Health Organization for Pudendal Education

Hi

I’m new to the forum, although unfortunately not new to pudendal nerve pain as I am now experiencing my third exacerbation.

This time around my issues stated just before Christmas last year and I think they started because I endured a long period of stress including moving house to new village after 30years in my previous town and work related stress. All of which resulted in me developing anxiety induced tinnitus in October last year. Then an unpleasant loop ensued, tinnitus, anxiety, tinnitus anxiety, etc.

Originally the nerve pain came and went, sometimes I hardly knew it was there. Fast forward to today and my symptoms are the worst they have ever been.

My main are of concern is a tingling feeling in the right side of my vagina that then travels up to my bladder. This then makes me feel like I need to pass water 24/7. The intensity is getting worse as each day goes by, it feels like it will never end. I now can’t sit down without it irritating my vagina and bladder, in fact I don’t get relief standing up or lying down, so basically I have these symptoms all day and night I have just swapped from low dose of amitriptyline to low dose of Nortriptyline but no improvement so far.

Has anyone else got these specific symptoms? It’s the feeling of constantly wanting to pass water that is so debilitating and makes me despair. If so, what has helped you?

Final question is, I often have a very small of alcohol (1 or 2 units of rum or vodka) and I’m wondering if this is why I’ve been flaring over the past 3-4 weeks? Any advice gratefully received.

Thank you for reading my message.

Hi, welcome to the forum.

Lilliecat wrote: ↑Tue Apr 01, 2025 11:18 pm
My main are of concern is a tingling feeling in the right side of my vagina that then travels up to my bladder. This then makes me feel like I need to pass water 24/7. The intensity is getting worse as each day goes by, it feels like it will never end. I now can’t sit down without it irritating my vagina and bladder, in fact I don’t get relief standing up or lying down, so basically I have these symptoms all day and night I have just swapped from low dose of amitriptyline to low dose of Nortriptyline but no improvement so far.

Has anyone else got these specific symptoms? It’s the feeling of constantly wanting to pass water that is so debilitating and makes me despair. If so, what has helped you?

Yes, I've had a similar symptom before. I was getting up to the bathroom many times a night. Taking an SSRI antidepressant (Lexapro) helped dampen the symptoms some. I tried a tricyclic antidepressant (imiprimine) related to amitriptyline but it had too many side effects for me. It turned out that I had pudendal nerve entrapment and went for PNE decompression surgery which helped the symptoms a great deal. The pudendal nerve innervates the bladder sphincter so one of the symptoms of pudendal neuralgia or pudendal nerve entrapment can be urinary symptoms.

I can't answer your question about alcohol. Hopefully someone else has experience with that and can answer you.

Violet

Hi Violet

Thank you for your reply.

I may have to try another medication but I’ve not been on Nortriptyline for very long, less than a week.

This is my third exacerbation of this pain which has happened due to anxiety. Thankfully it has gone away previously but it took a long time. I’ve just started working with a physiotherapist who specialises in pain management. He uses the latest research into pain and how anxiety affects our nervous system. By reducing my anxiety it will help my brain to realise that it doesn’t need to fear anything and the pain should reduce over time. I do relaxation exercises using diagphramatic throughout the day. It is very early days, I literally had my first consultation yesterday. It may take some time, especially as I’m living with tinnitus as well and this only appeared a few months ago, so it’s quite an uphill climb for me.

I’m really pleased to hear that the surgery has given you some relief. I don’t think it will be an option for me but I’m waiting to see a pain consultant to see what they have to say. Even though I’m having to go privately (NHS waiting times are 12-18 months), I’m still having to wait quite a few months anyway.