Man who lost sensation in genitals at 14 and has ‘debilitating’ pelvic pain with trapped nerve is ‘sleepwalking through life’

A man who lost sensation in his genitals at age 14 and experiences “debilitating” pelvic pain due to a trapped nerve said the condition has left him “sleepwalking through life”.

Mark Beattie, 32, from Newtownabbey in County Antrim, Northern Ireland, said he was sitting at his computer one day in his teenage years when he recalled feeling a sudden “freak out” in his pelvic floor and “everything shifted” – and he lost sensation in his genitals from that day on.

He also suffers with reduced bladder sensation, where he “won’t feel the need to go until it’s practically at bursting point”, and over the years, he has experienced a “chronic, dull, throbbing pain” in his pelvis and legs, along with “weird muscle spasms”.

Mark, who is currently unemployed as a result of his health, said he can only walk short distances and the pain is sometimes so bad he can “barely get out of bed” – and his relationships have taken a hit as he does not wish to “burden” others with his condition.

After spending years searching for answers, Mark now believes he has pudendal nerve entrapment, where the pudendal nerve – a main nerve in the pelvis – becomes trapped and irritated, and he has sourced two European surgeons who are willing to operate, which would be “life-changing” if successful.

“I feel I don’t really have a future as such, I would say I’ve been sleepwalking through life,” Mark told PA Real Life.

“I’ve always held myself back because of this, I never really put myself out there.

“I always ended up subconsciously sabotaging myself in a way.”

Mark said he was 14 years old when he suddenly lost sensation in his genitals.

“It was sudden, I can remember it was almost like my pelvic floor had a freak out, and I felt like everything shifted,” he said.

“From that day on, I had a complete lack of sensation.”

Mark added the loss of sensation was not due to an injury, and he recalled sitting in his computer chair at the time it occurred.

Describing the symptoms, Mark said: “The lack of sensation is mainly genital-related.

“I also have a very reduced bladder sensation, so I won’t feel the need to go until it’s practically at bursting point.”

Mark said while the loss of sensation was a sudden symptom, the pain he experiences in his pelvis and legs have occurred “gradually” over the years.

He added he can now only walk short distances before the pain becomes too much.

“Initially, the pain was like a cold, burning sensation in my pelvis,” he said.

“As the years went by, it became more of a sharp, debilitating pain.

“Most of the time, it’s like a chronic, dull, throbbing pain but there’s days where it’s amplified and I can barely get out of bed.”

Mark said he has gone “back and forth” with health professionals for years to try and obtain a diagnosis for his symptoms.

He said he received multiple MRI scans on his brain and spine, as well as several tests on his blood and hormones, but all came back clear.

“I initially thought it was a psychosomatic thing, and it was linked to my mental health,” he said.

After suffering for most of his adult life, Mark looked further afield and in 2022, he said he travelled to India to receive multiple scans and tests for around £800 in total.

“I wanted to get all the scans I could think of to categorically rule everything out,” he said.

“You can pick whatever scans you want, hire a few radiologists and the cost was astronomically cheap.”

Mark said the scans revealed no damage to his spinal cord or brain, and his blood work came back normal.

He said he now believes he has pudendal nerve entrapment.

“It’s largely a diagnosis of exclusion and I’ve come to this myself – I’ve spent the last 10 years reading up on anything it could possibly be,” he said.

“The pudendal nerve is entrapped in multiple locations along its path – once it disseminates from your spinal cord, it goes through a tiny notch before going down your leg.

“The piriformis muscle sits on top so the nerve can become damaged, it’ll be constantly squeezed and you have scar tissue which builds up and keeps the nerve trapped.”

According to the NHS, pudendal neuralgia is long-term pelvic pain that originates from damage or irritation of the pudendal nerve – a main nerve in the pelvis.

The main symptom is sharp, shooting, burning, tingling pain or numbness in the genitals, the bottom and anus, and the pelvis, the NHS says.

It can last a long time but there are treatments, such as physiotherapy and medicines, which can help.

Mark said he feels his mental health is “pretty much in the toilet” with the condition.

“I’ve pretty much given up on the notion of having hobbies or pursuing any passions,” he said.

“It’s super hard in this state to kind of justify even continuing on.”

Mark said it has also been difficult to establish long-term relationships.

“I always felt that I wouldn’t really want to put another person through this, it feels like I’m putting a big burden on them,” he said.

“There would be times, yes, but it always ended up breaking apart rather quickly.”

Mark added it is “not particularly possible” for him to engage in sexual activities.

“I mean, with lots of manual stimulation or whatever, but it always quickly dissipates,” he said.

“It’s a very odd, alien experience.”

In terms of socialising, Mark said this is also “rather non-existent”.

“For the most part, I’ve just kept it under wraps and tried to get on with it as best as I could by myself,” he said.

“Trying to keep up a brave face in social situations, it does wear you down after a while.

“Now I’ve pretty much become something of a hermit.”

Mark has launched a GoFundMe page as he has sourced two European surgeons who would be willing to perform operations on his pelvis to release the trapped nerve.

He added the procedures are not performed in the UK or Ireland via the NHS.

He also said the surgeons, one located in Belgium and the other in Vienna, are “confident” to go ahead with the procedures after learning of his symptoms.

The operations would be costly, and Mark hopes to raise around £45,000 to pay for them, alongside additional fees for travel and insurance.

Despite this, Mark said the damage to his nerve may be too extensive to rectify.

“A lot of time has transpired between when the injury happened to now, so the prognosis might not be good,” he said.

“I’ll cross that bridge when I get there but I’ve got to remain optimistic.”

Mark said the procedures, if successful, would be “life-changing”.

“It would give me a chance at a future – I hope to go to medical school after all this,” he said.

“As far as my mental health goes, I don’t think I could put into words how life-changing it would be.”

To find out more, visit Mark’s fundraiser here: gofundme.com/f/support-me-in-funding-life-saving-surgeries-piriformis