I suspect I have PNE but I havent got a firm diagnosis

[RoanokePNEHell]

Hey everybody my name is Chris I am a male I live in the SW Virginia area in the US. Last year I had hernia surgery and not long after (3-4 months) I began to experience very horrible pain in my rectal area when I sat for long periods of time. The best way I could describe this pain would be like a toothache but in my anus and I at first attributed it to hemorrhoids (As I'm sure alot of people here did at first) I had a rubber band Ligation but the pain did not go away. The next step was to see if I had Levator Ani syndrome or Proctalgia Fugax but when they went to do a Sphincterotomy he couldn't find an anal fissure that would be cause rectal spasms so he backed out and didn't go through with.

I was referred to pain mgmt and currently I'm taking Lyrica and Roxycodone 15 mg's every six hrs. I still haven't been told by any doctor I might have PNE or PN but when I stumbled onto this website and read how it could be misdiagnosed for a long time I brought it up to them and they think I may be on to something. I am scheduled for my first nerve block at the end of April and I have my fingers crossed. Has this worked for other people? Have you found success in getting off opiates because this pain is so insane and it's driving me so crazy that I don't see myself being able to live with it all my life.

I almost admitted myself to the psychiatric center because they decided to quit treating my pain without a direct cause but after I did that they started to take me seriously again and are helping me. I'm really scared of having more needles go near my anus too because I suffered a fistula a few months ago and they drained it, it was the most awful thing ever. I don't even have medical insurance but the medical group in my town is rlly nice and they've helped me alot. Its been nice reading that I'm not alone though and I appreciate any insights given me.

[blightcp]

Roanoke, First you are not nuts.. I went down the hernia road first and the ruled out just about everything else and then told me nobody would treat the pudendal nerve.

I thought of a couple of things that might be informative.

1. As you probably already know a hemorrhoid is nothing compared to PN, I had one earlier this year that would not retract for 4 weeks and I would gladly take that over the pudendal nerve.

2. The pudendal nerve controls the external anal sphincter and some of the bowel muscles. So if the muscles are not working right it can cause or make existing hemorrhoids worse. One of the first symptoms that happened to me was a motor defect in the anal sphincter that the experts could not figure out the reason for.

3. Also the sensory nerves for the anus are there so yes your pain could be from the pudendal nerve.

What may be happening is that your pelvic floor muscles are a mess causing pressure onto the pudendal nerve.

What I have to do is use a bulb syringe, the kind they use for a baby's nose and use that to irrigate every time you have a bowel movement. That helps keep any seepage to a minimum and prevents irritation. I also use a 50/50 mix of witch hazel to water if there is swelling or hemorrhoids present. This lets the muscles work less and help the area heal from any dammage. But I would ok that with a Doctor given the fistula history.

Have you tried muscle relaxants? I know there are a couple of suppositories that are muscle relaxants, or oral generic medication that is cheap.

Lastly there is internal PT work to get the pelvic floor under control. See if you can find a PT that work in pelvic pain. NEVER do keggels, if a PT has you do those RUN!! Keggles can make pudendal nerve issues worse.

I am hoping that this is just a pissed off branch of the pudendal nerve and getting things in order will calm it down.

But if you get testicle/scrotum pain or that well known "kick in the nuts" feeling, the symptoms could be getting worse.

I wish you the best.

[Violet M]

Hi Chris,

Welcome to the forum. Sorry it has to be under unpleasant circumstances. You will read some sad stories here but also many great success stories and stories of people who are real fighters who would not give up until they found the therapy that worked for them.

I was just searching on the pudendalhope website for a physical therapist near you who has special training in pudendal neuralgia. http://www.pudendalhope.info/node/63 I don't see any listed in Roanoke but there are some in Virginia and North Carolina who might know of someone in your city. (Sometimes they attend the same conferences.) Since you don't have insurance, you might want to just get an initial evaluation from a really good physical therapist and get recommendations on ways to treat yourself. You might also find the book Headache in the Pelvis by Dr. Weiss helpful although keep in mind that the therapies he recommends don't work for everyone. There is no "one size fits all" with pudendal neuralgia. It's a matter of finding out what will work for you.

The best way I can answer your question about nerve blocks is to refer you to the article I wrote in our latest newsletter that you can access on the homepage at pudendalhope.org. Personally, I had partial temporary (several hours) relief from nerve blocks but then a flare-up of several weeks after the nerve blocks that were given at Alcock's canal. I did not have long-term relief from nerve blocks, but nerve blocks can be very important in the diagnosis and they do provide long-term relief to some people. Pudendal nerve blocks aren't typically given near the anal area -- they are more towards the middle of the buttocks and usually the doc will use some lidocaine to numb the area where the needle goes in. Some docs also use sedation.

For pain that is primarily rectal it's really important to remember that there can be quite a bit of variation between people in the anatomy of the inferior rectal nerve which is the branch of the pudendal nerve that innervates the anal sphincter. It can branch off of the main trunk in different places in different people. So a pudendal nerve block given at the ischial spine or at Alcock's canal may or may not affect the inferior rectal branch, depending on where it branches off. If you know this going into the nerve block, you will have a realistic idea of what to expect. http://www.ncbi.nlm.nih.gov/pubmed/15768420

Lots of people have been treated successfully for PN, especially young people, so stay positive.

Take care,

Violet

[RoanokePNEHell]

Hey thanks for getting back to me guys I am getting nervous tomorrow is my FIRST nerve block and is being performed by a Dr. Wadid Zaky of Carilion Roanoke Pain mgmt. I don't know what to expect honestly. I can't live like this though. I don't know how I'm supposed to find the strength to deal with this MIND NUMBINGLY constant pain that feels like a TOOTHACHE in the most sensitive area on ones body. Until I found HOPE I thought I was walkin a lonely road but seeing you guys going through the EXACT same things has definitely helped me out so much.

[blightcp]

I have had almost 10 injections over the past 4 years.

In my experience, when they get to the nerve you should feel it, and it is not a "Oh I feel it, that is the right spot doctor". I made that mistake at first.


hen the find it, it is more like "YEA YOU FOUND IT, NOW GET THIS THING DONE ", It hurts like hell, but for only a few moments until the local kicks in.

Your leg may also feel funny so yo want to have someone to drive.

I hope it goes well for you.

Carl

[RoanokePNEHell]

Yeah I imagine it's gonna be like when they had to use a local to cut out a PeriAnal Abcess that had developed after an exam and that made me scream

[Violet M]

Hey Roanake, just wondering how your nerve block went?? Hope you are doing OK.

Violet

[Gary]

With pne there is no firm diagnosis.... maybe a nerve block indicates 'probably'... and when they cut open your arse cheeks you have another 'probably'... but there is no firm.. and given what a lazy sack of shite most gp doctors are... you will struggle and push to get other possibilities ruled out e.g. gradual onset cauda equina.... unless you are rich of course.. more cash you have the better treatment you get...

PNE teaches us that there is no earth based god. We are a flawed design.

[Violet M]

a lazy sack of shite most gp doctors are.

I don't know about that. The ones I know work their butts off. They are just way overworked with too large of a patient load. There aren't enough of them to go around and there is so much they have to know that it's easy to see how a rare disease like PNE can go misdiagnosed. I would not want to be in their shoes, honestly.

Violet

[Positivepoppy]

I agree with violet, I am very lucky to have such a caring and supportive GP. By his own admission he knew nothing of this condition prior to me but now is researching and learning with me and furiously writing to specialist medics in the NHS as all treatment to date has been paid for privately. I'm sorry you've had a bad experience could you try another doctor or have you exhausted all avenues? Good luck