Health Organization for Pudendal Education

Hello Everyone-

My name is Nick. I have been struggling with episodes of pelvic pain for about 8 years and am new to the pudendal neuropathy diagnosis. I have been coming to this site since about mid October shortly after my latest pain flare started and have learned a lot so I would like to share the short (hopefully) version of my story with you.

About me: 31 year old male. I live in MN, USA. Currently at a desk job (although I wasn't when this first started) and have to sit a lot. Never really been an athletic type although I got into jogging and weight lifting in the last 3 years or so.

About my pain: Pain comes and goes in episodes that have lasted as short as 2 weeks and as long as 4 months, but usually 6-8 weeks. Symptom free in between for pretty long stretches usually between 10-14 months. My primary complaint is anorectal pain that feels like a small "foreign body" sensation, this is the most consistent feature of the pain. I do experience all kinds of vague difficult to describe pain in the territory of the pudendal nerve as well that include aching, tight, and rarely burning sensations. More recently I have noticed some urinary frequency and hesitancy too but that may be related to my stress and anxiety which go through the roof during pain flares. Pain levels are usually not too bad averaging 3-4 but varies from day to day during episodes and can get as high as 6 and really suck the joy out of living.

I haven't been able to identify a solid cause of flares, but depression and anxiety seem to contribute. I am usually able to sit and drive okay but sometimes those things seem to bother me. One time using a recumbent bike at the gym seemed to cause a flare.

Things that seem to help: Sitting on a toilet seat, alcohol, strangely passing gas provides almost total relief for a moment or two. Hot baths although I stopped doing this since the relief isn't consistent and doesn't last long enough to be worth the trouble.

A couple weeks ago I had my first appointment with Dr. Antolak at the MAPS clinic and he officially diagnosed me with pudendal neuropathy based on my symptoms and the results of pin-prick and warmth detection threshold tests. I am using his self care program (suspension pad) and Baclofen. These things seem to have taken the edge off a bit in the last two weeks with average pain of only 2, but the pain is about 5 even as I write this. I am scheduled for my first injection in January with Dr. Antolak and an appointment with a psychologist at MAPS in December to try and help with the emotional aspects of dealing with the pain.

Well, this has gotten a lot longer than I intended. I am relatively new to forums in general but am sure I will come back to post often while I am being treated. Thank you so much to the wonderful people who run this forum and give pain sufferers a place to confide in one another.

Warmest regards,

Nick

Hi Nick,
Welcome to the forum. Like yourself, I have suffered from PN for a number of years (3), although the only time my pain subsided was when I laid in bed for a month following a hip replacment in March. I am a 60 year old male. On the plus side, I stand up at work so that is a bonus. On the minus side, ejaculating causes pain flares but its not like it's something you have to do like sitting (although I have been quite fond of it over the years). Dr. Antolak has been in the PN biz for a long time and I'm sure he knows a lot. He is a big buddy of a doctor I saw here in SF this fall. Since there are so few of us with this condition, the circle of doctors who specialize in it is quite small. The doctor I saw here gave me a finger-guided nerve block in Sept. which made me uncomforatable about allowing him to do more without CT guidance (and gave me sciatica for 3 mos.). I highly recommend the cushions. Don't know what I would do if I had to sit all day. I use the IC cushion and the Airgo Active Seat Cushion (Amazon). Also, look into pain pills and nerve medications. Vicodin and oxycodone have vastly improved my quality of life. I am going to give Lyrica a shot next week. Many people find Nortryptelene or Cymbalta help their pain. You have to see what you can get away without negatively impacting your work life. Pain causes more pain and actually damages the nerve through a process known as central desensitization. Try the blocks, try the PT and see what happens. As far as I have been able to tell from what I've read, the nerve blocks don't usually cure PN but are mainly beneficial as a diagnostic tool for nerve entrapment. The surgical choices (should it come to that) in the US seem to be between Dr. Michael Hibner in Phoenix or Dr. Lee Ansell in Houston. Both of them use the TG aproach that they learned from Dr' Robert in France who pioneered the procedure. I Believe that Dr. Antolak uses a modified approach that spares part of the ligament that often entraps the pudendal nerve but has the disadvantage of not exposing the entire nerve and thus possibly missing a an area that needs to be decompressessed. Good luck and let us know how you're doing. Try to keep a positive attitude (medication helps here) and let us know how you're doing.

Thank you donstore. I am definitely interested in learning more about central sensitization, I think Dr. Antolak refers to it as spinal cord windup in some of his work and indicates that this can be a cause of the dreaded "foreign object" feeling. I will definitely take your advice and ask about meds to control the pain.

I guess right now I'm hoping beyond hope that since I have only intermittent pain and the pain isn't enough to disable me that I will have a positive response to the conservative treatments. There seems to be some conflicting information out there about how effective they really are and PN certainly seems to present in many different ways in many different people. I guess that is why I feel compelled to share my case, the more information is out there the better.

Hi Nick,

You sound a lot like me in that I only have intermittant pain too (although I am a female). Did Dr. A happen to say what the diagnostic benefit of a block would be if you end up being asymptomatic at the time you go for the nerve block? If there is no pain to block at the time than what would that prove? I'm asking because I am very conflicted about trying nerve blocks when my pain is not all the time. Did Dr. A happen to say why your pain would subside and return?

Stephanie

Hi Stephanie-

I mentioned the nature of my pain cycle to Dr. Antolak and asked what I should do about my upcoming appointment in Jan. if the pain goes away on it's own. He said to simply cancel the appointment. My guesss is that a nerve block would be pointless without any pain or other symptoms for it to work on. Regardless he wants me to continue on the self care and not do any serious exercise for about six months but walking, pushups and light upper body weights for toning is okay. That may be the hardest part of all because once I start feeling better it's like I want to lift a car or something!

As far as the why part goes that is very tricky... He did say that because I get better and only have pain some of the time he doesn't think I have a true entrapment but rather something keeps irritating the nerve. Once again though I can't stress enough that I am still very early in this diagnosis and finding the cause of the PN looks like half the battle.

Hope that helps!

Thanks, Nick. I know exactly what you mean about feeling as if you can do anything when you feel better. I also totally understand how you feel when you say that during the times of pain you get a spike in stress and anxiety...that also describes me as well. It is nice to finally meet someone who has the same type of pain patterns that I have...my long ones tend to last 6-8 weeks as well. Do you stop sitting during a flare? Sorry for all the questions!

Stephanie

No problem! Questions is why we are here right? Actually avoidance of sitting and using a sitting pad is new to me, sitting never seemed to actually cause the pain and only occasionally aggravated it. I just kind of figured if my butt hurts why wouldn't sitting on it make me notice more? Got to admit the sitting pad seems to be helping quite a bit so far.

Yes, it's really nice to meet someone with the same variety of pain. It almost drove me crazy trying to find similar cases where the pain wasn't technically chronic (as in lasting 6 months or more) but far from fleeting either!

Hi Nick,

I experienced exactly the same pain pattern for about 20 years: intermittent pain, with feeling of foreign body, for as little as a couple of weeks and as long as six months at a time, then no pain for months. The problem was diagnosed as ischial bursitis as it seemed to be aggrevated by sitting. Then, I fell heavily onto my back and pelvis following which the symptoms returned, intensified and didn't go away. No one knew what the problem was. I went on-line, found a forum, diagnosed PNE and got myself to Professor Robert in France. He found the nerve to be completely flattened out on both sides and adhering to everything surrounding it, including inside Alcock's Canal; all the branches were affected. This state of affairs confirmed that the nerve had been compromised for many years and the fall was the last straw. Six years after surgery I still await relief; had the intervention occurred much earlier I daresay I'd be in a much better position today.

I hope things go well for you. Take care, Steph (I'm really Stephanie, but there are a few Stephanies posting here!)

I guess the only problem is that I would not be putting myself under the blade or subject myself to any invasive procedure if I'm asymptomatic which is why intermittant pain cases are hard to deal with. I'm going to have an MRI with Dr. Potter in the new year to get a better idea of my situation...it seems like the best course of action for me anyway.

Hello Steph-

Thank you for sharing your story with me. I suppose that is another huge problem with PN, it imitates so many other things! I myself have been diagnosed with non-bacterial prostatitis, levator ani syndrome, proctalgia fugax, a "superficial" anal fissure, and pruritis ani. And having visited about six doctors I haven't seen nearly as many as some here! Not that I'm blaming the docs or anything, they're only human too, but frustrating is an understatement. I wish you relief and happiness and will keep you in my prayers.

Stephanie- I know what you mean. It's hard enough to describe the symptoms when they are there let alone when you're feeling better and don't even want to think about it anymore. Please let me know how your course of action goes for you and I'll do the same. Maybe we can learn from one another since our cases are so similar, aside from the gender thing of course!

Nick