Hello Everyone,
I have read through some posts on here and it looks like a great community of people and I am hoping to get some insight on a few things going on with me over the last few months.
For background, I am 35 male, relatively active and healthy no underlying medical issues that I know of.
About 4 months ago I started experiencing this really weird twitching that would start in either one of two spots, middle of my perineum area or like the back of my testicles. Not painful in the moment (like an intense eyelid twitch?) but very strong and impossible to ignore. They can last up to 24 hours straight without stopping, making sleeping a challenge.
Then about two weeks of what seemed like straight twitching I started to get some soreness in those areas, seem to move around from my anus, to perineum to scrotum. The soreness and pain would subside after a day or two but then the twitching would be back and it just vacillates between the two states (twitching for about an entire day, then pain/soreness for a couple days, rinse and repeat). I went to my doc and he said it could be prostatitis , prescribed me abx for a week but that did not help. Went to urologist, he had the same thought, put my on another 3 weeks of abx and still did nothing. CT scan , Xrays and ultrasounds were clean.
During that time and up to now, sitting has become the enemy, if I sit at work or anywhere , within 30 minutes my perineum and anus are burning in pain. Then the soreness seems to radiate down right below my glutes or upper inner thighs. Standing, walking around or laying down seem to help a little.
So now I feel like I am stuck in this cycle and as time passes things feel like they are trending worse, non stop twitching then pain. Its doing a number on me mentally, cant enjoy any of my hobbies, cant even sit on the floor to play with my 2 year old, can’t be intimate with my wife. Coupled with the few doctors I’ve seen just looking at me bewildered and not having any idea. I just need to figure out what the hell is happening so I can try and get better, do these symptoms align with some type of pudendal nerve issue?
New Here, Hello All
Re: New Here, Hello All
Hello AZfishing,
Welcome to the forum, although I wish it were under better circumstances. That must be tough having a little one to look after while you are going through this.
To answer your question, do your symptoms align with some type of pudendal nerve issue, since the areas you are describing are innervated by the pudendal nerve, the answer is possibly "yes," although you would need to pursue further diagnostics and see a provider who specializes in pudendal neuralgia, to know more certainly. Upper inner thigh pain can be related to a tense obturator internus (OI) muscle. The pudendal nerve runs alongside that muscle, and an irritated pudendal nerve can cause tension in the OI muscle that makes up part of the pelvic floor.
You could also consider the posterior femoral cutaneous nerve as you search for a diagnosis.
I was initially diagnosed by a pelvic floor physical therapist who was knowledgeable about pudendal neuralgia when the doctors I was seeing didn't have a clue. So, if there aren't any physicians who are knowledgeable about it in your area, you could check out the list of PT's on our website and see if there is one near you who can give you some insights, and they may also know of a local physician in your area who treats PN. https://www.pudendalhope.info/list-of-p ... herapists/
If there are no providers in your area, traveling might be your only option. I know it all sounds daunting at this point, but many people get better from PN and move on with their lives. I wish you all the best as you pursue treatment.
Violet
Welcome to the forum, although I wish it were under better circumstances. That must be tough having a little one to look after while you are going through this.
To answer your question, do your symptoms align with some type of pudendal nerve issue, since the areas you are describing are innervated by the pudendal nerve, the answer is possibly "yes," although you would need to pursue further diagnostics and see a provider who specializes in pudendal neuralgia, to know more certainly. Upper inner thigh pain can be related to a tense obturator internus (OI) muscle. The pudendal nerve runs alongside that muscle, and an irritated pudendal nerve can cause tension in the OI muscle that makes up part of the pelvic floor.
You could also consider the posterior femoral cutaneous nerve as you search for a diagnosis.
I was initially diagnosed by a pelvic floor physical therapist who was knowledgeable about pudendal neuralgia when the doctors I was seeing didn't have a clue. So, if there aren't any physicians who are knowledgeable about it in your area, you could check out the list of PT's on our website and see if there is one near you who can give you some insights, and they may also know of a local physician in your area who treats PN. https://www.pudendalhope.info/list-of-p ... herapists/
If there are no providers in your area, traveling might be your only option. I know it all sounds daunting at this point, but many people get better from PN and move on with their lives. I wish you all the best as you pursue treatment.
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.
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AZfishing_guy
- Posts: 3
- Joined: Sat May 11, 2024 8:13 pm
Re: New Here, Hello All
Hi Violet,
Thank you for the reply and links, it looks like there is a place near me and on their website they do list some of the things I am experiencing , I will be giving them a call tomorrow
.
After so much googling and stuff I was looking at anatomy and saw the two nerve branches from the pudendal nerve to the scrotum and perineum and that’s exactly where these twitching episodes are, that’s what lead me to searching the pudendal forums. As it is now I am paying attention to my body and muscles and everything on my right side hip, glutes, thighs are all so tight. I noticed when I sit I have always crossed my left leg over my right knee and now if I try to do the opposite way, I cant even get my right leg above my left knee, the muscles are just too tight.
I am wondering if any back issues can cause this? About a couple weeks before this all started I tweaked something in my lower back and like my right lower back, right glute and right hammy were all pretty painful and tingly but it faded away.. My lumbar Xray noted facet arthropathy on my L5-S1, maybe worth getting an MRI.
I really apricaiate you taking the time to impart your knowledge and guidance on these matters.. this is doing a number on me mentally, I used to be the happiest dude around and now I feel like a shell of myself.
Thank you for the reply and links, it looks like there is a place near me and on their website they do list some of the things I am experiencing , I will be giving them a call tomorrow
.After so much googling and stuff I was looking at anatomy and saw the two nerve branches from the pudendal nerve to the scrotum and perineum and that’s exactly where these twitching episodes are, that’s what lead me to searching the pudendal forums. As it is now I am paying attention to my body and muscles and everything on my right side hip, glutes, thighs are all so tight. I noticed when I sit I have always crossed my left leg over my right knee and now if I try to do the opposite way, I cant even get my right leg above my left knee, the muscles are just too tight.
I am wondering if any back issues can cause this? About a couple weeks before this all started I tweaked something in my lower back and like my right lower back, right glute and right hammy were all pretty painful and tingly but it faded away.. My lumbar Xray noted facet arthropathy on my L5-S1, maybe worth getting an MRI.
I really apricaiate you taking the time to impart your knowledge and guidance on these matters.. this is doing a number on me mentally, I used to be the happiest dude around and now I feel like a shell of myself.
Re: New Here, Hello All
Hello AZ,
It can be exhausting fighting pain all the time, especially when you can't sleep. It's especially difficult when it's such a private area and it can be very isolating because you can't discuss it with friends and family.
There are some back issues (spinal radiculopathies) that can cause similar symptoms as pudendal neuralgia. The pudendal nerve originates from S2, 3, and 4 so it's a good idea to have an MRI of the lumbosacral area and lumbosacral plexus to rule out any obvious problems there. https://www.ncbi.nlm.nih.gov/books/NBK554736/
You could also consider a pelvic MRI using the Hollis Potter protocol. She is listed with the New York physicians on our website. There are some places outside of New York who use her protocol so you could check with her office on where those locations might be.
Sacroiliac joint dysfunction can contribute to symptoms of pudendal neuralgia and cause the pelvis to be out of alignment which is another reason it's good to be evaluated by a pelvic PT, because SI joint dysfunction, and similar musculoskeletal problems, would not necessarily show up on an MRI.
There are some people who have pudendal neuralgia associated with a femoral labral impingement or tear in their hip. Since your symptoms are associated with a possible injury, you may want to have this ruled out by an orthopedic doctor.
It can be a challenge getting to an exact diagnosis but it's important so you can zero in on the right treatments. A pudendal nerve block can also be helpful in the diagnositic process but I see nerve blocks primarily as diagnostic because I don't know many people who had long-term or permanent relief from them. More than 3 steroid injections could be harmful to the nerve according to Prof. Robert's publication on the topic. https://www.pudendalhope.info/wp-conten ... Robert.pdf
Unfortunately, many of us have had to travel to a pudendal neuralgia specialist for treatment, and you may need to do that if your local providers can't help you. It sounds like you are very proactive and you've done a bunch of research already. So, I wish you the best as you search for the right doctors and treatments.
Violet
It can be exhausting fighting pain all the time, especially when you can't sleep. It's especially difficult when it's such a private area and it can be very isolating because you can't discuss it with friends and family.
There are some back issues (spinal radiculopathies) that can cause similar symptoms as pudendal neuralgia. The pudendal nerve originates from S2, 3, and 4 so it's a good idea to have an MRI of the lumbosacral area and lumbosacral plexus to rule out any obvious problems there. https://www.ncbi.nlm.nih.gov/books/NBK554736/
You could also consider a pelvic MRI using the Hollis Potter protocol. She is listed with the New York physicians on our website. There are some places outside of New York who use her protocol so you could check with her office on where those locations might be.
Sacroiliac joint dysfunction can contribute to symptoms of pudendal neuralgia and cause the pelvis to be out of alignment which is another reason it's good to be evaluated by a pelvic PT, because SI joint dysfunction, and similar musculoskeletal problems, would not necessarily show up on an MRI.
There are some people who have pudendal neuralgia associated with a femoral labral impingement or tear in their hip. Since your symptoms are associated with a possible injury, you may want to have this ruled out by an orthopedic doctor.
It can be a challenge getting to an exact diagnosis but it's important so you can zero in on the right treatments. A pudendal nerve block can also be helpful in the diagnositic process but I see nerve blocks primarily as diagnostic because I don't know many people who had long-term or permanent relief from them. More than 3 steroid injections could be harmful to the nerve according to Prof. Robert's publication on the topic. https://www.pudendalhope.info/wp-conten ... Robert.pdf
Unfortunately, many of us have had to travel to a pudendal neuralgia specialist for treatment, and you may need to do that if your local providers can't help you. It sounds like you are very proactive and you've done a bunch of research already. So, I wish you the best as you search for the right doctors and treatments.
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: New Here, Hello All
AZ,
Low back problems are more likely a symptom of the problem for you than a cause, which seems to be originating in pelvic floor muscles. The best place to start is with a well trained pelvic health PT. This site is a good resource: https://hermanwallace.com/list-of-certi ... ctitioners
Low back problems are more likely a symptom of the problem for you than a cause, which seems to be originating in pelvic floor muscles. The best place to start is with a well trained pelvic health PT. This site is a good resource: https://hermanwallace.com/list-of-certi ... ctitioners
Re: New Here, Hello All
Yes, It is!Your pelvis must be treated with physiotherapy then muscles and nerves Will beber able to bem funcional again...AZfishing_guy wrote: ↑Sat May 11, 2024 8:53 pm Hello Everyone,
I have read through some posts on here and it looks like a great community of people and I am hoping to get some insight on a few things going on with me over the last few months.
For background, I am 35 male, relatively active and healthy no underlying medical issues that I know of.
About 4 months ago I started experiencing this really weird twitching that would start in either one of two spots, middle of my perineum area or like the back of my testicles. Not painful in the moment (like an intense eyelid twitch?) but very strong and impossible to ignore. They can last up to 24 hours straight without stopping, making sleeping a challenge.
Then about two weeks of what seemed like straight twitching I started to get some soreness in those areas, seem to move around from my anus, to perineum to scrotum. The soreness and pain would subside after a day or two but then the twitching would be back and it just vacillates between the two states (twitching for about an entire day, then pain/soreness for a couple days, rinse and repeat). I went to my doc and he said it could be prostatitis , prescribed me abx for a week but that did not help. Went to urologist, he had the same thought, put my on another 3 weeks of abx and still did nothing. CT scan , Xrays and ultrasounds were clean.
During that time and up to now, sitting has become the enemy, if I sit at work or anywhere , within 30 minutes my perineum and anus are burning in pain. Then the soreness seems to radiate down right below my glutes or upper inner thighs. Standing, walking around or laying down seem to help a little.
So now I feel like I am stuck in this cycle and as time passes things feel like they are trending worse, non stop twitching then pain. Its doing a number on me mentally, cant enjoy any of my hobbies, cant even sit on the floor to play with my 2 year old, can’t be intimate with my wife. Coupled with the few doctors I’ve seen just looking at me bewildered and not having any idea. I just need to figure out what the hell is happening so I can try and get better, do these symptoms align with some type of pudendal nerve issue?
-
stephanies
- Posts: 685
- Joined: Mon Oct 25, 2010 3:07 am
Re: New Here, Hello All
It sounds like your symptoms are in the distribution of the pudendal nerve. In my opinion, PT is worth a good try but if you find it isn’t helping after a couple of months or your symptoms are increasing from the PT I think it is worth reconsidering with your doctor. I also think MRIs of the lumbar spine and pelvis/sacrum are a good idea to rule in or out spine issues as possible causes. I hope you can get it figured out.
Stephanies
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.