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[FranJF]

I'm new to this site so apologies if I'm posting in the wrong place.  I need advice from other suffers of this horrific condition who can perhaps help.
A little bit of history about me. I'm 66 so at least 15 years now since my menopause.
My symptoms of vaginal atrophy started after having my first ever UTI in May. I passed blood in my urine for 9 hours when this started and my consultant advised that this blood was my bladder lining. Since May I have suffered with pretty horrific urinary symptoms and was actually housebound for May and June because I was needing to pee every 10 minutes.
I'm currently having bladder installations as I was advised these would help...they haven't!
I have now seen a gynaecologist as well because of extreme vaginal soreness and dryness and have been told I have 'quite advanced vaginal atrophy, or GSM as its now called.
So, I've been using Estriol vaginal cream for 3 months with very little improvement so am now into almost 1 month of trying Vagifem pessaries. My symptoms are a tiny bit better but my life is  still severely limited ie. No cycling, long walks,  or road trips. 
Booking a holiday or having sex seems like something that's never going to happen again.
It's worth mentioning that I've had a CT due to the bleeding which thankfully showed nothing sinister. I've also had a cystoscopy which was also OK.
I'd really like to hear from others who are going through this as I'm feeling pretty desperate for help. Thanks in advance.

[Minusminnie]

Hi Fran
When you mention one month using Vagifem pessaries how are you using them ?
Have you been advised to do a 2 week loading followed by 2 times a week ? If so this very likely not enough for you especially as your GSM has been described as advanced.
You may need to use Vagifem each night & give it 3 months before deciding if you can reduce it.

Maybe not the cycling due to pressure on the area but you can get back to walks & road trips.

If you do a search there are many threads on Vaginal atrophy more likely to be found searching under that name given that GSM is a relatively new name.

Others will be along to advise.

[Suziemc]

Ouch! And, sadly, you're not alone so you'll get lots of words of advice in the forum.

I'm very fortunate in that my GSM isn't too bad and is 'controlled' by using vagifem 3 times a week.  One of my friends has it far more severely than me and she found that the inside of her vagina was so dry that the vagifem pessaries had no moisture to help them stick/dissolve, she found that smearing a little cream on them before insertion really helped her (think it was estriol that she uses). Could be worth you trying the same.

Hope you find relief soon

Suzie

[karenlw]

I'm 61, approaching 20 years post-meno and have been having yellow/light brown spotting for several years which is to be investigated.  In the meantime, I also have moderate VA/GSM with soreness, burning and bladder symptoms.  I started using Estriol (externally only) about 3 weeks ago and have a further GP appointment early next year to include an examination (too sore and raw at first app't) then probable referral to check there is no endometrial cancer.

I've found the Estriol has helped a little.  I'm no longer nipping to the loo several times per hour which means I can go outdoors and on trips (albeit with pee bottle!) and the soreness has reduced a little although I am still nowhere near the stage of being able to undergo any sort of physical examination or have the needed internal ultrasound.   

VA/GSM can feel miserable and isolating so I hope you find some relief.

[CLKD]

R U using this every night FranFJ?  If necessary we can use it every night for ever.  Sometimes ladies manage symptoms with insertion a few times a week, if oestrogen levels drop the body may continue to become dry = niggling symptoms.  So a re-load of every night is required.

It's Trial and Error for each of us, finding a regime then sticking with it is important. 

Vaginal Atrophy can mimic urine infection-type symptoms really really and whilst anti-biotic therapy will help as they act as an anti-inflammatory , they won't help with oestrogen replacement.  I also swallow a couple of Nurofen when symptoms become troublesome to help with the nip as urine flow shuts off.

There are also moisturisers : Sylc or Yes : I use estriol/ovestin internally via an applicator and smear a little of the product around the outer area to keep it moist and less itchy, or KY Jelly.

[FranJF]

Thank you Ladies for your helpful replies so far. I think I need to up the dose as I'm only using it as directed..loading for the 2 weeks and then twice each week.
I do use YES moisturiser which helps a bit for the soreness but the frequent need to pee, especially during the night is exhausting.
Trying to stay positive and now knowing others understand really helps.

[Minusminnie]

Several years ago Fran Vagifem was a 25mcg pessary not a 10 mcg one.
The loading advice was the same 2 weeks followed by twice a week which many were ok with but you can see the difference between then and now in overall mcg administered weekly on that basis.

The 10mcg pessary does give you more flexibility to find what weekly level suits you.

You can buy Gina in Boots which is the equivalent to Vagifem and made by the same manufacturer but your GP ought to prescribe more Vagifem for you.

[CLKD]

Get it sorted B4 the Festivities begin or you'll be in a muddle.  If U can buy GINA as well as a back up, do so though BOOTS can be funny with their queries.

[Dierdre]

Hi FranJF, definately use the vagifem every night until you feel comfortable and only then reduce if you feel it's too much. Use the cream  as well liberally all around the vulva and  around the urethra  every night to help the bladder. I use both every night.

[Ayesha]

The only way I have been able to keep my symptoms at bay is to use treatment every day. My regime is Vagifem daily plus a smear of Estriol cream and Yes moisturiser twice daily. You can always reduce once symptoms are under control, although after five years I have never been able to do so but then again I am not on systemic HRT and I expect that's why I need extra topical treatment.
My surgery is happy for me to carry on like this but if you have to fight for extra treatment you can buy it yourself without problems as you are over 50, either online or at Boots, their Estriol cream is sold under the name Ovesse.

This link is very helpful, lots of invaluable information.
https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf