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[sap22]

I am in feeling very down and in despair.  I just can't see any light at the end of the tunnel.  After months of bladder problems in August 2015 I got better then was diagnosed with Vaginal Atrophy in May 2016, which was improved by systemic HRT and vagifem.  When I went to see my menopause specialist for follow up this September she diagnosed Lichen planus and told me to use steroid cream and vaseline. I didn't believe her (gut feeling!) and went to see another sexual health consultant in London who did an internal and gave me a good report regards the vaginal health (PH, no inflammation, VA or lichen planus etc). However, that caused a lot of delayed pain but improved after 10 days.  Both she and the menopause specialist decided I should see a vulva dermatologist to definitely rule of LP as they disagreed. I saw her three weeks ago and although she can categorically say I do not have LP and is glad I didn't use the steroid cream, ever since she did the Q tip test I have had vulval pain/tenderness and it's getting me down so much. I can't use the vagifem as it makes it worse and this is worrying me because I don't want the atrophy coming back. Haven't used it for 14 days now. Last night I tried to gently put on a little barrier emollient to protect the area but I woke up in agonising burning pain at 2am.  I am also having breakthrough bleeding (possibly from increased oestrogen) and will soon have an ultrasound, but I know I won't tolerate the transvaginal ultrasound, as I have significant touch tenderness now.

I just don't understand how the vulvodynia can worsen when I have used the vagifem religiously, balance active and Hyalofemme moisturiser and improved the situation enormously, but now am left with this neuropathic pain and cannot continue with local treatment, or get on with life - just the simplest things like sitting is uncomfortable or wearing clothes down there. 

I wondered if anyone else can identify with this and how they moved forward.  Thank you for reading...

[Dennylou48]

Hi lovie so sorry your having a rough time of it with your lady garden.(that's what I call it) I use vagifem wash twice a day, it's a simple wash and can rebalance your everything for you. It works for me. I have been using it for 6 months and it's been all good. You can buy it at any superstore or chemist. It's worth a try. I hope things improve for you. Good luck. Xxxx

[sap22]

Hi lovie so sorry your having a rough time of it with your lady garden.(that's what I call it) I use vagifem wash twice a day, it's a simple wash and can rebalance your everything for you. It works for me. I have been using it for 6 months and it's been all good. You can buy it at any superstore or chemist. It's worth a try. I hope things improve for you. Good luck. Xxxx

Hi Dennylou and thanks for your reply.  I've never heard of vagifem wash. The vagifem I am talking about is the oestrogen pessary which goes in the vagina....can you confirm which one you mean...are you in the UK?  thanks

[Dennylou48]

Stupid me was meant to put vagisil not vagifem. Lol xx

[Dennylou48]

I am in the uk and I buy mine at home bargains. It's 4.79 but lasts for ages. Xx

[Hurdity]

Hi sap22

Sorry to hear about your vulval pain. I only once had this (maybe about a year or so ago?) - it was spasms of pain in inner labia and maybe clitoris - not sure. Doc examined me and couldn't find anything wrong but did prescribe a steroid cream to use until it went away - which it did really quickly and I haven't had it since. She also prescribed Amitryptyline - which naturally I didn't take and is still sitting in the cupboard! Why are you glad you didn't use the cream? - the one I had was very soothing. I am also on systemic HRT, testosterone and Vagifem. Re the atrophy - there is also the Estring which you can leave in most of the time - there aren't many posting on here who use this so not sure if it causes less irritation - but at least you don't have to stick something up there twice a week  ( not meaning to sound flippant!).

I'm sorry I can't help more with this - the experts on all things vaginal are Dancinggirl and maryjane - probably others too! Everyone is so busy and there are so many posts and members that it just isn't possible to read them all let alone answer! I hope one of them may be along to advise.

Hurdity x

[CLKD]

Do preserve with applying something or the area will be too dry to tolerate anything.  Something cooling maybe?  Have you tried something simply like Live Yoghurt …… I use Savlon on the outer lips to keep skin moist.  Several times a day if necessary.

Is your urine acidic 'cos that will cause soreness. 

[Maryjane]

Hurdity I have spoken to sap on the phone today.

[Hurdity]

Oh !!!!! A bit confused now.....  . But - great!

Hurdity x

[Maryjane]

Hurdity 😊 I no sap from elsewhere , so as you said I may be along later re help I had already rung her.

I need to learn how to copy and paste " my VA " journey🤔

[sap22]

Hi sap22

Sorry to hear about your vulval pain. I only once had this (maybe about a year or so ago?) - it was spasms of pain in inner labia and maybe clitoris - not sure. Doc examined me and couldn't find anything wrong but did prescribe a steroid cream to use until it went away - which it did really quickly and I haven't had it since. She also prescribed Amitryptyline - which naturally I didn't take and is still sitting in the cupboard! Why are you glad you didn't use the cream? - the one I had was very soothing. I am also on systemic HRT, testosterone and Vagifem. Re the atrophy - there is also the Estring which you can leave in most of the time - there aren't many posting on here who use this so not sure if it causes less irritation - but at least you don't have to stick something up there twice a week  ( not meaning to sound flippant!).

I'm sorry I can't help more with this - the experts on all things vaginal are Dancinggirl and maryjane - probably others too! Everyone is so busy and there are so many posts and members that it just isn't possible to read them all let alone answer! I hope one of them may be along to advise.

Hurdity x

Hi Hurdity, sorry that I only saw your reply today, so thank you for this... just wondered what steroid cream you used.  I saw a vulval dermatologist who thought it might irritate the skin if I didnt have a skin condition per se, like lichen planus or something.  I know you are busy, so thanks for your help anyway.x

[Hurdity]

OK Thanks Mary - I was puzzled because there was no correspondence and then you suddenly said that!!

Sap - it's called Betnovate RD ointment - contains betamethasone valerate and was described on box as "ready diluted Betnovate 1 in 4 ". Concentration 0.025 %.

I used it right between the upper labia and the whole of the vaginal entrance - so not the external skin as such - the area that is exposed when you open your legs if you see what I mean! It didn't irritate this area at all and as I said the pain went away quickly but then mine was a temporary inflammation or something and as I am on estrogen through HRT and Vagifem - perhaps it was easier to use something like this? Sorry I can't really help as I didn't even read about it - just used the stuff as I kept getting the painful spasms! The pain etc has never returned.

Hurdity x

[sap22]

OK Thanks Mary - I was puzzled because there was no correspondence and then you suddenly said that!!

Sap - it's called Betnovate RD ointment - contains betamethasone valerate and was described on box as "ready diluted Betnovate 1 in 4 ". Concentration 0.025 %.

I used it right between the upper labia and the whole of the vaginal entrance - so not the external skin as such - the area that is exposed when you open your legs if you see what I mean! It didn't irritate this area at all and as I said the pain went away quickly but then mine was a temporary inflammation or something and as I am on estrogen through HRT and Vagifem - perhaps it was easier to use something like this? Sorry I can't really help as I didn't even read about it - just used the stuff as I kept getting the painful spasms! The pain etc has never returned.

Hurdity x

Thanks, Hurdity.... I think mine is more neuropathic pain, as don't have inflammation... but thanks for your help anyway.xx

[pepperminty]

Hi,

sorry to hear about your problem. I went to see a dermatologist who specialised in this area. Everyone is different and some treatments work for some and not for others. I had very bad reactions to steroid creams, but was recommended 1% hydrocortisone ointment which your GP can prescribe or you can buy over the counter.( 1 % should not cause any thinning of the tissues as it is low dosage, although one shouldn't use it for longer than 6 months at a time gradually reducing).   Creams have ingredients that can irritate some. Also Hydromol ointment, is regularly prescribed as a wash and moisturiser by professionals for this area as there is less chance for irritation.
The pain is an issue that needs dealing with, there are a number of options, such as certain types of antidepressants on an extremely low dosage which can help block the pain receptors and there are also things like gabapentine which does the same thing.

Some type of local oestrogen may help , but it sounds like you need to get the pain under control first.

I would not use any steroid creams on that area without medical advice.

Good luck

Pepperminty x
 

[Hurdity]

sap22 - I was just guessing inflammation - it must have been nerve pain because she gave me amitryptiline - but I didn't bother taking that!

Hope you manage to find something very soon that helps

Hurdity x