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[buffy26]

Thank you Ayesha, this is great. I just feel a little annoyed as I saw a consultant Gynae in January and she said you are well estrogenised and advised me to strip right back on the dosing to just two a week. It was then everything went rapidly down hill. So because things appeared to her to be well at the time, surely it must have occurred to her that I had only reached that point by the daily use of Vagifem. To be made to feel I was 'over-using' is crazy. I was also prescribed Clobaderm for LS. She was confident the tissue loss and fusing was 'likely' to be active LS, yet I had no symptoms then nor any historically. No itching or white patches. Neither GP or the hopsital even offered any Ovestin which is clearly what I needed to prevent the bright red burning tissue all around the area

[Dierdre]

If you have LS you definately need Estriol cream for external use as part of the maintenance alongside the steroid cream when you have a flareup, this is usual practice.. LS needs to be properly diagnosed ny biopsy, this is the only way to confirm for definate as VA symptoms show the same red soreness. A vulva consultant diagnosed my LS
by sight only, although I had no signs of LS other than the red sore patches and he said it was traces that were not active. I personally think it was VA, I never had white patches or itching but who knows.The steriod cream is useful with a bad VA flareup though as it heals the labia very fast so the estrogen cream can be applied without the burning and stinging.

[Ayesha]

Thank you Ayesha, this is great. I just feel a little annoyed as I saw a consultant Gynae in January and she said you are well estrogenised and advised me to strip right back on the dosing to just two a week. It was then everything went rapidly down hill. So because things appeared to her to be well at the time, surely it must have occurred to her that I had only reached that point by the daily use of Vagifem. To be made to feel I was 'over-using' is crazy. I was also prescribed Clobaderm for LS. She was confident the tissue loss and fusing was 'likely' to be active LS, yet I had no symptoms then nor any historically. No itching or white patches. Neither GP or the hopsital even offered any Ovestin which is clearly what I needed to prevent the bright red burning tissue all around the area

Yes, of course it was the Vagifem that made you well estrogenised, that's what it does.
I was so surprised at how much the nurse at my recent review was up to date on all the latest studies and was so knowledgeable about VA(GSM), she didn't question my dose of every day Vagifem because that's what I need.

Thinking back to when I first presented with the horrific symptoms about three years ago, I was sent away three times with antibiotics even though I didn't have an infection and even worse none of the nurses knew or had heard of the condition. I eventually got diagnosed after the GP examined me for what I thought was a prolapse, but she said no, you need oestrogen down there but never told me why!

I hope the tide is turning, we will know when the instructions in the Vagifem leaflet is changed from the outdated information it contains, that will be the turning point.

[buffy26]

If you have LS you definately need Estriol cream for external use as part of the maintenance alongside the steroid cream when you have a flareup, this is usual practice.. LS needs to be properly diagnosed ny biopsy, this is the only way to confirm for definate as VA symptoms show the same red soreness. A vulva consultant diagnosed my LS
by sight only, although I had no signs of LS other than the red sore patches and he said it was traces that were not active. I personally think it was VA, I never had white patches or itching but who knows.The steriod cream is useful with a bad VA flareup though as it heals the labia very fast so the estrogen cream can be applied without the burning and stinging.

I find this strange Deirdre, that they can say its LS without any visible activity. Some say tissue loss and fusing is also down to VA so I am not sure also if I have it or not. I saw a dermatologist for a rash on my face and she offered to check, so it was a very quick glance and she could see no actvity. I think I should see a Vulval dermatologist because using steroid once a week will thin the skin and make it more delicate. Ive read all sorts about this condition, a mention of skin turning a white papery look. I feel on constant edge checking, it feels like an unknown invasion. Wincing at the thought of a biopsy though

[buffy26]

Thank you Ayesha, this is great. I just feel a little annoyed as I saw a consultant Gynae in January and she said you are well estrogenised and advised me to strip right back on the dosing to just two a week. It was then everything went rapidly down hill. So because things appeared to her to be well at the time, surely it must have occurred to her that I had only reached that point by the daily use of Vagifem. To be made to feel I was 'over-using' is crazy. I was also prescribed Clobaderm for LS. She was confident the tissue loss and fusing was 'likely' to be active LS, yet I had no symptoms then nor any historically. No itching or white patches. Neither GP or the hopsital even offered any Ovestin which is clearly what I needed to prevent the bright red burning tissue all around the area

Yes, of course it was the Vagifem that made you well estrogenised, that's what it does.
I was so surprised at how much the nurse at my recent review was up to date on all the latest studies and was so knowledgeable about VA(GSM), she didn't question my dose of every day Vagifem because that's what I need.

Thinking back to when I first presented with the horrific symptoms about three years ago, I was sent away three times with antibiotics even though I didn't have an infection and even worse none of the nurses knew or had heard of the condition. I eventually got diagnosed after the GP examined me for what I thought was a prolapse, but she said no, you need oestrogen down there but never told me why!

I hope the tide is turning, we will know when the instructions in the Vagifem leaflet is changed from the outdated information it contains, that will be the turning point.

Thats terrible Ayesha, at least I had a swab sample done, by both my GP and the gynae to check for thrush first. I was told I have a mild prolapse, I do wonder if I had estrogen back at the time of peri menopuase things may have been preserved/prevented,especially after being refered to an endrocrinologist for my 5 x a night time toilet trips. That doc said I may have diabetes insipidus. Brushed away the fact I was on zero estrogen on the blood results, he didnt connect the dots, and I thought Endocrinologists were hormone doctors!!  Do you use moisturiser as well as oestrogen cream or is the cream enough to keep the skin supple?

[Ayesha]

I always use a moisturiser with the Estriol cream, it makes a big difference as I find the Vagifem and Estriol are a very dry consistency.

[buffy26]

Good to know, it explains why I am starting to chafe a little

[Dierdre]

If you have LS you definately need Estriol cream for external use as part of the maintenance alongside the steroid cream when you have a flareup, this is usual practice.. LS needs to be properly diagnosed ny biopsy, this is the only way to confirm for definate as VA symptoms show the same red soreness. A vulva consultant diagnosed my LS
by sight only, although I had no signs of LS other than the red sore patches and he said it was traces that were not active. I personally think it was VA, I never had white patches or itching but who knows.The steriod cream is useful with a bad VA flareup though as it heals the labia very fast so the estrogen cream can be applied without the burning and stinging.

I find this strange Deirdre, that they can say its LS without any visible activity. Some say tissue loss and fusing is also down to VA so I am not sure also if I have it or not. I saw a dermatologist for a rash on my face and she offered to check, so it was a very quick glance and she could see no actvity. I think I should see a Vulval dermatologist because using steroid once a week will thin the skin and make it more delicate. Ive read all sorts about this condition, a mention of skin turning a white papery look. I feel on constant edge checking, it feels like an unknown invasion. Wincing at the thought of a biopsy though

I never had the biopsy and if it is LS it's under control with estriol (ovestin) externally every night, I also take vagifem every night. If i have a flare up of whatever, VA or LS it's the same symptom just red and sore, no itching, no white patches and a few days of Dermovate sorts it out. Skin never gone thin and used for years.
My tissue loss, shrinkage of labia, was gradual over years and was definitely VA, sadly before I was aware of what was happening and  knew about treatment.
I also had a prolapse a few years ago sorted with vagifem, estriol and physio.
I also use Bepanthan ointment every night, ive tried so many different moisturisers over the years but this works for me.  You'll probably get through a few moisturisers untill you find one that suits you.
I agree with Ayesha, you may need vagifem every night. I've reduced mine to 5 a night for long periods but then back to every night, you just need to be flexible and use whats needed whenever. I know that's sometimes difficult when the doctor's not allowing the dosage you need but you can buy online and OTC Gina to supplement. I know you shouldn't have to do this in a perfect world but at the moment the NHS is far from perfect.
Hopefully things will improve soon and this new statement and update of the leaflet for local estrogen will protect women in the future from suffering.

[buffy26]

Thank you Dierdre,
I feel reassured and am grateful to you for sharing all this. I will be doing the same as you, keeping on top of it and monitoring. I am on Vagifem 5 nights a week. Will see if this Blissel (Ovestin type cream) helps and continue to monitor it all. When I have my next follow up I will be able to speak from new knowledge and also experience!

[Jules]

Dierdre my shrinkage was also gradual but then a fast period. The shocking thing is, a GP commented on mine and told me it was normal with age. She could have advised me to use ovestin and it would have made such a difference.  Would doctors ignore shrinkage anywhere else in your body when there is treatment? It's like it doesn't matter, nobody can see and what do you expect when you're aging. I'm using it morning and night. I've been using vagifem nightly for 2 weeks but didn't use last night and can feel it. I think once you establish a frequency your body expects it and its hard to reduce it

[Dierdre]

I think the problem is that anything related to menopause is still not classified as an illness of any kind. It's just the change in life and a natural thing like puberty in reverse, that wasn't a bed of roses either!
Women need estrogen whether it's made by our ovariies, adrenal glands post meno or medication, some need more than others. The fact that we are now still alive after post menopause has caused this problem,  100 years ago not so much.
Any other deficiency is treated as an illness, diabetes, anaemia, thyroid etc and treatment would not be refused or reduced without a very good reason.

[Jules]

Yes that's true. And its not an illness though left untreated it can lead to it. We were given advice about puberty and are given advice about maintaining our aging vascular systems, and most things that contribute to living healthier more independently into old age specifically because there's a recognition that we are going to live longer. My GP told me she has men in their 80s asking for viagara. I'm already telling my younger female relatives

[Dierdre]

All my family know about my atrophy and  how I've struggled for years to get on top of it, male and female. It shouldn't be a problem for any of them now in the future as they are aware of this awful condition. Even my sons and grandsons know so they can be aware if this happens to their wives and partners.

[Jules]

It's not an easy subject.  Has the estrogen helped?

[Dierdre]

It has now I'm on the correct dosage, every day both Vagifem and estriol cream externally. It's took a few years to get here though as doctors were scared to prescribe more than 2 per week and vagifem only. Things improved dramatically after referral to gynae and vulva specialist. Still have flare ups but I usually know what triggers them now and double up on everything until it settles.