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[Wanderer]

Morning ladies! 3 years of bleating on about post menopause misery, which has sort of been narrowed down to vaginal atrophy, vulvodynia, PFS and IBS/GERD, and of course, all the head "stuff", for which I am on Pregabalin, Evorel Conti 50 and Vagifem 10. I can't say any of them have had much of an affect on any of my symptoms, although Venlafaxin has helped anxiety and nervous tension to a degree, but I now have a strange jumping twitch in my left hand and lower legs, along with a weird weak sensation in my left shoulder!

I was told by one of the many thousands of clinicians that I have seen, that Vulvodynia and Pelvic Floor Dysfunction can affect the intricate network of nerves that run through pelvis and up to the Solar Plexus, and it was suggested I see a Neuro Consultant, but I am worn out with rubbish, and incomplete diagnosis, and just always feel Neurology is a bit of a wishy washy area of medicine. Have any of you had any experiences of Neurosurgeons?

WANDERER xxxx (Ever hopeful of living through the next 30 years without going bonkers!!)

[Limpy]

Not seen a Neurosurgeon - Have seen Neurologists on and off for the past 40 years, more so for the last 20.

"Neurology is a bit of a wishy washy area of medicine" - seems a bit strong.

In many cases the symptoms they are looking at are transient and difficult to diagnose. Where this is the case they have to take the clinical history then review things in the future. One off examinations are not enough to give a diagnosis.

[Maryjane]

Could be a Side effect of the pregagablin, what you where being told about the nerves in lay mans term is called " centralisation" look it up easier than me waffling on.

I am afraid there is no answer probably to the symptons, it's just our bodies doing there own thing.

The pain clinic I went to is the NHNN national hospital for neurology and neurosurgery, it is very common with pelvic pain for it to go elsewhere. I am on amitriptyline and it seems to be helping now, took about three months.

[Wanderer]

Limpy, I didn't say that Neurology WAS a wishy-washy area of medicine, I just felt it was. I work within the health industry anyway, and know that patients who have nerve mapping are nearly always referred onto other consultants. There is never a true reason for some nerve pain, as it is nearly always transferred to other areas of the body, I really just wanted to know if it was worth pursuing it for our particular symptoms.

WANDERER XX

[Maryjane]

I have decided to stop searching for the overall cause as I think it just makes more anxiety which winds the nerves and pelvic floor up more. I don't know if you suffer from restless leg syndrome, as most ladies who do also have pelvic pain.

My husband also gets the twitches but doesn't even notice it, I think we are so tuned in to EVERYTHING because of what we have wrong with us.

The Americans have every test known to man and still don't get an answer.

[Hattie]

What i found 'interesting' if you can call it that    is where sore trigger points are in areas of my body far away from the nerve pain and tightness in the vulva.

An acupuncturist found various trigger points down my inner thigh to my ankle - up through a bit of my abdomen - a sore point under my armpit and another sore point on the collar bone where it meets together by your throat.

Sure from all my reading that i read somewhere that in some cultures the pelvis is considered the centre of the body - maybe this is why all the weird sensations go outwards from it.

I've made enquiries about seeing a neurosurgeon but am not sure it is the answer at all.

Do you think the pregabalin is making things worse Wanderer ?

Hattie X

[CLKD]

The hardest part is to diagnosis which is 'real' pain and which is 'referred' 

A Neurologist will have specific test routes not available to other clinicians.  Diagnosis can be difficult sometimes what ever the condition.  Many conditions can mimic others …… and patients are not always the best 'witness' to how they actually feel 

There is a well known phrase of 'closing door syndrome' when a patient presents with 1 small problem but on the way out will add, "Oh by the way, would you know what …… " …….. instead of being up-front!

[Hattie]

The hardest part is to diagnosis which is 'real' pain and which is 'referred' 

A Neurologist will have specific test routes not available to other clinicians. 

I've had internal pelvic physio whereby i have had to distinguish between my 'own pain' and 'referred pain' brought on by the physiotherapist pressing certain points.

Not seen a Neurologist though - Wanderer maybe it is worth just seeing a Neuro Consultant if there is a different angle on it all with different tests. ?

Hattie X

[CLKD]

Knowledge is power.  However, it can be so wearying having to return to the next 'expert', then the next and waiting for results and suggestions: at a time of Life when it would be nice to get on with stuff 

[Hattie]

Seeing different experts i have found has been the only way to try to piece together what is happening in my body at the moment - there has been no one stop answer. It seems to have been the only way for others too.

Having some understanding stops you fearing the worst and gives you some peace. As you have said Sparkle once you understood the muscle twitching you don't worry about it so much.

I am gradually getting back to 'getting on with stuff' - it is what i always just did naturally before - just by doing that and not 'trying' to get better the nerves may gradually get better anyway - who knows ?

Hattie X