Natalie appealed to her local MP, who advised her to request special NHS funding for the refills, but the local CCG, which oversees such requests, denied the claim.
She says, ‘At one point, an email from one of my UK specialists was sent to me in error, and said, ‘the mental health state of doctors is often forgotten in the request by patients for treatment.’
‘What about my mental health? I’m the one suffering daily here. The specialists here have failed me, and it makes me wonder how many other women have suffered birth trauma like mine and are coping alone with agonising symptoms.’
The NHS website itself states pudendal neuralgia can continue to get worse if left untreated. Studies estimate 1 in 100,000 people suffer the condition, with women more prone than men, and injuries from labour being a leading cause.
Natalie, who lives with David and daughter Selina, five, in Wirral, adds, ‘If I didn’t have the money from my business, I’d be six feet under.
‘I feel the NHS is burying their head in the sand. They know pudendal neuralgia exists, but don’t seem to want to deal with it or its causes properly.
‘I don’t expect to be fully recovered and jumping on trampolines, but I want to be able to stand, walk and sit, maybe even have gentle sex again one day.
‘I am adjusting my whole life to live around this pain. I must kneel on the floor, sit on one leg, or keep my knees up. I want normality.
‘Since having the pump fitted, I’ve been able to drive the short distance to take my daughter to school, wheel myself in the airport and return to work, but I have flares of pain that makes even this much impossible some weeks.
‘Other countries are making progress with this condition and the UK needs to catch up, instead of leaving women like me floundering for years.’
Kim Thomas from the Birth Trauma Association told Femail, ‘In my six years with the Birth Trauma Association, I have heard many distressing stories about women’s experiences during labour and birth.
‘There have been few, however, that have upset and angered me as much as Natalie’s story. She has suffered agonising pain and mental torment for several years, to the extent of attempting suicide. Yet instead of helping her, NHS professionals have dismissed her pain, and some have even laughed at her.
‘Through her own resourcefulness, she has found a French doctor who can alleviate the pain. All she needs is an NHS clinic willing to perform the simple task of refilling her pain pump every six weeks. Shockingly, not a single one has agreed to do so, and Natalie is now forced to travel to France regularly at her own expense.
‘The government is currently developing a women’s health strategy, and I urge Sajid Javid to look at what has happened to Natalie and put in place measures to force the NHS to take women’s pain seriously.’