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Author Topic: Vagifem and vulval burning - do all topical oestrogen products also do this?  (Read 2843 times)

Lamplighter

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My little encounter with intense vulval burning as a direct result of using Vagifem pessaries (just over four weeks ago now) prompted me to search these forums - only to find an outrageously high number of posts describing exactly the same side effect.

Ok so quite a few people are saying that if you persevere the burning eventually subsides and the stuff works - or at least that's what I've gathered from the posts I've read.  I suspect somehow though that that is not going to be the case for me and I'm extremely reluctant to keep going with it as even now, over four weeks down the line, I am still suffering bad burning (not all day but every day, sometimes all day).  I lasted on the pessaries eight nights before having to give up, then thought maybe reducing to the maintenance dose (every 3/4 days) would make a difference.  Yes it did, out of every seven days I had about three that were burn free!  For some reason I now don't have burn free days at all.

The link between the pessaries and the burning was very obvious.  I just couldn't tolerate it, never having had the burning experience before, at all in my 11 years of being post menopausal.  My heart goes out to those of you whose stories I've read on here who go through this as a matter of course  :hug:

I am wondering firstly, how many of you who tried the Vagifem did give up because of the burning (ie it didn't subside despite continuing use) and secondly, do other topical oestrogens also cause burning in the same way?  I have been prescribed a tube of generic Estriol which I am really loathe to shove anywhere except outside (and it doesn't help there either) even though it's ten times weaker than the Vagifem. 

I also wonder if anyone else has had this reaction and the burning NOT subsided despite stopping the Vagifem?  I'm terrified that whatever it's done to me, it's somehow hooked into the VA I do have and is now permanent  :-\

Oh, and I wondered if it wasn't thrush or vaginosis so have taken the Canesten stuff for both.  No improvement  :(

Thanks

LL
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jaypo

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Hi there,when I first started vagifem, I was fine during the two week load up but like you,it then started to .....not burn as such but sting,so I stopped but then all my horrible VA returned so it was helping,so I started again a week and a half later just using twice a week and the stinging hasn't returned and I'm happily using it just on the twice a week dose.
Are you on twice weekly?
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Lamplighter

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Hi Jaypo, glad to hear the stinging went away and that the Vagifem worked. 

I thought it was working, a bit (at least it did help with the urgency incontinence) but the burning was so painful I couldn't keep it up.  I only did it a couple of times on the 3/4 days a week regime and gave up, switched to full strength systemic which fingers crossed will also address all the other post menopausal symptoms.

I just wondered if using other topical oestrogen creams might not also cause burning, as I'd be very happy to try combinations, anything to get on top of these at times unbearable symptoms  :'(
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Whatsupwiththis

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Hi Lamplighter.  PERSEVERE!   I am one who went through raw stinging that was so horrendous I was contemplating suicide.  My GP was adamant....keep on it.  I took Vagifem 7 days a week for approx. 8 mos.  It took that long (for me) to get symptoms under control.  I am now 5 days a week and use estrogen cream externally at the same time.  It has been over 1 year and I am pretty much symtom free.  Keep on using Vagifem.  Your vulva nerves are waking up so it's working.  Good luck and keep us posted.
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Joaniepat

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To use an oestrogen cream on the vulva, you can mix it with a bit of vaginal moisturiser if it stings. It helps until you get used to it.

What else have you tried besides, or in addition to, Vagifem?

JP x
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Lamplighter

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Whatsupwiththis (love the name!) thanks for that encouraging reply.  I've read of others too who have persevered through the absurd burning/stinging (I say absurd because I can't help thinking that with so many women suffering this, the powers that be might just think about creating a product that accounts for this and counters it). 

My issue is that I'm not using the Vagifem from afresh, I've been on various forms of pretty high strength (although systemic) HRT continuously for seven years, apart from a few months here and there when I've tried taking myself off it.  So it's not as if the vaginal nerve endings haven't had quite a lot of estogen coming their way for any length of time, on the contrary. 

However, it is heartening to note that the burning does subside and if I get brave enough to try topical oestrogen again (I'm more inclined to stick with systemic as it helps with stuff like hot flushes, joint pain, dry eyes/mouth/nose/skin/hair/fingernails etc which the topical doesn't) I will grit my teeth and remember your words! 

Thank you

LL
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Lamplighter

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Hi JP, thanks for replying.  That's not a bad suggestion, I will give it a go  :)

Lol to your last question, how long have you got?  Are you sitting comfortably, cup of tea to hand?   :D

Had just taken myself off seven years on more or else continuous HRT in order to try the Vagifem as none of the products I'd been using (Systemic HRT - including patches and oral tablets of various brands and combinations of oestrogen/progesterone) seemed to be working adequately like my original but discontinued HRT.

So was extremely surprised to get the burning, which I have put down to something in the pessaries themselves (will be posting about that later - something called Hypromellose) - but in the meantime had used just about every non-hormonal vaginal moisturiser known to man, or woman rather (with burning as an inevitable result of every one except YES, which didn't do much anyway) and other potions lotions and creams such as Aloe Vera, KY jelly (which does help, marginally) Diprobase (gleaned from reading these boards), Multi-Gyn Actigel (also gleaned from these boards), coconut oil, and my own left field attempt - an antihistamine cream called Fenistil - I figured that as my labia were so dry they pinched and stung and abraded (like wearing sandpaper in your knickers, though I haven't worn knickers for eight years or is that TMI?) that a stinging cream might work.   In fact a combination of coconut oil and Fenistil is my go-to at the moment, though the relief only lasts a short time.

Way back in the dim dark ages before going on systemic HRT I was prescribed a tube of some oestrogen cream or another I forget which brand (not pessaries) and it did absolutely nothing - which is why I went on HRT in the end.

I now have generic Estriol cream to use and might just try persevering with that, so far I'm only applying it very sparingly to the labia where it doesn't seem to burn (but doesn't do anything either!)  Will go now and mix it with some YES and try again.

Thanks for the suggestion.  Hope you enjoyed the tea  ;D

LL
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Lamplighter

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p.s. forgot to mention - Neem oil, lanolin, and the various Vagisil products.  None helped  :(
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Sage 🍃

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Hi LL, welcome! Sorry to hear your VA hasn't settled yet. I have been offered vaginal Promestriene, called Colpothophine I think 🤔, when I lived abroad and the doctor was in love with this medication! It has been used for many years by millions of women worldwide but not licensed in the UK?! Fortunately I didn't need it at the time, but now I think I'd like to try it for incontinence!
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CLKD

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Some are sensitive to lanolin!

Stick with 1 medication or you will confuse the brain into not knowing what actually stings.  I equate it with having sore/dry hands, vaseline stings initially until it's rubbed into the skin to ease the dryness.  Same with the vaginal area, keep on with either 'vagifem' or 'ovestin'.  Double 'vagifem' twice a week if required.  'Ovestin' can be applied gently inside and out but needs to be done regularly.

Don't despair!
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Lamplighter

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CLKD thanks for the encouragement  :)

I should point out that my extensive list of attempted creams lotions potions etc were all tried out over a period of years, including pre HRT and in between (when trying to wean myself off) - not together!  At the moment I am back on a systemic HRT and looking at a cream/pessaries to supplement that until (or unless!) the systemic stuff kicks off.  Vagifem I tried without taking anything else and freaked at the burning - as I said above, never before experienced.  It's this labial irritation that gets me the most, if I could find something to alleviate that I could maybe get on with things instead of being endlessly focussed on a physical experience that has taken over my life.  Will post about the labial stuff at some point shortly. 

I have to say, whoever designed us did a pretty poor job of it!
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CLKD

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I find that KY Jelly gently applied around the labia and vagina helps keep it moist. 

Have U looked at 'yes' or 'sylc' websites, some find those help with stinging.
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Lamplighter

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Hello Sage, thanks for the welcome.  I looked up the stuff you mentioned and you're right, it does seem that it's not available in UK (more's the pity).  I came across a couple of earlier threads on here too about it which were interesting.  As I spend time in France (when allowed to go that is, Covid restrictions making it not possible right now) I might be able to see a French doc and ask about it there.  But that's like, hm, one day in the probably quite distant future.

But will make a note all the same.  Thanks

LL

p.s. actually, not sure now what with Brexit in place how medical treatment for Brits in Europe pans out... ugh all these problems!
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Lamplighter

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Thanks again CLKD for perservering with your help!  Yes, YES is the only one of all the vaginal moisturisers that doesn't result in burning/stinging so I tend to use that for outer moisture when KY jelly or whatever other cream I'm currently using (coconut oil usually) seems to stop working.  Internally I found it quite useless.  I know I've tried Sylk at some point and it didn't help but can't remember exactly what the problem was.

The trouble always seems to be that no matter what moisturiser I'm using, the labia refuse to be moisturised.  They can be dripping wet with whatever, including moist vagina from HRT and still cause pinching rubbing burning abrading sticking sensations which become unbearable.  I haven't had a day in nearly two years without this going on all the time.  Ugh ugh ugh.

And now, thanks to Vagifem, I have this constant vulval burning - which IS painful, on top of the nasty light fiddly little sensations of the irritated labia.  I am not a happy bunny!!!!!! 

Thanks for listening to me, sorry for ranting.  It's only when I start typing I realize just how much this has taken over my life and affected me mentally/emotionally and out comes the frustration and helplessness. 

 :bang:

p.s. just remembered something I came across in my endless researches on the internet concerning YES and other VMs.  Will post a link to it in another thread.
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CLKD

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U rant! that's why we are here!

Use the 'yes' or KY Jelly every hour.  What colour is your urine?  Should be straw coloured.  If I dribble I can feel when I'm not drinking enough. 

It's like feet: when we can't sit down in comfort symptoms can take over!
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