Re: 12 Months in and stuck
Posted: Fri Feb 13, 2026 10:34 pm
.
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.
aussie_surfer wrote: ↑Fri Feb 13, 2026 10:34 pm 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!!
