Pudendal neuralgia

[Hedgerow14]

HiI have recently been diagnosed with this and would like to hear any hopeful stories about this depressing and distressing condition

I have been taking amitriptyline for 3 weeks but the pain is back, the medication took the pain down a little to start with.

It has been a nightmare as no doctors seem to know of this condition and the one that did I have absolutely no confidence in.

Has anyone found a way of coping with this and living with it, I don't expect a total cure but can it get better over time

Appreciate any positive stories as I am feeling very low

Sorry for the short post, it is my first post and I am nervous many thanks

[Singinglouder]

Hi Hedgerow14 - sorry you haven’t had any replies yet. Finding reliable support for rare conditions can be tricky.

I can’t help with the pudendal neuralgia, but I do take amitriptyline for neuralgia elsewhere. The pain clinic put me on it (and if your pain has lasted more than three months, it’s worth asking for a referral), and I had to start on 10mg and add another 10 every couple of weeks until I got a decent amount of pain relief. I decided up front that I would need 20-30mg, but I’m actually now on 50mg, which is keeping things mostly under control. So, if the amitriptyline helped initially, I’d talk to whoever prescribed it about slowly increasing the dose.

Don’t know how much information you were given about the amitriptyline, but it’s generally recommended to take it at least 12 hours before you want to get up, otherwise the morning is a bit like wading through treacle. Once I got to the right dose, tho, I’ve found it very effective (I certainly notice if I forget a dose!).

Hope you are able to get some control soon - and that someone who knows about your specific condition comes along.

[Hedgerow14 in reply to Singinglouder]

Thank you very muchThat's very useful about the amitriptyline

I have just been given nortriptyline, doctor thought it should have less side effects but I understand it's the same drug.

Thanks again for your kind reply

[Pinkdorf]

I too found amitryptilene made me soooo sleepy. Duloxetine, & Fluoxetine, have been my help taken together with low dose 200 Gabapentin -all at night but you may find you can tolerate Duloxetine & Fluoxetine one dose in day. Also cocodamol 500 Paracetamol & 30mg codeine in day help to put a dent in pain.

[Singinglouder]

Hi - hope you’re doing ok. I thought of you today reading the paper. I don’t know how confident you are about your diagnosis, but there’s an interesting feature in today’s Guardian about vaginal dryness and the terrific pain it can cause - and how often it’s misdiagnosed. Thought at the very least it might give you some ideas about additional treatments. You should be able to find it online - the Guardian doesn’t have a paywall, it’s free to read.

Also, the NHS website has a surprisingly comprehensive section on pudendal neuralgia, including treatments, plus links to support groups - worth checking out

Hope that helps!

[baggie58]

Again, sorry, can’t help with the pudendal neuralgia, but just wanted to say that my pain combination is nortripryline (plus gabapentin and co-codamol as necessary). Like you I tried amitryptiline, but it made me too drowsy. Nortryptiline has the opposite effect, which was good for me, I already had narcolepsy type problems so didn’t want a drug that was going to make everything worse. They are not quite the same drug, however amitryptiline is converted by the body into nortryptiline.