Please help

[FFSeth]

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[stephanies]

Hello and welcome to the forum,

Symptoms of PN can come and go or change locations within the distribution of the nerve, especially early on. When I first developed PN issues, my first symptoms were primarily bladder related also. Are you sure you actually had an infection? Many men are mis-diagnosed with prostate infections prior to figuring out their true problem is their PN. My early bladder symptoms resolved over a couple months and were followed by pain in the distribution of the nerve. There are a few members here who have a history of weightlifting and this can contribute to PN pain. If you are still lifting weights, you should put that activity on hold immediately until you get more information about your pain. Is your PT finding tight pelvic floor muscles? A month is a relatively short period of time to know if PT is working. You should certainly give that conservative treatment more time before deciding if it is helping. Your PN block will also help with a diagnosis. It is possible your situation can be resolved through PT, it just depends on what is actually causing the pain you feel. Please keep us posted.

Sincerely,
Stephanies

[FFSeth]

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[Violet M]

Hi FFSeth,

I'm very sorry you've had to come here and only hope that maybe we can provide you with a bit of valuable info. As I read your story I was thinking many of the same things as Stephanie. Did they do a culture to determine that you actually had an infection? Antibiotics have some anti-inflammatory properties which could explain your temporary pain relief although it is possible you truly had an infection. http://www.ncbi.nlm.nih.gov/pubmed/12054075 It's hard to say unless they actually did a culture because PN can be misdiagnosed as prostatitis.

My PNE was caused by weightlifting/exercise causing chronic ligament strain and pelvic misalignment with ligaments impinging on the pudendal nerve at the ischial spine and falciform process. Like you, I had a lot of urinary symptoms early on, as well as the aching pain -- worse on one side. One of our former directors also developed PNE after a history of weightlifting. Her ligaments were enlarged and impinging on the nerves. She had an excellent outcome from PNE release surgery. I noticed you mentioned your "poor pelvic alignment." Did your PT tell you that you had pelvic misalignment? Have they assessed the state of your ligaments?

In my case stretching recommended by a PT was what pushed me from minor pain into full-blown PNE pain because the nerve was compressed between the ST and SS ligaments and couldn't glide so when I stretched it caused a stretch injury to the nerve. I don't know what kind of stretches you are doing but just wanted to mention what certain types of stretching can do to the nerve if it is mechanically entrapped.

You might want to do a search on donstore's posts. Some people have pelvic pain due to an ilioinguinal hernia so that is something you probably want to have ruled out.

Resting sounds like a good idea. Some people heal with lifestyle changes. I wasn't one of them, (stayed mostly lying down for 8 months with no improvement before surgery) but thankfully PNE release surgery has given me back a fairly normal life. I will never do heavy weightlifting again but at least I can enjoy life now.

I can't say for sure about whether to continue with PT. Some people get relief and some don't. It's definitely worth a try but my understanding is that you should be seeing some improvements before too long if it's going to help you. I think I tried 12 sessions before surgery but it wasn't helping.

Good luck with the nerve block. I would be interested to hear how it goes for you.

Take care,

Violet

[FFSeth]

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[Violet M]

My pt is pretty much able to reproduce all of my pain by pressing on various trigger points. Could this be a sign that I only have pelvic floor dysfunction? I'm terrified and not sure how to proceed. Does anyone have any info on Jerome Weiss in San Francisco? I have read some promising data on his non invasive techniques.

Depends on whether the trigger points are along the course of the nerve, at the ischial spine and alcock's canal, or more in the muscles themselves. According to the Nantes criteria for nerve entrapment, tenderness along the course of the nerve can indicate nerve entrapment, particularly at the ischial spine and if the pain is more on one side, although it can be difficult to determine the most tender area if the pain is diffuse. http://www.pudendalhope.info/sites/defa ... iteria.pdf

If you can get PT and nerve blocks locally, is it worth it to travel to Weiss? I don't know. I can't tell you Dr. Weiss's most recent protocol but from reports I have read from patients over the 10 years I've been moderating the PNE forums, he uses some of the same techniques that some of the pelvic floor PT's use and also does repeated pudendal nerve blocks using finger (not image) guidance. Some people reported that they had followed this protocol for quite a long time and had become disenchanted with the lack of improvement and went on to try PNE surgery. I tend to agree with Prof. Robert on limiting PN blocks to no more than 3 due to the risk of nerve damage because I know people who have gotten worse from nerve blocks. So maybe it's reasonable to try the Weiss protocol but if you aren't seeing improvement pretty soon, not to get stuck in an endless round of treatment that isn't helping. Regarding nerve blocks, most people don't have long-term complications from nerve blocks so it may not be worth it to waste a lot of time worrying about the risk because nerve blocks can be valuable in helping to determine a diagnosis, but in your decision making process you may want to think twice about having a lot of them.

It seems entirely plausible that if you had a local infection in the testicular area that it might have caused your pelvic floor muscles to become overly tense from the pain, but it seems like a bit of pelvic floor myofascial release would help if that were the primary cause of the pain. Often PN is caused by a series of triggers or multiple triggers such as a combination of heavy exercise and an infection, etc. And then there is always the question of whether you had epididymitis that triggered pudendal neuralgia, or whether you actually had pudendal neuralgia that mimicked epidiymitis-type symptoms to begin with. People with PN do sometimes complain of redness/swelling in parts of the genital area. According to the Nantes Criteria article, "scrotal skin is innervated by sacral nerve roots and the pudendal
nerve, the testis (and ovary), epididymis and vas deferens are innervated by thoracolumbar nerve roots."

Sorry, I can't give you definite answers or advice but hopefully some of this info will help as you make your decision.

Best,

Violet

[FFSeth]

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[FFSeth]

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[Ray P.]

I would give anything to be in the shape I was in before I had my second never block from Dr Weiss. This was 12 years ago.
The block turned a bad situation into something much worse. They told me the blocks aren't going to cause any bad side effects.

Don't believe what they may be telling you.

ray

[Violet M]

Seth, I guess it's impossible to predict at this point whether the new pain will go away. Since it wasn't a pudendal nerve block and probably wasn't done under image guidance it's hard to say for sure which nerve was hit. Does the physician know? It sounds like you believe it was the pudendal maybe...

Hopefully it will get better because some of the people I know who had permanent worsening of symptoms after a nerve block had a steroid used in the block and feel that it was some type of reaction to the steroid, not necessarily from the needle itself. Dr. Antolak and Dr. Bensignor would purposely touch the nerve with the needle to make sure they were in the right place for a pudendal nerve block so I don't think you can conclude that just because the nerve was touched you are going to have permanent damage. Dr. Antolak touched one of my nerves with the needle during a nerve block and I definitely felt it! I had some worsening of symptoms for about a month although that could have been from the steroid. But then things leveled off back to baseline.

The important thing is not to stress over it too much because that could cause your pelvic floor to tense up more. Maybe you could also use some extra pain management from drugs or heat and ice until it starts to subside so you don't get central nervous system wind-up.

I'm trying to understand the statement that your pelvic floor is relaxed but at the same time you say your obturator is pretty tight. Is that the obturator internus? If so, that is one of the main muscles of the pelvic floor so if it's tight, I don't understand how your pelvic floor is relaxed. The obturator internus was one of my main problems. The pudendal nerve runs right next to it in the alcock's canal. You can look at the image of it in the flyer that's on the homepage at pudendalhope.org.

My pain was achy to start out with but it eventually developed into severe burning in addition. I would describe it as feeling like I had been hit in the crotch and pelvic area with a baseball bat. I also eventually developed lots of pain outside of the pudendal nerve area -- in the piriformis area, glutes, right leg and foot.

Have you been able to make any lifestyle changes -- like no longer lifting weights and avoiding sitting?

Violet