Health Organization for Pudendal Education

Hello everyone:

I hope everyone is enjoying the holidays. I am a 26 year old male graduate student in NYC who has been suffering for probably about a year now with symptoms that to me are strongly suggestive of PN (for several years prior, I had largely asymptomatic periodic tingling of the perineum that was not associated with any pain or discomfort, only this year did it turn into something worse.

All of my symptoms are greatly exacerbated by sitting (even on a coccyx/donut pillow), although interestingly enough they are temporarily *lessened* by putting some direct pressure on the tailbone area with something hard (like sitting on a golf ball) or on the heel of my foot.

The symptoms are as follows:

1. Tingling, primarily in the perineal area, but frequently radiating both to the front into the scrotum and penis and into the back towards the rectum/coccyx. This tingling can sometimes turn into a dull burning pain with prolonged sitting, and is by far the most prevalent symptom. The tingling pain is never sharp/stabbing and does not exceed a 2/3 level, but is rather constant when sitting, although more intermittently also arises when standing or lying down. I do not have the "golfball" feeling that I have read about, but sometimes when I do a Kegel-style squeeze it seems like I can "feel" the urethra in the perineum.

2. Minor urethral discomfort which appeared more recently. It is hard to describe, since I would call it neither frequency nor urgency, but there is an altered sensation when I need to use the bathroom, and generally a mild burning sensation after I do so.

3. Tenderness in the coccyx, also made worse by sitting. Tenderness in the gluteal muscles.

I have seen Dr. Kauffman (urologist) in NYC, who gave me a prescription to do pelvic floor PT. I went to a group called Duffy and Bracken, because they were in-network for my insurance and I only had a $30 co-pay. I did about 15 sessions with them before the insurance cut me off, and during these sessions they found a number of internal and external pressure points, particularly in the obdurator internus, which they de-activated successfully. The only area of pain on palpation that I have is bilaterally in some of the coccygeous muscles, and it is only at a 1-2 level and I can do self-massage there. The PT said that my muscles now felt loose and relatively "normal".

However, very frustratingly, despite the de-activation of the trigger points, the tingling sensations (all of the symptoms really) have not abated at all, and arguably have gotten worse (the tingling now spreads more regularly to the genitals and to the back and does not stay confined to the perineum, turns into burning more readily). Dr. Kaufmann prescribed Elavil/amitryptiline at a 10 mg dose, which I was initially reluctant to take as I prefer to find non-pharmacological solutions to problems, but just started on today (too soon to tell).

I am wondering first of all if these symptoms are typical of pudendal neuralgia. One the one hand, the tingling is clearly in the distribution of the pudendal nerve and is triggered by sitting. On the other hand, none of the trigger points that I've had triggered any of the tingling sensations when palpated - it seems that only posture does so.

While my symptoms might not be very severe compared to PNE sufferers, especially in the pain department, they are still quite disturbing (making it difficult for me to sit for any period of time, even when necessary) and seem to be getting worse, not better. Thus, I am looking for advice as to what to do next.

I think I may try to see Amy Stein or Stacey Futterman for a consultation, but their services are very expensive for me and I doubt I would be able to afford more than one or two sessions. What other specialists in the NYC area might it be worthwhile for me to see in order to get a proper evaluation and diagnosis? I see that Dr. Howard and Dr. Westesson in Rochester are in-network for my insurance, but I also understand that with the recent decision of the Ob-Gyn board, most such doctors are no longer seeing men...

Any help or advice would be most appreciated!

Welcome to the forum and sorry you are having these issues. I do not have much advice but to say Kegels are not a ggod exercise for PN or PNE which as you found out could be indicative of this. Since you already had pelciv PT and that is the first thing to try one of the doctors could be your next move. The OB-GYN board just overturned their decision so you should be able to see them. The FAQs off the home page provides other info on what to do. Hopefully the medicine will start helping you. Good luck
Janet

Hi Janet,

My understanding was that the ABOG board allowed their doctors to do cancer screenings for men, but that their decision on treating men with pelvic pain still stood, at least until some sort of re-evaluation in January. Is this true?

Actually Karyn posted info from the IPPS on 24 Dec that they got the restriction lifted. Maybe search for IPPS and it will come up or for Karyn's post. I am not able to copy paste from my nook and not sure I will make it to my main computer tonight but they settled this before the Jan meeting.

Wing, welcome to the forum. Sorry you are going through this. Do you have any idea what might have started this problem for you? Sometimes history can be a major clue helping with the diagnosis.

Here is a link to the thread where Karyn posted the announcement:

http://www.pudendalhope.info/forum/view ... 6&start=10

Someone from NYC posted this -- might be helpful.

shana wrote:Kathy, Dr. Diwan, he's with Manhattan Spine & Pain, he used to work with Dr. Chapman. He has an office in South Amboy, NJ, I believe he's only there on Fri, unless that changes in the fall/winter months. He is so nice and so caring, he wants to help, his staff is great too. He doesn't do nerve blocks for PN anymore as he finds it doesn't help. He started with a ganglion impar injection, which gave some relief, we are repeating it and hoping it gives relief to more areas, as it only helped the coccyx pain. The plan is if that doesn't help to try something else, there are 3 things he would try to first to see if it gives relief, if any of them helps then he would do pulsed radiofrequency nerve ablation, he doesn't do that first, he first finds that spot that gives relief. When I was seeing Dr. Chapman he basically said, nerve blocks don't work so I can't help you. Dr. Diwan wants to help and will keep trying until he runs out of options, he's not giving up so fast. At my first appointment they asked why I left Dr. Chapman, I said I didn't like his personality/bed side manners, the girl was like, yeah, that's what most people say who switch from him. I'm on a quest to get better and stay better and I will keep going until that happens, I'm hoping Dr. Diwan can help, I do know and believe he will not give up that fast.

If you want his number is 732-721-7227 (that's his NJ office) you can look up his info online.

Good luck,
Shana

Dr. Howard is retiring but nyt on the forum can tell you who is taking over for him. If your insurance would pay for it, maybe it would be a good idea to get a 3T MRI from Dr. Hollis Potter since you are right there in NYC.

Many of your symptoms are typical of PN but there are other diseases that have the same symptoms so it's important to get a really good diagnosis from someone qualified.

Good luck. Hope you can get this sorted out.

Violet

Thank you very much for the information. I think that at this point I would like to see somebody who can diagnose me as opposed to a pain management specialist that would treat the symptoms directly but not necessarily be skilled at finding the root cause of the problems. As much of the pain (though not the tingling) is based in the coccyx area, I will be seeing a coccyx specialist named Patrick Foye in New Jersey next week who does ganglion impar injections, and see if that will be something that will help me.

If I were to go up to see the Rochester doctors or other specialists, would it behoove me to have an MRI from Hollis Potter in hand, or would they be able to do valuable diagnostic work without this? Since Dr. Potter is out of network for me, I imagine that such an MRI would cost me great amounts of money, even with my insurance's (Multiplan/MagnaCare PPO networks) out-of-network partial reimbursement.

My hope (that it's not an entrapment but just some myofascial compression) is partially based on the fact that I have found muscle soreness and PT has given me clear symptom relief in the past. I know it's impossible to diagnose on the board, but the fact that PT helped create an inference against an entrapment? What leads me to suspect otherwise is, of course, the continuation of the symptoms despite the apparent loosening of my pelvic muscles and the elimination of previously active trigger points.

Thanks!

Oh, and in terms of history - the only thing that I can think of (and I don't know if this is cockamamie or not), is that I spent a good deal of time in Latin America, and some of that time in countries where I suffered from numerous stomach infections, such as Bolivia. For several years, I had IBS-like symptoms, and I believe I was keeping my pelvic muscles in a constantly clenched fashion for probably about 3-4 years.

The paradox is that as these potentially PN symptoms have gotten stronger just as I no longer have any digestive problems, and no longer clench the pelvic muscles, to my knowledge - but they keep getting worse...

I have no history of trauma, excessive bike-riding, surgeries or any other red flags.

OK, so after making some phone calls I am on Dr. Conway's waiting list to receive a phone call, and I learned that Dr. Potter is actually in-network for my insurance. I also hopefully will restart the PT once I can get in to see Stacey Futterman (which might take a couple of weeks). Is there anything else that I could be doing at this time?

If I would like to get an MRI from her, is

"MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the penis especially passing through the pubic bone.
To be reviewed by Dr. Hollis Potter."

the proper order that I should request from a neurologist?

Thanks!

The MRI info matches what is posted in the worldwide USA section for Dr Potter and I think that is the current order. Glad she is in network and you are in contact with Dr Conway and PT. The only other thing I can think of is some pain management not to totally mask and agree it is not the answer but you do not want to get stuck in a pain cycle. That can be destructive and I have heard others say they wish they had taken some neuropathic pain medicine to avoid the pain cycle. Amitriptylene, Lyrica, gabapentin and others are listed in the FAQs along with other steps I may be forgettting such as lifecycle changes. Please take a lokk there off the homepage. Best of luck.
Janet

Hi,
I'm sorry you are going through this and I just want to throw in my two cents because I have navigated the NYC area providers. Definitely get a 3T MRI with Dr. Potter. HSS was actually not in network for me, but they have an amazing financial aid plan, so I paid very little for my scans in the end. It's very difficult to get help for this condition by going in-network only, but you can try as much as you can. I know 5 Point Physical Therapy has a hardship rate for people paying out of pocket once you run out of insurance coverage. I saw Dr. Chapman for pain management and I did not like his bedside manner either. My main doctor is an obgyn, but she does not take insurance and I know there is some discussion about whether or not they can treat men.

I agree with Janet to try to get on some kind of meds to help with symptoms as soon as you can. I got into a horrible pain cycle that took a long time to get out of, and it didn't really get better until the Lyrica/cymbalta. That said, it might take awhile to figure it out, but there is hope! I am so much better now and I didn't even have to have PN surgery in the end. (just hip surgery) Feel free to PM me if you have any NYC questions. I feel blessed to be in this area where at least there are some PN treatment options in my backyard.

Hugs,
Jackie