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When Mark Beattie was just 14 he lost sensation in genitals and began suffering with pain and spasms in his legs and pelvis that often leave him bedridden. Doctors have been unable to find anything wrong with him so he’s set about trying to self diagnose his condition and now believes he’s discovered his only chance of some kind of normal existence. Mark’s problems started when he was sitting at his computer one day as a young lad and suddenly felt a strange feeling in his pelvic floor that he describes as a "freak out" in which everything changed. From that day on he lost feeling in his penis. He also has reduced bladder sensation which means he doesn’t realise he needs to go to the toilet until it’s almost too late. "It was sudden, I can remember it was almost like my pelvic floor had a freak out, and I felt like everything shifted," he recalls. "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." While the loss of feeling was a sudden symptom, the pain Mark, who is from Newtownabbey in County Antrim, Northern Ireland, experiences in his pelvis and legs has developed "gradually" over the years. He can now only walk short distances before it becomes too much and some days he’s bedridden with it. "Initially, the pain was like a cold, burning sensation in my pelvis," he says. "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." The debilitating nature of his condition means that Mark is currently unable to work and it’s affected his personal relationships too. He feels it’s impossible for anything long-term to develop because he doesn’t want to put his problems on someone. "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 says. Any relationships that he has had have broken down quickly, not helped by the fact he struggles to have sex because of the lack of sensation in his penis. "I mean, with lots of manual stimulation or whatever, but it always quickly dissipates," he explains of his attempts. "It’s a very odd, alien experience." Understandably Mark’s mental health has taken a huge knock and he’s stopped even attempting to socialise. "Trying to keep up a brave face in social situations, it does wear you down after a while," he reveals. "Now I’ve pretty much become something of a hermit. I’ve pretty much given up on the notion of having hobbies or pursuing any passions. It’s super hard in this state to kind of justify even continuing on. "I feel I don’t really have a future as such, I would say I’ve been sleepwalking through 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," he says. Doctors have been unable to pinpoint the cause of Mark’s condition. He’s had multiple MRI scans on his brain and spine over the years as well as several tests on his blood and hormones - but all have come back clear. He started to think his symptoms may be psychosomatic and linked to his mental health but in 2022 he decided to look further afield for a diagnosis. He travelled to India where scans and radiologists are extremely cheap compared to the UK. The results of the tests he received there also revealed there was no damage to his spinal cord or brain. 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. "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 explains. Mark has found two surgeons in Europe, one in Belgium and one in Vienna, who are willing to operate on him because he says the procedure to release the trapped nerve is not available on the NHS . The operations won’t come cheap though and he needs to find £45,000 to pay for them, alongside travel and insurance costs. He has set up a GoFundMe page to help raise the money for the procedures which he says would be "life-changing". "It would give me a chance at a future - I hope to go to medical school after all this," he reveals. "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 According to the NHS , pudendal neuralgia is hard to diagnose because it is rare. It’s a 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. It can last a long time but there are treatments, such as physiotherapy and medicines, which can help.
