The first sign of trouble for Stephen Jones was a strange notch in his penis. It would only appear during erections. “It was like the skin wasn’t stretching because something was holding it back,” the 49-year-old recalls. Soon, he began experiencing pains in the night. Then his penis developed a bend. “I thought: ‘That’s not right – what’s that about?’”

Jones, who has chosen not to use his real name, did what any concerned middle-aged person would: he researched his symptoms online. The results pointed to a condition he had never heard of before, but which affects as many as one in 10 men: Peyronie’s disease. “To be honest, I’d just associated that word with the beer,” he says.

Peyronie’s is an often painful scarring or bending of the penis that can make sex uncomfortable or impossible. It involves the growth of fibrous plaque, or harder tissue, in the walls of the penis. A ring of plaque can create an hourglass shape in an erection. A growth on one side can bring on a bend. In severe cases, the bend can be 90 degrees or more.

The condition, which is named after the 18th-century French surgeon who first studied it, tends to affect men in their 40s or older. It is thought to be a response to injury, perhaps during sport or vigorous sex. The trauma, which can go unnoticed at the time, causes the scar tissue to build up. Peyronie’s may also be genetic in some men, while studies have in some cases linked it to low testosterone.

Doctors say diagnoses have risen significantly in recent years as men become more comfortable seeking help. Asif Muneer, a consultant urological surgeon and andrologist in London, credits the cultural impact of Viagra and media coverage of sexual health with chipping away the embarrassment barrier. “A lot of them come with their partners now, which never used to happen,” he says, adding that he sees at least one new Peyronie’s case a day, on average.

Yet Muneer, who works in the NHS and for HCA UK, a large private health group, says awareness remains low, given the disease’s potentially life-changing, emotionally traumatic effects. Treatment can be complex and uncomfortable – and can require invasive surgery. Moreover, a drug only recently approved for Peyronie’s is rarely available on the NHS – and is about to be withdrawn entirely from Europe by its American manufacturer.

Jones’s symptoms, which he first noticed three years ago, grew steadily worse, the bend eventually reaching about 60 degrees. “At that point, I didn’t want to have any sex, not only because of the embarrassment and what it was doing to my mental state, but because it would have been very difficult physically,” he adds.

Like many men who develop Peyronie’s, Jones initially feared a cancerous growth. He saw his GP early on and was eventually referred to Muneer. It took three months of tests to confirm the diagnosis. At first, Jones was prescribed a vacuum pump to stimulate circulation and reduce any loss in length – Peyronie’s can cause significant shortening, creating further emotional distress. Jones still uses the pump four times a week.

At one point, surgery became Jones’s best hope of halting and correcting the bend. A Nesbit procedure involves removing a wedge of the longer, unaffected side of the bent penis to bring it back into line. Sex can become easier, or possible, again, but the payoff is further shortening. “And I’d already lost about one and a half inches,” Jones says. He decided not to go under the knife.

Different drugs have been tried out in Peyronie’s cases, to varying levels of success. At the time surgery became an option, Muneer told Jones about Xiapex. The enzymes in the drug have been shown to dissolve the collagen that forms most of the plaque, reducing the constriction that creates the bend.

An NHS review of evidence in 2015 found that Xiapex, which is injected into the penis, was less invasive, risky and resource-intensive than surgery, if not suitable in all cases. But it is also categorised as a high-cost drug, then costing £1,300 per cycle, typically of three injections over three months.

Muneer says Xiapex is very rarely funded by NHS trusts, while surgery still is. With a contribution from his work’s private health policy, Jones was able to get the drug privately. But he still had to contribute almost £3,000 himself, including additional costs for the treatment. “What do you do?” he says. “Avoid it and say, well, that’s a really nice holiday, or try and get on with it and sort it out?”

Jones had his third injection the day before we speak. He compares it to a visit to the dentist, “but down there”; the drug is injected after a local anaesthetic. He has to massage his penis to encourage the reduction in the bend, and has already noticed an improvement. But Muneer says that Xiapex is about to be quietly taken off the market less than five years after its launch. “It will mean patients who want to avoid surgery won’t have that option,” he says.

Xiapex, branded Xiaflex in the US, is distributed in Europe by Sobi, a Swedish pharmaceutical company. Sobi declined to share sales figures, but confirmed that Endo Pharmaceuticals, which makes the drug, has decided “to terminate the collaboration with Sobi … [We] will accordingly not distribute Xiapex in 2020”. The withdrawal will also affect patients with Dupuytren’s contracture, which causes fingers to bend towards the palm of the hand (the actor Bill Nighy has had it since his 20s).

Endo declined to answer any questions about the drug, which remains patent protected, or to address the concerns of men who will no longer be able to access it. Nor would it explain or even confirm the decision to abandon its European customers. “Thanks for reaching out. We have no further comment,” Heather Zoumas Lubeski, the company’s executive director of corporate affairs, tells me in a one-line email.

Jones, who is in a long and supportive marriage, fears for men like him for whom Xiapex offers the best hope of a return to something like a normal life. “I would be distraught if it hadn’t been available,” he says. His sex life has, unsurprisingly, suffered. As well as the bend, Peyronie’s can cause broader dysfunction and performance anxiety. Jones has to take Viagra, which means he and his wife have to plan sex ahead of time – sex that is also likely to be painful, even if it is successful.

“Put it this way: if I were single or a younger man, I wouldn’t have been looking at meeting anyone ever again in the condition I’m in,” he says. “My only other option would be to go and have the chop, but then I’m not sure what I’d have left. I don’t know how I could have coped with it. I probably wouldn’t want to be around, to be honest … You feel like you’re not a man any more.”

Jones received some counselling on the NHS, but he would like more research and funding for non-surgical treatments, and for more men to feel comfortable getting help. Muneer suspects that many men are reluctant to do so, which means the true rates could be higher than thought. It is estimated that it affects between 3% and 10% of adult men – and up to 23% in the 40-70 age group. That could equate to as many as 2.5 million cases in the UK.

But Muneer is pleased to see attitudes change, even if treatment can be challenging. The ubiquity of camera phones has also helped, he says. “When I started, people were bringing in out-of-focus Polaroids,” he explains. “Now I can get a better idea of the problem. I had one architect who even added the angle of his bend to the photo.”

Jones was in the military before construction and is familiar with male-dominated tea-breaks in which sexual health chat tends not to feature. “I talk about a lot, but even I wouldn’t talk about this at work,” he says. “But that’s why I think it’s important to get this condition out there, so other people can read about it and understand it, and know that it’s not easy, but help is out there.”

• This article was amended on 15 January 2020. An earlier version equated the estimate of Peyronie’s disease affecting 10% of adult men to being “as many as 250,000 cases in the UK”. That figure is more like 2.5 million men.