Male, pudendal/PGAD are back

[travelisdangerous]

Hey everyone, haven't posted here for 8 or so years! (sorry this might be a long one!) So I'm currently 28 but have had pudendal nerve issues since I was around 18. Started with mild pain sitting and progressed so PGAD when I was around 20. It drove me nuts and nearly ruined my uni experience. I went privately to a pudendal doctor a year or so later and got put on duloxetine, which I'm still on but I'm pretty sure it doesn't do much. Basically stopped all physical activity other than walking as the nerve was seemingly so easy to irritate.

I had flare ups from time to time but since then I've worked a lot of sitting jobs and mostly seemed to get better, and when it would flare I would know it was only a week or two and it would be back to normal again. From refraining from any strenuous activity the nerve and PGAD has been pretty good for the last 4 or so years.

In fact, it got so good that I completely forgot how cripplingly awful it can be. I recently thought how I'd love to get back into racket sports like I was when I was younger so i played badminton and squash the same week with a friend. I thought it could be a good test to see if I could start doing more exercise, thinking at worst it would only flare up for a couple weeks at most. Big mistake! This was around 12 April and my PGAD is back with a vengeance, possibly the worst it's ever been.

When I've had flares before I could masterbate once or twice a night and it would give me enough relief to go to sleep but this just isn't working anymore. I have barely got an ounce of relief since it started back up. Annoyingly, a brisk walk (pretty much the only exercise I could do) is now aggravating things and just feels uncomfortable.

I hate to admit this but I've been drinking a lot since this started back up, saying yes to any plans that involve booze or drinking half a bottle of wine before bedtime as the feeling is just so horrific and it's the only way I have of numbing this at the moment. I'm praying that this is just a flare but it's been over a month now and the feeling has been stronger than I've ever remembered. Stuck with a lot of feelings of regret and sadness that I was fine and living life last month and now I'm in a constant state of discomfort just because I wanted to be more active.

I've booked an appointment at a pain clinic in London that appears to have a knowledge of pudendal neuralgia (although can't see anything specifying PGAD specifically). From what I've read on this thread gabapentin seems like the medication I should be pushing for? I'm really really hoping that I just have to wait and eventually I'll be pretty much back to normal, but the longer this lasts the less hope I have. Also hoping I can get some proper pain management. It seems like this clinic has PN aware physiotherapists, is this something that has helped your pgad? Im not sure if I should be doing as little movement as possible and just letting the nerve heal.

Anyway thanks for reading and any opinions or advice would be amazing!! Again it's quite a shock as I was really enjoying life just last month and the regret of being in a constant state of horrific discomfort as I got too cocky is quite a lot to handle.

Thank you!!!

[stephanies]

Travelisdangerous,

I'm sorry you are back in pain. Have you had any MRIs of your lumbar spine and pelvis? I ask because sometimes there are issues that can be seen on imaging that could be contributing to PN and PGAD. For me, Tarlov Cysts and borderline tethered cord are possibilities. If you haven't had imaging, your doctor may order it for you and you can ask specifically if you have the issues I mentioned or anything else like pelvic congestion, hip pathologies, etc. that could be the underlying cause of your symptoms. Running, racket sports, any kind of lifting anything heavier than about 3 lbs. flare me too. I only walk on hard flat surfaces for exercise and do hip flexor stretches and it stays pretty calm for me. I hope yours will calm down over time.

Stephanies

[Violet M]

Hello Travelisdangerous,

That's heartbreaking that you are going through this, especially at such a young age when you should be enjoying life. I agree with Stephanie that it would make sense to have some imaging done. You also might want to consider a phone consultation with one of the European PN specialists. https://www.pudendalhope.info/list-of-doctors-2/

I found PGAD to be the most dreadful symptom of all the PN symptoms, but I am 99% better now. Weightlifting is what started my PNE. Activity/exercise made everything worse. Pelvic floor physical therapy made things worse. It might be worth it for you to try PT if you haven’t already, but if it flares things up, I don’t think it makes sense to continue it.
I did some nerve blocks which partially improved the symptoms (mostly dampened the pain) for a few hours but didn’t give any permanent relief. But the nerve blocks were worth it for diagnostic purposes.

The two medications that helped me get through PGAD were lexapro, which is an SSRI antidepressant, and klonazepam that allowed me to get some sleep at night. The Lexapro sort of took the edge off and dampened the urinary symptoms that went along with the PGAD. When I quit taking it, I weaned off very slowly – over a year’s time, because I had heard so many stories of people getting PGAD from stopping SSRI’s. Gabapentin didn’t help, but it’s worth a try cause people respond differently to meds. I know one person who takes pregabalin (Lyrica) for a bit of PGAD symptom relief.

Eventually, about a year and a half after PGAD started, I had PN decompression surgery. My instincts told me that since activity irritated the nerve, there was a good chance it couldn’t glide and was constantly being re-injured with movement. Turns out it was entrapped. Slowly over time, the PGAD and the pain disappeared.
Surgery isn’t for everyone, but based on my own experience, I’m glad I didn’t cross it off the list of possible treatments.
Wishing you success with whatever treatments you try.

Violet

[travelisdangerous]

Thanks for the reply both!!

Yes Violet I am also skeptical of PT for the same reason! It seems like absolutely any exercise sets mine off even worse so I don't hold out a lot of hope, but I think I need to at least try it.

I know this condition was a bomb waiting to go off. I just didn't realise it would be so soon as for just some racket sports! But I think I felt so good for so long I really forgot how easy to irritate this nerve was. Do you know if it's possible if it will just go back to normal if I just stay away from literally any exercise? It's crazy because it was quite bad after the sport, but not debilitating, I was still working and socializing, but it was after I went to a club and danced (nothing crazy, just moving my legs a bit) that it got really really bad. I suppose it was already irritated from earlier!

I've had the last week off work and might need to extend it...

Thanks again!

[Violet M]

Do you know if it's possible if it will just go back to normal if I just stay away from literally any exercise?

I think it's impossible to predict. Some people do get better with just lifestyle changes. I quit all exercise and was mostly lying down all day and didn't get better, so after many months I decided to try PNE surgery. I can do a lot of things now -- but have to be a little careful and avoid things like jogging and biking.

Violet