For years, Lydia Kelly’s life was made a misery by bouts of stabbing pelvic pain that ‘came from nowhere’.

‘As well as pain in my stomach, sometimes I also felt a sharp stabbing between the legs,’ says Lydia, 64, a hairdresser. ‘It hurt so much that I’d shout out in pain.’

She adds: ‘I’d also feel this huge pressure to go to the loo. It made things like going to the theatre or out for a meal almost impossible. It reached the point where I was just too afraid to go out.’

Lydia initially suspected a problem with her digestive system when she began experiencing bouts of pain four years ago.

She used her private health insurance to book an appointment with a gastroenterologist, who performed a colonoscopy (where a camera on a thin cable is inserted to examine the large intestine).

‘The specialist said it was diverticula [small pockets that form inside the gut lining] and suggested I add more fibre to my diet [which softens stools and reduces pressure on the bowel walls, which may otherwise lead to the pockets forming],’ recalls Lydia.

But this made no difference – and the pain continued – so the gastroenterologist referred Lydia to a hernia specialist.

‘It was discovered that I had a small hernia, so I had a small operation to fix that – but after two months I was still in as much pain,’ she says. Over-the-counter painkillers made no impression, although hot water bottles on her lower abdomen provided some relief.

For years, Lydia Kelly’s life was made a misery by bouts of stabbing pelvic pain that ‘came from nowhere’

It was only after visiting her gastroenterologist again that she was referred to a pain specialist, and the cause was finally discovered to be damage to one of the nerves in her pelvis.

By the time she first saw pain consultant Dr Khaled Ayazi, she was in so much pain she could barely walk.

‘I was not even able to sit down in the appointment,’ she recalls.

Not being able to sit is a characteristic symptom – others include pain when opening the bowel or bladder or when wearing tight clothes.

And Lydia’s lengthy journey to find a cause for her pelvic pain is far from unusual, says Dr Ayazi, who established the Pelvic Pain Management Service at the Royal Free Hospital in London and now works privately.

Dr Rhiannon Bray, a consultant urogynaecologist at New Victoria and Kingston Hospital NHS Foundation Trust, adds: ‘Chronic pelvic pain – defined as pain lasting six months or more – is one of the most frequent reasons women seek gynaecological care. It’s something I see in my clinic almost every day.’

Pelvic pain can sometimes be linked to gynaecological problems.

But Dr Ayazi says: ‘Many women who see their GPs about pelvic pain are routinely sent to a gynaecologist who assumes it’s endometriosis.’ This is where tissue similar to the lining of the womb grows elsewhere in the body, usually in the pelvis.

‘They then go through a laparoscopy [minimally invasive surgery to insert a tiny camera to examine the inside of the abdomen].

‘One patient I know has experienced pelvic pain from the age of 16 and has seen five gynaecologists and had five laparoscopies.

‘That’s not unusual. But it’s almost as if doctors have been trained that if a woman has pelvic pain, they must prove it is endometriosis before looking at anything else.’

In some cases – the pain is endometriosis. The charity Endometriosis UK says there are more than 250,000 laparoscopies performed in England every year – but only half result in a diagnosis of the condition.

Dr Rhiannon Bray, a consultant urogynaecologist at New Victoria and Kingston Hospital NHS Foundation Trust, adds: ‘Chronic pelvic pain – defined as pain lasting six months or more – is one of the most frequent reasons women seek gynaecological care' (stock image)

‘That means over 100,000 women still have no diagnosis,’ says Dr Ayazi, who runs a private pain management clinic via the Doctify platform.

‘It’s important to say that not all pelvic pain in women is gynaecological – and assuming it must be can lead to years of missed or incorrect diagnosis,’ points out NHS GP Dr Luke Pratsides.

This is because chronic pelvic pain is a complex condition, explains Dr Ayazi: ‘Studies show that up to 80 per cent of patients may have underlying musculoskeletal or neuropathic [nerve] dysfunction.’

Dr Bray agrees, adding: ‘There are many potential causes of pelvic pain, and often more than one is contributing at the same time.

‘Common causes include endometriosis, adenomyosis [where tissue similar to womb lining grows inside the womb muscles], pelvic inflammatory disease, ovarian cysts, pelvic floor muscle overactivity, irritable bowel syndrome (IBS), adhesions following surgery and nerve-related pain.’

She adds: ‘Hormonal changes can also play a role. For example, after the menopause, falling oestrogen levels can affect the bladder, vagina and pelvic floor, leading to symptoms that are often mistaken for recurrent infections.

‘The challenge is that these conditions can produce very similar symptoms, which is why a thorough assessment is so important rather than assuming there is a single cause.’

Another major misconception about chronic pelvic pain is that ‘where you feel the pain is always where the problem lies’, adds Dr Bray.

‘In reality, the pelvis is incredibly complex. The nerves supplying the bladder, vagina, bowel and pelvic floor communicate closely, meaning pain can be “mislabelled” by the brain.

‘I often see women who are certain they have pain in the urethra (the tube that carries urine out of the body) because that’s where they feel the burning. But when I look inside I find inflammation affecting the whole bladder.’

Bowel and bladder problems can also be the causes of pelvic pain, says Dr Pratsides.

‘IBS overlaps heavily with chronic pelvic pain – and inflammatory bowel disease, diverticulitis and other gut conditions can present in a similar way.’

He adds: ‘On the bladder side, interstitial cystitis [a form of cystitis not necessarily caused by infection] causes pelvic pain alongside urgency and frequency and can easily be mistaken for a gynaecological problem, as can recurrent urinary tract infections or kidney stones.’

Dr Bray says that women with pelvic pain can often be ‘passed between specialists because the pain doesn’t neatly fit into one diagnosis’.

For Lydia, from Aston, Hertfordshire, the problem – after years of pain – was finally diagnosed on her first visit to Dr Ayazi three years ago.

He immediately recognised it as ‘a pudendal nerve problem’, she says – something she had never heard of.

‘Apparently it mostly affects people who sit down in an office for years or cycle or horse ride,’ she says.

‘I did none of that, but he was confident that’s what it was and said he would treat me with nerve-blocking injections.’

A major nerve in the pelvis, the pudendal nerve originates from the lower spine and carries messages for feeling and movement to the genitals, anus and pelvic floor muscles.

Dr Ayazi says: ‘It’s an important nerve that has three branches – one goes to the rectum, one to the perineum and vagina and another to the clitoris in women (or rectum, testicle and tip of the penis in men).

‘Like Lydia, many women with this kind of nerve damage experience shooting pain and they can’t sit still for any period of time. They can’t wear tight lingerie or clothes. It can severely impact their social and sex life.’

Dr Bray adds that while pudendal nerve damage is less common than conditions such as endometriosis, she nonetheless encounters it in specialist practice.

‘Patients often describe burning, stabbing, aching or electric shock-like pain in the vulva, vagina, perineum or around the rectum.

‘Some women also experience pain during or after sex, urinary urgency or frequency, bowel symptoms or the sensation that they are sitting on a golf ball or have a foreign body in the vagina or rectum,’ she explains.

Treatment depends on the underlying cause.

For pudendal neuralgia, treatment may include avoiding prolonged pressure on the nerve; specialist pelvic floor physiotherapy; medications to target nerve pain; and sometimes, pudendal nerve blocks (i.e. anaesthesia). Pudendal nerve decompression surgery, which aims to relieve pressure on the pudendal nerve if it has become trapped or compressed, is reserved for carefully selected cases.

Where other contributing conditions are also involved, treatment may also include hormonal treatments, treatment of bladder or gynaecological conditions, neuropathic pain medication, and lifestyle measures or psychological support for living with persistent pain.

Lydia has no idea how she developed pudendal nerve damage, as she spent most of her time standing up for her job as a hairdresser.

She was treated with steroid injections around the affected nerve to reduce irritation; under sedation, she underwent two courses of injections a week for three weeks.

‘I needed to be conscious so I could tell him when he’d hit the nerve – if he did, it was like an electric shock in my vulva,’ she says.

‘The first two injections irritated the nerve – but I had been warned that might happen.

‘But after the third injection, the pain had disappeared. It was such a relief, as if I’d got my old life back.’

Five months later, however, the pain began to creep back and Lydia needed more injections.

Over the past three years she has had four courses – a total of 24 injections – which is highly unusual and ‘rare’, according to Dr Ayazi.

‘This many injections does not reflect my usual approach in treating pudendal nerve pain,’ he says.

‘The great majority of patients do not need more than two courses of injections – and in fact, for many patients, a single course has provided many months, and sometimes even years, of significant pain relief.’

Meanwhile, treatment has cost Lydia more than £8,000 – but she feels it’s worth it. She’s also taking daily nerve-blocker tablets, called duloxetine.

Lydia is relieved to finally have a diagnosis and grateful for her treatment. Yet, sadly, many women with pelvic pain never seek help, says Dr Ayazi.

‘Around half of those with pelvic pain never go to a doctor – either because culturally they’re told that “women always have to suffer some kind of pelvic pain” or because they assume – often incorrectly – that it’s connected to a sexually transmitted disease and there is a stigma to that.’

Dr Bray adds: ‘The most important message is that persistent pelvic pain should never be dismissed as “just being part of being a woman”.

‘In many cases, there are identifiable and treatable causes, but they often require a holistic approach because several conditions may coexist.’