Health Organization for Pudendal Education

Hello, I am sorry if this a little long. Here is a quick summary:

I am a 37-year-old male experiencing distressing symptoms during protracted withdrawal from Effexor (venlafaxine). My main issues are extreme premature ejaculation and new PGAD-like symptoms, where I get unwanted genital arousal sensations from mechanical triggers like driving or walking.
These arousal sensations became much more prominent after a doctor suggested PGAD, which caused me to obsessively worry and become hyper-aware of the area. Importantly, the arousal is not constant, and orgasm provides significant relief for over 24 hours. A urologist found nothing wrong, and a pelvic floor PT did not note a particularly hypertonic pelvic floor.
I'm trying to figure out if this is likely true PGAD, a form of CPPS or nerve sensitization from withdrawal, or a symptom that is being heavily amplified by my anxiety and hyper-focus.

Full context :
I want to know if I am dealing with potential PGAD or something else. I am a 37 year old male in otherwise good health. Here is some back story:

- I was on Effexor XR 75mg for 8 years. I tapered off it linearly in 6 months, was off for 2 months completely, then got hit with protracted withdrawal. Symptoms were insomnia, extreme premature ejaculation, severe anxiety, extreme OCD, and others. It has currently been over 5.5 months that I finished my taper. I reinstated 2.5mg after the symptom onset, and have been on this reinstatement dose for 3.5 months so far. Symptoms have greatly improved, however one new(ish?) symptom started appearing: pgad-like symptoms.
- For a bit more backstory, while on Effexor, maybe 4-5 years ago, I started getting pelvic pressure feelings, on and off. It would come for a few weeks, then subside. I had my prostate checked etc, nothing was found.
- Fast forward to this period in my withdrawal, I have the same feelings now, however, this is coupled with extremely sensitive genitals and extreme premature ejaculation (I can often ejaculate when aroused without touching and before a full erection).
- I have had tests done around my prostate and have seen a urologist. Everything seemed normal. I also see a pelvic floor physical therapist, who did some inner work and did not notice a particularly hypertonic pelvic floor.
- I haven’t been having lingering, position independant genital arousal yet. However, one night I woke up from a wet dream that wasn’t sexual. I fell back asleep and almost ejaculated on the same wet dream. I woke up in a panic, and then remembered something a doctor told me: he said I might have PGAD instead of PSSD, what I was fearing initially. He determined that when I said I had extreme premature ejaculation. At that point, I started worrying obsessively about the pgad issue. And at that point, I started thinking about my genital area alot, and noticed more and more “arousal” sensations throughout every day life. For example, when driving in the car, I could feel some arousal in my genitals sometimes. Sometimes, when my child is sitting in my lap, I could feel the mechanical arousal (very disturbing).
- Since I have been suspecting PGAD, I have orgasmed twice. Orgasming has reduced the feeling greatly for a long period of time (24 hours +), making me less sensitive. To be clear, I do not always feel the feeling of arousal. It comes and goes, mainly when there is mechanical sensation around it.
- Yesterday night, it had been 12 days since I orgasmed, and I had just swam in my salt water pool. I was fine all day, no arousal sensations. But when I went for a walk to the park after, I felt a lot of mechanical stimulation which put me in a constant state of uncomfortable arousal while I was walking. It persisted during the entire walk. When I got home, I took a bath, where the feeling was still kind of there (and my focus was there a lot also). I squeezed the tip of my penis a few seconds and ejaculated. I felt relief somewhat afterwards, however I didn't sleep much at night out of fear of developing chronic pgad.
- So my theory is either I have some kind of mild / escalating pgad, or cpps with premature ejaculation, and this may or may not be psychosomatic. It is a strange coincidence that pgad -like symptoms started appearing when I started worrying / obsessing about it, even if genital sensitivity was present before.
- What is my most likely diagnosis? And what should I do?

Welcome to the Forum, Raymundo. I don't have pgad, so I am somewhat limited in my ability to give you feedback. But from what I've read on this site, pgad is usually much more intense than this. I think your idea that your focus on that area is triggering this seems plausible. It sounds like you are having a really difficult withdrawal process. I can understand the decision to temporarily go back on a low dose. Have the doctors overseeing your tapering process discussed the possibility of genital arousal as a side effect of withdrawal?

April

Hello Reymundo,

I am sorry to hear you are going through this. It is a very difficult illness, but many people do get better with the right treatments.

PGAD symptoms can come and go and vary in intensity. Some people have some temporary relief after orgasm but not everyone does. It's typical for people with PGAD to have difficulty with movement such as driving.

There are a number of theories as to what causes PGAD. I can't say for sure what your most likely diagnosis is. For some people there may be a chemical component related to discontinuing an SSRI or SNRI. These are powerful drugs that affect the nerve synapses. However, since these drugs can dampen the ability to achieve sexual arousal, who is to say whether there was already an underlying condition with nerve damage that was being masked by the drug until it was discontinued? There are people who have gotten PGAD who never took SSRI's/SNRI's and after they had PNE surgery to release pudendal nerve entrapment, the PGAD went away. So it isn't strictly a psychological condition in many cases. When sexual arousal is involved, there is always a psychological component, but that doesn't mean there isn't a nerve issue as well. After you have felt the sensation of PGAD, it is difficult to get it out of your mind, so you are pretty normal in that way.

For some people the main trunk of the pudendal nerve is affected but for other people with PGAD it is just the dorsal (clitoral or penile) branch of the pudendal nerve that is affected. One neurologist told me that whether or not you have PGAD with pudendal neuralgia depends on which nerve fibers are affected.

It would make sense for you to at least do some diagnostic tests to determine if there is a pudendal nerve problem and to consult with a pudendal neuralgia specialist.
https://www.pudendalhope.info/list-of-doctors-2/
If you haven't already, you would also want to have an MRI of the lumbosacral area to rule out any spinal abnormalities. You will need to ask them to check for Tarlov cysts which can cause PGAD. There are some things you could try in the mean time, like lyrica along with the SNRI you are taking, and for help getting to sleep you could try something like clonazepam. You could also try using a lidocaine based spray for premature ejaculation. https://pmc.ncbi.nlm.nih.gov/articles/PMC9772944/

Wishing you the best,

Violet

Thank you very much April and Violet for your responses.

So far the feelings have come and gone, right now they are pretty strong. It gets worse with stress, driving, and certain seated positions. It really seems like it is mechanically triggered. I went to see two pelvic floor physios and two urologists, none have really been able to help. I think my next bet is to consider contacting doctors in Canada but in a different province... Pelvic floor specialists.

Really the feeling is quite weird... It is a pressure around the base of my scrotum that comes and goes, and when it's there my genitals are much more sensitive.

Anyhow sorry for the late reply, I really appreciate your time!

Hi Reymundo,

Sounds pretty tough what you are going through. I'm sorry to hear the providers you were seeing couldn't help.

What you are saying about the symptoms being mechanically triggered makes a lot of sense. When one of the neurologists I saw told me to go see a psychiatrist I knew that didn't make sense because it was clear that there was something mechanical going on, and I was right. So follow your instincts. I hope the doctors you travel to will be able to help you.

Violet

Hi I just wanted to say my PGAD started following withdrawal from Venlafaxine as well. I had previously been on SSRIs and come off with no issue.

Something that really helped mine reduce was cutting caffeine and alcohol completely and increasing my water intake a lot. Sounds really minor but it reduced mine so much. Just wanted to reply in case you are struggling still.