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[Snowcat]

Hi all.  Has anyone tried a tens machine for either vulval pain due to low estrogen or even Vulvodynia?

If so, do you find it helpful and where do you place it? I’m assuming the base of the spine.  They’re not cheap so thought I’d ask on here first for any feedback.  Thank you :-)

[Minusminnie]

I was as desperate as you are at the moment at one time and got a Boots Tens machine. From memory you need to place the pads nearby which did not work. Tens machines I think are good for back pain but others may know.

It is the estriol that is eventually going to help you but that needs maybe a bit more time to work. There is also the option of estriol 0.01% cream if that doesn’t work.

I wish that there was an Estradiol cream to try but need to live in the US to get that.

Have you tried some ibuprofen for the pain I’ve found that at times when flaring it helps. Not sure if this can be taken with gabapentin you will need to check.

You’re using vagifem that must have taken some time to work when you started it ?

Your vulva sounds like it has become hypersensitive you may find that you end up better but not perfect as this all has to be managed.

[sheila99]

Do you use local oestrogen as that really is the only way to sort it? For using externally you need the 0.1% not 0.01% estriol cream. No experience with tens but until recently when I increased systemic oestrogen I had to use the estriol cream every day and it does take some time to work.

[Snowcat]

Hi Minusminnie.  Thanks for that.  I don’t think I’ll bother with a tens then - I’ve already spent a fortune on various creams , ointments, & cushions!

I’m using the estriol cream (formerly Ovestin) every day (even though they said twice a week) When I first started using vagifem I was already on systemic HRT so was pretty much back to normal - the vagifem was just the icing on the cake so to speak! Gynae are now going to increase my patch dose to either 75 or 100 but I need to speak to my GP first (not sure why)

I don’t mind not being perfect as long as it’s better than it is right now .. unfortunately I can’t take anti-inflammatories as I’m on blood thinners.  I’m on gabapebtin but it’s not doing anything.  I’m going to try tramadol again I think.  Oramorph is the only thing that works.  Nerve involvement has been mentioned but they stopped saying that when they saw that the skin is clearly damaged.  The estriol cream stings but I can cope with that if I know it’s doing some good.

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?

[Snowcat]

Minusminnie - I just read back my answer and realise it may not make sense - I meant when I first went on vagifem years ago - then I was on systemic HRT as well but that ended 2 years ago when I was told to stop taking it due to blood clots - if they’d told me then that I could have the patches instead I wouldn’t be in this state now …

[Minusminnie]

I’ve not been on systemic HRT so can’t really comment but I think even then the VA can creep in from reading other threads. It then needs localised.

  re the patches as it must leave you wondering.

[Snowcat]

Thanks for the hug! 🤗Yes I think you’re right sometimes both is needed.  Right now each day seems the same - no sign of improvement although I had a few good days last month … I dread waking up at the moment to be honest - my GP asked if I was depressed, or anxious, I said ‘yes - about this!’ Gynae told me to speak to the pain specialist at my surgery - eh? They just said ‘what pain specialist- not got one of them’ I’m under a pain clinic for fibromyalgia but I don’t think they will be able to help with this - more estriol is probably my best bet.  Got to drive on Monday and Tuesday - have got a donut seat but still dreading it.  Patience isn’t by strong point - can you tell? 😂

[Dierdre]

Hi Minusminnie.  Thanks for that.  I don’t think I’ll bother with a tens then - I’ve already spent a fortune on various creams , ointments, & cushions!

I’m using the estriol cream (formerly Ovestin) every day (even though they said twice a week) When I first started using vagifem I was already on systemic HRT so was pretty much back to normal - the vagifem was just the icing on the cake so to speak! Gynae are now going to increase my patch dose to either 75 or 100 but I need to speak to my GP first (not sure why)

I don’t mind not being perfect as long as it’s better than it is right now .. unfortunately I can’t take anti-inflammatories as I’m on blood thinners.  I’m on gabapebtin but it’s not doing anything.  I’m going to try tramadol again I think.  Oramorph is the only thing that works.  Nerve involvement has been mentioned but they stopped saying that when they saw that the skin is clearly damaged.  The estriol cream stings but I can cope with that if I know it’s doing some good.

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?

Estriol cream always stings for me too, I use every night. Not sure if I've mentioned before to you but I apply Bepanthen baby ointment after applying Estriol all around the vulva and it stops the stinging and also moisturisers without any irritation.

[Minusminnie]

Thanks for the hug! 🤗Yes I think you’re right sometimes both is needed.  Right now each day seems the same - no sign of improvement although I had a few good days last month … I dread waking up at the moment to be honest - my GP asked if I was depressed, or anxious, I said ‘yes - about this!’ Gynae told me to speak to the pain specialist at my surgery - eh? They just said ‘what pain specialist- not got one of them’ I’m under a pain clinic for fibromyalgia but I don’t think they will be able to help with this - more estriol is probably my best bet.  Got to drive on Monday and Tuesday - have got a donut seat but still dreading it.  Patience isn’t by strong point - can you tell? 😂

Via a private consultant I was referred back to NHS pain clinic years ago hence my time trying gabapentin amitriptyline & pregablin for vulva pain.

Where the pain clinic may help you is a referral to a counsellor. I couldn’t have met a nicer more helpful person who gave me lots of pointers. She had arthritic hands herself.

Don’t mean to be trite in any way but maybe a sudden need with your fibromyalgia could get you back to the clinic to see someone. I push for anything nowadays via whatever route.

Must admit I stopped driving at times on gabapentin as the higher doses made me unsafe for others.

Take your head to another place if you can. Distraction does things to the brain that it then forgets the pain for a while. Concentrating on driving may help that.

All this tries anyone’s patience !

[Ayesha]

I'm no medic but the fact you suffer with fibromyalgia must have a bearing on GSM and perhaps the reason you are struggling finding relief from symptoms, might be worth doing some research into this.

I'm not on systemic HRT but it took a year to be symptom free using topical treatment alone. Also with flare ups I increase to two Vagifem daily, three smears of Estriol daily and within three days I am symptom free again. After five years of this vile condition, this is how I've learned to treat it with success, you have to throw everything at it and in quantity.

[Snowcat]

Minusminnie.  I will see if I still have my direct access to the pain clinic - again, it’s the thought of having to get there and sit there that’s put me off but I do think the fibro is making it more painful - maybe! I’m sorry you’ve had so much pain too - 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. 

Ayesha thank you.  I’m sorry it took you a year! That’s awful … does the estriol cream not sting every time you use it? I’ve put some extra on this morning and it’s set everything on fire.. usually I just use it at night and knock myself out with an antihistamine.  I could do twice with the vagifem but it’s really just the labia that’s so painful.  Do you use any other moisturisers down there that don’t interfere with the absorbtion of the estriol cream? I was interested in your reply because I was even just beginning to think I might be causing more problems by using the cream every night (my GP said twice a week only but that really doesn’t seem enough - thankfully my practice nurse doesn’t agree with him!) maybe it’s meant to hurt before it gets better!

[Snowcat]

Hi Minusminnie.  Thanks for that.  I don’t think I’ll bother with a tens then - I’ve already spent a fortune on various creams , ointments, & cushions!

I’m using the estriol cream (formerly Ovestin) every day (even though they said twice a week) When I first started using vagifem I was already on systemic HRT so was pretty much back to normal - the vagifem was just the icing on the cake so to speak! Gynae are now going to increase my patch dose to either 75 or 100 but I need to speak to my GP first (not sure why)

I don’t mind not being perfect as long as it’s better than it is right now .. unfortunately I can’t take anti-inflammatories as I’m on blood thinners.  I’m on gabapebtin but it’s not doing anything.  I’m going to try tramadol again I think.  Oramorph is the only thing that works.  Nerve involvement has been mentioned but they stopped saying that when they saw that the skin is clearly damaged.  The estriol cream stings but I can cope with that if I know it’s doing some good.

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?

Estriol cream always stings for me too, I use every night. Not sure if I've mentioned before to you but I apply Bepanthen baby ointment after applying Estriol all around the vulva and it stops the stinging and also moisturisers without any irritation.

Hi.  Yes I do remember now - I’ll definitely get some of that.  Anything’s worth a try and it’s good to know what’s worked for others so thank you replying :-)

[bombsh3ll]

Just another suggestion - lidocaine gel.

I was given this by gynaecology alongside a box of ginormous dilators after failed surgery for vaginal stenosis and told to get cracking otherwise I'd be never be able to satisfy a man.

I can't speak to whether the lidocaine would have made the dilators any less painful because the only place I inserted them was the nearest bin, but clearly it was considered safe for genital use as a topical anaesthetic.

[Snowcat]

Hi Bombsh3ll - that’s interesting because I was given a tube of lidocaine by an urgent care doctor before VA was diagnosed, but when I mentioned this to two different GPs they both said, rather ominously I thought ‘oh you don’t want to give yourself more problems’ but they didn’t enlarge on what they meant! So I’ve been a bit reluctant to try it but my friend who’s a nurse said it’s often used before any ‘procedures’ in that area… I might give it a go ..

[Ayesha]

Ayesha thank you.  I’m sorry it took you a year! That’s awful … does the estriol cream not sting every time you use it? I’ve put some extra on this morning and it’s set everything on fire.. usually I just use it at night and knock myself out with an antihistamine.  I could do twice with the vagifem but it’s really just the labia that’s so painful.  Do you use any other moisturisers down there that don’t interfere with the absorbtion of the estriol cream? I was interested in your reply because I was even just beginning to think I might be causing more problems by using the cream every night (my GP said twice a week only but that really doesn’t seem enough - thankfully my practice nurse doesn’t agree with him!) maybe it’s meant to hurt before it gets better!

After five years yes, the estriol still stings but I always smear on Yes moisturiser first then use the cream which stops the stinging.
Antihistamines are the worse meds you can take if you suffer from vaginal atrophy, it will bring on symptoms and are definitely not recommended.