Pain management pudendal neuralgia

[Chocolategrigio]

I had a fall from height 11 months ago. Struggling to get anywhere with medical professionals, there is no urgency & I have been made to feel neurotic at times. I’m finding the ones I have seen don’t really know about PN.

My osteopath suspected PN in October & GP referred me to MSK spinal specialist due to nature of my accident. I had MRI of sacrum/pelvis & coccyx which showed that I had a sacral fracture.

I recently had an electromyography which show that I do have problems with my pudendal nerve but I don’t know if it’s damaged/irritated or compressed. Neurologists who performed test said that they don’t know which sacral nerve is affected. They are suggesting meds first but I have been on pregabalin since November, current dose 200mg twice a day, at best all it does is slightly take edge off but doesn’t take symptoms away. He said if meds don’t work then nerve block & if still no joy that I would have to see a specialist which would be miles away as no one local deals with PN.

I am getting worried regarding timescale & my osteopath thinks that the nerve is compressed somewhere. In the meantime my symptoms are ramping up. I am going to have to pay to see someone as I’m getting so desperate & have been forced to go back to work. I have no idea if I need a neurologist or pain management. I have been thinking about going to see Dr Nigel Kellow (pain management), has anyone seen him for PN, if so how did you get on or can you recommend someone please. I really want to know exactly what is happening with nerve & to get the right treatment to help me feel as normal as I possibly can with PN.

[VFR1200]

I don’t know where you are based but if in UK contact Bristol Pain Clinic Dr Greenslade, or London Pain Clinic these we both experts in pudendal neuralgia

[Chocolategrigio in reply to VFR1200]

Thank you

[hoopwhirl2007 in reply to Chocolategrigio]

I saw Dr Gareth Greenslsde in 2017 for nerve block and he injected my sciatic nerve instead of my pudendal nerve. That visit cost me a train journey return plus an overnight stay all for nothing. I have had pne for 9 years now and seen every specialist you can think of. Yesterday I went for another nerve block, this time with NHS (had to wait 18 months for this appointment) but Dr Chaudri at Kidderminster hospital performed procedure and it was painless (different to the painful experience I had at Bristol). I didn't feel any pain at all. I'll wait now and see if it works. However I do take a cbd oil purchased online from PROVACAN, taking 2400mg strength and the pain relief is fantastic. Good luck. Xxx

[Chocolategrigio in reply to hoopwhirl2007]

Thank you so much for responding. It would be a very costly journey for me to see Dr.Greenslade as I am other side of country so would have had to been an overnight stay for me too. I know you will understand how desperate you get to want that relief.

I will try the CBD oil, thank you for the recommendation. I just want to feel as close to normal as possible & to be able to do everyday normal things.

I’m currently taking pregabalin, been on it since November, now take 200mg 2 x a day but all it has done is increase my appetite hugely & makes me feel groggy & spaced out, barely takes the edge off.

[hoopwhirl2007 in reply to Chocolategrigio]

Hi, forget Gareth greenslade. I felt he wanted to get rid of me as soon as he could. He injected my sciatic nerve and my partner had to drag me back to our apartment as my whole rightleg had frozen. He just wanted the money off me!! I think this Dr chaudhi who is the lead pain management guy at Kidderminster hospital also works at one of the Spire hospitals which is private. I am now 24 hours on from my injection and. So far feel great. I'll wait and see if it lasts. If it does last I'd be happy enough to pay him privately for a top up jab cos I cannot afford to wait another 18 months on NHS. In the meantime try the cbd oil 2400 mg strength. See how you get on with it. I take 2 drops midday and 2 drops at bedtime. I am on a subscription with PROVACAN and pay 46 pounds per mo th instead of 80 pounds per month. They are a legit company who have all natural products and far better than any other company I've dealt with. Their customer service is great too! Xx

[Chocolategrigio in reply to hoopwhirl2007]

Thank you. I will look into Dr.Chaudri as that distance wouldn’t be to bad for me. I shall definitely be giving CBT a try as sleep is also an issue for me.

Neurologist who performed my electromyography wants my pregabalin to be increased to max dosage, for me to lose weight which I will struggle as I can’t exercise due to pain & also to try pelvic & general relaxation, even though I told him that I have been paying to see a PFPT private since November. Then after all that has been done & if I’m not improving he wants to perform another test & if still the same to go for nerve block as a diagnostic test. Can’t understand why he doesn’t just refer me for that now so goodness knows how long I would actually be looking at before I might get this on NHS. I really can’t wait that long. I have no option than to see someone private.

I already feel let down by having a missed sacral fracture.

Thank you very much for all your help.

[hoopwhirl2007 in reply to Chocolategrigio]

I feel your pain, literally! I'm also seeing a gynecologist privately as waiting lists are so long now I just cannot wait for my turn to crop up on the NHS. Slowly my savings are being eaten up by paying for private treatment over the years. I am a retiree but still work part time and have paid my taxes and national insurance for 50 plus years now. Sadly my contributions are not benefiting me in later life. So unfair. By the way still no pain after yesterday's nerve block. Well I suppose a bit but nothing like before. At least I have my cbd to take when needed. All the very best. Xxx

[Chocolategrigio in reply to hoopwhirl2007]

Thank you. I know exactly what you mean about savings, I’m worrying about the amount I have already spent. I go to see an osteopath & PFPT privately & now on top of this I feel that I have no choice than to seek pain management privately to.

It’s so disgusting when you have worked & paid contributions for all these years & wait times to get anywhere are just way too long. Waiting so long as well doesn’t help our pain levels or with the symptoms that we have.

I am exactly like you contributed for over 35 years & still doing so.

Thank you so much for all of your advice. I hope that CBT works for me, we get so desperate that we are prepared to do & try anything.

[Chocolategrigio]

Thank you

[hoopwhirl2007]

Thank you so much for this information. I will check it out. Xx

[Kat791]

Hi, I'm so sorry you're going through this. I don't really have any advice as I am at the start of my journey to getting better and have had the same struggles with getting medical professionals to do anything and to take me seriously. I don't even have a diagnosis to be honest, and haven't seen anyone besides my GP. But I also fell on my arse. I fell down 6-7 stairs and bumped all the way down on my butt. I've also seen several other people on this group, who also had falls onto their coccyx/sacrum area and are having the same issues. So you are not alone. Sorry I couldn't be of more help, and I hope you get the help you need.

[Chocolategrigio in reply to Kat791]

We are both feeling each others pain, it really shouldn’t be so difficult a journey for any of us as it has been, especially in this day & age & with the advances in medicinal field, yet it sadly looks like pudendal neuralgia diagnosis & help really is in the dark ages. We have to do the research ourselves & also seek other alternatives which are at a monetary cost to ourselves. I hope 🤞that you find the help that you need to.