12 Months in and stuck

[aussie_surfer]

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[eraser]

Thank you, considering it is a model of healthcare that is respected around the world, it is sad that is broken beyond repair.

What I find so frustrating is that urologists still are unaware of the diagnosis and simply diagnose patients with prostatitis and tell them to wait it out. I cannot quite believe this, as prostatitis itself should be a diagnosis of exclusion but they do not seem to bother to investigate and that is considered acceptable in the world of urology.

I completely agree with you about the so called rareness of the diagnosis and it would be interesting how they estimate, given the rate of misdiagnosis. I appreciate whilst it is not the easiest condition to diagnosis and that symptoms evolve over time, it is actually quite simple. I do not know regulators let clinicians get away with the excuse that it is difficult to diagnosis. I would argue in the UK that is why we are supposed to have consultant led care.

In the UK, it seems pain specialists are left the make the diagnosis. This only seems to work if a patient has been through the primary specialities first, theoretically to exclude other differentials. The problem is some pain specialists are fixated on the view that pudendal neuralgia is simply inflammation and due to their training (not being surgeons), they are opposed to surgery. Therefore, they tend to pedal pain killers, anti-depressants and nerve blocks on the basis of centralisation. This in addition to the fallacy that chronic pain does not represent active injury, which of course, is complete nonsense in the case of entrapment. I agree completely with your comment about blocks, they have a clear role in supporting a diagnosis of entrapment. Instead over here, pain consultants seems to consider this treatment.

In my case, my course of pudendal neuralgia is supposedly unknown. I have challenged this on the basis that I meet all of the Nantes criteria and prolonged sitting (due to my job) on a hard chair can cause entrapment. I appreciate typically surgery or cycling is cited as one of the causes but this isn't too far off the latter. I was simply met with silence when I challenged and my letters state unknown cause. I have also been told that entrapment is very rare. However, due to misdiagnosis, if we do not even have a reliable estimate of who has pudendal neuralgia, how can consultants claim that entrapment is rate. I think there is a lot of bias simply because they aren't surgeons and don't actually see many patients with it. I have been told that surgery carries risk and what about if I get a complication and how would they manage it then (isn't this their job though?). Based on this, I was asked to try two blocks first (one was adequate in my view but still).

I have tried these blocks and unsurprisingly, whilst they supported the diagnosis of pudendal neuralgia (as per the literature), injecting steroids into the pelvis didn't work and have my doubts whether it works any anyone but still. I was then told I had to wait 5-6 weeks after the second block to see if it worked. I did minor benefit from the steroid for the first block up to a week afterwards, but no benefit at all from the second. The literature says within five days the steroid should work. I was told initially it was 10-14 days and then 5-6 weeks afterwards to assess benefit. I challenged this nonsense, so it will be interesting the discussion about next steps in the coming week. In my view surgery is the only logical next step as all other conservative measures have failed and my symptoms are getting worse, which would be expected if the nerve was trapped. I suspect I will end up having to go to surgery for France, which seems crazy, why it isn't it being done in every country around the world. Given the time critical nature of trying different interventions I really don't understand why there is so much time wasting, especially in the case of diagnostic delay.

Thank you, I will keep fighting and update how I get on. I think this will a long battle indeed but one I am determined to win.

Thanks for your message. Very sorry about the health system in the UK it sounds dreadful.

It is atrocious and completely appalling that in 2026, mainstream medicine has not caught up to the issue of pudendal neuropathy, and that the pelvic nerve pain landscape is as it is. Patients are left to fend for themselves and attempt to seek their own care, often internationally in specialised centres at their own expense. That is, if they are able to afford it at all. It’s just appalling - every one of us has a pelvis, and I am absolutely certain that pudendal neuropathy is NOT as rare as the medical bureaucracy have us believe. Misdiagnosis is rampant.

And it is all too easy for some pain specialists to dismiss this as some kind of “centralised pain” that “should have healed by now”, what a load of insulting garbage is that!!! — We are dealing with a peripheral nerve lesion, either an irritation or an entrapment! — What does shut them down is if you ask them, why is it the case then that a pudendal nerve block results in a completely pain free period for 12 hours??? If it was a ‘centralised pain mechanism or memory’ the block would have no effect!!!

I must let you know about specialist MRN, please do all the investigation you can radiologically, if you are able to. It can easily see and view the proximal pudendal nerve through its course at its exit from the lumbosacral plexus in the sciatic notch, at the level of the ischial spine and in the Alcock’s Canal, if it is interpreted by an expert. It can also very well identify changes in perineural fat surrounding the nerve, and impingement or thickening of the obturator internus fascia. The inferior rectal branch is also often visualised.

The below anatomical MRI study of the pudendal nerve shows that the proximal trunk of the pudendal nerve is clearly visualised on MRI.

https://pmc.ncbi.nlm.nih.gov/articles/PMC4965354/

Dr Hollis Potter has developed specialist software to conduct and interpret pudendal nerve MRN. The average suburban MRN is unfortunately useless for PN interpretation, and patients need to be seen in a specialist centre such as with Potter or Chhabra.

And here is a video by Professor Chhabra (an actual author of the above anatomical MRI study), showing ability of MRN to see the pudendal nerve, including its branching in the ischiorectal fossa:

https://www.youtube.com/watch?v=p_Q01oNfkho

The expert peripheral nerve surgeons such as Aszmann and Lakhiani rely a lot more on MRI when dealing with pudendal nerve pathology, and use it routinely for surgical planning. The gynaecologists such as Bautrant and Hibner are more dismissive of it.

Best wishes! Keep fighting!!

[Violet M]

Hey Aussie and Eraser,

Have been reading your discussion with great interest. Thank you for sharing all of your insights. I wish both of you the best as you seek treatment.

Violet

[Balenul]

Yes, but if you are a position where you cannot tolerate it any longer and conservative measures have not worked, action needs to be taken even if there are risks. Instead, I praise courage in battling this evil disease, as the reality is that the conservative measures often fail.

What would you recommend instead? Assisted suicide? It really isn't helpful when people say don't have surgery as you can get worse, as people have and do get better with surgery. Any surgery carries risk. Would you ban surgery for every single condition? As there is always a risk that people can get worse with surgery.

What would be more useful is some good stats about the actual risk.

I think what you are also forgetting to ask is whether outcome affected by how long the person has had the condition.

Appreciate your best intentions here but your perspective reflects that of some pain consultants. Instead, they want people continue to take medicines that don't work, be unable to work and to go to groups where people complain about their poor quality of life. Personally, I would rather risk surgery than immediately contacting dignitas.

Be aware of the risks is all I am saying. Please review the following example in the thread below:

viewtopic.php?t=9268&hilit=Ploteau

Hello,

Thank you for taking the time to explain your perspective so candidly.

I want to start by saying I completely understand the desperation that can come with severe, unrelenting pudendal pain. When conservative treatments have failed and quality of life is profoundly affected, it is entirely valid for someone to consider surgery despite the risks. That is not something I dismiss, and I certainly am not suggesting that people should simply “live with it” indefinitely.
However, your response reads as though my comments may have felt invalidating or confronting to you — and that genuinely concerns me. My intention was not to discourage people from pursuing surgery if that is their informed choice, nor to suggest hopelessness. Rather, my aim was to emphasise that informed consent must include a clear understanding of the limitations and risks of this specific surgery.

You are absolutely right that all surgery carries risk. But pudendal nerve decompression carries particular risks that patients deserve to understand clearly. These include:

* Worsening neuropathic pain
* Permanent nerve injury
* New sensory deficits
* Sexual dysfunction
* Bowel or bladder dysfunction
* Scar-related re-entrapment
* No improvement despite major surgery
* Increased complexity and risk with revision procedures

The issue is not “ban surgery” — it is ensuring that the right surgery is performed for the right pathology.

Decompression can only work if the surgeon can reach the actual site of entrapment. Many surgeons perform a standardised proximal decompression (e.g., transgluteal or laparoscopic). If the entrapment is distal — for example, within a pudendal nerve branch such as the perineal or dorsal nerve — a proximal decompression will not address the problem. In that scenario, the patient undergoes major surgery without the procedure ever reaching the true pain generator.

That is a technical and anatomical limitation, not a philosophical one.

You also raise an important question about duration of symptoms. There is evidence that long-standing neuropathic pain can involve central sensitisation, which may influence outcomes. That makes proper patient selection, diagnostic clarity, and surgical precision even more critical.

I agree that what would be helpful is transparent data — including:

* Clear success rates (with definitions of “success”)
* Rates of worsening
* Revision rates
* Stratification by symptom duration and diagnostic criteria
* Outcomes by surgical approach

Patients deserve those statistics presented openly, not framed solely through optimism or solely through fear.

My perspective is not that of “keep people on ineffective medications and in support groups forever.” Nor is it that surgery should never be considered. It is simply that when surgery is considered, it should be based on precise anatomical targeting based on suspected or identified entrapment site through assessment and specialised MRN, surgeon selection, realistic outcome data, and a full appreciation of the risks — especially given that not all entrapments are proximal and not all surgeons individualise their approach, some surgeons are actually able to customise their approach if a distal entrapment is suspected. But most do not.

If you are able to do this, I suggest you travel to a specialised centre in the US to undergo pudendal MR neurography with a neuro-radiological expert who can assess you. I attach the below video to assist your understanding of what can actually be seen by a properly protocolled and interpreted MRN:

https://youtu.be/p_Q01oNfkho?si=njk0C69kBULlTJQc

I truly respect the courage it takes to face this condition. At the same time, courage and caution are not opposites — they can and should coexist.

Sending you my best wishes and immense hope.

You are very informed and you are right in all you say.my right pudendal have problems in both alcock canal and perineal branch.i only have horrible constant urinary symptoms.sadly transgluteal decom or abdominal one can t reach perineal branch good but are best for alcock canal....surgeons that decompress perineal branch in males are very few....i am kinda confused

[aussie_surfer]

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[aussie_surfer]

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