Pudendal Neuralgia without entrapment

[mugofwater]

I (30 male) had a doctor diagnose me with likely pudendal neuralgia but unlikely to be entrapment. From a digital rectal exam, he noted that my pelvic floor is very tight which is likely irritating the pudendal nerve. I've started doing pelvic floor therapy, but what is the prognosis for this type of pudendal neuralgia? I know entrapment is much more serious, but do most people eventually recover (at least say >80%) with irritated pudendal nerves from tight pelvic floors? My symptoms started off from mild and barely noticeable, though over the last 6 months or so, it has worsened, and now I also have some pain around buttocks when I lie down instead of just sitting. Standing/walking is still okay. Occasionally mild urinary urgency. But the worst symptom is just pain from sitting which I can't really do for more than 10-20 minutes. Burning pain though no numbness.

I barely see any success stories online so is the prognosis for non entrapped PN also pretty bad?

[Violet M]

Hi, welcome to the forum. It's hard to predict a prognosis with 100% certainty because the question is - what is causing the nerve irritation and can the underlying cause be corrected. Many people with PN get better, and with the right treatments, you have a good chance of getting better, especially since you are young, and younger people tend to heal better. But it seems like you need more information to figure out the underlying cause, and where to go from here.

I am curious how the physician determined that it is unlikely an entrapment, and if it's not an entrapment, what might be causing the muscles to tense up. There are some questions to ask yourself based on the Nantes Criteria for determining an entrapment. (https://www.pudendalhope.info/wpcontent ... iteria.pdf)
They aren't 100% accurate in every case but can be very helpful in determining what might be going on.

Do you have any idea what might have initially caused your pelvic floor to tighten up? Were there any injuries or incidents that you can point to, or did it just start out of the blue with sitting? Any exercising associated with it? Is your pain bilateral or unilateral? (unilateral could indicate an entrapment)

Have you had any MRI's to rule out anything obvious that could be the culprit?

Does pelvic floor PT seem to help at all, or does it seem to make you worse? When the PT presses on your pudendal nerve via the rectum, is your pudendal nerve tender to pressure? (Could indicate an entrapment)
Did the PT evaluate you for any musculoskeletal anomalies such as pelvic floor misalignment or SI joint dysfunction that could be contributing to the problem? Any ligament strain or hip issues?

Have you had any pudendal nerve blocks for diagnostic purposes yet? In years past, steroids were used in pudendal nerve blocks, but some major medical organizations have developed new guidelines that state there is little evidence that steroid pudendal nerve blocks are beneficial. However, nerve blocks containing an anesthetic such as marcaine can be helpful in determining a diagnosis. (Positive nerve block could indicate an entrapment)

Sorry for the list of questions but when you are dealing with PN, you have to be a Sherlock Holmes to figure out what the underlying cause of the problem might be. There is always the chicken and the egg question -- did the muscles just tense up and start irritating the nerve (and if so, why?) or is something else irritating the nerve, and is the irritated nerve causing the muscles to tense up?

While you are figuring this out there are some strategies for helping to lower your pain levels. Things like a heating pads, gel ice packs, alternating hot/cold sitz baths, TENS unit to calm down the muscles, lidocaine or icy hot patches, pain relieving creams, avoiding sitting as much as possible while the nerve heals and avoiding anything that causes a flare-up, and oral medications can be helpful such as gabapentin, lyrica, baclofen, SSRI's, SNRI's such as duloxetine. If you are like most people, you want to avoid medication but if the pain is severe, they can really help you get through the worst of the journey and once you start to improve, you can slowly wean off of them. Being able to sleep at night is really important.

If you try a TENS unit, your PT should be able to tell you where to place the electrodes for maximum benefit. I was not able to use a TENS unit prior to pudendal nerve release surgery because it increased the pain, but later after surgery it helped calm down the muscles.

I'm not asking you to answer all these questions here. Just brainstorming things for you to consider that might help you figure this out. Wishing you the best as you figure this out.

Violet

[mugofwater]

Thank you Violet for those very helpful questions.

My doctors palpated my ischial spine rectally and there was as no acute tenderness. He says that’s the most likely place of entrapment and I would be jumping off the table with pain if there’s entrapment.

I’ve had both lumbar spine and pelvic MRI but idk what the pelvic MRI was specifically looking for. They found some minor disk bulging in L4-S1. I’ve had an epidural for my L5-S1 which did nothing.

My pain is worse on right side but it is present on both sides. I used to sit 10+ hours a day for work, but I can’t recall any injuries or sudden event. It started off barely noticeably but I think gotten worse usually after long road trips or plane rides. I’ve always been a tense anxious person with a stressful job, and I think it’s very possible I’ve been clenching subconsciously for years.

I’ve only had 2 PT sessions so far and only one with internal works. I can’t say if it’s helping but I don’t believe it’s making things worse. No nerve blocks and no doctor or PT has noted pelvic alignment issues but I will ask. One of my leg is quite bow legged so idk if that could be a factor.

Sleep used to be easy but recently it starts to hurt when I lie down as well. If I lie down on my side, the upper thigh touching the bed will burn. Inner thigh also burns. If I lie on my back, the upper buttocks touching the bed will burn. Interestingly, when I walk, sometimes my right outer buttocks also feels sore. I don’t know what to make of these as they do not seem like classic PN symptoms.

Based on these, do you have any guesses on whether it’s tense muscles causing the irritation or something else causing the nerve irritation and the muscle is just a symptom?

[April]

Hi Mugo,

So sorry to hear about what you're going through. It is hard to tell if the original problem is just tense muscles or if the muscles are tense because of the pain of the pn. PT can calm muscles and if your problem is due to the muscles (and not entrapment), the pt might help you long-term. So, you could try that to help determine what's going on. I never had any long term benefit from pt, I think because my problem was entrapment.

Also, I don't think a mild reaction to internal pressure on the ischial spine area can be used to determine if it is entrapped or not. The ischial spine area tends to be tender (at least on the outside) whether or not someone has entrapment. The doctor might have hit the wrong spot or (given the fluctuations in pain that we all have) your pain might have been lower on that day.

Take care,
April

[stephanies]

Mugofwater,

If muscle tension is the primary cause of the PN symptoms, PT should help over a few months and, if not, you could ask your doctor about Botox injections to relax the pelvic floor muscles. I also think with PN it is a good idea to have MRIs of the lumbar spine and pelvis to rule in or out spine issues that can be an underlying cause of PN symptoms or at least be contributing to them.

Stephanies

[Violet M]

My doctors palpated my ischial spine rectally and there was as no acute tenderness. He says that’s the most likely place of entrapment and I would be jumping off the table with pain if there’s entrapment.

In the Nantes criteria, tenderness at the ischial spine on palpation is one of the possible criteria of entrapment but not one of the essential criteria. I had entrapment but I wasn't jumping off the table when they pressed at the ischial spine. It was just tender. The entrapment can be in Alcock's canal instead of the ischial spine.

I’ve had both lumbar spine and pelvic MRI but idk what the pelvic MRI was specifically looking for. They found some minor disk bulging in L4-S1. I’ve had an epidural for my L5-S1 which did nothing.

Pudendal nerve comes from nerve roots S2-S4. Temporary pain relief from an anesthetic pudendal nerve block would be the criteria for determining an entrapment.

My pain is worse on right side but it is present on both sides.

Pain worse on one side would be one of the complementary criteria for nerve entrapment. Pain with sitting is one of the essential criteria. My pain developed to where I had pain on both sides and all through the pelvis, but it was worse on one side.

No nerve blocks and no doctor or PT has noted pelvic alignment issues but I will ask. One of my leg is quite bow legged so idk if that could be a factor.

Sleep used to be easy but recently it starts to hurt when I lie down as well. If I lie down on my side, the upper thigh touching the bed will burn. Inner thigh also burns. If I lie on my back, the upper buttocks touching the bed will burn. Interestingly, when I walk, sometimes my right outer buttocks also feels sore. I don’t know what to make of these as they do not seem like classic PN symptoms.

Yes, I think the bowed leg could be a factor if it is affecting your gait and causing more pressure on nerves on one side of the body. Definitely have your PT check your leg length.

Inner thigh burning could be related to obturator internus being tight. The question is -- what is causing the OI muscle to be tight. The PN runs right next to that muscle through the Alcock's canal. If you have musculoskeletal abnormalities causing an abnormal gait, it can irritate the nerves and cause the muscles to be tight. My pain started out as minor but over time the entire pelvis turned into a mess with other muscles getting tight such as the piriformis muscle pressing on the sciatic nerve in the buttocks. I developed allodynia where a slight touch to the buttocks burned. I also had sacroiliac joint dysfunction causing the pelvis to be misaligned and a bad knee that I had surgery on when a teenager and caused me to walk a little lopsided. So, I recommend you have all of these things checked by a PT who can evaluate these things.

Regarding sleep, I had pain when lying down as well as with sitting.

Based on these, do you have any guesses on whether it’s tense muscles causing the irritation or something else causing the nerve irritation and the muscle is just a symptom?

Don't know for sure but I think the bowed leg could be part of the equation, along with the long hours of sitting. Not everyone who sits long or has a bowed leg develops PN, but someone with a genetic component might. Dr. Bautrant thinks there can be a genetic component that can play into the development of PN because he has seen it run in families.
If the only problem was that you were clenching your pelvic floor, why would your pain be worse on one side? Logically, it seems like there is more going on than just clenching your pelvic floor, but I could be wrong.

Violet

[mugofwater]

Even for people with bilateral symptoms, is it really very close for both sides? Or will one side still be worse? It seems odd to me that both sides will experience very similar levels of pain. I guess I’m just confused on how to classify mine as unilateral or bilateral.

[stephanies]

Mugofwar,

For me, one side is worse but the other side is not symptom-free.

Stephanies

[mugofwater]

Violet, once your sympotms progressed and started having pain when lying down rather than just sitting, did your perineum and/or buttocks become tender to the touch? Or did one happen before the other?

I ask because even though I now have some symptoms lying down, no area is particularly tender. And in fact, my perineum area feels totally fine when I press on it.

[Violet M]

I'm not sure I would characterize the perineum and buttocks as tender to the touch. It was burning pain if touched. So, Idk, would you say burning pain is tender to the touch? The burning pain got worse over time and spread to more areas. Eventually it felt like the whole crotch area had been hit with a baseball bat. Sorry, can't think of a better way to describe it.
Like Stephanie, I had pain on both sides but one side was worse. The worst pain was where the inner thigh meets the torso. Burned like hell.

Violet