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[Snowcat]

Hi.  So, been diagnosed by gynae as having sore, thin skin due to low estrogen (proven) and a patch of lichen sclerosus.  (which I’ve had for 10 years but symptom free - biopsy was NAD)

I started on Estraderm 50 patches on 20 May, plus vagifem & estrogen cream.  No real improvement in pain since - told gynae who said sometimes the pain is more ‘neuropathic’ than pathology. 

She then suggested Gabapentin which I’m now trying. I’m now wondering if she’s thinking it could be Vulvodynia … even though the skin looked thin & raw.  Or is it just that, due to the damaged skin, the nerve endings are just firing off? I’m so confused!  I’ve tried YES products, Olive & Bee, Vukval balm, coconut oil & hydromol (gynae suggestion) none seem to soothe it - just make it all sting more, so now I’m wondering if I should stop everything except the estrogen cream? (Urologist suggestion) when I wake up in the morning there is no pain, but as I lie there (very still to enjoy the pain free moment, it starts - how does it even know I’m awake?!!
Any advice gratefully received as I’m in so much pain today I can’t think straight!  Gynae won’t see me for another 2 months and GP appointments are like hen’s teeth to get hold of - besides which they don’t seem to want to get involved when they know your under the care of a consultant…

[Kathleen]

Hello Snowcat


I am sorry that I can't help with your problem but one of your comments resonated with me. I have been off HRT gel for nearly three months and I was expecting the return of some symptoms.
The last time I had a break my VA dryness and itchiness really ramped up and I was suddenly in the market for vaginal moisturisers! This time my VA symptoms come and go but bizarrely always at night. Sometimes I have been woken up and kept awake for hours until the feelings stop and I feel okay again.

If your Gynae thinks your symptoms are more neuropathic that pathological, would an increase in systemic HRT be of benefit?

I am sorry that I can't be of more help and hopefully some other ladies will be along soon to advise you.

Wishing you well and take care.

K.

[Minusminnie]

Hi.  So, been diagnosed by gynae as having sore, thin skin due to low estrogen (proven) and a patch of lichen sclerosus.  (which I’ve had for 10 years but symptom free - biopsy was NAD)

I started on Estraderm 50 patches on 20 May, plus vagifem & estrogen cream.  No real improvement in pain since - told gynae who said sometimes the pain is more ‘neuropathic’ than pathology. 

She then suggested Gabapentin which I’m now trying. I’m now wondering if she’s thinking it could be Vulvodynia … even though the skin looked thin & raw.  Or is it just that, due to the damaged skin, the nerve endings are just firing off? I’m so confused!  I’ve tried YES products, Olive & Bee, Vukval balm, coconut oil & hydromol (gynae suggestion) none seem to soothe it - just make it all sting more, so now I’m wondering if I should stop everything except the estrogen cream? (Urologist suggestion) when I wake up in the morning there is no pain, but as I lie there (very still to enjoy the pain free moment, it starts - how does it even know I’m awake?!!
Any advice gratefully received as I’m in so much pain today I can’t think straight!  Gynae won’t see me for another 2 months and GP appointments are like hen’s teeth to get hold of - besides which they don’t seem to want to get involved when they know your under the care of a consultant…

I was given gabapentin at one time for nerve pain. If you titrate up and there is no pain relief at any given level recommended for nerve pain it is not worth taking. I titrated up under consultant guidance for vulva pain with no effect on the pain so titrated back down and off it.

Amitriptyline or pregablin can also be tried.

Starting HRT on 20th May hasn’t given the 3 months yet to take effect.
Vagifem also needs time. Using the estrogen cream as suggested by urologist would give you a base line without muddling it with use of other products for now.

[Snowcat]

Thank you Kathleen - did you mean that an increase in the HRT patch dose might help or did you mean you think it wouldn’t? That’s the next move as far as gynae are concerned - they’re putting it up to 75mg.

Thank you too Minusminnie - your posts are always helpful.  I’ve tried pregabalin in the past (felt great, but put on loads of weight!) and Amitriptyline which the GP wanted me to try alongside the gabapebtin but it made me feel awful and my BP dropped very low.  I’ve had it in the past for other things and it didn’t work for them.  I think I’ll ask to increase the gabapebtin (I’m currently on 300mg x 3 daily - not sure what the next dose up is but I know you can go a lot higher)

As you found it didn’t help for you (sorry to hear that) did you find anything that did? I know it all takes time (I’ve been on vagifem for years so the vaginal area is fine - it’s just the vulva) I know it’s early days but sometimes it just seems like I’m back at square one with the pain - other days it’s not so bad - I don’t even know if that normal with VA ..