Health Organization for Pudendal Education

Does this sound like Pudendal Nerve Entrapment/Neuralgia or maybe Cuada Equina Syndrome? (Slow Onset Cuada Equina Syndrome)

Heres a brief backstory to my current situation.
Skip to symptoms if you'd like.

I'm a 29 yr old Male. When I was 17 I hurt my lower back playing sports, didn't receive a MRI, seen a Chiropractor and had to do therapy for a couple months. I worked a job for 4 years that required a lot of heavy lifting until I was about 26 years old. I worked 50+ hours a week and also worked out at the gym some nights/mornings. This lead to a sprained neck and herniated disc in my neck at C6-C7 with no Neurological damage but I still get quite a bit of stiffness and pain in that area and can't do any heavy lifting without causing lasting pain. Now not being able to do physical work, I worked a couples of sales and office jobs for the past 3 years that required a lot of sitting and some standing.
This has made my lower back a lot worse.
I received a MRI ten months ago that shows a diffuse disc bulge at L4-L5 with mild stenosis and another disc bulge at L5-S1. My lower back flared up badly a couple weeks ago and I had to quit my Job. I went to a new Orthopedic that was reffered to me from a friend and told the Ortho Its gotten a lot worse over the past couple weeks. He thinks it's going to get better and just prescribed me some steroids and physical therapy. He might believe its an Acute injury but I didnt do anything to injure my back. This is a chronic issue that is getting worse. I've been to Urologists, Neurologists, and now an Orthopedic for my lower back issues and symptoms which none of them have an answer/diagnosis to whats causing my symptoms. Im 29 and people usually think Im a few years younger than that when they meet me. My physique looks to be in good shape with a slightly athletic build and I can walk around normal. I believe the doctors look at me like Im too young for these problems and think Im just crazy. Two of my doctors were telling me its probably a psychological problem. Im 100% sure thats not the case. I guess thats what some doctors resort to when they dont know the diagnosis.

Here are my symptoms- ( with length of time I've been experiencing each one.)

Lower Back Pain- Soreness/ Stiffness ( on & off since I was 17. Went through long periods without any issues but its been the worst these past few years.)

Sacroiliac & Pelvic Pain- Lower left pelvic area above pubic bone and left sacroiliac area. I put these two together because they feel like the same pain.Burning, sharp, and buzzing sensations that go on for hours at a time which I believe is due to nerves being irritated. ( 2 years, worse these past few weeks and gets worse with activity. Rest seems to help a little and activity has been making it worse. It doesnt feel real bad at all times but it's more constant now and keeps me up lots of nights.

Loss of Penile Sensation- This is embarassing but yes my penis and especially the glans penis ( the head of the penis) has lost most of its sensation. Sexual activity seems pointless sometimes even though I still want it mentally. I can get erect even though its a little harder to do so than before but the sensation is nowhere near what it use to be. At times it's so bad that I think I might as well be using my finger instead of my penis. Yikes, this is depressing to type this.
(around two years)

Anorgasmia- This is not being able to orgasm. I can get erect, and I can ejaculate but when I do there is no orgasm. I can tell when I'm about to ejaculate but when I do there is no pleasure or satisfaction, it just shoots out and Im done.
( around 2 years, there was a short period where it felt like it was starting to get better but now its back to where there is almost no feeling)

Urinary Hesitancy- When I go to urinate most of the time I have to strain to start the flow of urine. It can sometimes take up to about 20 seconds to start urinating. ( around 2 years)

Urinary Retention- An Ultrasound showed that my bladder was retaining urine and not voiding correctly/ completely. ( around 2 years ago)

Weak Urine Stream- Urine stream is slow/weak and I pee a little amount compared to before where I could pee a much larger amount at a time. ( around 2 years)

Walking-When i first wake up my legs near my hip and going into my lower back feel as if theyre locking up on me when I go to walk. If I walk for a bit, 15 minutes or more, my back starts flaring up and I have to stop because the pain builds up. When I stop walking I get small shock like sensations that aren't painful into the back of my legs. ( past couple months)

Leg Pain- Sharp, electrical/ jolt like pain that goes into both calves. ( this just started past couple weeks and comes and goes but it goes on for minutes at a time when it happens.)

Feet Pain- Intermittent aching and sharp pain in bottom of feet that is usually worse at night.
(around 2 years)

I have read about Pudendal Nerve Entrapment/Neuralgia which goes along with a lot of my symptoms but I don't get the main symptom which is pain while sitting down unless I happen to sit for an extended period of time.

If anyone has any insight/answers on what could be going on I would truly appreciate it.

Also, if anyone knows of the very best doctors that treat these issues that can get me some help or at least a diagnosis I would really appreciate that as well. Im willing to travel anywhere to get the best help and need a doctor thats going to be able to tell me something. I keep seeing doctors that are just wasting my time and money. Im new to this site so Im going do some browsing around and try to educate myself the best I can but I figured I put my story here to see what advice is out there.

Im not going to get into the depression that this is starting to cause me but thanks to everyone that took the time to read this and I hope you have a pain free day.

Welcome to the forum. So sorry you are having all these issues and at a younger age where you should be enjoying much more. Yes the depression is an addedcomplication given these conditions but hopefully you can find some diagnosis and treatment. A PN-aware physical therapist (see list off the homepage) may be able to help evaluate some of the urinary and pelvic problems. The doctor list is also off the homepage and the FAQs have a wealth of info. Best of luck and hope you get some relief soon.
Janet

I guess the trick in your case is to determine whether it is a peripheral nerve problem causing your symptoms or spinal radiculopathy with lumbar or sacral nerve root impingement. Dr. Attaman provided some information on that topic in a recent interview. Scroll down to the last question at this link: http://www.pudendalhope.info/node/22
It sounds like with your history and symptoms in more areas than just the pudendal nerve distribution area you could have more going on than just pudendal neuralgia. It's hard to say if the disc bulges are the issue because some people can have disc bulges with no pain. Mild stenosis doesn't sound like it would necessarily be an issue either, but then it could depend on whether any nerves/nerve roots are being compressed.

Some people on this forum have had success with treatments such as restorative exercise, electroshock wave therapy (see konedog's posts), physical therapy, mindbody therapy (see ezer's posts), etc. You could also try seeing a manual therapist to check your body mechanics and see if your alignment is off. You do have a lot of options and I think it's important to try conservative therapies before considering any type of surgery -- just based on reports from people who have gotten worse from surgery. It can be very difficult to pin down the source of pelvic pain/dysfunction and I think it is always a good rule of thumb to start conservative first before moving to invasive treatments.

From your post it sounds like you understand that pudendal nerve entrapment (PNE)is only one of the causes of pudendal neuralgia (PN). You can have PN without PNE. Like Janet said we have a list of PN specialists listed on the website but I can't tell you who the experts are on spinal radiculopathies.

Good luck as you sort this out.

Violet

Thank You very much Janet & Violet for your responses. I've been researching and learning a lot and Im going to continue untill I get better or know that I can't.

Most people get better so please hang in there and keep fighting. Sometimes it just takes a bit of time to figure out what will work for you.

Violet