Bitte beachten Sie, dass dies meine persönlichen Erfahrungen mit dem Ehlers-Danlos-Syndrom, den Behandlungen und dem Weg zur Diagnose sind und daher nicht als medizinischer Rat verstanden werden sollten. Mir ist bewusst, dass manche Beschwerden nur indirekte Symptome von EDS sind, aber auch diese tragen zum Gesamtbild und meiner Erfahrung mit der Erkrankung EDS bei.
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” Men with EDS may experience erectile dysfunction (ED), likely due to vascular problems, autonomic dysfunction, or pelvic floor issues, all of which affect blood flow and the ability to maintain an erection. ” *
All men just struggle along in life, and if they are lucky they find a partner with whom they bond and can grow in a meaningful sexual relationship in which they can learn about each other’s bodies. Expectations we have when we start having sexual needs are twisted due to an unrealistic image in the media and internet. Due to this image we put pressure on ourselves, that everything has to be perfect and we link our manhood to our performance in that matter.
First we discover our own body, our own preferences and likes. It’s a solitary, personal feeling and it often doesn’t connect to sexual intercourse. No one knows how we are suppose to feel, how our body is suppose to react and we just assume things work out by itself. That feel the same as others do. For people who are born with a congenital disorder this can be very difficult and frustrating.
Much more senses are activated during intercourse and foreplay than while masturbating. Many EDS patients experience discomfort or even pain when being touched. The longing for a physical connection with one’s partner being disrupted by pain and discomfort can have a negative psychological effect.
During our sexual discovery of each other, first off I thought everything was normal. We were playful and did not put pressure on each other. If things didn’t work out it wasn’t a big deal. I had to figure out what and how much touching I liked, and what was unpleasant. I tried ways to get hard on time and blamed my natural ability to do so on a too high level of excitement. As time went on though, I did feel pressure as I not only have difficulty to gain but also to maintain an erection. But nothing can mess a man’s mind the way erectile dysfunction can and quickly I found myself anxious about having intercourse.
When I realised my body did not react to my state of arousal as it should I knew something was wrong. Yet by that time I already had bladder issues that had an effect on my confidence. Bladder pain, pain in my groin and testicles due to varicocele, repeated bladder infections, and enlarged prostate. Now i know my EDS effects the soft tissue mainly in that area, causing pelvic muscle dysfunction, weak bladder control which leads to incontinence, which leads to retained urine in my urethra, causing prostate issues and pain. My weak arteries causing varicocele, which leads to testicular pain and low testosterone level. All this a circle of cause and effect that undoubtedly has a physical impact on potency.
Back then I wasn’t diagnosed with EDS yet and didn’t understand the physical relation that impacted my bladder and overall well being, causing impotence. But it doesn’t matter if it is primarily related to EDS, or secondary, what is important is that no matter what the cause is, it is not self-inflicted, not due to a lack of persistence, not self-taught, not a sign of weakness. It’s part of my disability that I didn’t ask for but hardly ever talk about. The psychological effect of impotence enhances itself more than any other issue. We measure our masculinity to it, leading to a twisted self-image. Communication with the partner is of course a key priority, but when one self does not know, or doesn’t understand his own body there is very little to discuss. One can only expect his partner to understand his issues when he himself understands his body, his disability. Awareness that erectile dysfunction is part of EDS opens the dialogue in one’s own head, the partner and eventually seeking for help. Physical or emotional help, relationship help or therapy.
Living with Ehlers Danlos Syndrome 