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Painful nocturnal erections, AV fistula left penile artery, urgent opinion!

Hi everyone,

I am 27 years old and for the last 2 years I have been suffering from painful nocturnal erections. Basically, I go to bed and after 1.5-2 hours I wake up with a very strong erection that causes me discomfort. I have tried to ignore it and continue sleeping but it just doesn't work.

It started 2 years ago. I had sex with my girlfriend by the time and went to bed. Two hours later I woke up with the strongest erection ever and lots of pain. After peeing, breathing, and walking, the erection disappeared and I could sleep again. This didn't happen again for almost 2 months, but when it did, it started being a daily problem. I was sleeping max 2-3 hours in a row, every time I was walking up due to the pain of my erections. The pain was only during the night, everything was alright during the day. However, after some weeks, my penis started getting numb and the pain was not only in my penis anymore, but in the whole pelvis and perineum.
After some days, the pain was taking place during the day too. I looked for medical help, but everything was alright (no haematological issues, not nerve compression according to a spine NMR, no changes in my pennis according to HD dopplers, no sleeping issues since a polysomnography resulted normal too), so they gave me some testosterone inhibitors for a couple of weeks to eliminate any erection. The result was that my penis stayed numb for three moths after finishing the treatment. One month after recovering the sensitivity the problem appeared again. Ever since, I have been looking for a solution. Every urologist think it is a problem related to hypertonia of my pelvic floor muscles, hence, they gave me baclofen, a muscle relaxant. It has reduced the pain and the tension in my pelvis, but the erections keep waking me up. I tried some anxyolitics, tadalafil, and some other medications. I also went to physiotherapy, pelvic floor physiotherapy, acupuncture, chiropractice, but none of them helped. Now my sleep is very fragmented, my schedule messed up, and my memory very poor.

Since I started taking baclofen, my ejaculation is way less strong and less voluminous. Also the erections are very weak and I have troubles to keep my penis hard (I have not been able to penetrate in almost a year). I have experienced cramps in my perineum and some pain inside my buttocks. That's why I use warm water, massages in the area, use a rumble roller, andtry to keep calm. But I haven't improved anynore, The most I have gotten is sleeping 5 hours in a row and then 3 more for 3 days and then back to the fragmented sleep of 3 hours each time. My penis sometimes stays full of blood, but other times is hard when flaccid. The erections during the night are 80% erections (to put it somehow) and my glans is never full.

Now my current current situation: I visited some urologists and they suggested to get extra tests. A pelvis resonance showed enlargement/dilatation of some pelvic veins, a doppler showed a left varicocele (II-III) and an arteriography showed a small fistula right at the start of the left penile artery. My dopplers are still normal, so I have no signs of the fistula (the doctor said the fistula should be vissible in the doppler and by examining me). I have stopped using baclofen and now day erections are way better, so I got to have sex again. On the rotehr hand, I have crazy muscle cramps everywhere that metocarbamol doens't relieve, especially in my neck. I actually think that's the reason for my constant headaches (despite I reduced the dose of baclofen very slowly). I started using alprazolam and that reduced the crazy anxiety I had and the pelvic muscles pain. However, I still wake up many times a night. My memory is worse and I can focus on work at all. I am getting very depressed due to my reduced cognitive performance.

Now, my urologist suggests to do an embolization of the fistula, however, he warned me saying that he might need to embolize the full left penile artery, which could leave me with impotency for ever (due to the very uncovenient location of the fistula). What do you kno wabout the prognosis after such embolization?

As you can imagine, I am very very concerned about the prospective results. I am happy that there is finally something I could do about it, but the urologist IS NOT SURE whetehr this would solve the problem because my symptoms can't not be 100% linked to that fistula. Do you have any opinion of that point?

Finally, I want to add that I got a bran NMR a few days ago and the results are't very good :( I have an aracnoid cyst, some changes in my cerebelum, and enlargement of the ventricles (which I read might be due to accumulation of the cerebrospinal fluid).Hence I assume my brain started getting affected by this time without sleeping properly (I had a brain resonance as part of a study one year before this started and it was normal) :( and it forces me to get the embolization regardless the consequences. I wish I had more certainty about the prognosis and the link of the fistula with my problem.

If any of you have similar issues, please let me know if you got to solve them. I am desperate and definitively hopeless. Three countries visited and at least 8 - 9 urologists consulted and nothing. I had to stop working 1 year ago because I can't have a schedule and I am super tired, confused, and my memory sucks.

If you are a doctor and have any comment on this, any comment, please let me know.

Regards,
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