pudendal neuralgia diagnosis

[_hope]

Hello - this week I have finally be diagnosed.... relief (at the journey to find the expertise I needed and a diagonosis) is mixed with an intense awareness that this is it..... short of the miraculous there seems to be little hope for a significant degree of recovery.. I was very optimistic about specialist pysio (internal) but on the fifth session the pain intensified dramatically and it was impossible to continue. The gyneachologist who diagnosed PN says this can happen sometimes. This was my plan for recovery! The plan now is to learn to use TENS and a pudendal nerve block - I'd appreciate any feedback regarding people's experience with either.

[Icybonz12]

Sorry you are suffering. How many times a week are you doing Physio? I go once a week only because my therapist said anymore then that could cause setbacks and more pain. It took me two months to go from a 10 pain to a 7. Did you have surgery to develop your PN?

[_hope in reply to Icybonz12]

Hello x

I was having physio weekly - on the fifth session the pain when she tried to access the pelvic floor was excruciating - the consultant who diagnosed pn prodded the same spot when she examined me and I leapt so hard that the end of the bed detached and the lamp fell over! Never a dull moment lol! She said that the nerve was probably further aggravated by the physio which apparently happens sometimes and that even if it was possible to continue it would be unwise.

The PN pain started 2 years ago when my period just wouldn't stop. since then I have had 2 surgeries (oopherectomy due to chocolate cyst and hysterectomy) and was also diagnosed with endometriosis which I probably had at least 30 years!) Generally the pain is not too bad until mid/late afternoon and I take tramadol so I can concentrate to work; it takes the edge off so i can function.

I'm glad you have had some relief - conservative methods are so much better than drugs or surgery. I hope it continues for you. What started things for you?

[Icybonz12 in reply to _hope]

I had a vaginal hysterectomy the end of Feb. My pelvic floor muscles went into spasm and never released. My issue is tight pelvic floor causing nerve pain due to compression. Slowly improving but nowhere near feeling good. Botox inj are next in the near future. My doc gave me a name of somebody in DC who does these. He is nationally known. I would have to pay out of pocket though. I have no idea of the cost. The pain that you felt sounds like a trigger point. Could you get a trigger point injection? My issue is all myofascial pain and At this point no painful trigger points that would have me react like you did.

[_hope in reply to Icybonz12]

I hope you continue to improve and get the right physio - We are so blessed here to have the nhs... are you able to work? It must be difficult having to pay for treatment. I really hope it goes well.

[Hidden in reply to _hope]

In my experience firstline NHS (GP based) isn't interested in helping people with 'rare' (I say that because not many gp's or consultants have heard of it, not because of number of sufferers). They are just happy to leave you in pain and restrict painkillers. I have had to pay privately for a diagnosis and therapies, only then did my GP take me seriously, but no suitable therapies available on NHS. I did eventually get surgery on the NHS after fighting for funding, which I am very grateful for. But like you say, paying is hard if you find it difficult to work. I earn a fraction of what I did because of this pain. I would love to know who you are seeing and what treatment you got on the NHS, maybe you have been luckier than me. Perhaps it is a postcode lottery? After my excellent treatment in Bristol I would consider moving there, as it would be cheaper. Good luck and take care.

[_hope in reply to Hidden]

I found out about the pelvic pain team at Leicester Royal Infirmary through my own research which lead to a one off private consultation with a physiotherapist who had just retired from the team. I asked the pain consultant I was already seeing in Kettering to refer me and he was very helpful (The physiotherapist also wrote to him). The team consists of a gynaecologist, a pain consultant, a psychologist and a women's health physiotherapist. They work together so you see all the consultants in one consultation and they specialise in women's pelvic pain. They have a team of nurses also, I will be trained by them to use the tens machine (again designed for treating pelvic pain) and will be lent a machine.

How long ago did you have your surgery and how are you now?

[Hidden in reply to _hope]

I had my vaginal prolapse repair that gave me the PN in feb 2013. I had a hernia repair along my hysterectomy scar 10 days ago. Was meant to be a rectopexy op but changed mid surgery to sort out this unexpected problem. I saw the pain team at derby hospital (more than a year ago now) and they discharged me after a nerve block flared up my symptoms. Told me I shouldn't be on all the painkillers I was on, but no recommendations of what to do for the pain! I will investigate Leicester, thank you very much. They sound much more useful. Need a plan for after rectopexy op as expect pain to be less, but not gone. Take care. Xxx

[MAXWELL61 in reply to Hidden]

Hi I have been suffering with Pudendal Nerve issues for several years. I noticed you have received treatment in Bristol. Is this through a private treatment or NHS. I had a pudendal nerve block via NHS, which temporarily took the pain and discomfort down. This was under a pain management team. My consultant left and have now been told, I will have to wait to be seen by a " new consultant " with a wait for over a year. To be honest, I don't. Know who I am any more I don't recognise myself at all.

[kate81]

I've had 3 nerve blocks they didn't help add my symptoms worse so be careful with them and who does them. Tens also aggregated symptoms so be careful it may help but at first use for small periods.

[_hope in reply to kate81]

That must have been so disappointing. Has anything helped?

[edythe]

Don't give up! Maybe take a break from the physio and then space out the appointments so that flare-ups are not so intense. How tense are the pelvic floor muscles and fascia? Is there any known cause for your pelvic pain e.g. surgery?

[_hope in reply to edythe]

probable cause is endo. I still work on relaxing pelvic floor -Its all I can do for now but the physiotherapist worked on some trigger points.

[2cv1964]

Hi there, I am so pleased that you have been given a diagnoses. I too have been through the Pudendal nerve entrapment/neuralgia . I was advised NOT to use tens machines. Be very careful regarding physio therapy...only if they are qualified to deal with the pains from having Pudendal Nerve Entrapment. Only if they have been trained. I am terribly sorry you have been in so much pain. I suffered for 10 years and was given anti imflamatory Ketrophen and Rivotril Clonzapan The latter of which made my life possible. I took the decision to finally be operated on for Decompression Surgery in April of this year in Nantes , France as 10 yrs was too long to be continuing in pain. I shall pray your English gyneacologist will look after you and give you the correct pain relief to suit you.

With thoughts and masses of luck.

2cv1964

[_hope in reply to 2cv1964]

Thank you - i am with a very specialised team now so hopefully.... how is your recovery going?

[RobinsandRams in reply to _hope]

Please can you tell me where this team is, I desperately need help.

[2cv1964 in reply to RobinsandRams]

Hi there. I am sorry I did not see your note. The team is based in Nantes France at les Nouvelles Cliniques Nantaise. Prof. ROBERT neurosurgeon and Dr. RIANT pain consultant. I have details if you need them. Apologies for delay.

[2cv1964 in reply to _hope]

Hi there.

Progress is quite slow. The first three months post op are very slow. Not much energy. felt very low at times. naturally uncomfortable due to scar tissue healing.

Yesterday was the fourth month post op.

Yesterday I actually drove the car for the first time for about 5 K's. and then hopped out and got my Mum to drive me back home. still feels as though I have a hard plate on the sit bone area - obviously where the scar (incision) was made.

Today I am aching and therefore will not drive again today. I will try again tomorrow. I walk quite slowly and find going up hill a strain as I am naturally totally unfit!

My husband has been away for a week so I have been doing very much more than I have normally been doing! So I have had pains at the top of my thighs where they meet my bottom and a bruising like feeling between my legs... so it means I have overdone it. I have had to remind myself that this is a long slow healing process.

I can Iron, cook, walk, load the washing machine, hang out the washing, I can now sit for a while (10 mins) at a time at the computer.... any longer and I get a bruising sensation between my legs and in pubic area... I half sit and half stand during meal times. I find hoovering does not help, as afterwards I am in pain.

Thankfully most people I know realise I have to do that. When my husband or friends drive me out somewhere I have to put the back of the seat 'back' to take the pressure off the sit bone.like a deck chair/sun lounger, much more comfortable like that. I have a sun-lounger in the sitting room to watch television - again taking the pressure off the bottom area.

I still do not know if this operation has worked or not. I am every hopeful and pray that all will be well.

I am to see my Surgeon on 27th October for my 6th month Post Operative appointment.

I

[Barbara9 in reply to 2cv1964]

2cv64 how are you now?you give me hope as i have had 4 years of PN pain and been accepted for Nantes surgery

[Pepper1977]

Join the closed Facebook group for pudendal hope you'll get lots of info there

[_hope in reply to Pepper1977]

Thank you, I will x

[_hope]

Thank you so much for your replies- it seems that all the treatments have very varied outcomes! The physiotherapist works for the pelvic pain team and has treated others successfully. .. I also had naproxen (anti inflammatory) for a long time but it didn't help.... Hopefully we will all find the treatment that works for each of us ♡ thank you for your replies xxx love, hope and prayers... ♡♡♡♡

[66crusader]

Hope.......we must live very close to each other as my local hospital is also Kettering......I have had PN nearly two years now.

[peterspots]

Hello. Has anyone been to the London pain clinic. I am yet to be diagnosed. Pain in left side of public bone. Feel like I've been kicked after a bowel movement or doing to the wee. A sore spot that doesn't go away

[whiterabbit71]

Hi - just wondering if you have any updates on your progress with reducing pain due to pudendal neuralgia. I’m desperately looking for answers. Daily pain and no specialist nearby as I live in a remote area. Any advice or updates would be greatly appreciated.

[Chocolategem]

Thank you for sharing! I have been having pelvic pain for months now. My gynocologist did a ultrasound and only fibroids on the right side but my pelvic on the left side and kind of going up a bit is hurting and she won't do any other testing for me to know what this pain is about. What tests did you have done to determine what is was?