Hi everyone. I’m currently dealing with a health worry that has been weighing on me for the last 6 or 7 months. My pelvic floor feels like it’s malfunctioning, and I’m experiencing ED symptoms along with a near-total loss of feeling in that region. This started very suddenly last year; I was perfectly fine before that. I’m a 31-year-old male. How do you actually confirm a diagnosis of SFN? I’m anxious that I have it and want to make sure I request the correct tests from my neurologist. We’ve done an EMG which was normal, but we haven’t looked at the small nerve fibers yet. For the men here who have SFN, do you deal with ED problems?
I’m a male with SFN, but I don’t have ED issues. The most common method for diagnosing small fiber neuropathy is a skin punch biopsy. You should ask them to sample three different areas. They will numb the spots with lidocaine and take a tiny 3mm circular skin sample. Usually, these are sent out to a specialized lab for analysis. My procedure was very easy and I didn’t feel a thing when the doctor took the samples. You can find more info by searching for Corinthian Reference Labs and neuropathy on YouTube.
There is research suggesting that erectile dysfunction is linked to SFN and peripheral neuropathy in general. [Links]. Testing for small fiber neuropathy is usually more specialized. A skin biopsy is the preferred method, though some papers suggest using multiple tests like Quantitative Sensory Testing (QST), Q-Sweat, Laser Evoked Potentials (LEP), and Autonomic CardioVascular Tests (ACVT). This is because nerve density can sometimes look normal in certain genetic or autonomic cases. One study actually found that biopsies only caught about 58% of cases, though they are very specific if they do come back positive. Combining tests can bring sensitivity up to 90%. [Links]. Some also suggest corneal confocal microscopy (eye exams) to track progression, though it’s less common. Be aware that some doctors might think biopsies are more accurate than they actually are. Also, don’t believe anyone who says SFN can’t be treated; it depends on the cause, and many see improvement with the right approach.
Do you have a history of smoking, heavy alcohol use, or diabetes?
I have a formal SFN diagnosis and I definitely deal with severe ED (I’m 43). I’ve also lost sensitivity and have some light issues with my bladder. My doctors mentioned these could be caused by the SFN or made worse by my medication. It’s very frustrating. I’ve started taking Nervala to help support my nervous system, but it’s a difficult thing to live with.
They usually take biopsies from the limbs, like the arms or legs. While SFN can be non-length dependent (meaning it shows up in random spots rather than just starting at the feet), I can’t imagine them doing a biopsy on the genitals. There are some older tests they used to use that might be applicable for that area.
Could it be hard flaccid syndrome? I know that’s a common term, but I developed it after a genital injury. My neurologist did an SFN biopsy just to be sure, but it was negative. HF is usually linked to a local pudendal nerve injury rather than a systemic neuropathy.
Do you do any activities like cycling that put pressure on that area? I’m female, but I’m dealing with neuropathy and can’t use a bike seat anymore without going numb. It happened very suddenly for me too. I can’t sit on anything that compresses the nerves in my legs. Since my EMG was clear and I’ve seen some improvement with physical therapy, I think mine might be trapped nerves, like piriformis syndrome. It’s a long process to get a biopsy, so in the meantime, you might want to look into a good pelvic floor physical therapist.
The small nerve fiber biopsy is the definitive test. I had doctors ignore my results because the sample was taken from my thigh instead of my ankle, so you have to be persistent. I’m currently at a cardiologist because my dysautonomia is causing heart rhythm issues. Good luck!
You should start stretching and practicing reverse kegels to help lower the tension in your pelvic floor. It might really help if you stay consistent with it. Check out the book ‘Heal Pelvic Pain’ by Amy Stein.
I have a question: was that EMG specifically for your pelvic floor?
It’s hard for me to say for sure if I have ED because Cymbalta affects that, but I have definitely lost sensation. I usually tell people not to waste time on anything except a skin biopsy, but I think you need to provide more detail first. Are your symptoms strictly in the pelvic area, or have you noticed issues in your hands, feet, or face? I’m just trying to help point you in the right direction, even though I know SFN can present in non-standard ways.