Health Organization for Pudendal Education

Posted: **Mon Jan 21, 2013 2:59 pm**

Pudendal Neuralgia and Employment and Support Allowance (ESA) in the UK
I was on Incapacity Benefit due to pudendal neuralgia, but after a recent interview at the DHSS, despite having a letter with a diagnosis of ‘pudendal neuralgia’ from a pudendal nerve specialist saying I was "very disabled with [my] pain" and providing other supporting documents, I was judged fit to work and denied benefits.
Is anyone in the UK with pudendal neuralgia successfully claiming the new ESA?
Did you have to go to appeal to obtain ESA? Or were you forced to work?
Thanks in advance for any advice/info

Posted: **Mon Jan 21, 2013 6:47 pm**

I was never on incapacity benefit jep. It took me a while to get the ESA award, which I did after a tribunal but because my husband works it is contributions based, I get nothing now. It stopped last April.
I have appealed as I am in the work related group (obviously) and hoped to be reassessed after a medical and put in the support group. I thought I was going to be OK as the reassessing doctor had actually heard of PN although had not seen it. I thought he would understand, but his report came back that I would be able to get back to work within a year, so no ESA.
With no improvement in almost 5 years and no chance of a referral for necessary decompression surgery, I did wonder how on earth that could happen. I have appealed again of course and actually have the hearing on the 8th Feb, so not that far away. So support group here I come

I seem to spend my days waiting for the next appointment either governmental or medical to do with pelvic nerve entrapment.
I did speak to a benefits advisor guy who told me that no one gets put in the support group unless they are dying or mentally incapable. The rest of us are obviously capable of working!
I have a diagnosis of multiple pelvic nerve entrapments at piriformis level which includes pudendal, sciatic, cluneal and post femoral cutaneous so I have the sitting problem (which will score points

) as well as standing and walking, so I will give it my best of course.
I had all sorts of trouble getting the actual ESA payment, even when the Tribunal awarded it, as they were trying to say that I hadn't paid enough NI contributions even tho' I had worked all of my life?? However it was eventually found that the tax office had my details wrong so I managed to get the payments backdated in the end. The new government rulings had come in by then so it expired almost as soon as it had started unfortunately. This meant that I didn't ever get to go for any work related activity groups stuff.
'They' tell me that as there is nothing much wrong with me (well fix me then if it is so easy!) it's MY choice to work or not, so I am a housewife!. They are not forcing me to work but financial circumstance will do soon if I don't get a result at the tribunal.
What do you propose to do jep, appeal?
Helen

Posted: **Tue Jan 22, 2013 10:54 pm**

Hi Helen,
Yes I will appeal. I believe that the independent appeal tribunal is, as its name suggests, more independent than the ATOS work capability assessment and capable of delivering a fairer result.
Good luck with the case on the 8th Feb. Are you using a disability lawyer to help present your case? Hopefully the court will uphold your appeal and your case will set some sort of precedent for pudendal neuralgia in the UK being a a sufficient condition for ESA. At least until they change the goalposts yet again that is.

Came across this post by 'fairshare' in the comments section of a 17/01/13 Guardian article reporting on a recent Commons debate where MPs from all sides apparently condemned ATOS practice. Lots of other shocking stories of ATOS and its work capability assessments there:

"At last! Parliament is beginning to wake up to the reality of the institutionalised bullying of sick and disabled people. Better late than never I suppose.
However Atos is just the hired help of the government and just delivering what they are contracted to do.They are not being paid £110 mill p.a.to maintain the status quo,the agenda is to get as many people off sickness benefits as possible and that is coming straight from the DWP.
The problems are as follows:- the descriptors relating to physical and mental health are constructed in such a way that it is very very hard for genuinely sick people to score the required 15 points to be declared to have 'limited capacity for work' i.e.not expected to find a job or take steps to prepare to find work.
- The DWP decision makers are tending to rubber stamp the Atos reports instead of taking into account reports from GPs and specialists who know the claimant and have treated them often over many years.I have no doubt they are also targeted and only allowed to let a certain percentage of cliams go through
- The Work Capability Assessment form is extremely complex and confusing for claimants,especially if they have learning disbilities.The dice are loaded against them right from the start. Claimants need expert advice and support to complete this form just at a time when advice services up and down the country have been severely cutback [was this deliberate I wonder?]
- Sometime this year Atos will be starting to assess those currently on DLA so many claimants will have to go through the whole process twice: once for ESA and once for DLA,thus increasing the pressure.The government agenda is to reduce the numbers of claimants by 20-25% as a result of the transfer over to PIPs. I expect more suicides to occur over this.
- The system of reviews of people on ESA is haphazard - some get reviewed every 3 mths, every 6 or 12 mths but no correlation seems to exist between this and the prognosis for their illness. What is the point of reviewing people with a chronic progressive illness such as COPD?
I think there needs to be a national enquiry over this whole process and the damage it is doing to laready damaged lives, which will seek findings not only from claimants and their families,but also from advice workers like me who deal with these cases on a daily basis.
Since when did sickness/disability become a crime rather than a misfortune?"
http://www.guardian.co.uk/society/2013/ ... CMP=twt_fd

Posted: **Wed Jan 23, 2013 2:59 pm**

So good I posted it twice

Posted: **Wed Jan 23, 2013 3:01 pm**

Love that article jep

Especially the last line.
I have been to a few Tribunals now as my injury was assessed as an Industrial injury too as I fell at work. I did find that the one Tribunal I eventually got to for the ESA was totally independent, they actually listened and were quite lovely tbh. I may have this impression because I did win

I can only say that they were fair and unbiased, unlike ATOS.
The whole set up is a deceit! There, I've said it

They ask questions like how far can you walk? 50 m 100 m 200 m but forget to add the all important bit 'without pain'.
We all know that pain can be subjective and isn't measurable (I really wish it could be) I believe they clarify this a little further by saying pain is not discomfort (say tingling or pins and needles) but neither does it have to be excruciating pain. The same for sitting etc of course. After 5 years of this it's only the excruciating pain that stops me if I am silly enough to get there (which I sometimes am if I am honest)
I would not assume that your Tribunal will be similar. It is up to YOU to provide all medical evidence (as you probably know) do not assume they will know anything or understand.Will you have representation? Stupidly I didn't (all times)

The Industrial Injury Tribunals have been a different story. I've been to 3; 2 were adjourned,(although also have had 4 cancelled too

) The last to be adjourned was in order to ask important questions of the Secretary of State. 'Does pudendal neuralgia and piriformis syndrome exist and can they be caused by trauma?' and 'who are experts in the UK?'. . .. if they do exist of course!!!
The last Tribunal wasn't as bad as the second adjourned one, where the dr on the Tribunal said that if he found that my medical reports stating I have pelvic nerve entrapments (from Dr Filler and Dr Greenslade) had been 'procured from the internet', these ('how do we know they are not') 'quacks' would be facing a lengthy jail sentence, meaning me of course too, as the procurer!!!! They hadn't heard of google?
I was on my own (as I said, stupid) and fell apart

I guess because the ESA Tribunal people had been so understanding I wasn't expecting such ridiculous resistance to a very real medical complaint. It was like a fascist medical police gone mad!
Anyway the answer came back from a Dr Leris (Leeds) for the Secretary of State that PN and PS do exist (Hooray it's official) and although she discovered that PN Can be caused by trauma piriformis syndrome can not. Dr L also identified Dr Greenslade as an expert

. I have a printed S of S letter from the Tribunal stating that PN does exist which may be helpful in your case?
So for my latest Industrial injuries Tribunal all I needed to do was show that Ps could also be caused by trauma (I fell on my bum) Easy!
But NO! None of that was mentioned and all of my carefully prepared info wasted as we started right from scratch, again. I faced a local Professor and a 'Mr', (as well as the judge) they had drafted in especially. The Prof just shook his head when I explained my multiple nerve entrapments at piriformis level, as diagnosed by Dr Greenslade (the medical expert identified by the S of S this specially requested info did me no good whatsoever)
This Tribunal did smile more ( at one time the Prof actually called me a 'good girl' for taking an interest in cognitive therapies for pain, how condescending . . . . apart from the fact that I'm 56!) but were just as biased and pelvic nerve entrapment 'deniers' through and through.
What can anyone do against such ignorance when titles alone herald them as 'expert'.
Sorry have deviated from topic . . . but it does make excellent pub conversation

, and unfortunately I don't go anymore.
I'm sure your representative will keep you right and more importantly 'them' right. If you need any of my stuff just ask, although all of the best papers on PN are on the home page here. The Guide to Chronic Pelvic Pain 2012 is Co authored by Dr Baranowski (London) and another pain consultant from Middlesbrough (Hughes?) the Tribunal tend to be very medically nationalistic

.
Helen

Posted: **Sat Jul 16, 2016 10:10 am**

Hi,
Just an update. I was on Employment and Support Allowance (ESA), diagnosed as 'very disabled' with pudendal neuralgia (in UK). However, after another work capability assessment and Medical Tribunal, they seem determined to take me off again.
Is anyone in the UK on ESA with a diagnosis of Pudendal Neuralgia? Or are people now being disallowed benefits for this condition?
Thanks in advance for any info.

Posted: **Sat Aug 30, 2025 10:58 am**

Hi,
Dealing with Neuralgia can be incredibly challenging, especially when it affects daily functioning and the ability to work. Many people in this situation may struggle with prolonged pain, fatigue, and the psychological impact of chronic discomfort, which can make maintaining regular employment difficult. In the UK, Employment and Support Allowance (ESA) provides financial support for those who are unable to work due to illness or disability. For conditions like Pudendal Neuralgia, it’s important to gather thorough medical evidence, including specialist reports, to strengthen your ESA claim. Additionally, considering work capability assessments and understanding your rights during the process can make a significant difference in receiving the support needed.

Posted: **Tue Apr 28, 2026 7:23 am**

jep wrote: ↑Mon Jan 21, 2013 2:59 pm Pudendal Neuralgia and Employment and Support Allowance (ESA) in the UK
I was on Incapacity Benefit due to pudendal neuralgia, but after a recent interview at the DHSS, despite having a letter with a diagnosis of ‘pudendal neuralgia’ from a pudendal nerve specialist saying I was "very disabled with [my] pain" and providing other supporting documents, I was judged fit to work and denied benefits.
Is anyone in the UK with pudendal neuralgia successfully claiming the new ESA?
Did you have to go to appeal to obtain ESA? Or were you forced to work?
Thanks in advance for any advice/info

ESA with PN is a fight, not gonna lie. People do win but usually after appeal with solid medical evidence and specialist letters spelling out functional limits. If you can, get a welfare advisor involved, doing it solo is rough.

Posted: **Thu Jul 02, 2026 8:38 pm**

I appreciate this wasn't what you were posting about but are you able to pay to get the surgery?

helenlegs 11 wrote: ↑Wed Jan 23, 2013 3:01 pm Love that article jep Especially the last line.
I have been to a few Tribunals now as my injury was assessed as an Industrial injury too as I fell at work. I did find that the one Tribunal I eventually got to for the ESA was totally independent, they actually listened and were quite lovely tbh. I may have this impression because I did win I can only say that they were fair and unbiased, unlike ATOS.
The whole set up is a deceit! There, I've said it They ask questions like how far can you walk? 50 m 100 m 200 m but forget to add the all important bit 'without pain'.
We all know that pain can be subjective and isn't measurable (I really wish it could be) I believe they clarify this a little further by saying pain is not discomfort (say tingling or pins and needles) but neither does it have to be excruciating pain. The same for sitting etc of course. After 5 years of this it's only the excruciating pain that stops me if I am silly enough to get there (which I sometimes am if I am honest)
I would not assume that your Tribunal will be similar. It is up to YOU to provide all medical evidence (as you probably know) do not assume they will know anything or understand.Will you have representation? Stupidly I didn't (all times)

The Industrial Injury Tribunals have been a different story. I've been to 3; 2 were adjourned,(although also have had 4 cancelled too ) The last to be adjourned was in order to ask important questions of the Secretary of State. 'Does pudendal neuralgia and piriformis syndrome exist and can they be caused by trauma?' and 'who are experts in the UK?'. . .. if they do exist of course!!!
The last Tribunal wasn't as bad as the second adjourned one, where the dr on the Tribunal said that if he found that my medical reports stating I have pelvic nerve entrapments (from Dr Filler and Dr Greenslade) had been 'procured from the internet', these ('how do we know they are not') 'quacks' would be facing a lengthy jail sentence, meaning me of course too, as the procurer!!!! They hadn't heard of google?
I was on my own (as I said, stupid) and fell apart I guess because the ESA Tribunal people had been so understanding I wasn't expecting such ridiculous resistance to a very real medical complaint. It was like a fascist medical police gone mad!
Anyway the answer came back from a Dr Leris (Leeds) for the Secretary of State that PN and PS do exist (Hooray it's official) and although she discovered that PN Can be caused by trauma piriformis syndrome can not. Dr L also identified Dr Greenslade as an expert . I have a printed S of S letter from the Tribunal stating that PN does exist which may be helpful in your case?
So for my latest Industrial injuries Tribunal all I needed to do was show that Ps could also be caused by trauma (I fell on my bum) Easy!
But NO! None of that was mentioned and all of my carefully prepared info wasted as we started right from scratch, again. I faced a local Professor and a 'Mr', (as well as the judge) they had drafted in especially. The Prof just shook his head when I explained my multiple nerve entrapments at piriformis level, as diagnosed by Dr Greenslade (the medical expert identified by the S of S this specially requested info did me no good whatsoever)
This Tribunal did smile more ( at one time the Prof actually called me a 'good girl' for taking an interest in cognitive therapies for pain, how condescending . . . . apart from the fact that I'm 56!) but were just as biased and pelvic nerve entrapment 'deniers' through and through.
What can anyone do against such ignorance when titles alone herald them as 'expert'.
Sorry have deviated from topic . . . but it does make excellent pub conversation , and unfortunately I don't go anymore.
I'm sure your representative will keep you right and more importantly 'them' right. If you need any of my stuff just ask, although all of the best papers on PN are on the home page here. The Guide to Chronic Pelvic Pain 2012 is Co authored by Dr Baranowski (London) and another pain consultant from Middlesbrough (Hughes?) the Tribunal tend to be very medically nationalistic .
Helen

Health Organization for Pudendal Education

Pudendal Neuralgia and Employment and Support Allowance -ESA

Pudendal Neuralgia and Employment and Support Allowance -ESA

Re: Pudendal Neuralgia and Employment and Support Allowance

Re: Pudendal Neuralgia and Employment and Support Allowance

Re: Pudendal Neuralgia and Employment and Support Allowance

Re: Pudendal Neuralgia and Employment and Support Allowance

Re: Pudendal Neuralgia and Employment and Support Allowance

Re: Pudendal Neuralgia and Employment and Support Allowance -ESA

Re: Pudendal Neuralgia and Employment and Support Allowance -ESA

Re: Pudendal Neuralgia and Employment and Support Allowance