Vulva nerve damage/irritation

[justme]

Hi - i am new here

I have some nerve damage/irritation to one side of my vulva - this happened 2 years ago.

I am currently using Vagifem HRT to plump up the area - as i am 57 and postmenopausal - and taking Amitriptyline for the pain- this is on the advice of a gynecologist.

I have from day one noticed a feeling of an object in my vagina but this has become worse and on telling my husband he thinks that the Pudendal nerve has been irritated/damaged as well.

I would like to ask if there is any possibility in anyones' experience that this will get better given time - as nerves take a while to heal ? or is it better to seek help now.

I am thinking of going to see Dr Greenslade in Bristol.

Thank you for any replies.

justme x

[helenlegs 11]

Hi justme,
The feeling of a foreign object in the vagina or rectum can be a classic sign of PN so top marks to your husband
Seeking help from Dr Greenslade would be good plan as he can take some time to see (as can all pelvic/PN consulants as there are so few who can help us in the UK, well everywhere tbh) I went privately, initially for a consultation as I was told that it would be a few months wait to see him on the NHS so initiating an appointment would do no harm He will always try conservative treatments where appropriate.
You could always cancel an appointment if things did improve sufficiently, as nerves can heal, but then again how long do you wait???
Dr G has treated so many people with PN and other pelvic pain problems and has studied with Prof Robert in Nantes France the pioneer of PN treatment.
He may suggest a different or additional medication that may suit you a little better like gabapentin or pregabalin which are particularly appropriate for nerve pain. An antidepressant Cymbalta has also helped me quite a bit too. This. . .. http://publications.nice.org.uk/neuropa ... 6/guidance . . . wasn't exactly what I wanted to give you. . . . as it's lengthy but take a look it may help a bit. My computer went doolally after Christmas and I lost tons of good info UGH!
Btw when I ring my family I'm 'only me' . Anyway welcome to HOPE, I know that you will get a lot of good info from people here.
Take care,
Helen

[justme]

Hi Helen

Thank you for your informative reply - it has cheered me up to find it this morning.

I will read through your link - your comments on Dr Greenslade are very reassuring.

justme

[helenlegs 11]

He really is a nice guy justme. I haven't heard anyone have an issue with him.
I'd had a diagnosis of a complex variant of the piriformis syndrome from Dr Filler (in London) before my Bristol appointment and he said 'Oh the glamorous diagnosis', I nearly hit him with my gucci handbag but that is the only contentious thing I have heard.
The reason I chose to go to see him is that Jet2 can get me to Bristol quicker than I can get the train to London and I am SO glad that I let that influence me. Everyone who has been referred to him have had no or little problems with the referral, again, except me! That one is down to my GP and my PCT, still battling!
I had just written a severe letter to the PCT citing my GP's biased disinterest (maybe the two are mutually exclusive?? don't care, the sound off letter sounded good) I was literally off to post it when the practice manager rang apologizing that they hadn't been in touch (3 weeks) but my Dr's parent had been critically ill and had subsequently died. Hell! I would have felt dreadful if it had gone, even tho' she is an expletive!!
Let us/me know what you decide to do.
Helen

[carolynm]

Welcome to the forum. We all have different and lengthy stories, but are here to listen. Your symptoms sound classic of PN. Please feel free to ask any questions, and I'm glad there are some fellow U.K.ers here to guide you.

Cari

[justme]

Thank you for your kind welcome Carolynm.

Hi again Helen

Sorry to read that you are having trouble with your GP regarding referral.

I am going to go to my GP after Easter and see if she will refer me to a nerve specialist or preferably Dr Greenslade.

Noone as yet has replied that this nerve can heal on it's own which is a bit worrying as it indicates to me that it can't.

How do you and Carolynm find quality of life now ?

At the moment i am doing about 5% of what i used to do - which is not ideal.

I am concentrating on eating well and resting but at times getting depressed with it all - the amitriptyline helps but i fell like i am walking around with a small packet near and around my vagina,

Thank you for listening.

justme x

[Violet M]

Justme, whether it heals on its own depends, I suppose, partly on what your history is, how you came to have this pain, and how extensive the nerve damage is if you have neuropathy. There are some people who get better just with lifestyle changes but I was not one of those lucky people.

Like you I was pretty non-functional and laid around on the couch for about 8 months before finally heading off to surgery. Now my quality of life is excellent without any medication.

Best,

Violet

[justme]

Hi Violet

It is good to read that you are better - also that you still post on this forum - often when someone is better they no longer post.

As you say my own circumstances come into play here.

Thank you

justme x