The first sign of trouble for Stephen Jones was a strange notch in his penis. It would appear only during erections. "It was like the skin wasn't stretching because something was holding it back," the 49-year-old man recalls. Soon, he began to feel pain at night. Then his penis developed a curve. "I thought," That's not right – what is it? "
Jones, who chose not to use his real name, did what any middle-aged person in question would do: he researched his symptoms online. The results pointed to a condition he had never heard of before, but which affects up to one in ten men: Peyronie's disease. "To be honest, I just associated that word with beer," he says.
Peyronie's It is an often painful scar or flexion of the penis that can make sex uncomfortable or impossible. It involves the growth of fibrous plaque, or harder tissue, on the walls of the penis. A plaque ring can create an hourglass shape on an erection. One-sided growth can cause a bend. In severe cases, the curve may be 90 degrees or more.
The condition, named after the 18th-century French surgeon who first studied it, tends to affect men 40 and older. It is thought to be a response to injury, perhaps during sports or vigorous sex. Trauma, which may go unnoticed at the moment, causes scar tissue to accumulate. Peyronie may also be genetic in some men, while studies in some cases, they associated it with low testosterone.
Doctors say diagnoses have increased significantly in recent years as men become more comfortable seeking help. Asif Muneer, a urologic surgery consultant and andrologist in London, credits Viagra's cultural impact and media coverage of sexual health by breaking the barrier of embarrassment. "A lot of them come with their partners now, which never used to happen," he says, adding that he sees at least one new case of Peyronie a day on average.
However, Muneer, who works at NHS and HCA UK, a large private health group, says awareness remains low given the emotionally traumatic effects that can change the life of the disease. Treatment can be complex and uncomfortable – and may require invasive surgery. In addition, a recently recently approved Peyronie drug is rarely available on the NHS – and is about to be taken entirely from Europe by its US manufacturer.
Jones's symptoms, which he first noticed three years ago, were getting worse and worse, reaching 60 degrees. "At that time, I didn't want to have sex, not just because of the embarrassment and what I was doing with my mental state, but because it would have been very difficult physically," he adds.
Like many men who develop Peyronie, Jones initially feared cancerous growth. He saw his doctor early and was eventually referred to Muneer. It took three months of testing to confirm the diagnosis. Earlier, Jones was prescribed a vacuum pump to stimulate circulation and reduce any length loss – Peyronie's can cause significant shortening, creating more emotional distress. Jones still uses the bomb four times a week.
At one point, surgery became Jones's best hope for stopping and correcting the curve. A Nesbit procedure involves removing a wedge from the long, unaffected side of the bent penis to bring it back to the line. Sex may become easier or possible again, but the payoff is diminishing even more. "And I've already lost about an inch and a half," says Jones. He decided not to sink into the knife.
Different drugs were tested in Peyronie's cases, with varying levels of success. By the time surgery became an option, Muneer told Jones about Xiapex. The drug's enzymes have been shown to dissolve the collagen that forms most of the plaque, reducing the constriction that creates the curve.
THE NHS Review In 2015, evidence found that Xiapex, which is injected into the penis, was less invasive, risky, and resource-intensive than surgery, if not appropriate in all cases. But it is also classified as a high-cost drug, thus costing £ 1,300 per cycle, usually three injections over three months.
Muneer says Xiapex is rarely funded by NHS funds while surgery is still. With a contribution from the private health policy of his work, Jones was able to obtain the particular drug. But he still had to contribute nearly £ 3,000, including additional costs for treatment. "What do you do?" He says. "Avoid and say, well, is it a very good holiday, or try to move on and solve the problem?"
Jones received the third injection the day before our conversation. He likens it to a visit to the dentist, "but down there"; The drug is injected after a local anesthetic. He has to massage his penis to encourage shortening of the curve and has already noticed an improvement. But Muneer says Xiapex is about to be quietly withdrawn less than five years after its launch. "This means that patients who want to avoid surgery will not have this option," he says.
Xiapex, branded Xiaflex in the USA, 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 collaboration with Sobi … (We will not distribute Xiapex by 2020"). O withdrawal will also affect patients with Dupuytren's Contracture, which causes the fingers to bend towards the palm (actor Bill Nighy has been since the age of 20).
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. "Thank you for your contact. We have no further comments," says Heather Zoumas Lubeski, the company's executive director of corporate affairs, in a one-line email.
Jones, who is in a long, supportive marriage, fears men like him, for whom Xiapex offers the best hope of a return to something like a normal life. "I'd be upset if it wasn't available," he says. Her sex life, surprisingly, suffered. Beyond the curve, Peyronie can cause broader performance dysfunction and anxiety. Jones needs to take Viagra, which means he and his wife need to plan sex in advance – sex that is also likely to be painful even if it succeeds.
"Put it this way: If I were single or a younger man, I wouldn't be looking to meet someone again as I am," he says. "My only other option would be to go and eat the cutlet, but I'm not sure what I have left. I don't know how I could have handled it. I probably wouldn't want to be around, to be honest … You feel that He is no longer a man. ”
Jones has received some advice from the NHS, but would like more research and funding for non-surgical treatments and to make more men feel free to get help. Muneer suspects that many men are reluctant to do so, which means the true rates may be higher than previously thought. It is estimated to affect between 3% and 10% of adult men – and up to 23% in the age group of 40 to 70 years. This can reach 250,000 cases in the UK.
But Muneer is pleased to see attitudes change, even though treatment can be challenging. The ubiquity of camera phones has also helped, he says. "When I started, people were bringing out unfocused Polaroids," he explains. “Now I can get a better idea of the problem. I had an architect who even added the angle of his curve to the picture.
Jones was in the army prior to construction and is familiar with male-dominated tea breaks where sexual health chat tends not to appear. "I talk a lot, but neither would I talk about it at work," he says. "But that's why I think it's important to publicize this condition so that other people can read and understand about it and know it's not easy, but help is available."
. (tagsToTranslate) Men's Health (t) Health and Wellness (t) Men (t) Life and Style