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[Minusminnie]

Minusminnie.  …..did the gabapentin/pregabalin/amitriptylinw help with your vulval pain? I tried them all for the fibro a few years ago but no success - just weight gain! My GP is now wanting to up my gabapentin dose to 1800 mg daily (I’m on 1200mg at mo) but I’ve stopped the amitriptyline as I just can’t function on that. 

Is 1800mg gabapentin the top therapeutic dose for nerve pain I can’t remember ?
No gabapentin, pregabalin & amitriptyline didn’t do anything for my vulva pain.

The pain clinic consultants are generally anaesthetists. The next thing that was arranged for me was ketamine cream ! By this time I knew I was on the wrong route stared at the pot on the kitchen table debating it but didn’t use it.

All lidocaine does is numb and will be yet another cream/gel in the mix with additives.
Probably used on unbroken skin that is not sore & best avoided.

[Snowcat]

That’s what I thought on reflection Minusminnie.  Least used the better. Hopefully you found something that worked in the end?

[Snowcat]

Hi again Ayesha.  You’re right about antihistamines drying you out - I’m constantly trying to juggle things - I have interstitial cystitis too and they do help with that, not every night, just when it’s too painful to sleep.

Do you use the YES VM or the WB? Am I right in assuming that if it’s one of the above it won’t interfere with the absorbtion of the estriol cream? Which do you put on first or do you mix them? So long as it’s not ‘watering down’ the estriol cream then that seems like a great idea! I’ve got lichen sclerosus too but that’s never bothered me before. Thank you for all your replies Ayesha - you’ve been very kind & helpful. 

[Minusminnie]

I use estriol (ovestin) internally & externally.
Use of Vagifem over quite a period of time never reached the vulva for me hence my searching elsewhere with a private pain consultant
It’s now manageable which is fine by me. Plus I now try tips given on the forum.

[sheila99]

Hi Sheila99 Thank you.  Yes I’m using estriol (formerly Ovestin) cream every night - it stings but if it works I don’t care! It is the 0.1% one.  Can I just ask do you mean that when you increased the systemic estrogen you didn’t need to use the estriol anymore? (that was the case with me years ago when I had early menopause at age 33) or are you still using both? When you say it took some time to work - any idea how long? I know we’re all different but I’m beginning to think the 2-3 months I was told was a bit ambitious- they’re only just increasing my patches to a reasonable dose.  Did you use any moisturisers as well as the estriol?

My GP is firmly in the 'system say No' camp when it comes to prescribing enough local oestrogen to stop the symptoms. The NHS limit of max 100 estradot doesn't control my anxiety and insomnia now either so I am going private. Been on 200 estradot for 6 weeks and I no longer need vagifem, I still use ovestin on the outside when I feel I need it (long bath or tight trousers) probably once or twice a week. And I am no longer incontinent when I walk  , still am when I run but I'm hoping it will continue improving. With adeqate oetrogen levels I dont think you need local at all, i's just that on the NHS you're unlikely to get the levels required. GSM is't something we get when we are young and producing gallons of our own oestrogen. I haven't used anything except ovestin on the outside but it doesn't sting me either. Once the skin is damaged I think it takes longer to get better

[Ayesha]

Do you use the YES VM or the WB? Am I right in assuming that if it’s one of the above it won’t interfere with the absorbtion of the estriol cream? Which do you put on first or do you mix them? So long as it’s not ‘watering down’ the estriol cream then that seems like a great idea! I’ve got lichen sclerosus too but that’s never bothered me before. Thank you for all your replies Ayesha - you’ve been very kind & helpful.

I have only ever used YES VM and its never hindered the estriol cream, no problems at all.
I smear on the Yes first then smear on the estriol cream.

[Ayesha]

My GP is firmly in the 'system say No' camp when it comes to prescribing enough local oestrogen to stop the symptoms. The NHS limit of max 100 estradot doesn't control my anxiety and insomnia now either so I am going private. Been on 200 estradot for 6 weeks and I no longer need vagifem, I still use ovestin on the outside when I feel I need it (long bath or tight trousers) probably once or twice a week. And I am no longer incontinent when I walk  , still am when I run but I'm hoping it will continue improving. With adeqate oetrogen levels I dont think you need local at all, i's just that on the NHS you're unlikely to get the levels required. GSM is't something we get when we are young and producing gallons of our own oestrogen. I haven't used anything except ovestin on the outside but it doesn't sting me either. Once the skin is damaged I think it takes longer to get better

And its because I am not on systemic HRT that no one can tell me how much topical oestrogen I should use, I tell them what I need to control my symptoms. Its been hard work since moving to a new area where I have had to explain myself to all and sundry why I am on daily use.
Apart from the amazing practise nurse at the surgery, she knows it all and is very understanding and knows what it can take to control GSM.

Topical oestrogen is safe to use, there should be no fuss made as to how we use it.

 

[Snowcat]

Hi Sheila99 Thank you.  Yes I’m using estriol (formerly Ovestin) cream every night - it stings but if it works I don’t care! It is the 0.1% one.  Can I just ask do you mean that when you increased the systemic estrogen you didn’t need to use the estriol anymore? (that was the case with me years ago when I had early menopause at age 33) or are you still using both? When you say it took some time to work - any idea how long? I know we’re all different but I’m beginning to think the 2-3 months I was told was a bit ambitious- they’re only just increasing my patches to a reasonable dose.  Did you use any moisturisers as well as the estriol?

My GP is firmly in the 'system say No' camp when it comes to prescribing enough local oestrogen to stop the symptoms. The NHS limit of max 100 estradot doesn't control my anxiety and insomnia now either so I am going private. Been on 200 estradot for 6 weeks and I no longer need vagifem, I still use ovestin on the outside when I feel I need it (long bath or tight trousers) probably once or twice a week. And I am no longer incontinent when I walk  , still am when I run but I'm hoping it will continue improving. With adeqate oetrogen levels I dont think you need local at all, i's just that on the NHS you're unlikely to get the levels required. GSM is't something we get when we are young and producing gallons of our own oestrogen. I haven't used anything except ovestin on the outside but it doesn't sting me either. Once the skin is damaged I think it takes longer to get better

It seems crazy that women can’t get what they need to have a decent quality of life! This wouldn’t happen if it was a male problem grrrr .. I think you’re right though - my skin is very damaged which is why it’s stinging - in fact everything I try stings! Glad you’re getting the dose you need but sorry you have to pay for it!

[sheila99]

I'm just grateful I'm in a position where I can go private, there are many others who can't afford it and just have to suffer unless they're fortunate enough to have a knowledgeable GP.

[Snowcat]

I'm just grateful I'm in a position where I can go private, there are many others who can't afford it and just have to suffer unless they're fortunate enough to have a knowledgeable GP.

It’s so strange because if you had a broken leg you wouldn’t get some medics saying ‘we’ll re-set it and put it in plaster’ and other’s saying ‘oh no. We don’t put broken legs in plaster here - you just have to keep walking on it’ why is the treatment so variable for the same condition - I’m fortunate in that I have a good GP surgery and clued up nurses but like you, I really feel for those who don’t and have to fight to get out of pain!

[Snowcat]

I use estriol (ovestin) internally & externally.
Use of Vagifem over quite a period of time never reached the vulva for me hence my searching elsewhere with a private pain consultant
It’s now manageable which is fine by me. Plus I now try tips given on the forum.

Can I just ask you - you added in estriol externally when internally wasn’t enough to reach the vulva - can you remember how long it took to make a difference once you started using it externally as well please?

[Minusminnie]

No i stopped the Vagifem that i was using which i tried at many levels as it was not reaching the vulva.
I really cannot remember how long it took for the estriol to help on the vulva.  I now use it internally and externally.

[Snowcat]

Thank you Minusminnie.  I’m glad you found something that works for you.  I guess damaged skin takes quite a while to heal - especially vulval skin. 

[Coco62]

I read that systemic HRT doesn't fully address local problems with GSM Possibly on Newson website?
I take Intrarosa ( daily) sometimes and Imvaggis ( daily)  sometimes as both leak out from my vagina and moisture and nourish my vulva. Blissel gel is another option, it  has a different carrier from Ovestin. It's not as potent though!

[Minicat]

Yeah, I’ve used a TENS machine for vulvodynia. It didn’t completely get rid of the pain, but it helped take the edge off during flare-ups. I place the pads low on my back, just above the buttocks, and sometimes on the inner thighs depending on the type of pain. Definitely worth trying if other stuff isn’t cutting it.