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[Bella247]

Hi there

Can anyone confirm I’m not going mad and that this hot spell is a likely culprit in my latest vaginal atrophy flare up?

It’s honestly the only thing I can think of that is different to my normal routine and it’s really frustrating me.

I actually cannot be bothered to ask my GP for advice because they’re so completely useless.

I’m hoping things will improve when it cools down a bit because I’ve basically tried everything bar systemic HRT and intra rosa.

[CLKD]

What have U been using for VA on a regular basis: if symptoms are flaring: and yes both heat and stress may impact : then up to every night and if necessary, an extra dose in the morning.

[Ayesha]

Increase the dose until it clears up, heatwaves can not be good if suffering GSM.

[Minusminnie]

If you are using estriol it needs to be stored at 25 degrees c or below.
Something to be mindful of in this hotter weather.

[LittleClaire]

Yes I can confirm you aren’t going mad! I’ve had that too this past week has been hell. Feels like I’m having an allergic reaction down there it’s to itchy and irritated. The same happens after a bath or shower too so I think heat/sweat makes it worse. If I’m cooled down and relaxed I don’t feel it’s as bad. Bring on the winter 

[Bella247]

Thanks for replying. My current regime (that was working until the hot weather):

Estriol (stronger version) x 2 a week but every other day on the vulva (which is where the majority of symptoms are). This was on the advice of a gynaecologist.

Only washing with hydromol ointment in the shower, never ever having a bath.

Only using bleach free loo roll.

Patting dry gently and applying either olive and bee or v magic after every wee.

I recently did a reloading dose for a week which didn’t really work, then used a steroid cream (emovate?) twice a day (gynaecologist advised this for flare ups), seemed to improve things but it’s flared again.

In the past have tried Ovestin (worked for around 18 months then randomly stopped working), Vagirux (used for a few months, did not work at all and in fact made my symptoms very much worse).

Gynaecologist has ruled out lichen sclerosis (sorry can’t spell) which I was worried about as it seems to run in my family and I have severe health anxiety.

GP has been beyond dismissive and I just do not have the emotional energy to ask them about it ever again.

I didn’t know about keeping it below 25 degrees! Do I put it in the fridge?

Weirdly I’m less stressed than I often am so don’t think it’s that (although the discomfort is a bit stressful).

Have also taken an oral thrush treatment on the off chance it’s that (which I didn’t think it was but out of wanting to throw everything at it).

I’m really fed up of it now. It seems like it will never end. Weirdly it was feeling very uncomfortable yesterday but it seems to feel worse the hotter I am. I don’t really want to google too much because I have such bad health anxiety that won’t end well for me 

I asked about systemic HRT and whether that could help and the reply I got was (judgmental tone) we don’t really offer that where vagina symptoms are the ONLY symptom.

Any advice (or even just knowing I’m not the only one suffering) would be greatly appreciated

[Bella247]

Yes I can confirm you aren’t going mad! I’ve had that too this past week has been hell. Feels like I’m having an allergic reaction down there it’s to itchy and irritated. The same happens after a bath or shower too so I think heat/sweat makes it worse. If I’m cooled down and relaxed I don’t feel it’s as bad. Bring on the winter 

Oh thank you! It means a lot knowing it’s not only me xx

[LittleClaire]

I understand how you feel being dismissed by doctors it’s so unfair, in this day and age aswell. When I asked at my HRT review about a local oestrogen to put down there, she said “we don’t prescribe anything like that, you could try a normal moisturiser” how on earth can a moisturiser replace the lost hormones that are clearly causing this issue! They must all be singing from the same hymn sheet. I’ve ended up having to order Ovesse from Boots online and lying about my age to get it (I’m 38). Could you try using Ovestin again to see if it starts to help? I was given Estradiol pessaries to insert twice a week which I admit do help the inside to feel comfortable and soft again rather than dry.

[Bella247]

That’s really mad. I’m pretty sure if you download the NICE guidelines they say vaginal estrogen should be offered on top of systemic HRT if systemic HRT doesn’t address vagina symptom. It’s outrageous you’re having to pay so much for it when you could just get it covered by an HRT prepayment certificate.

[LittleClaire]

I know that’s what I thought too. It might just be some gp surgeries that try and say they don’t offer it I will have a look at the NICE guidelines. My patches and progesterone I get with the pre paid certificate but I’m paying £20 + delivery for a tube of the cream every 2 or so months 

[Snowcat]

Hi Bella - reading your post I had to check to see if it was me that had written it! You’ve pretty much described exactly how I feel! I too was wondering if the heat had anything to do with the increase in my symptoms so it’s interesting to know that you and Claire have also been suspecting this!

My current routine is estriol cream nightly on the outer bits & vagifem nightly internally.  Estrogen patches (Estraderm) and hydromol to ‘form a barrier and soothe sore, thin skin (not that it feels soothed at all!)

I’ve woken up today with soreness and irritation in the vulva and I can’t find anything that helps - this is after a week of improvement where I’d allowed myself to be a bit optimistic! I have health anxiety too and all this certainly isn’t helping! I hear you, I really do.  When I tell any medic that I feel like I’ve lost the will to live as it’s all so painful (can’t sit down at all yet) all I get is blank looks and I was even told all I needed to do was distract myself! Would they say that if I said I had a broken leg that was painful? I think not!

At least my gynaecologist was happy to let me have systemic HRT too so I’m throwing everything at it.  It seems so unfair that we poor girls have the same issue but it’s dealt with so differently depending on where we are and who we see! Again, that wouldn’t happen with a broken leg!  I was told I had lichen sclerosus but a biopsy was negative- so now I’m left with one gynaecologist saying no it isn’t that and another one saying it is ! (I feel like telling them to fight it out between them and not look at me like it’s my fault for being difficult!) in fact it was using dermovate that made my already thin, estrogen skin, worse.  Whatever I’ve got it’s not insanely itchy which is the main symptom of lichen I understand.

I’ve no idea how long all this pain will last - I’ve have it since the 12 April when it all began very suddenly.  My health anxiety makes me worry about Vulvodynia (even though gynae said not as she could see that the problem was with the skin) but I have trouble trusting any of them anymore as I was misdiagnosed twice.  If the local estrogen isn’t suiting you they should let you add in systemic HRT - it might be worth you asking for a second opinion or seeing if there’s a dedicated menopause clinic near you - it’s incredible how little GPs know about menopause - I sometimes wonder if they studied it at all - and if they did, they might not be aware of the updated info, and advice, as a lot has changed over recent years. 

I’m seeing my urologist tomorrow (dreading the drive to the hospital) he’s an amazing doctor - so kind - and I suspect he’ll be more helpful than anyone else I’ve seen, even though he’s not a gynaecologist! He’s already helped me with my diabetes and blood clots and he’s the only doctor I trust - it’s just such a shame that we have to keep fighting to feel normal especially as, like you say, you’re just too exhausted with it all to fight! I hope you find some help on here - everyone who is suffering will have tried and tested different things and will be happy to pass on what they’ve found has worked for them.  We have to be our own medical experts sometimes! But do remember you are far from alone.

[Minusminnie]

I didn’t know about keeping it below 25 degrees! Do I put it in the fridge ?

I keep my stock in the fridge until I use it and then a tube in bathroom cabinet. If temperature goes up in the house then tube I’m using goes in the fridge.

Personally I think it is the sweating in hot weather that causes things to be  worse.

I don’t have baths now but do use my makeshift sitz bath every now and again. Physio told me the warm water brings blood rushing to the area. We have a seat in the shower and my sitz bath is a small round rubber trough from a farming suppliers ! But it works for me.

[Snowcat]

I’ve just had a thought - I wonder if we’re experiencing a worsening of VA symptoms in this hot weather because we’re dehydrated? It’s hard to drink enough in hot & humid conditions- and my urologist
Said keeping well hydrated is important for all our bodily functions but don’t drink so much that you pee more than once every 2 hours or so, or you’ll be peeing out more than you’re taking in which of course is counter productive… regular sips rather than chugging down pints at a time ! :-)

[Wrensong]

my urologist Said keeping well hydrated is important for all our bodily functions

Yes Snowcat, not only important for helping to keep tissues down there (& everywhere else) hydrated, but if we're not drinking enough then passing concentrated urine can be irritant to inflamed tissue.
Wx

[CLKD]

In normal weather pee should be straw coloured: any darker and we need to up the amount of liquid: not necessarily via drinks as the body takes from all food stuffs: paler and we are drinking too much.  Did the Urologist tell U that?  Sometimes they miss out the important info..