Health Organization for Pudendal Education

November 2009 I got Swine flu. I spent a week in bed and at one point several days without moving at all. I could feel I have causing my sacral area and buttocks numbness and pain problems but I was so sick I couldn't be concerned. A week later after a lot of sitting at my work desk trying to catch up on my computer work I starting getting the sensation as if I had a UTI. But I also had considerable problems sitting. So I started shifting my sitting position around a lot. Them my back started getting sore.

A year and a half later, my family doctor, a orthopedic surgeon, a neurosurgeon, a urologist, two pain management doctors and a physical therapist, I've had numerous coccyx injections, SI joint injections, hip joint injections, 3 sets of pelvic and lumbar MRI, Lumbar CT scan, full body bone scan, my penis scoped, a numerous digital rectal examinations and load of antibiotics and pain killers I am no better off. Doctors don't seem to listen. The diagnosis so far, chronic non-bacterial prostititis (for which I am now on Proscar for) and a herniated L5-S1 that is putting some pressure on my S1 nerve root. The doctors don't seem to listen. They seem to keep getting distracted by the herniated disc and want to fuse the discs with open back surgery. I'm 48 years old, former U.S. Marine, 6 foot 185 pounds. I'm not in bad physical condition other than all of the back cramping and EVERY SINGLE SYMPTOM LISTED ON THIS WEBSITE FOR PNE.

Some of the medications I have been on are:

Prednisone (no effect)
Methelprednisone (slight temp relief for a day or two in the course)
Gabapentin (no effect)
Lodine (no effect)
Lyrica (No effect)
Tramadol (Entire body went totally numb, lost all urinary and bowel function!!)
Varying degrees of Norco (caused unmanageable constipation)

Current meds are Nucynta (only effective on back pain, no effect on pelvic pain) and Topamax (still ramping up dosage).

I've read many of your stories. I swear I could simply cut and paste many of them as my own. This condition has effected all aspects of my life. Work, income, hobbies, sex, relationship, everything. It's totally changed my personality. The more I read the documents and posts on this site the more convinced I am that I may have possibly found an answer. I will be discussing this with my neurosurgeon and urologist as soon as I can get in contact with them.

Thank you all and good luck in your recoveries!

So glad you found this site!! It really has been a blessing. Im sorry that you need it. However your story sounds like many of us here being pushed from dr to dr with no answers. There's great documentation on this site that you can take with you to your dr.

Good Luck!!
Tracy

Wow, MrPain, what a story! It's unbelievable how much you've been shunted from doctor to doctor without a proper diagnosis. I'm glad you finally found this site. I remember what a "eureka" moment it was for me, too. Hopefully you can finally get a proper diagnosis and start an effective pain and treatment regime.

Hi Mr Pain,
I was just wondering what symptoms you have exactly and if any of your doctors have prescribe a muscle relaxer such as Diazepam yet, if you are having urinary urgency and frequency like I do? Feel free to ask any questions. Read that you are a retired Marine. I used to live in Jacksonville, NC since my dad was a corpsman in the Navy there. Good luck.

Shawn

yes, you are not alone!
we are here for you and with you!

how odd you got it with swine flu. wonder if some disease can precipitate it, or if that is a fluke

have you been checked out for lyme disease? sometimes very rarely it can mask as pelvic pain... just saying since your pain came on with swine flu (which could have been lyme) I'm no doc. I was just told that by a pelvic doc who I trust only 1/2 heartedly... but all things are worth checking out here!

MrPain,

This thread on sacral pain might interest you. I apply a 5% lidocaine patch to my sacrum once a day and I've found it very helpful to relieve sacrum pain, which in turn reduces my pn pain.

http://www.pudendalhope.info/forum/view ... n&start=40

Also, re: opioid induced constipation, there is a new opioid with anti-constipation properties called Targin. Here is the relevant thread: http://www.pudendalhope.info/forum/view ... gin#p13085

Thank you all for the replies. Looking over my post I feel I do need to spend more time proof reading my work. Maybe not posting while so tired may help.

Anyway, here is my description of symptoms compared to those listed on this site:

-The chief symptom is pain in the area innervated by the pudendal nerves such that sitting becomes intolerable.

I can feel perfectly comfortable sitting for about 10 seconds. No pillow or cushioning helps. Point pain at bones at the bottom of buttocks that spreads to sacral area. Leads to bruising type pain centered on each buttocks and is sensitive vertically. Leads to spells of piriformis cramping. Sometimes severe. Eases almost instantly upon standing. But depending how severe and how long the bruising and cramping can persist days. Sitting on a heating pad gives slight relief. It's the only thing that gives any relief at all. I feel best in the mornings. But simply getting in my truck to go to work the pain starts. I try not to sit while working but it cannot be avoided completely. By 2 pm I'm exhausted and cranky.


-The pain may be lessened when sitting on a toilet seat or a doughnut pillow as this lessens the pressure on the pudendal nerve. Most people simply have to avoid sitting because it is impossible to find a cushion that relieves pain in all areas.

As above. I can sit on the can for a bit, but not a doughnut pillow.

-The pain is often not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (stop sitting, cycling, sex...).

When I first started experiencing the symptoms, erections were excruciating. Less so now. But still uncomfortable. Shooting pain in my penis and almost always the feeling of a UTI. Often the feeling of sitting on a golf ball. Pain centralizing just below coccyx.

-Often the pain is lower in the morning upon awakening and increases throughout the day.
Exactly as described.

-There may be extreme pain or tenderness along the course of the nerve when the nerve is pressed on via the vagina or rectum.
Exactly as described.

-Pain in perineum.
Exactly as described. Cramping as well. Pulsing vibrations as if I was sitting on a vibrating cell phone. In fact, I often thought that was the case.

-Pain after orgasm.
Exactly as described. In fact, for several days after my entire buttocks is completely cramped and full of spasms.

-Loss of sensation with difficulty achieving orgasm.
Exactly as described. Skin in pelvic area, buttocks and penis almost feels as if there is a low level burning sensation.

-Strange feeling of uncomfortable arousal without sexual desire.
Not, so much.

-Intolerance to tight pants or elastic bands around the legs.
Because of cramping, UTI type pain and sensitive skin this is quite true.

-Friction and feeling of inflammation along the course of the nerve when walking for too long or running.
Again, sensitive skin that feels like a low level burn, maybe describable as friction burn.

-Constant pain even with standing or lying down.
I can always feel the pain. Much worse lying on back or sitting. Lessens quickly upon standing. But because of back condition I can only stand so long. I end up resting in fetal position.

-Problem with urinary retention after urination. Need to push to empty bladder. Harder to detect the feeling of urine when passing through the urethra.
I can never tell accurately if and when I have to urinate. At work I have to go at least every half an hour even when not drinking anything. But it's often not productive. I often stand around for minutes feeling like I have to go but barely produce.

-Urethral burning with or after urination
Constant UTI symptoms while testing neg for UTI.

-Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
Again, I cannot tell if I am empty accurately or not. I feel I need to go. But can't. Similar to BPH, but show no other symptoms of BPH. BPH medications haven't been effective.
-Urinary frequency.

-Pain after bowel movement. Sometimes sufferers also report pain prior to and during the bowel movement.
Pain here is simply hard to tell. There is so much down there.

-Painful muscles spasms of the pelvic floor after bowel movement.
Painful pelvic spasms that happen all the time, that may or may not be tied to bowel movements.

-Constipation.
This is hard to tell. This is a common side effect of many of my medications.

-Sexual problems. Men complain of a diminution of sensations. Pain after ejaculation is common. For women pain during and after intercourse is often reported.
This is obvious. Pain after and during ejaculation.

-Scrotum/Testicular pain is possible. The testicle itself is innervated by another nerve however the difference in pain from scrotum/testicle can be hard to detect.
Testicular pain. Had testicles sonogram performed. All negative.

-Buttock sciatica and everything that goes with it: numbness, coldness, sizzling sensation in legs, feet, or buttock. This is more often due to a reaction of the surrounding muscles to the pain in the pelvic region. It could also be from "cross talk" of the nerves.
Completely as described.

-Low back pain resulting from radiation of the pain.
Sacral numbness, burning and pain. Could be radicular pain from L5-S1. But I have had problems with L5-S1 for years. This sacral pain started at the same time as this pelvic pain.

-The symptoms can be unilateral or bilateral. If the entrapment is only on one side, the pain can also be reflected to the other side.
Bilateral

-Some people develop conditions such as complex regional pain syndrome and even post-traumatic stress disorder after prolonged or severe pain.
I've been living with both severe back spasms, disc pain and the genital/pelvic pain for about a year and a half. I can see where a person my develop post traumatic stress disorder from this. I have setup an appointment with a psychologist. It's pretty tough, wondering if your ever going to get better and what the quality of the rest of your life is going to be like.

As for the swine flu, I really just attributed it to the fact I literally spent 3 days at one point on my back propped up against the headboard. I could feel my buttocks and sacrum getting numb. But I was so sick, 104, there wasn't much I could do and I really wasn't aware of the damage I was causing.

I did spend most of my time in the service at Cherry Point in N.C.

Thank you all again,

Wow! It sounds like you have finally hit upon a correct diagnosis. Good job.

Hi Mr. Pain,
Keep us updated as to where you are going for help now that you apparently have figured out what you are suffering from. I was sorry to read the long list of doctors and specialists that you went to, and the long list of medications that did not help. I hope that you find the help that you need soon and that you get pain relief quickly.

THIS PAGE WAS EDITED BECAUSE OF AN IMPORTANT ERROR I MADE. I changed Topamax to Cymbalta. I did try topamax at one point but found it's side effects were far too much for me as well as it didn't help at all. The Cymbalta on the other hand has been great. Thanks and sorry for any confusion I may have caused.

Hello everyone. Just brief update.

I had a discogram done. This is where they inject fluids into the injured and surrounding discs in order to see which pain is coming from which disc injury. They expanded L4-L5 and L5-S1. They were able to reproduce the sciatic pain in buttocks (side) and legs as well as the pain across my back at the level of both discs, but not any of the pelvic, sacral or coccyx pain. Conclusion, there is a second condition. Obviously, I'm not surprised. This was an extremely painful procedure and took a couple of days to get back to the pain level I was at before the procedure.

My neurosurgeon is the doctor that ordered the test. I haven't seen him since the test. I did get to discuss these results and the possibility of PN/PNE with my pain management doctor. I printed out the symptoms page off of this site and highlighted all of the "Matches" (pretty much the whole page) and showed him. He concurred that it looked to be more than coincidence. While he's familiar with PN/PNE, he's never diagnosed or treated for it. He's researching the situation. I have an appointment with the neurosurgeon next week to discuss the test results with him. I'll see what he has to say.

I have been taking Cymbalta and Nucynta for pain. I think the Cymbalta maybe helping with the pain to some degree. It maybe taking maybe some of the sharpness off allowing me to sit slightly longer. But the problem with that is the part it doesn't get rid of seems to stay with me longer after I stand up. in other words, by feeling less pain, I maybe making it worse. That downside of pain killers. Personally, I don't want to mask the pain. I want to be healed.

The topamax also has a lot of unpleasant side effects when to comes to eating. I can't tell if I'm hungry. I can't tell if I'm full. I can't tell if my blood sugar is low. I don't like this stuff at all.

Thank you again for all of the support.

Ed