My story: post-ejaculatory pain

[pudendo80]

Hello, quite desperate 45M here. I've been suffering from post-ejaculatory pain since 18-19 yo. Pain would kick in after one hour or so and worsen from itching to burning to full-blown clump-like, needle-like pain at scrotal base, sometimes moving to penis shaft and pelvic floor. For some mysterious reason, it would go away during the night, so I soon learned to ejaculate only before going to bed. That allowed me to have a somewhat normal sexual life, get married, have children etc. but also forced me to edge and refrain from orgasm if I happened to engage in sexual activity at any other time than bedtime. I visited many urologists during those years and have been told I had "prostatis" even if my prostate was healthy and tested negative to infections.

Two years ago something broke. After having sex with my wife I had total insomnia. Needless to say, the lack of nightly sleep also caused my symptoms to flare up and the following day I was miserable, until night. The same incident kept happening for six months, so I was given Diazepam that I took in large dosis to find some rest. In that period I started being afraid of orgasms and tended to avoid them, thus edging even more than before. I even tried to totally abstain from sexual activity, with much physical discomfort.

Six months later came the last, current phase. Insomnia disappeared but, on the other end, I started having pain also THE DAY AFTER. It goes like that: I come before sleeping, everything goes smooth, I take a long restoring sleep, the next morning I'm relaxed and THEN, around midday, my scrotum starts itching and the usual pain climax ensues. I can't do anything about it, nothing helps except ice packing. By dinner I'm in full pain. The next day I'm ok. Now I don't have any escape path: if I have orgasm I'm doomed to suffer, but if I abstain from it for more than 5-6 days I feel spasms and urge to pee until I ejaculate, then the loop starts again.

I seeked medical help. I was tested yet again for prostate issues and urogenital infections (negative), tried acupuncture (ineffective), rectal ozone therapy (ineffective), craniosacral therapy (ineffective), stopped drinking alchol (ineffective), stopped edging (ineffective). I was treated for two months by a pelvic floor PT specialist with TENS (ineffective). She did find some trigger points but even when they were relaxed pain kept coming, unaffected. She gave some good advice on urinary education. A neurologist prescribed me amitriptyline that I took for ten weeks withouth good/bad effects. At the hospital they prescribed me MRIs (negative or not relevant) and electromyography (scheduled for next month), suspecting pudendal nerve inflammation. In the meantime they gave me lyrica (Pregabalin) that I'm hesitant to take since it's so full of side effects and its efficacy in pelvic pain is much controversial (see e.g. Cochrane, 2012). I'm also doing sessions with a Pain Reprocessing Therapy psychologist, she found some emotional issues that may be involved and makes me do meditations and such, but until now I have no benefit.

Depression is kicking in. I can't find help, relief, information. If anyone on this forum have/had similar experiences or know of specialists, anywhere in the world, who might help, I'm eager to talk. Thank you for reading and please excuse my bad english.

Fabio

[Violet M]

Hello Fabio,

Welcome. I'm sorry you are going through this difficulty.

Delayed pain after an activity such as sex is pretty common with pudendal neuralgia patients. I used to get pain the following day after certain activities. I can't say where would be the best place for you to go for help and for a proper diagnosis, but you can check out the www.pudendalhope.org homepage to access the list of pudendal nerve specialists that our organization knows about. You could start out with a doctor in your country if there are any listed there. If you are from South America, you might want to private message Mod 20 on this forum to see if she knows any good places for treatment. She assists with the Spanish section of the forum.

Violet

[pudendo80]

Hi Violet thank you for answering! I'm actually from Italy. I'll try on the German forum too.

[Violet M]

Hi Fabio,

There are some excellent pudendal nerve doctors in Europe but I don't see any listed from Italy. I don't know how health insurance works there -- like if you go out of your country to a nearby country, would your health insurance pay for that? It seems like you still need a proper diagnosis to know for sure if it is a pudendal nerve problem. Are you having electromyography of the pudendal nerve specifically?

Violet

[pudendo80]

Hi Violet! Yes, I'm having pelvic electromyography next month, the hospital doctor suspects neuralgia and mentioned nerve block. Still I don't specifically read "pudendal nerve" on the prescription but "perineal pain". Yes I can travel to nearby countries and national insurance should apply anywhere in the EU as long as I apply for government-funded services.

[Violet M]

Hi Fabio,

It sounds like you are on the right track as far as getting a diagnosis and you have some good options available to you for treatment if it turns out to be pudendal nerve related. Did you ever have an MRI of the lumbosacral, lumbosacral plexus, or pelvic areas to check for any obvious problems? If not, you may want to inquire about having that done.

Violet

[pudendo80]

Yes I did. Lumbosacral one says all discs are dehydrated and I have slight "lordosis" . I don't actually have any issue/pain with my back and don't know whether and how these problems (?) are related to my post-ejaculatory pain. Pelvic one is essentially negative, they did found some muscular stress.

[Violet M]

Does your doctor think the abnormalities on the MRI are the cause of your problems? Just thinking of it logically, it seems like if the slight lordosis or the dehydrated discs are the cause of the pain that you would be having pain all the time, not just after sex, but I could be wrong.

Violet

[pudendo80]

Hi Violet! I'm being treated by the Pain Therapy Unit of the hospital and will receive a diagnosis only once I complete all the prescribed exams, so I don't know what the doctor thinks yet. But of course I agree with you, I should be always feeling pain. Before embarking on my exams journey I was already sure they'd find new problems without solving my known one. That always happens when one shoots in the dark.

[Violet M]

Good luck with all of the exams, Fabio. I would be interested to hear how it goes for you.

Violet