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Author Topic: GSM (VA) When were you dx'ed?  (Read 11732 times)

Whatsupwiththis

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GSM (VA) When were you dx'ed?
« on: December 01, 2021, 03:13:11 PM »

Never heard of GSM or VA or VVA until, at the age of 68, I started to suffer from irritated urethra, UTI after UTI,  bladder pain and skin splitting.  I have what?????  What is that?  Now here we all are having to shove all this stuff up our vagina just to stay 'somewhat comfortable. 
What were your experiences?  What age were you dx'ed?  Have you found a good regime for comfort? 
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Haydo

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Re: GSM (VA) When were you dx'ed?
« Reply #1 on: December 01, 2021, 03:51:04 PM »

Like you Whatsupwiththis I started suffering with UTIs, soreness, splitting etc at the age of 63.  This all started during the first lockdown Spring 2020,  so I was unable to see a doctor.  I was prescribed antibiotics (4 lots one after another!), cream/pessaries for thrush.  I eventually got to see a doctor in August (after having a meltdown on the phone) when I was told I had VA and it was the worst case she’d ever seen!!  What is VA?    Hello! 

Prescribed estriol cream to use internally, which gave me horrendous headaches and stomach cramps.  Switched to vagifem but still very sore and splitting externally.  Prescribed various creams and ointments which did nothing, just made things worse.  I tried using Yes, Sylk and all manner of things which I purchased myself, which did no good whatsoever, just irritated me.   Eventually got to see a gynaecologist in July this year who prescribed ovestin externally as well as the vagifem, and also dermovate to use as and when necessary.  This has helped.   I have also been referred to a vulval dermatologist but am still waiting for that. 

I now have a regime with my vagifem and ovestin, and I also use Olive & Bee, which is the only moisturiser I have found that doesn’t irritate me.  I also take omega 7.  Overall, things are much better than they were but I still have days when I am very irritated and burning, but if I think back a year I could hardly walk and was in so much pain I didn’t know what to do with myself.  I no longer wear trousers and for the majority of the time go without underwear, which is a bit chilly this weather!   I also have a prolapse which doesn’t help matters, and I am definitely more aware of it on the days I am sore.   What a saga!   
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CLKD

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Re: GSM (VA) When were you dx'ed?
« Reply #2 on: December 01, 2021, 04:01:58 PM »

Well.  I think that my atrophy began during my menstruating years as my red bleed would stop - I would have a day of brown bleed with intense itching high up for 24 hours. 

When I reached early 60s I began with a few irritated urine infection-type symptoms; 3 were treated with ABs, no samples were sent to a Lab..  This was probably 2/3 attacks a year.  The 4th episode a sample was sent away, the result was negative at which time my GP became involved and immediately prescribed treatment. Job done. 

No one should be diagnosed with a urine infection without a sample being sent to a Lab. for culturing.  Otherwise ABs are given out like sweeties.  Although they certainly eased symptoms it wasn't getting to the basis of the lack of oestrogen.

I use 'ovestin' successfully.  As with eating when hungry, if my vagina irritates then appropriate treatment is, for me, necessary. 

Haydo - R U going to seek treatment for the prolapse?
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Haydo

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Re: GSM (VA) When were you dx'ed?
« Reply #3 on: December 01, 2021, 04:29:31 PM »

I saw the gynaecologist primarily for the prolapse.  I was offered a repair job if I wanted one but, quite honestly, the thought of having an operation with my soreness was too much to think about.  I have improved things with exercises, following seeing a pelvic floor physiotherapist privately, and I would also prefer to try a pessary ring before going down the operation route.  Once again, I don’t want one fitted until all of my soreness and irritation is resolved, as knowing me I would be bound to react to it!    The gynaecologist said she quite understood and didn’t blame me,  and hence being referred to a vulval dermatologist.  I definitely want to avoid an operation if I can.
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CLKD

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Re: GSM (VA) When were you dx'ed?
« Reply #4 on: December 01, 2021, 04:41:49 PM »

You seem on the right track!  Tnx for the update.
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Gracie

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Re: GSM (VA) When were you dx'ed?
« Reply #5 on: December 01, 2021, 05:28:24 PM »

At 72 years my symptoms started in May. I thought I had a prolapse because it was painful to sit down and a feeling of the worst burning ever. I had a good menopause using HRT for about five years during my fifties.
To cut a long story short I was eventually examined by my gynae doctor who told me that I had no estrogen left would I like some.  Stupid me who thought I knew best said I would try the moisturisers that were advertised for mature ladies  ::)

A week later symptoms were getting so bad I got straight back to the doctors to get a prescription and was prescribed Vagifem. A few weeks on it was obvious the dosage was not enough, spoke to the doctor again and she told me to use it every day.

To me it was the shock and anger of developing a condition called VA that at 72 I had never heard of, why!! 
It takes a very long time for Vagifem to finally take effect so a lot of patience is needed, I am getting there slowly but surely.
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CLKD

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Re: GSM (VA) When were you dx'ed?
« Reply #6 on: December 01, 2021, 06:09:40 PM »

Can U imagine all those ladies in care homes/hopsitals that don't get treatment that they may have been using, because no one thinks to ask: or don't get treated because of embarrassment and lack of knowledge by the staff  :'(
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Whatsupwiththis

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Re: GSM (VA) When were you dx'ed?
« Reply #7 on: December 01, 2021, 06:38:17 PM »

Exactly CLKD.  That worries quite a few of us 'almost there but don't want to admit it'  group and whether aides in Personal Care Homes will be able to insert.  It needs to be addressed. 
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Haydo

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Re: GSM (VA) When were you dx'ed?
« Reply #8 on: December 01, 2021, 08:43:20 PM »

It is possible to make an advance statement of wishes (you can do it yourself) and put it with your papers or give a copy to a family member, who can then ensure that if you were to go into care your wishes and needs are dealt with.  I did this with my mother when she was first diagnosed with dementia.  It can include such relatively minor things as preferring a cup and saucer to a mug,  it can also be very specific with regard to treatment for any conditions.  It is not legally binding but anyone who is involved in your care should take it into account.  My mother has passed on now, but when she went into a care home her wishes and needs were known about and she was given the treatment she needed.  I do know someone who works in a care home and she has told me she does administer vaginal treatments to elderly ladies. 
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CLKD

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Re: GSM (VA) When were you dx'ed?
« Reply #9 on: December 01, 2021, 10:00:02 PM »

Tnx that's very interesting .
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Whatsupwiththis

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Re: GSM (VA) When were you dx'ed?
« Reply #10 on: December 01, 2021, 10:13:03 PM »

Thx for that Haydo.  I will be sure to specify when the time comes. 
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Kathleen

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Re: GSM (VA) When were you dx'ed?
« Reply #11 on: December 02, 2021, 10:19:00 AM »

Hello ladies.

A friend of mine developed a prolapse and had a ring fitted,  under local anaesthetic in hospital I think. Unfortunately this ring came out while she was urinating so it was replaced by a larger one. She has been told that she needs a hysterectomy but there will be a long wait. 
 I got the impression that the tissue that is hanging down is her womb and this is causing the irritation. If so when her womb is removed the soreness etc should resolve.

Take care ladies.

K.
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JeanGenie

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Re: GSM (VA) When were you dx'ed?
« Reply #12 on: December 04, 2021, 01:20:19 AM »

I was diagnosed with VA five years ago at age 57. I was already on HRT and the only symptom of VA was some post menopausal vaginal bleeding. The surgeon who performed a hysteroscopy said my cervix was red raw. At that time I had been celibate for a good few years so didn't experience painful intercourse or any of the other painful symptoms. I was prescribed Vagifem ....two week load and then twice weekly. I remained problem free until June of this year. I had injured my back and was unable to insert the Vagifem for ten weeks or so. I woke up one morning with painful urination, and a horrible burning vulva pain. I managed to get a face to face appointment with the GP and came out with a prescription for anti-b's, thrush treatment and Dermovate for suspected Lichen Sclerosus. To be hit with all that at once as well as my back problems was awful. I had received my covid vaccine just two days before everything hit me at once and I wondered whether it was the vaccine or the ten weeks absence of vagifem. Fast forward to November and the VA was in an awful flare. More vaginal bleeding and also a constant burning. I could barely walk or sit and had one bout of UTI and thrush after another.
I saw the GP again and she could barely examine me as the whole area was so inflamed. I was referred for a cystoscopy and kidney ultrasound which was normal and was seen by a gynae consultant who said my womb lining was normal and I didn't have lichen sclerosus. He didn't mention VA and to be honest up until then I didn't realise how debilitating VA is. The nurse at the gynae clinic gave me a tube of estriol to try alongside the vagifem . Once I started using the estriol as advised by a lady on here ( many many thanks to CLKD) the difference is like night and day. After a few weeks all my symptoms have practically gone. I know it's early days but the relief is immeasurable! Especially after five months of hell. I've developed a regime that works for me. I use E45 wash on the vulval/anal area once a day only.....I think beforehand I was washing too often which dried out the area even more. Every time I pee I rinse the area with a jug of tepid water and gently pat dry...definitely no harsh rubbing. I then apply a dab of Boots own brand lubricating jelly which keeps me comfortable. I did a reload of Vagifem and put a pea sized amount of the estriol around the vaginal opening and labia for two weeks. I'm now using the Vagifem 3/4 nights a week and the estriol on the other nights. So far this seems to be working and I'm pain free.
After my years of celibacy I'm now in a relationship with a lovely, very patient man who has been so understanding. All these things started just a few weeks after we had met and he didn't run a mile! I think he's a keeper.  :)  To any ladies suffering I so empathise. I would advise anyone to join this marvellous forum ....there is a wealth of knowledgeable and helpful ladies on here. Be persistent , and armed with what you learn on here don't be fobbed off by the doctor.....there are treatments that can help . Sometimes it's a case of trial and error and giving different treatments a good go as unfortunately there's no quick cure.

Jean
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Postmeno3

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Re: GSM (VA) When were you dx'ed?
« Reply #13 on: December 04, 2021, 08:23:02 AM »

What a message of hope you have given everyone, Jean. Thank you for your words of encouragement and support. We all need to hear these from time to time. Indeed, your lovely new relationship sounds like the icing on the cake. So happy for you!
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Gracie

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Re: GSM (VA) When were you dx'ed?
« Reply #14 on: December 04, 2021, 12:23:48 PM »

Jean  They say VA is a chronic condition and my goodness you have been through the worst of it, that is a lot of suffering you have gone through but so happy that you are over the worst of it.
Your post will help a lot of women that have yet to experience this awful condition, thanks for sharing your story.
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