Hello,
I am 27 years old male from Poland, who quite possibly suffers from some kind of pudendal neuralgia in perineal nerve area. I want to share my story.
Everything began in May 2017, when I started skateboarding a lot (important detail: I push on and stop only using my left leg). Probably in June 2017 for the first time I felt some discomfort in my left side testicle/scrotum. At that time it was very minor and I didn't connect it with skateboarding in any way. I assumed it was some urological problem, so I decided to go to the urologist in July 2017. Doctor assumed inflamation in my left epididymis and gave me some drugs. Drugs didn't help but discomfort still wasn't too bad, probably 1 out of 10 on Comperative Pain Scale, sometimes maybe 2 out of 10, sometimes even 0.
In October 2017 after all summer of skateboarding, pain got to the level of 3 out of 10. I went to the same urologist again. He touched my testicles, told me that everything is OK, but gave me some stronger drugs for inflammation. Nonetheless, this time after I left doctor's office I felt there is something wrong in my left testicle after doctor's touching and squeezing. Two days later I couldn't even sit at my chair at my job. I felt burning pain in my left testicle/scrotum and also in perineum - in the scale: 8 out of 10. I freaked out. I got back to the same doctor after a week and we decided to do all possible tests. In the October 2017 - December 2018 period I did uranalysis twice, urine culture twice, genitourinary system and testicles ultrasound twice, blood test - everything showed nothing. In the meantime my pain level got lower - 4 out of 10 and only in my left testicle/scrotum (not at perineum). I had two short flare-ups to 7/10. One of them was really strage for me, bacause I touched my left testicle/scrotum from behind with my finger, quite sliqhtly but I felt that touched placed so intensly and painfully for next 48 hours! Consulting my case with two urologist, both of them said it might be not urological problem but orthopedic.
So in January 2018 I started visiting orthopedists and connecting my condition with skateboarding. I had MRI of my spine and MRI of my hips, x-ray of my pelvis and lumbar spine - all of them didn't show any possible linkage to my testicle/scrotum pain.
During that period I discovered that my left hip has less movement than right one, so I started streching on my own, bacause I found out it might be piriformis syndrome. In February 2018, after few weeks of streching I developed a strong pain in my left sit bone (pain mostly during sitting). When in comes to my initial testicle/scrotum pain it lowered to 1/10 but I started feeling numbness around left sit bone, left buttock and left side perineum (also mainly during sitting).
In March 2018 I told my story to another orthopedist and he told me that my muscles can be overloaded on one side, bacause of skateboarding. He did ultrasonography of my left buttock/hip area and he found some small muscle insertion enthesopathies. He also touched really hard on my left sit bone/ischium. I didn't feel anything special then, but the next day - the same burning sensation in perineum like in October 2017 (but this time not really in the testicle/scrotum)! Thankfully it went away in the evening when I could lie down.
Yestarday I decided to do another test. One more time I touched my left testicle/scrotum from behind with my finger (really slightly!). And one more time I feel this place really painfully 24 hours later (even now)...
I have discovered this forum recently and I gained a lot of knowledge (wonderful place!). I think I might have a problem with perineal nerve, because as I found out it comes out from pudendal canal around ischium/sit bone (which is my main painful place right now). I have hypothesis that muscles which are connected to ischium are irritating the perineal nerve. Is it possible according to your knowledge?
Now, I am in the phase thinking what to do next. I have read a lot of stories here and I am afraid, bacause I know it can get worse. I really want to deal with it when I still can manage it even without drugs or nerve blocks (but sometimes it gets bad, when it comes to numbness and strange feeling around sit bone/buttock/perineum).
What will you do in my place, when it is still menageable? How can I confirm my hypothesis? Another MRI? What should I avoid?
In Poland there are not doctors specialized in such condtions...
All the best in your fight!
Ischium and perineal nerve? Hello from Poland
Re: Ischium and perineal nerve? Hello from Poland
Hi Przemek,
Welcome to the forum. No more skateboarding, right? You definitely want to avoid that! Since sitting hurts you probably want to avoid that too if you can, although that is more difficult. If you are lucky this will heal on its own but if you haven't been skateboarding for a long time then I can understand that you would be concerned if you haven't seen improvement.
Since your problem is one-sided and started with an activity I think you may want to be evaluated by a physiotherapist or manual therapist who can assess your pelvic alignment, and since you feel like there is less movement on one side they can assess you for other problems like sacro-iliac joint dysfunction. Are you able to see a physiotherapist for an evaluation? If you can't find any in your country, maybe you will need to travel to a nearby country where they have PT's and physicians who treat this type of problem.
I don't know for sure the answer to your question about the muscles connected to the ischium irritating the perineal nerve. I haven't heard of that but maybe it's possible. I know that the sacrotuberous ligament attaches to the ischium and there is a place there the ligament widens where it attaches that is called the falciform process of the ST ligament. You can see it in the following link: http://www.pudendalhope.info/sites/defa ... Female.jpg
I know that's a view of the female pelvis but the male would be similar from the rear.
So in my case, Dr. Bautrant shaved a little bit of the falciform process of the ST ligament off when he did my pudendal nerve (PN) release surgery. He told me that my perineal branch of the PN was entrapped. I can't say if your problem is similar, I'm just telling you that it is a possible scenario. According to the Nantes criteria, unilateral pain is one of the possible symptoms of PNE. http://www.pudendalhope.info/sites/defa ... iteria.pdf
I also had pelvic misalignment with one side of the pelvis being hypomobile due to SI joint dysfunction and the other side being hypermobile -- all of this due to exercise. Before I had a diagnosis I as doing stretches as directed by a PT who didn't know about PN. The stretching made me worse because it was irritating the PN. So, I have no idea if any of this relates to what's going on with you but the point I am making is that you need an evaluation from a good PT. The orthopedist I saw had no idea what the problem was for me -- it was a PT who finally diagnosed me correctly. Eventually I developed piriformis syndrome too but it was not one of my first symptoms.
For some people it's a hip issue with femoracetabular impingement and labral tears. For some people, it's just tight pelvic floor muscles. These are some other things you may need to have ruled out.
It must be extremely difficult not to have anyone in your country who specializes in this kind of condition. There aren't enough doctors in our country either who specialize in it, so many people have to travel. I hope that is possible for you.
Take care,
Violet
Welcome to the forum. No more skateboarding, right? You definitely want to avoid that! Since sitting hurts you probably want to avoid that too if you can, although that is more difficult. If you are lucky this will heal on its own but if you haven't been skateboarding for a long time then I can understand that you would be concerned if you haven't seen improvement.
Since your problem is one-sided and started with an activity I think you may want to be evaluated by a physiotherapist or manual therapist who can assess your pelvic alignment, and since you feel like there is less movement on one side they can assess you for other problems like sacro-iliac joint dysfunction. Are you able to see a physiotherapist for an evaluation? If you can't find any in your country, maybe you will need to travel to a nearby country where they have PT's and physicians who treat this type of problem.
I don't know for sure the answer to your question about the muscles connected to the ischium irritating the perineal nerve. I haven't heard of that but maybe it's possible. I know that the sacrotuberous ligament attaches to the ischium and there is a place there the ligament widens where it attaches that is called the falciform process of the ST ligament. You can see it in the following link: http://www.pudendalhope.info/sites/defa ... Female.jpg
I know that's a view of the female pelvis but the male would be similar from the rear.
So in my case, Dr. Bautrant shaved a little bit of the falciform process of the ST ligament off when he did my pudendal nerve (PN) release surgery. He told me that my perineal branch of the PN was entrapped. I can't say if your problem is similar, I'm just telling you that it is a possible scenario. According to the Nantes criteria, unilateral pain is one of the possible symptoms of PNE. http://www.pudendalhope.info/sites/defa ... iteria.pdf
I also had pelvic misalignment with one side of the pelvis being hypomobile due to SI joint dysfunction and the other side being hypermobile -- all of this due to exercise. Before I had a diagnosis I as doing stretches as directed by a PT who didn't know about PN. The stretching made me worse because it was irritating the PN. So, I have no idea if any of this relates to what's going on with you but the point I am making is that you need an evaluation from a good PT. The orthopedist I saw had no idea what the problem was for me -- it was a PT who finally diagnosed me correctly. Eventually I developed piriformis syndrome too but it was not one of my first symptoms.
For some people it's a hip issue with femoracetabular impingement and labral tears. For some people, it's just tight pelvic floor muscles. These are some other things you may need to have ruled out.
It must be extremely difficult not to have anyone in your country who specializes in this kind of condition. There aren't enough doctors in our country either who specialize in it, so many people have to travel. I hope that is possible for you.
Take care,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Ischium and perineal nerve? Hello from Poland
So all of your scans / x-rays have shown nothing? For instance, do you have a bad hip or something unrelated? This could all tie together.
--Male
--PN since June of 2016
--Onset from cycling
--Main symptoms: Lack of sensitivity in right scrotum and penis. Made much worse from sitting. Still sexually active but sensitivity varies.
--Other symptoms: Right hip/abductor/thigh/leg pain
--Formerly very active but currently no activity and stand at work.
--PN since June of 2016
--Onset from cycling
--Main symptoms: Lack of sensitivity in right scrotum and penis. Made much worse from sitting. Still sexually active but sensitivity varies.
--Other symptoms: Right hip/abductor/thigh/leg pain
--Formerly very active but currently no activity and stand at work.