Hi. Following recent surgery for prolapse I have been diagnosed with pudendal neuralgia and feel so alone as this is such a rare condition.

[Anna24]

I have very quickly changed from being a fit and healthy 52 year old woman to being a chronic pain person on loads of horrible drugs. I live in Bath. Is there anyone out there living near me (or anywhere else) with this awful condition? I have been feeling very desperate. Thanks

[electricjaws]

hi anna, I read your post , a very useful site to talk on about pudendal neuralgia is healthunlocked pelvic pain, when you next come on here if you look at the green part at the top it will say healthunlocked home communities, where it says communities click on it scroll down til you get to pelvic pain and join up to that and you will find a whole lot of people in similar ,or exactly with pudendal neuralgia ,i know this as well as having fibro I have right sided pudendal nerve entrapment, one thing that may help you as you have pudendal neuralgia (not pudendal nerve entrapment ) is finding a good pelvic floor physio (not a normal type physio but one who specialises wholly on pelvic area, and pelvic trigger points), but to find one of these physios in England on the n.h.s can be tricky, but do sign up to the other community on healthunlocked I have mentioned above as you will get answers and helpful advice from people who are on there with exactly the same condition so you at least won't feel so isolated, soft hugs EJ x

[Anna24 in reply to electricjaws]

Hi EJ. Thanks for your reply and advice. I will go on that site. Really I don't know if its entrapment or neuralgia .... But surely they are the same? The nerve must be trapped, compressed or something to cause the neuralgia?? Am on a steep learning curve at the mo! Should I try and get one of those very specialised neurography scans in America to show whats going on?? I have so many questions. Thanks

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Anna24]

Hi Anna,

This is the site that EJ is referring to. There are many people on here with pudendal neuralgia or pudendal nerve entrapment. Regarding MR neurography, the question that should be asked of any radiographer doing this is "How would such a scan change the management of the condition ?" I doubt whether you will get an answer to the question because it doesn't change anything. I have asked doctors working in the field about this and they say they would not go the the USA for such a scan. ( and they can afford to go if they thought it was worth it )

Ask your questions, there are always knowledgeable people who understand on here.

[Anna24 in reply to PPSN_JudyB]

Thanks for your reply. I don't understand that though about the neurography because if the entrapment can be seen on a scan then surely something can be done to release it. How else can you see where the problem lies? How can treatment be given without knowing exactly what the problem is? My surgeon feels a stitch trapped the nerve and scar tissue has formed over it

[Anna24 in reply to PPSN_JudyB]

Hi PPSN -JudyB Please can you explain to me why a neurography scan does not change the management of the condition. Surely by seeing where the problem lies on a scan treatment can follow accordingly .......otherwise it's just guess work. Thanks

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Anna24]

This is a difficult concept to explain. I have translated this from French so here goes:

The therapeutic approach is unchanged where a focal compression is seen.

The benefit of pain medications are not connected to the site of compression, nor is physiotherapy.

Nerve blocks at the known sites of compression only have a modest effect. One could decide to do nerve blocks only at the site of compression visible on MRI but this is not current practice. To do this would necessitate a review of nerve block techniques. This would require a study of new infiltration techniques with location of the position of the needle by MRI and then validating that this was beneficial. This is in the realms of research to carry out and to our knowledge no one has started to do this and it is far from current care.

Regarding surgery, it would be a mistake not to release the area of compression seen on MRI at the risk of missing/overlooking other areas of compression not visualized. The aim of surgery is above all to regain mobility of the nerve so that it is not constrained by exceeding pressure in a sitting position in contact with the ligaments which always requires complete visual exploration of the path of the nerve.

Currently of most interest is to question radiologists who do MRI scans. It is not the MRI that makes a diagnosis of pudendal neuralgia, given that the frequency of asymptomatic compressions is 30%. Even though it is potentially interesting to see the images, how will that influence the therapeutic management ?

I suggest this is put to radiologists and would be very interested in their response

[Anna24 in reply to PPSN_JudyB]

Thank you very much JudyB

I do find it difficult to understand !

I suppose they mean the MRI may only show up one problem area but not all so it's not 100% reliable

[lucyp]

Hi Anna,

I,m also from near Bath, and my pn started after a catastrophic mistake by a Bath gynaecologist.

When this happened no one in Bath seemed to know about pn, so I had to do all the investigation work myself.

Do not believe this is a rare condition, hundreds if not several thousand people men and women suffer in the uk. It is

poorly recognised or funded so doctors hide behind it is a rare condition.

I like most people have had a long hard often dark journey, but there is a growing awareness in the uk.

Dr Greenslade who works at Frenchay and Bristol is a front runnef for diagnosing and treating this condition, this would be quite close for you.He is also a very nice approachable man.

I will

Ost again if you want any more info.

Regards lucyp

[Anna24 in reply to lucyp]

Hi Lucyp

Thanks so much for your message

I was wondering when your surgery was and if you have recovered?

My surgery was in June this year with Mr Luker but I had a consultation just recently with Mr Porter. He said he had only had one case in his career to develop PN .... could that be you? He told me she got better after 18 months. It's just that I asked his secretary if I could be put in contact with this lady.....feeling it would be really good to talk to someone with the same condition.

Also you said you will ost me ...what does that mean.? Sorry not got the jargon yet on this site ( and brain fog due to gabapentin! )

There is so much I would like to ask you

Thanks

Anna24

[Woodland16 in reply to lucyp]

Hi Anna,

I am from the US but have great familiarity with the subject since I have had the condition for over eight years. It is not as rare as you have been told. As a result of my condition I started making cushions for myself. My Dr.Marvel in VA saw my cushion and said I should make them and sell them since no one else was coming close to making one that could be customized to each person. To date I have sold over 500 across the country and I am working with a company to provide them for international customers. I hope this helps! Please be aware there is no magic pill for the condition. I have spoken with literally hundreds of people and they use my cushion along with medication. I am not a doctor so I can't give you a certain prescription for healing accept that consistent use of anything that will allow the nerve to heal and medication seem to do the best. I hope you have continued success with your health issue.

[Anna24 in reply to Woodland16]

Hi Woodland 16

Well done with the cushion business! What are they like? Can they be seen on line? Have you got better over 8 years? Not liking the sound of women never getting over this dreadful condition! Did you go down nerve block route etc?

Anna

[pizon in reply to Woodland16]

Hi woodland 16 can I go online to find your cushions?

[Woodland16 in reply to pizon]

I no longer sell them.

[pizon in reply to Woodland16]

thank you for your reply can I ask do you still see dr.Marvel and if so or not did he help you?

[paulyne]

Hi Anna,

I'm sorry to hear you too have PNE. I have right side PNE and lucy p is right, it took me nearly 4 years to find out what I had because the surgeon than caused mine insisted all was well and acted as if I was imagining it, he was probably concerned about being sued. I was also a very active woman.

Thankfully my gp arranged for me to go to University College Hospital and Dr Curren diagnosed PNE. I've had 4 nerve blocks, although they haven't really made much difference at least they are trying to help me and I don't feel alone with this pain and also this site is wonderful, its good you found it. I've yet to have physio there which I'm hoping will help but there is a long waiting list.

I would recommend trying Vagifem pessaries with an applicator for inserting into the vagina and using Ovestin Estriol cream on the outside of the vagina really helps. Although I hate taking medication as it knocks me out, I do take as small a dose as I can, I take 150mg of Pregabalin and 10mg Amitriptyline, all these I get on prescription from my gp. I have also found that crouching down or lifting shopping causes a real flare up. I am wondering if swimming may help, don't know if anyone else has tried.

Wish I lived near you.

Sending hugs x

[Anna24 in reply to paulyne]

Hi Pauline

Lovely to get your message.

It worries me that this could be a lifelong condition????!!

Many people talk about having it for years . Is this something I should be prepared for?

I have got that vaginal treatment in my drawer as had to use it before the surgery.....worried it might hurt? Maybe I should ask my GP about it. My surgery was June this year . Did you ever want to get a neurography scan done in London?There seems to be conflicting advice on wether this is worth doing. My next step is to see a pain specialist next week. My journey is just beginning ! Any more advice welcome

Anna24

[paulyne in reply to Anna24]

My daughter in law is a radiographer, I'm going to ask her about it, I've never heard of it, I'll let you know what she says. I'll give you my email address too, if you feel like you need a bit of support at the end of an email, or to ask me anything. [e-mail]

[lucyp]

Hi Anna,

Yes my appauling experience was with Mr P. who I don,t want to talk about on an open forum. I will say though, how can he say he,s only seen one case when he did,nt diagnose me I went back and told him after going my own way and getting my own diagnosis from London. I have not made a full recovery and struggle every day despite numerous treatments, thousands of pounds and surgery abroad last year. I am now five years on.

I don,t mean to frighten you, but be prepared for some tough times.

I would be happy for you to private message me, and we could go from there.

I will just say the quicker you get diagnosed snd treated the better the outcome, so you are in the early days.

Reards Lucyp

[juliansmom]

I'm in the new York. I've been suffering for almost a year. Its excruciating and lonely. So far of the million creams and pills I've tried nortriptyline at 40mgs ,1 mg xanax, tramadol, ice packs,heating pads,lidocaine ointment, stress reduction and relaxation techniques...all these things together provide sdome relief. Enough to lead a somewhat normal life. Just started physio so I don't know if it is going to help yet. Your not alone. Good luck and be your own advocate and researcher.

[Out-of-the-blue]

Hi My pain also started at age 52 but came from nowhere one morning whilst driving to work This was over 8 yrs ago! This pain is so debilitating and has resulted in my ill health retirement I recently had a Tribunal but lost my ESA as I am considered fit to attend workshops !!! I told them whatever their decision I would have to go without the money because if I was fit enough to attend workshops I would never have been forced to leave my employment of 22 yrs in the first place ! Not enough people understand the gravity of this condition

I have had a nerve stimulator inserted in my right buttock ( my entrapment causes right handed rectal pain) but unfortunately it hasn't helped a great deal so I still use my sticky pad tens as well

I find that NO painkillers touch the spot and don't bother with them now as I hate the 'zombie' side effects for no relief

I too didn't realise how many people out there suffer from this

Apart from the wonderful bowel specialist I have seen I feel I have been left to my own devices

The one thing that keeps me going is my 2 beautiful Grandsons

I'm always willing to 'chat' with other sufferers - hang on in there I'm sure an answer is just around the corner