12 Months in and stuck

[stephanies]

Alex,

Sorry for the very late reply. PN symptoms can be from entrapment or they can be from other issues including hip pathologies and spinal problems. I always think it’s a good idea to rule in or out disc issues, Tarlov Cysts, etc. that can be seen on lumbar and sacral spine imaging as they could be the underlying issue that caused your symptoms to begin after the use of the massager.

Stephanies

[Alex H]

Ladies, I do not have pudendal neuralgia. I dodged this very real and scary bullet.

I am doing substantially better only after my first pelvic floor physio. My pain is already down to 25% of the original pain.
I can sit for hours. I even took a 6 hour flight and while I had some discomfort, I was not in pain.

All of my pain is coming from 1 muscle that is stuck in a protective spasm and it was replicated by palpation by my pelvic floor physiotherapist.

Purpose of my post is to educate future readers of this forum that likelihood of getting PN from anal insertion is significantly smaller, in comparison with a muscle spasm. Good pelvic floor physiotherapist is key for recovery in this situation. This is a treatable condition and most patients recover fully.

I will come back to post here once I fully recover.

[Violet M]

That's great news, Alex. That's why it makes sense to at least give pelvic floor PT a try before going into an invasive surgery. You won't know unless you try PT whether it will work.

As a side note, it's good for everyone to keep in mind that pudendal nerve entrapment (PNE) and pudendal neuralgia (PN) are not the same thing. Surgery is only appropriate for people who likely have an entrapment (PNE). People with a muscle spasm who don't have a nerve entrapment can still have pudendal neuralgia caused by irritation from the muscle impinging on the nerve but surgery would not be the right treatment in that case. I'm not saying Alex has or ever had pudendal neuralgia, however he did post previously that a pudendal nerve block took away his symptoms for a day and his symptoms were in the distribution area that is innervated by the pudendal nerve. So for anyone in a similar situation as Alex, it was not unreasonable for him to suspect at one point that he had some pudendal nerve issues. I'm glad to hear that he has determined that it was not PN.

Wishing you a full recovery, Alex.

Violet

[eraser]

Hi Alex,

I deeply share your concerns about the risks of surgery. Personally I am neither pro, nor against, surgery. I am very much open to surgery in the right set of circumstances. It really depends on the individual person and their history. I always remember Violet’s learned words when it comes to this, and ask myself the question, “Is my quality of life and pain that bad, that I am prepared to take the risk of becoming worse.” - Although I am limited, I can still exercise most days, and I am very worried about the risk of my pain worsening long term from surgery, as I have read can happen on this forum, from other people’s direct experiences.

I find it incredibly frightening that there is so little understanding, and limited help available, for people who develop pelvic pain from activities that are common. I feel like I’m living in a nightmare.

I am engaging in pelvic PT, for me, it actually feels relieving when the PT performs the internal release work, and I feel better immediately after it. But the relief is only short lived.

I read the following post on another forum, and I believe it is relevant to this discussion. I post it below for reference, as I feel it makes some good points:

I truly wish you all the best, Alex. You are not alone. DM me anytime.



Before entering surgery, consider - the pudendal nerve as the main nerve of the perineum. It is a mixed motor and sensory nerve. This nerve is crucial.

Diagnostic injections and a T3 MRN can give a good picture (high resolution) of entrapment if one exists within the proximal branch. However, the same can not be said for the distal branches (inferior rectal nerve, perineal nerve, and the dorsal nerve of the penis or clitoris).

While in surgery, various points along the proximal branch are decompressed, and the “hope” is (realize it is no more than your hope and your surgeon’s hope) that freeing the compressed sites within the proximal branch will, in essence, go downstream and positively impact the distal branches as well.

Understand that while the T3 MRN can offer a high-resolution picture and more clearly show an entrapment on the proximal branch, there is no reliable method to see and/or know what may or may not be going on in terms of compression in the three distal branches. Even with marked cadavers, the distal nerves could not be clearly identified with any certainty. On top of all this, anatomical differences in how the nerve weaves throughout the pelvic area can vary from person to person.

Two potential problems can arise. The 1st possibility, the release of the entrapment of the proximal branch, negatively impacts one or more of the distal portions of the nerve. If this happens, i.e., the newly decompressed nerve does not positively translate downstream to the distal nerves. There is no way for the surgeon to know this took place, and even if there was a way for the surgeon to know (there is not), nothing can be done to fix it. Therefore, as often happens, the patient remains in the same pain long after surgery and may also express that the pain seems to change locations.

Conversely, it's possible to go into surgery (assuming the T3 MRN shows the compression in the proximal branch), but at the same time, there are also entrapments in one or more of the distal branches; here again, there is no way for the surgeon to know about the entrapments in the distal branches. This also leaves the patient in the same or more pain after surgery, and neither the surgeon nor the patient understands why this is the case. The surgeon says there is nothing more they can do leaving the patient to figure out how to deal with the bad outcome.

In the end, it's easy to see the possibilities ranging from the "hoped-for good resolution" to the potentially devastating post-op results.

Plain and simple surgery is a crap shoot. It has as good a chance of working over time as it has of not working. When surgery doesn't work, new psychological issues complicate the actual physical pain because what was once the "new hope" the patient had going into surgery has dimmed to a flicker - so where does this leave the possibility of getting one's life back when hope vanishes?

The next sentences that follow are only my opinion and no more than that:

1. To push surgery as the answer is irresponsible, taking into account the risks and the vulnerability of those suffering.

2. To recognize the risks and go into surgery understanding these risks - is responsible.

3. These percentages of success rates (such as 85% or whatever number is dreamed up) are nonsense. Think of it logically, considering the crap shoot - the roll of the dice. The French have been doing this surgery since the early 1990s. Realize it's just a numbers game - with all the thousands of surgeries the French have done, there will certainly be success stories that will make the rounds. But, it's also true that even though the French are highly experienced in this surgery - not even the French doctors know the impact of surgery on the distal branches of the nerve or if the distal branches were entrapped in the 1st place going into surgery.

4. If everything related to the surgery falls into place just right, the patient will get better slowly over time and regain their life. Getting better from surgery is a "possible" outcome.

5. One person's success will have no bearing on your success if you're considering surgery.

6. The opposite is also true; one person’s failure will not mean your attempt will fail.

7. Surgery is a risk - understanding the risk is all I'm saying.

8. Unfortunately, desperation is in the driver's seat when it comes to this issue - people are extremely vulnerable.

I would stress though that there is an individual choice and there isn't a test that definitively establishes entrapment syndrome, so endorsing it for the right patient isn't very helpful. What I am saying is that for many not being able to live a full life, based on the risk that it could get worse, is simply unacceptable nonsense. For many sufferers, their symptoms are progressive and chronic pain has devestating consequences including suicide. Accepting something as the status quo, is one of the reason this condition does not get the attention and research that it deserves. I am not being critical Alex, I appreciate what you're trying to say but I cannot endorse unmanagable chronic pain, it is simply unacceptable in 2026.

The point you have neglected to mentioned is this the nonsense of excessive time spent attempting conservative measures in the event of entrapment - if the nerve is trapped you need surgery as soon as possible. So delaying surgery, can make it much worse. Using your language not acting, is also a "crap shot."

[aussie_surfer]

.

[eraser]

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.

Hi Alex,

I deeply share your concerns about the risks of surgery. Personally I am neither pro, nor against, surgery. I am very much open to surgery in the right set of circumstances. It really depends on the individual person and their history. I always remember Violet’s learned words when it comes to this, and ask myself the question, “Is my quality of life and pain that bad, that I am prepared to take the risk of becoming worse.” - Although I am limited, I can still exercise most days, and I am very worried about the risk of my pain worsening long term from surgery, as I have read can happen on this forum, from other people’s direct experiences.

I find it incredibly frightening that there is so little understanding, and limited help available, for people who develop pelvic pain from activities that are common. I feel like I’m living in a nightmare.

I am engaging in pelvic PT, for me, it actually feels relieving when the PT performs the internal release work, and I feel better immediately after it. But the relief is only short lived.

I read the following post on another forum, and I believe it is relevant to this discussion. I post it below for reference, as I feel it makes some good points:

I truly wish you all the best, Alex. You are not alone. DM me anytime.



Before entering surgery, consider - the pudendal nerve as the main nerve of the perineum. It is a mixed motor and sensory nerve. This nerve is crucial.

Diagnostic injections and a T3 MRN can give a good picture (high resolution) of entrapment if one exists within the proximal branch. However, the same can not be said for the distal branches (inferior rectal nerve, perineal nerve, and the dorsal nerve of the penis or clitoris).

While in surgery, various points along the proximal branch are decompressed, and the “hope” is (realize it is no more than your hope and your surgeon’s hope) that freeing the compressed sites within the proximal branch will, in essence, go downstream and positively impact the distal branches as well.

Understand that while the T3 MRN can offer a high-resolution picture and more clearly show an entrapment on the proximal branch, there is no reliable method to see and/or know what may or may not be going on in terms of compression in the three distal branches. Even with marked cadavers, the distal nerves could not be clearly identified with any certainty. On top of all this, anatomical differences in how the nerve weaves throughout the pelvic area can vary from person to person.

Two potential problems can arise. The 1st possibility, the release of the entrapment of the proximal branch, negatively impacts one or more of the distal portions of the nerve. If this happens, i.e., the newly decompressed nerve does not positively translate downstream to the distal nerves. There is no way for the surgeon to know this took place, and even if there was a way for the surgeon to know (there is not), nothing can be done to fix it. Therefore, as often happens, the patient remains in the same pain long after surgery and may also express that the pain seems to change locations.

Conversely, it's possible to go into surgery (assuming the T3 MRN shows the compression in the proximal branch), but at the same time, there are also entrapments in one or more of the distal branches; here again, there is no way for the surgeon to know about the entrapments in the distal branches. This also leaves the patient in the same or more pain after surgery, and neither the surgeon nor the patient understands why this is the case. The surgeon says there is nothing more they can do leaving the patient to figure out how to deal with the bad outcome.

In the end, it's easy to see the possibilities ranging from the "hoped-for good resolution" to the potentially devastating post-op results.

Plain and simple surgery is a crap shoot. It has as good a chance of working over time as it has of not working. When surgery doesn't work, new psychological issues complicate the actual physical pain because what was once the "new hope" the patient had going into surgery has dimmed to a flicker - so where does this leave the possibility of getting one's life back when hope vanishes?

The next sentences that follow are only my opinion and no more than that:

1. To push surgery as the answer is irresponsible, taking into account the risks and the vulnerability of those suffering.

2. To recognize the risks and go into surgery understanding these risks - is responsible.

3. These percentages of success rates (such as 85% or whatever number is dreamed up) are nonsense. Think of it logically, considering the crap shoot - the roll of the dice. The French have been doing this surgery since the early 1990s. Realize it's just a numbers game - with all the thousands of surgeries the French have done, there will certainly be success stories that will make the rounds. But, it's also true that even though the French are highly experienced in this surgery - not even the French doctors know the impact of surgery on the distal branches of the nerve or if the distal branches were entrapped in the 1st place going into surgery.

4. If everything related to the surgery falls into place just right, the patient will get better slowly over time and regain their life. Getting better from surgery is a "possible" outcome.

5. One person's success will have no bearing on your success if you're considering surgery.

6. The opposite is also true; one person’s failure will not mean your attempt will fail.

7. Surgery is a risk - understanding the risk is all I'm saying.

8. Unfortunately, desperation is in the driver's seat when it comes to this issue - people are extremely vulnerable.

I would stress though that there is an individual choice and there isn't a test that definitively establishes entrapment syndrome, so endorsing it for the right patient isn't very helpful. What I am saying is that for many not being able to live a full life, based on the risk that it could get worse, is simply unacceptable nonsense. For many sufferers, their symptoms are progressive and chronic pain has devestating consequences including suicide. Accepting something as the status quo, is one of the reason this condition does not get the attention and research that it deserves. I am not being critical Alex, I appreciate what you're trying to say but I cannot endorse unmanagable chronic pain, it is simply unacceptable in 2026.

The point you have neglected to mentioned is this the nonsense of excessive time spent attempting conservative measures in the event of entrapment - if the nerve is trapped you need surgery as soon as possible. So delaying surgery, can make it much worse. Using your language not acting, is also a "crap shot."

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

[aussie_surfer]

.

[eraser]

Thank you, I agree completely about selecting the right surgeon and the best surgical approach although the reality is somewhat different in practice.

The problem remains that conservative measures tend to be relatively ineffective and apart from surgery, patients only have suicide remaining. The question remains what else is there and the honest answer is nothing.

The issue with MR neurography for the pudendual nerve is that a negative finding does not necessarily exclude entrapment. Therefore, whilst theoretically you would dstermine the site and select the surgeon who is experienced in this approach, this may not necessarily be possible. The other major issue internationally is the lack of surgeons who perform fhis surgery. Ultimately this reflects misdiagnisis, lack of access to surgery and insufficient cases being performed.

I am all in favour of hope but hope is created by action and effectivs options. For neuralagja, the typical pain management programmes do not work so more research and resourcss are needed. I think if we are honest, pain mangement programmes do not work in general, they are mere fob offs and the modern alternative to saying "live with it." In 2026, people with chronic pajn deserve more than pain management programmes, in fact i would go so far as banning them in the uk and create some proper pathways.

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.

[aussie_surfer]

.

[eraser]

Hi aussie_surfer,

My apologies that I did not mention any form of recognised treatment possible. I strongly believe that everyone should explore every possible option and believe that it is a complete disgrace that medicine does not have all the answers. It is very sad that in 2026 that patients still receive delayed diagnoses and are denied or experience difficulties in accessing treatment.

Whilst I am sure well meaning, I did not appreciate the implied suggestion that I may need to seek psychological support. I recognise that whilst that are a number of treatments that even in combination, have limited effectiveness. This interpretation is backed up by current medical literature whilst recognising the need for medical research. Personally, I respect an individuals right to autonomy and recognise that sadly despite trying all of the medical interventions and psychological support that some individuals may no longer be with us due to intractable pain. After having spent a lot of time with families and patients at who are receiving palliative care, patients often value quality of life over longevity. I recognise that it may be difficult or uncomfortable for people to acknowledge this reality or that may hold the erroneous belief that suicide is always due to mental illness. The reason I am mentioning this many patients do not even get a diagnosis of pudendal neuralgia because their pain has been falsely attributed to mental illness. There is even an element of the latter in many pain management programmes as they have embraced some elements of pseudo science (psychology) creeping in respect of managing chronic pain.

I am really glad that MRN was helpful and informed how your surgery was approached. It is not that I disagree with MRN and as you said it can be of value but it rarely shows where the compression is due to the resolution of the MRI being less than the diameter of the nerve. There is a really useful interview with Dr Hibner, who explains why he does not use it for diagnosis purposes and includes some pictures. Here's the link (right at the beginning of the video): https://youtu.be/XfRCxubt3WA?si=578uMHNEEenSgpO9.

I appreciate some people may not share these views and the intention is not intended to cause offence but it is important to be honest and acknowledge the plight that a patient with pudendal neuralgia experiences. I equally recognise that this condition is variable and the exact causes are difficult to find, which adds to frustration. As a consequence, many doctors have different opinions and as a result we sadly still do not have good evidence. I have found a really useful consensus of expert opinion in a journal (relatively current) and I am sorry if the link has been previously posted, https://doi.org/10.1002%2Fejp.1861. It lists what treatments should be tried and in my view is quite balanced. I cannot attach though people should be able to read it though.

I completely agree that we have to be our detective and it is really sad that this the state of modern medicine. My thoughts are with you and everyone on this form that has either fought or are having to fight. I take some comfort and strength that against all odds, people have overcome the hell that this disease inflicts upon us all. I also hope that people find the strength to call doctors who do not acknowledge their pain and do not give you access to the treatments you need. Management of this condition in the UK is terrible and I will be asking to meet the health minister once I have recovered to demand change.

Hello,

I very strongly disagree with your philosophy that suicide is the only option remaining apart from conservative therapy or surgery. If you are feeling this way, it is please very important that you reach out and seek professional assistance and support.

Many people are able to control their pain through medication, physical therapies, neuromodulation — including DRG systems which can be particularly effective for chronic pelvic pain. I attach below a study relating to the particular effectiveness of DRG therapies in providing effective pain relief for chronic pelvic pain, including for some people who had failed surgeries:

https://wikianesthesia.s3.amazonaws.com ... c_Pain.pdf

I personally have received clear radiological diagnosis from undergoing specialised pudendal nerve MR neurography with an experienced neuroradiologist.

I have consulted with many pudendal nerve surgeons. The majority had no anatomical regard for the possibility of a branch related pathology, some even wrongly “selling” the idea that proximal trunk decompression was the answer to everything. In my own case, this would have been pointless and possibly caused iatrogenic surgical injury through not addressing the branch pathology which has been specifically and clearly identified on expert MRN.

It is very hard, but unfortunately we all have to be prepared to be our own detective, and figure out exactly where our problem lies anatomically within the nerve’s course, and then locate the right specialist doctor who can hopefully help.

I further attach below a terrible tale of a lady who underwent proximal decompression with a well known surgeon, when in fact expert MRN had identified the specific pathology within her perineal nerve branches. — It was not until she underwent specialist perineal branch decompression via the anterior approach with a peripheral nerve microsurgeon that she improved; so never discount the value of an expert MRN:

http://fighting-pne.blogspot.com/2012/0 ... y.html?m=1

Please take strength and hope from this tale, and please remember that our own detective work is very much needed when dealing with this pathology, to find the right doctors and treatments, as each case and history is very unique. Do not take any doctor’s word for granted. The above lady kept fighting and won out in the end against so much adversity, as many have. May God help us all. You are in my prayers.