Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Ayesha on June 20, 2024, 09:56:58 AM
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Quotes from the Position Statement for Management of Genitourinary Syndrome of the Menopause (GSM) and the British Society for Sexual Medicine (BSSM) that members might find useful.
These are the guidelines that I will be following as I go forward with this life long condition which also gives me a voice if I come across resistance on the dosage I need to keep my VA(GSM) under control.
“Studies have shown that around 70% of women have symptoms of GSM, yet only 7% receive treatment.
Women should be offered an examination and their decision to accept it or not needs to be respected.
The clinical response to treatment with topical oestrogen is usually rapid and sustained.
Women should also be advised that the information packaged with vaginal hormone preparations is out of date and factually incorrect. This needs to be changed by the MHRA.
The dose of vaginal oestrogen is very low, for example, using 10mcg oestrogen pessaries regularly for one year is an equivalent dose to just one 1mg of oestradiol HRT tablet.
If symptoms do not improve with vaginal oestrogen, consider increasing the dose, changing preparation (and consider DHEA) or using an additional treatment such as systemic HRT or two local treatments.
The frequency of using these preparations can be increased in women who have persistent symptoms as the doses of these preparations are very low.
Vaginal oestrogens can often improve urinary symptoms, including urinary infections.
Some women use vaginal oestrogen preparations more frequently than the recommended dose to improve symptoms sufficiently, for example Vagifem alternate days instead of twice a week. It is safe to use the treatment in this way as the dose is very low.
Women should be reassured that it is safe for topical oestrogen to continue in the long term (medication should be on a repeat prescription). Women should continue to be reassured about the long- term safety of vaginal oestrogen preparations."
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This is brilliant Ayesha and so reassuring. I still worry sometimes when I'm taking a lot more than prescribed to keep this under control. The stories reported on this forum of doctors trying to limit the dose or refuse treatment adds to my doubts it's ok to do so. I won't be worrying anymore.
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Brilliant post Ayesha thank you for sharing :thankyou:
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Yeh. Thats so reassuring isnt it. Especially as Ive had to increase my dosage. If I have any problems with my prescriptions I will be referring the doc to that. I just wish we had all known this sooner then Id have started the treatment earlier and before it got to this stage.
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I am just back from my first review at my new surgery, I was all prepared for a battle but what a refreshing meeting it was to meet a wonderful nurse who was up to date on the latest findings regarding all things menopause and dosage for VA (GSM).
We were speaking the same language and I can't tell you how relieved I feel after what has been a bumpy start at my new surgery.
We can definitely be reassured reading the findings in the above report, I have to say it should empower those women who have difficulty in obtaining their treatment.
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Should make the yearly review less stressful armed with this now for those that aren't so up to date. Thanks Ayesha.
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Ah, if only those young male GP's that seem to be appearing everywhere were made to walk a mile in a menopausal, GSM suffering ladies shoes 😁
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My surgery allocates female stuff to the female GPs. One of those isn't that empathetic. She's not reached that age though yet.
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We used to have a fabulous female GP partner at our surgery. Unfortunately, she's no longer there and we have 2 male partner GP's and a couple of trainee GP's, one of which is female. I refuse to see her though as she told me I wasn't suffering with GSM but had ovarian cancer.
One of the male GP's is the best one now for female stuff. Sadly, he's a good all round doctor so it's hard to get an appointment with him.
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Thank you so much. That’s really reassuring. When I first read the leaflet in my vaginal estrogen I honestly came out in a cold sweat.
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Thanks for finding & posting that Ayesha.
I’ve messaged Emma to ask if this thread can be made a sticky with other headers so that it is not lost amongst others. Imho everyone with VA needs to know this at the outset.
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Thanks, Minusminnie. I'll post a link to this thread if I see any posts relating to issues treating VA(GSM), women can be frightened by the alarmist leaflet that comes with topical oestrogen.
From my experience yesterday, and I did have a detailed chat with the nurse, I would say they are your first port of call regarding anything menopause related as they are the ones being trained on all the latest findings and treatments.
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Thanks so much for this Ayesha. I've downloaded the statement and will keep it safe for it needed during treatment conversations.
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I am glad I posted it, Abc123, and all backed up by the nurse I saw yesterday.
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That's brilliant it's feeding through to those who can help us Ayesha. Glad to hear you have a good nurse on your side now.
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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 :(
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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.
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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.
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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 :-\
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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?
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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.
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Good to know, it explains why I am starting to chafe a little
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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.
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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!
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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
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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, ;D 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.
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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
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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.
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It's not an easy subject. Has the estrogen helped?
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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.
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Im doing the same though last time I used it alternate nights and estriol daily i had breast pain then a small bleed and the GP insisted I stop for 6 weeeks. I agreed to 4 in the end and had a scan and hysteroscopy so Im very anxious about now using nightly but I feel I need it. When I had the flare up I started using estriol mixed with moisturiser in the mornings too. I need to cut back to once a day but nightly vagifem and twice daily estriol is just about stopping anymore deterioration and shrinkage.
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Do yourself a favour!
Go back to your GP and tell him/her to read this:
https://www.menopausematters.co.uk/forum/index.php/topic,69936.msg949995.html#msg949995
And then, ask for Estring, and systemic HRT!
After it works, you will not need anything down there.
Good as new!
Do it
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One of the doctors I see was trying to insist I slow from daily Ovestin use. She said it is about time I used it only twice per week. So, I have told her I am having a dose every second night just for some peace. ::) I have actually slowed to a half dose nightly, but it suits me, and my symptoms are minor so I just can't shift from a nightly dose at this stage.
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Your doctor is totally out of date, awful to have to say that when she should know better. Use as much as needed to relieve your symptoms and to stop you from getting to the chronic stage of this disgusting condition. When you feel you can reduce your dose then so be it.
My treatment is daily, Vagifem and Estriol cream, with the blessing of a gynaecologist and my now new surgery who have been amazing and so up to date on topical HRT.