Health Organization for Pudendal Education

Introduction & Diagnosis

Hello, my name is Spencer. I am 39 years old, and have recently been diagnosed with PN/PNE. I had a vasectomy procedure in October of 2013 & had immediate issues at the incision site. For several months, I was getting bad advice from local doctors saying "ah, you just have Post Vasectomy Pain Syndrome, & a some nerve damage which will just burn itself out any day". That day has yet to come. I eventually got referred to UT Southwestern in Dallas, TX to see a Dr. Lotan & Dr. Rosen. Dr Lotan is a urologist & after a brief visit, he confirmed there is nothing "urologically" wrong with me & that there is a nerve issue. He sent me to Dr. Rosen. Dr. Rosen is listed as a Plastic Surgeon, but specializes in microsurgical nerve surgery, nerve injuries & nerve entrapment. He began with a series of injections, starting with the ilio-inguinal nerve & genitofemoral nerves. Those were quickly ruled out as the injections did nothing to ease the pain. He then sent me to a Dr. Chhabra for an MRN-guided pudendal nerve block injection the following day. After the injection, my pain was completely gone & it stayed that way for about 20 hours or so before coming back with a vengeance. We even traveled home (5 hours) during this time with no pain issues. After a few weeks of keeping a pain journal, we drove back down to Dallas to get some imaging done. They performed a scrotal utrasound around the incision site & found scar tissue near the clamp on the right vas deferens. The diagnosis is Nerve Entrapment of the Perineal Branch of the Pudendal Nerve.

Post Vasectomy Pain?

Immediately following my vasectomy, I had extreme pain at the incision...from the moment I sat down in the car, it was brutal. My wife was driving & I was hovering in the passenger seat, already shoving a bag of peas down my pants. I did what everybody does...take a couple of days off, then go back to work. I was working a job that was 90% desk-job, but my pain was already at a fever-pitch just on the drive there. I sat in the chair for maybe 5 seconds before jumping up & saying something here isn't right. I drove back to the Dr that performed my vasectomy & was told "ahh, you'll be fine, just need 7 more days lying down with a bag of ice". So I took another full week off of work. This was repeated a few times...I ended up laying on the couch with ice on my vasectomy incision for 4 straight weeks. It got a slightly better & I started going to work...mainly because I HAD to, or risk losing my job. I couldn't sit for long & found myself getting up out of the chair about every 15 minutes or so. I was fortunate enough to be able to work from home from time to time during our off-season & I ended up doing this 1-3 times per week from November 2013-March 2014. During this time, I changed Urologists, as I was getting no satisfaction from the one that performed the vasectomy. I had chronic epididymitis a couple of times during that stretch as well, but I kept insisting to the Urologist & to my family doctor that something else is wrong. I felt like I was being cut on constantly whether I had epidymitis or not. Also, the antibiotics that I took for epididymitis did not phase it. The 2nd & last time I had it, it ran it's course for over 6 weeks. I started doing some research & found that epididymitis is not ALWAYS caused by infection, but can flare up as a result of nerve problems. When it is the result of a nerve issue, antibiotics won't help it. I was sure this was my case. I couldn't sit down without extreme pain, was unable to sleep through the pain despite being prescribed some different insomnia medications and couldn't even stand to wear jeans for the pain they caused me. My 2nd Urologist still hadn't even brought up the dreaded "Post Vasectomy Pain Syndrome" as a possibility and after the 2nd chronic epididymitis had run it's course, had referred me to a pain specialist.

In late April, our off-season was over. I was no longer able to take a day here & there to just stay horizontal with an ice pack. This is when things started to really escalate quickly. My 90% desk job also changes to more phyical work during this time, with a LOT of squatting, bending, and sitting in solid metal chairs, all of which made my pain much worse. On my last day before resigning from my job, I hadn't slept in 2 days, had pain shooting from the incision to the coccyx bone and all the way down my right leg to my foot. I was sweating & my resting heart rate was double the normal for me. After a visit to the emergency room, they confirmed that nothing was wrong with my heart & they attributed the heart palpitations to the long term chronic pain that I was experiencing. That was enough for me to throw in the towel. I didn't know WHAT was wrong with me, but knew that I couldn't continue that way.

It was during this time that I made the decision to take advantage of a program that our health insurance offers called "Advance Medical". Basically, if you aren't getting any answers for a medical issue that you have, they get some expert doctors to review your symptoms & medical records to see if they can determine some next steps. For me, these would be Dr. Ko from MS General Hospital and Dr. Larson from Mayo Clinic. This would be the first time anybody referenced my issue as "Post Vasectomy Pain Syndrome" and where I would get the recommendation to go to UT Southwestern Medical Center in Dallas.

Current Symptoms

Unfortunately, my pain seems to have slowly gotten worse over the course of the last 6 months or so, presumably due to development of scar tissue. My pain can travel from the tip of the penis, to the vasectomy incision, along the pudendal canal to the coccyx area. If it gets REALLY bad (i.e. forced to travel in a vehicle for a while, or stand for long periods of time) then I'll also get pain shooting all the way down a leg (usually right side). I believe this is because the pudendal nerve issues inflame the piriformis muscle, which puts pressure on the sciatic nerve. Since going to UT Southwestern and getting a proper diagnosis, I have a much better understanding of what makes my pain better or worse. I am never without pain, but can almost predict where along the pudendal nerve my pain will be, depending on my activity. If I'm sitting in a solid (metal, plastic, wood), upright chair (which is impossible to do for longer than a few minutes) my pain will come on fast & extreme at the incision area. Obviously, this is not something that I can do often. If I stand for long periods of time, the pain stays mostly around the tailbone/coccyx area. In a vehicle, I'll have pain along the entire course of the nerve because of the vibrations, and it doesn't let up as long as I'm sitting. While lying on my back, I get pain around the tailbone area. I sleep "almost" on my side, and that is the only way I can get any sleep with the help of my ambien prescription. Without medication, I can not sleep through the pain at all. Every day when I wake up, I know that is the lowest pain I will have all day, regardless of what I do. This makes it very tempting to just lay in bed all day, which is something I'm trying to avoid. Following sitting, my pain is relieved by standing...or course, too much standing causes it's own pain, so it's not really a solution.

History

I don't recall where I saw a list of potential "risk factors" for pudendal neuralgia. I seem to recall seeing playing football, lifting weights, prolonged sitting, coccyx trama & cycling on that list. While my issue is certainly not "classic pudendal nerve entrapment", where the nerve is trapped between ligaments, the "risk factors" list reads like my life story. I played football from 4th grade through High School, continuing playing flag football during my 4 years in the military & some years after that, for a total of around 18 years. I lifted weights for around 15 years. For 20 years, I've worked a desk job and about 8 years ago I cracked my coccyx playing flag football. In 2013, I took up mountain biking, but only biked for about 6 months (3-5 times/week), stopping 2 months prior to my vasectomy due to inflamed prostate. Knowing all of these things now, I often wonder if my pain might be worsened by "pulling the nerve on both ends", if you know what I mean...with the entrapment from the vasectomy & possible long term issues as well. Maybe I've been on my way to having issues naturally before this vasectomy sped them up? My coccyx certainly does feel like I cracked it yesterday...every day.

Battles, Lifestyle Changes, Moving Forward

Following the diagnosis, our next question is of course, what can we do about it. Since my nerve is entrapped on the "other side" as classic PNE, the normal surgical techniques do not apply. As of right now, we're being told there is nothing that they can do, due to the location of the entrapment & a host of issues that causes. We're preparing for this to be a long term issue and are trying to make the changes we need to make it as comfortable as possible. I have made some immediate lifestyle changes, wearing loose boxers, sweats, taking jeans completely out of the mix. When I'm not in bed, I'm usually in a recliner as horizontal as it goes, spending brief amounts of time standing or walking on flat surfaces. I avoid riding in vehicles unless absolutely necessary & spending far less time in the computer chair. We're looking into getting some seating for the house & vehicle when we can afford it, most likely from these guys as I've heard great things from them.

I'm sure many of you can relate to the other battles you have to fight with PN/PNE, physically, emotionally, legally & financially. I'm on round 2 of the disability fight after being turned down on round 1, hoping for a decision soon, but of course, we expect to be denied again as 70% of people are. I'm also battling my former employer, as they should have offered disability through them in the first place, but did not. The bottom line is nobody in that building took my issue seriously (you had a vasectomy, your coworker had testicular cancer, they would say). Unfortunately, it looks like I'm getting the runaround there and I'll have to resort to getting a lawyer involved. As my case was caused by a problem with the vasectomy, I'm also working with a malpractice lawyer. The question becomes, was this avoidable by the doctor, or is it something that just happens? That's not something I know the answer to yet. I've never been in court before, never needed a lawyer before, and now I find myself in 3 separate battles because of this. Having to resign from my job with zero income has been very trying for me & my family. I had a few months income saved up, but 7 months have already passed. My wife is working 2 jobs, but I don't anticipate her continuing that long term. It's been over a year since I've hunted, fished, kayaked, mountain biked, or done anything active. We've had to make lifestyle changes, not just because of the injury, but because of the financial hit.

I believe that I'm much better on the emotional aspect, no longer having thoughts of suicide. That was quite a big hurdle to go through. Understanding that I may never be able to do the things that I love to do in life is hard. Knowing that my wife may never get to see the world or do things because of me is harder. That being said, having a great wife at my side & having the right diagnosis have done wonders for my psyche. This is such a rare issue, and is little understood by anybody that doesn't have it. As you all well know, many awkward moments result from having PN/PNE. There's telling your friend that you aren't working because of your disability, then they ask "well have you been hunting lately". There's going to the in-laws for dinner, and they're all sitting in leather chairs, leaving you the solid wooden chair (might as well give a carton of cigarettes to somebody with lung cancer). There's the friend that invites you to go fishing, thinking that since you won't be sitting, you'll be fine. When the wife wants to go out to dinner, there's the sudden anxiety over what kind of seating they have and if you'll even be able to go...anxiety over going anywhere really, as all you can think of is the drive there & the seating when you get there. There's also the misconception that avoiding certain activities that worsen the pain means that you have NO pain. (i.e. people think because you're not sitting, you must be doing just fine, where you're really at a 4 on the pain scale instead of a 9). There's the inevitable conversation with somebody that constantly asks "why can't they just x" & "can't they just y"? Everybody seems to know how to fix your problem with one doctor visit, or one magical procedure or pill.

The bottom line is that even the people that love & care about you the most have no clue what it's really like. And that's why I'm here, I suppose. I need a support group of people that understand. I need to know, when you can't sit, can't stand, & can't ride in a vehicle, how do you pass the time? How do you stay somewhat healthy? What changes do you make to your house so that at least your own space is comfortable? I apologize for the incredibly long-winded post. I have been reading this site for a couple of months & have held off introducing myself until today.

Welcome to the forum. I am so sorry you have developed all of these problems from a vasectomy. Even though I am not a man, I totally understand the issues around sitting. Our close friends and family understand my problems with sitting. When we go to friends for dinner they are use to me laying on their floor and sometimes standing halfway through dinner. My husband has finally gotten over not feeling like everyone is looking at him like he is some jerk when he is sitting and I am standing. I have been very fortunate in that none of my family nor our close friends mind my altered lifestyle. I think one key is I just do what I need to do to keep the pain at bay but knowing I will pay the price later, even if I am careful to not sit more than 30 minutes on my ice pack, and not to focus on it. I told my friends early on what my problem was and then we rarely talk about it unless they ask or I am having some new treatment done. Constantly talking about what is wrong can drive friends and family away because they get tired of listening to it. I just do what I have to do when it comes to how long I can sit and stand and I do not worry about what anyone thinks.

Have the doctors started you are anything like pregabalin or amitriptyline? It is important to try some of the medications that work on neuropathic pain so you do not develop central sensitization. Most of us do not want to take drugs but from the sounds of things you really need to get some edge off the worst of the pain.

Have you tried working with a pelvic floor PT. They might be able to work with you so you do not develop 2nd complications such as pirformis syndrome. It can take some looking around to find a good one to work with but when you find a good PT then can be very helpful.

There are only two physicians that I am aware if you want to consider a surgical option that can operate in the area you are entrapped. One is Dr. Dellon in Maryland and the other is Dr. Aszmann in Austria. Dr. Dellon does not take insurance and is really expensive. There are mixed results from those who have been to him. Dr. Aszmann developed the surgical techniques to operate on the dorsal branches of the pudendal nerve with Dr. Dellon. There have been individuals who have found it cheaper to fly to Austria and have Dr. Aszmann do their surgery than to have Dr. Dellon. They are both great about answering emails. There contact information is on the home page under physicians. However, before considering surgery I would highly recommend you try medications first. Some individuals are able to get their pain under good enough control with medications and lifestyle changes that they do not consider surgery.

As far as work, you might have to hire an attorney. Make sure the doctors have documented your case very clearly what you have and the limitations with sitting and standing. That is key to winning any type of disability. The doctors notes must have good documentation which most of the time they are not good and it is really frustrating.

Hopefully, you will find some helpful information on this site by just poking around at some of the threads.

I probably should have mentioned that I have tried a host of medications including Lyrica, amitriptyline, gabapentin, etc. None of them seemed to phase the pain. I take hydrocodone currently to take the edge off, but will go a day or two each week without to sort of "reset". I also use ice packs on the incision area, which helps temporarily.

I have looked at the physical therapist page on this site. Unfortunately, the closest one to Northwest Arkansas is in Tulsa, which is more than a couple of hours away. My concern is that the treatment wouldn't be worth the travel. I'm still hoping to find somebody locally.

I appreciate the doctor a advice & will keep them in mind if it becomes economically feasible. Thanks!

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Hi Holliday50,

Sorry to hear you might have PN/PNE. You have described your experience very well and my heart goes out to you as I understand how difficult it is, especially when you can't sleep. Quite a few PN patients have qualified for disability benefits so I hope that works out for you. When I panicked due to the pain and thought I was going insane I would alternate between sitting in hot and cold shallow tubs of water on a plastic donut cushion or kids floating pool ring. http://i00.i.aliimg.com/wsphoto/v0/8285 ... ring-b.jpg You can set shallow tubs of water up on crates in your bathtub and put hot water in one and cold in the other. You can alternate sitting in hot and cold. Kept me out of the ER a few times.
Something like this http://www.walmart.com/ip/Sterilite-10- ... 6/24488600 filled with water sitting on a crate like this http://www.uline.com/Product/Detail/S-1 ... lsrc=aw.ds

Many PN patients have more than one thing going on and a past history of possible contributing factors that have added up over time. So it's hard to say for sure whether your past history of exercise/injury may have contributed to your current situation. That's one reason it's important to at least be evaluated for possible musculoskeletal contributing factors. Even if you can't go on a regular basis it might be worth an initial eval.

The list of PT's on pudendalhope.org is not an all-inclusive list as we only list the therapists we are aware of who have given us permission to list them. There may be other excellent therapists such as manual therapists close to you who could evaluate your situation. You could check with Jerry Hesch in Nevada (he's listed in the list of PT's) to see if he knows anyone closer to you. Or the therapist in Tulsa may know someone closer to you.

I noticed you said you had an inflamed prostate before the vasectomy. How do you know it was inflamed and what type of treatment did you have for that? The reason I asked is that pudendal neuralgia can be mistaken for prostatitis.

I went through a period of a couple of years when I was mostly lying down. We rigged up a lying down computer station so that I could go online since I wasn't doing much else. I've had various arrangements in my house where I could alternate between sitting, standing, and lying down. I have a couple of laptops with a monitor hooked up to one of them. I also have several laptop carts similar to this one http://www.quill.com/altra-desk-sets/cb ... F_50221774 that I put a monitor on over my couch with a small keyboard hooked up to a computer so I could lie down. That cart is not really very adjustable up and down though -- takes too much time to adjust it. So I just kept it for lying down and used an airdesk with a keyboard on it. http://www.airdesks.com/ It's pretty lightweight so it only holds a small laptop but what I used it for was my keyboard. I used the other table for a monitor or lightweight laptop and tipped it so I could lie down and see the monitor. Then I used the air desk keyboard to type on.

For something that adjusts easily from standing to sitting it's better to get something with a pneumatic cylinder like this. http://www.touchboards.com/anthro/alcab ... MgoddHUA-Q I had a little table similar to this that I used for standing at my laptop.

You can get ergonomic workstations but they are really expensive. The equipment I mentioned above is relatively inexpensive. If you google adjustable laptop carts you will find more options.

So, you said based on the results of the scrotal ultrasound that your diagnosis is entrapment of the perineal branch with scar tissue near the clamp on the right vas deferens. I wonder how many people have scar tissue there after a vasectomy but have no pain. How would that scar tissue account for pain clear up to your coccyx? Just brainstorming questions here because my understanding is that there are no diagnostic imaging tests that can diagnose an entrapment with 100% accuracy. So I'm not sure you can draw a definitive conclusion from the ultrasound results.

Hope you find some answers on the forum that help you. I never did completely come to terms with telling people about my condition. I remember I laid down in church almost weekly for many months just because I wasn't going to let this condition completely defeat me but I never was completely comfortable with it. And I never went into much detail about my condition because most people just can't handle it. I do agree with nyt that you have to limit talking about it too much even with your close family members because they just don't understand and they do get tired of hearing about it. I tried to keep a brave face on at home and found comfort and understanding from people on the forum who understood. But everyone has to handle it in the way they are comfortable and what works for them.

All the best with your treatments.

Violet

The diagnosis was based on the results of the MRN-guided pudendal nerve block injection, of course in combination with my other symptoms. The scrotal ultrasound confirmed scar tissue at the spot of the greatest source of pain.

When they did the US did they notice any enlarged veins? I know one individual who had a large clitoral branch vein that they sclerorized and her pain was gone. The thought was the enlarged vein was pressing on the nerve. However, I know other individuals who underwent this same treatment and it didn't help. Just wondering if there might be an enlarged vein issue that might be contributing.

nyt wrote:When they did the US did they notice any enlarged veins? I know one individual who had a large clitoral branch vein that they sclerorized and her pain was gone. The thought was the enlarged vein was pressing on the nerve. However, I know other individuals who underwent this same treatment and it didn't help. Just wondering if there might be an enlarged vein issue that might be contributing.

Nah, they were looking for that as well as neuromas in the area. Report says "an area on the right scrotal incision possibly related to surgical clips or suture. "there is roughly a 5 on 3 on 3 mm area of hypoechogenicity ill-defined border. "the area corresponds to the focus of the patient's pain". "I think certainly there is a possibility of pudendal nerve involvement at the level of the scrotum". This was after the pudendal neuralgia diagnosis & trying to find neuromas and/or area of entrapment.

Hi
I pass the time doing the dance, that is what I call it. That is where you sit, stand, lay down, all for short periods before things start hurting so
bad it takes too long for things to cool down.
I read a lot. I picked up a new hobby, collecting old radios. I even make a few bucks selling some of them.
I go swimming 3 times a week. It is one of the few exercises I can do.
I used to do some short hikes, but I have problems with feet, and they are so bad lately that I don't go for walks anymore.
I don't have a TV, but I do have Netflix and watch stuff on my computer in a recliner chair.
This is just my experience.
I used to have numerous outdoor hobbies. I can't do them anymore because of PNE.
I just have to learn acceptance on a whole new level.

GO TO LOVE WHAT IS, is one of my favorite books. It is better to listen to CDs first. Byron Katie
Eckhart Tolle's books have really helped.

Ray

Spencer,

Thanks for your post. I want you to know you are not alone. I was curious to know if you'd found any relief from your issues. I had a vas 6 months ago and am experiencing similar problems. Thanks for the post and good luck.