Pudendal Neuralgia Question

[-CountyLancs-]

I've had pelvic floor physio and a nerve block injection and I still have very severe chronic pudendal neuralgia pain. My review after the nerve block isn't for 6 weeks so has anybody got any info out there on avenues that I might be able to explore to get rid of this awful pain.

[Joolibee]

How long have you been having physio? It took about 6 months before I felt any benefit. I also changed physiotherapist a couple of times before I found the right one for me. I was probably having physio for 3-4 years before I felt I might be able to manage without. I didn’t have any pain relief from the nerve block injections, save for about 30 minutes, so I decided not to continue with them. I think I have benefited from very gentle exercise and meditation, but the meditation needs to become a regular habit. There are apps, such as ‘Curable’, which can help with pain management. I suppose what I’m saying is, we are all different and it can take a while to find what works for you. I know how difficult it is, but please keep going, and be gentle with yourself. I hope you find some relief soon.

[-CountyLancs- in reply to Joolibee]

Thanks for your replyI've been having pelvic floor physio for a year and just been discharged cis I'm no better.

It's good to hear that your symptoms have improved and I will definitely give meditation a good go now.

[Granny-sitless in reply to Joolibee]

Hi Joolibee. I've just joined the group. I have a really good physio, who helps a lot, but sitting is a real challenge. I've reached the stage where medical interventions have not helped. I'm waiting for a course to "manage" the pain, & been given a rather overwhelming list of resources for self-help in the meantime. Curable looks like a possibility but I get the impression from the blurb that it's rather intrusive. Do you have experience of it, or can you recommend any other app?

[Joolibee in reply to Granny-sitless]

I have been using Curable for a couple of months. I don’t find it intrusive, and sometimes I go several days without using it at all. Having exhausted all avenues with the NHS, and spent an eye watering amount of money on private treatment, I became interested in the mind/body connection. I have 16+ years of PN and 20 + years of neck pain / headaches, but my pain (especially the PN) is so much better than it was. I do think that physio and acupuncture has helped me, but I believe I need to combine this with meditation, breathing techniques and mindful activities such as yoga or qigong, in order to make the most of any ‘treatment’. I am still on gabapentin, but have managed to reduce the dosage and might reduce it further. I haven’t had physio for the PN for a couple of years now, as I discovered I can manage it without. We are all different and what works for one might not help another, but I would recommend learning about neuroplasticity and how the brain processes pain for anyone with chronic pain of any type. If nothing else, it’s a very interesting subject….at least, I think so. Btw - I love your username, Granny-sitless- I wish I’d thought of that.

[Granny-sitless in reply to Joolibee]

Thanks for replying. I thought 5 years of PN was a long time but I'm sorry to hear how long you have suffered.My previous mindfulness relaxation, before PN, was a body scan. Since with PN I spent most of my time trying to ignore the messages from my body, the body scan didn't work any more. I found some special pain relief medications on the 10 Percent Happier app but the relief didn't last after the meditation. However, it did reduce the fear & avoidance a bit. I found it a bit difficult to buy into the rest of mindfulness. I will try Curable, thanks for your info.

My name came from hilarious memories of my time doing physio-mandated 25 minutes only sitting. When the timer went off, 2 little voices entreated me to "Get up Grandma"! So sweet! Happily I can sit a bit longer than that now if I am comfortable. 😄

[Konagirl60]

PT made my pudendal neuralgia way worse.

Have you been offered any Amytriptyline or Nortriptyline? They really help.

I have found that Di-Stem (50% methocarbinol/50% Paracetemol helps me with pelvic floor spasms.

Nerve blocks aren’t supposed to last. They are a diagnostic tool. If three successful blocks take the pain away ( most common compression spot is between the sacrosphinous and sacrotuberous ligaments so shots should be done there ) and the doctor has used both anaesthetic and steroid then decompression surgery is suggested and the sooner the better.

[-CountyLancs- in reply to Konagirl60]

Thanks very much, that's great info

[Louise_86]

Have you tried Amitriptyline? This has really helped take away my nerve pain.

[-CountyLancs- in reply to Louise_86]

Thanks but I've tried it and I didn't get on well with it

[Louise_86 in reply to -CountyLancs-]

Oh sorry to hear that! I really hope you find something that helps

[Ouchandmoreouch in reply to Louise_86]

How much do you take? I just started a very low dose of 10 mg.

[Louise_86 in reply to Ouchandmoreouch]

I started on 10mg and have taken it up to 20mg and I’m debating moving up to 25 or 30

[Ouchandmoreouch in reply to Louise_86]

Thank you. Do you think it helps you? Have you had side effects?

[Louise_86 in reply to Ouchandmoreouch]

It has helped so far, I have been pain free but today I am feeling more discomfort so I might have to up the dose. Do you have similar symptoms to me?

[Ouchandmoreouch in reply to Louise_86]

Not sure of all your symtoms. Mine are aching pain with sitting and also in the back of my legs when bending or climbing. It's been 5 years...had a lot of different diagnosis....but mostly recently, PN. Nothing has helped including 200 units of botox injected into my pelvic floor.

[Louise_86 in reply to Ouchandmoreouch]

I did feel a bit spaced out for the first week especially in the morning but other than that the only side effect I have had is constipation

[Desperateforrelief]

I have tried a variety of things for my pudendal neuralgia. I did PT for 4 years, at first it got worse. Was sent back a few years later and it helped some. I had a interstim put in it helped for a few years and gave up??? I wonder if my body just got used to it and it stopped working. I've had great success with pudendal nerve radiofrequency ablation. At times I get 100% pain relief. It can last 2 years for many. For me so far it seems to last about 5 months or so. I can get them every 6 months. I wish you the best.

[-CountyLancs- in reply to Desperateforrelief]

Thanks very much for your reply. I'm definitely going to look into this and I'm going to speak to my pain consultant about it when I see her in a few weeks. Fingers crossed!