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Menopause Matters magazine ISSUE 81 out now. (Autumn issue, September 2025)

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Author Topic: Help and support for severe VA new member  (Read 7569 times)

Jbee

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Help and support for severe VA new member
« on: March 10, 2018, 04:20:42 PM »

Hi All,
I am very ill with anxiety and depression my family are on suicide watch so please bare with me this is hard. I had a uti in October and was given 3 days of ab's. it didn't clear but tests came back negative to bacteria very low white blood count blood in urine. I went for tests to see if it was anything sinister they found inflammation in the trizone. I made an appointment with the professor in London I have been on antibiotics for month.
GP I was seeing said just paracetamol and drink.
Went to another GP she gave me Pregablin for anxiety and suggested vagifem I used for 6 days and my stomach area became very swollen pressing on my bladder caused a terrible flare I stopped using. I thought it might have activated mast cells in the bladder I didn't know about VA no one said anything. I went through menopause  10 years ago I am 57 nearly. I Knew I was shrivelled but had no pain very occasionally sore used a little sudercreme.
I realised in Feb Most of my pain was in my clitoris I thought I had vulvadynia and went to see a gynae she said severe atrophy she prescribed Ovestin and said to introduce slowly on clit and as I became less sore use everywhere. I have had good success with the clit and no longer major source of pain. Pain has moved to rest of area mostly urethra and vagina bad prickles and burning
I have been weeing every 1 to 2 hours round the clock for the last 5 months and my mental health has been deterorating. GP decided to take me off Pregablin and but me on Sertraline it has been a 4 week taper and the worse time in  my life constant anxiety and dark dark thoughts still persisting family have taken holiday to look after me. I hang in with meditation cd's. The Pregablin has left me with pins and needles in my feet GP says it should go.
I can not sit at all only lie down on my back and walking is difficult. I find it difficult to see a future. In September I was fit and active rode my horses. I have lost 2 and  a half stone. I restrict my diet because I think I have IC and this has become a bit OCD  I eat the same foods each day.
I have been trying to introduce the Ovestin internally it may be something else but it seems to irritate my urethra and I have been weeing every half hour or just sitting on the toilet the burning is unreal. Bladder pain too which I don't usually have badly.
Sorry for such a sad tale and along one just needed to open up and see if there was some advice and hope.
So,sorry x
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JaneinPen

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Re: Help and support for severe VA new member
« Reply #1 on: March 10, 2018, 07:31:40 PM »

Welcome Jbee and sorry that you are feeling so low.  Some of the ladies will be along shortly with big hugs and hopefully good advice but as it is the weekend please be patient.

I had constant UTI's last year. Eventually after several tests including a cystoscopy to rule out anything sinister my urine was tested in more depth and a hard to treat bacteria was found. This was treated with a strong antibiotic (can't remember the name) and I also started on a two week load of Vagifem and once I finished the two week load I went on to three times a week. You really do need to do the two week load as it begins the work of calming everything down. Not at first but it does begin to happen which is why it states a two week load. My symptoms have really calmed down with this regime. I am wondering if you were it doing the two week load and that if you were your G.P let you give up too early.  Just a thought.

As I said I am sure other ladies will be along soon with advice. Meanwhile you are not alone
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Annie0710

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Re: Help and support for severe VA new member
« Reply #2 on: March 10, 2018, 07:47:56 PM »

Big hugs xxxx

Have you thought of maybe vagifem daily for life or ovestin plus vagifem ?

Also are you on hrt ?

I really feel for you for everything you are going through xx
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Kathleen

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Re: Help and support for severe VA new member
« Reply #3 on: March 10, 2018, 07:52:02 PM »

Hello Jbee and welcome to the forum.


I am sorry to read that you are suffering so much. Unfortunately I am not able to advise you but I'm sure more ladies will be along shortly. I did however want to add my hugs to Annie's and also agree with Herdwick that you are not alone.

Hang in there and take care.

K.
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Hurdity

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Re: Help and support for severe VA new member
« Reply #4 on: March 10, 2018, 08:22:49 PM »

Hi Jbee

 :welcomemm:

Absolutely you are not alone once you have joined this forum. I agree with what's been said about your VA - you probably need to massively increase the dose you are using as Annie suggests. Please read Maryjane's posts and maybe she will be along as she is the absolute expert on VA - also Dancinggirl and ancient runner.

Have you thought about HRT? I know it's a long time since menopause but you could still start and this could help with yo r mood enormously. Did you suffer from such severe low mood, anxiety and depression before menopause, or maybe cyclically when you had your menstrual cycle - or is it mainly since menopause and not due to particular life events? Oestrogen is such an important hormone for mood and some women suffer particularly when it is deficient. The advantage of taking HRT instead of the ADs is that you would be getting oestrogen into your system which would help with the vagnal atrophy in addtion to the local oestrogen. In between times there are vaginal moisturisers that you can use but I am not an expert on these and hopefully (maybe after the weekend when it tends to be quieter on here) one of them will be along to help soon.

Hang in there Jbee - it will get better - there are treatments available and you have taken the first step in getting even more help and support from like-minded women.

Hurdity x  :bighug:
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Dorothy

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Re: Help and support for severe VA new member
« Reply #5 on: March 10, 2018, 08:54:32 PM »

I found the Ovestin burned when I first used it and made me want to wee all the time, but once I'd been on it for a couple of weeks, it eased.  So it might be worth trying to apply further up every day and see if it is better after 2 weeks.  Mine was so bad it was hurting to walk or sit by the time I was diagnosed, and it took me days of treating outside area before I could even think about going further in.  But I did get there eventually.
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Dancinggirl

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Re: Help and support for severe VA new member
« Reply #6 on: March 10, 2018, 09:42:09 PM »

Hi and welcome MM Jbee

You are not alone with this. Urogenital atrophy can be truly ghastly and sadly not recognised by many doctors - so appropriate treatment is not always given.
To keep things under control these are my strategies:
Drink lots of water.
Avoid Caffiene, fruit juices and alcohol.
Take showers not baths and never use anything scented to wash your ‘lady bits'.
I use Vagifem 2-3 times a week.
I use vaginal moisturiser every day - SYLK or the YES products are the best - these moisturisers must not be used at the same time as local oestrogen treatments as it may block absorbtion, so if you use the oestrogen at night, use the moisturisers in the morning.
Clean really well after opening your bowels.
When the urethra starts to burn, I then have half a teaspoon of bicarbonate of soda in a glass of water 2-3 times a day for 2-4 days.
Ovestin did make my urethra burn - it's probably the fillers in the cream that does this so I prefer Vagifem.
Try taking a Nytol at night for a few nights - the over the counter one with an antihistamine - as this can calm the bladder reducing the need to pee so often. Nytol will also give you a better nights sleep and I expect you are really needing this right now.
I am sure you cannot see your life getting back to normal right now - I've been there so I know - things will get better but it will involve some simple lifestyle changes.
Keep us posted. DG x
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Maryjane

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Re: Help and support for severe VA new member
« Reply #7 on: March 11, 2018, 07:56:35 AM »

Hi 😊 so sorry you are feeling so incredibly low , been there with VA .

I assume you are seeing Prof Malone Lee ?

Here are 3 pieces about me and my VA ( I am in the need to start talking about this camp publicly ) and the experts I have spoken to of which are many now , it's almoat so common as seen to be normal , but is so hush hush and a huge shock when it happens.


https://menopausematters.co.uk/pdf/magazines/issue48.pdf



https://menopausedoctor.co.uk/news/vaginal-dryness-last-menopause-taboo/


http://www.jodivine.com/articles/womens-sexual-health/living-with-vaginal-atrophy


I have been asked to write three more but have writers VA block. I have also been on TV on a menopause programme , and admin a secret FB page for VA of which there are quite a few Prof patients.

I wrote the piece for this site early last year , and things are much improved I'm not cured never will be as VA is for life and needs constant care .

Hang in there and take one step at a time. 😊

Menopause itself can cause mental havoc , throw in VA and it's wnough to take you to the very edge of which I have been.


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Jbee

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Re: Help and support for severe VA new member
« Reply #8 on: March 12, 2018, 10:29:09 AM »

Thank you so much for your advice and good wishes it is so wonderful that you are there. Xxx
I am using the ovestine internally and will persevere and hope the irritation settles. I have brought the yes moisturiser and have applied to outside areas that are less sore it felt cool not really burnt so hoping it will be ok. So Ovestin everywhere at night yes on outside in morning. Skin on inside of labia looks sore. I think I will keep this up for some time. I feel all the time like I imagine a prolapse feels sort of pressure pain  downwards when standing I have been assured I don't but can anyone relate to this? The pressure gets worse when I need a wee all in the urethra vagina area does this sound like VA?
I would happily go on HRT systemically and will ask the doctor tomorrow. Perhaps as I am only a short way into taking the Sertraline I need to persevere because coming off one dug on to another has definitely caused the shocking low and anxiety. On Sertraline things get worse before better its a white knuckle ride. Doctor has given me amytripline to help with sleep pain.
I have had anxiety on and off but nothing like this I have never been ill like this
The amytripline and Sertraline are drying so it would be much better to be just on HRT I just have to take it slowly as I am very fragile - spent most of last night doing deep breathing with wave after wave of adrenaline and anxiety its rediculous seems to have a mind of its own.
Mary Jane I am under the professor but am a little unsure whether I have just VA or an embedded infection or both now. Symptoms started whith what felt like a typical UTI but no bacteria found the sample was very dilute and as we know the testing is not good. white bllod cell count was 150 ish so they gave 3 days of AB's it went down to 3 again very dilute sample and professor found 4 in December but as you know he feels this is significant. Inflammation was found in the trizone. Then there is the whole pelvic floor thing. Any thoughts?
The anxiety is linked to pain and  because I'm not really sure what is going on and because I am sorely needed to look after my family and I am not able. I hope to start some counselling CBT soon. I have told my younger sisters about this and told them to get on local HRT. I have ordered acti gel  too. I am so grateful for your posts thank you again.
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CLKD

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Re: Help and support for severe VA new member
« Reply #9 on: March 12, 2018, 12:13:20 PM »

What support are you getting for your mental health?  Maybe send an e-mail to your local MIND Group.  They were very helpful when I was ill in 2015.  Samaritans are also on the phone 24/7.

VA needs constant treatment initially until it settles.  Years ago the dose of Vagifemwas 25,  now it's 10.    I have had good success with Ovestin.  2 weeks 'loading' and then as necessary.  It's OK for me at every 3rd and every 5/6th night.  It's for Life.

Some ladies find that they need Sylc or similar on the outer vaginal areas.  Paractamol can ease the feeling of needing to pee.  4 me it was all day initially, I would sit on the loo with a cuppa in one hand and a glass of ice cold diluted Barley Water in the other.  It was the only way I could get relief from the intensity of needing to pee.

Let us know how you get on!
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Jbee

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Re: Help and support for severe VA new member
« Reply #10 on: March 12, 2018, 01:58:11 PM »

Hi thank you for your reply. Did you have pain with the feeling of needing a pee like you might with a uti? I am going to use the Ovestin as neede after the loading. Did you use it on the outside too? Thanks
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CLKD

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Re: Help and support for severe VA new member
« Reply #11 on: March 12, 2018, 02:23:22 PM »

The spincter really nipped as the urine flow lessened!  Enough to make me go 'oh!'.  Pain relief helps a lot.  VA treatment is for Life.  Nope.   Not on the outside which is where Slyc or similar really helps.
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helenmelon

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Re: Help and support for severe VA new member
« Reply #12 on: March 12, 2018, 03:19:53 PM »

Hi Jbee,

Just sending you a big hug 🤗 I hope you get this under control.

HRT has made a massive difference to my anxiety, it might be worth a try.

Good luck xx
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Jbee

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Re: Help and support for severe VA new member
« Reply #13 on: March 12, 2018, 08:39:10 PM »

Thank you Helen I never really thought about menopause I had my last child at 40 and I think I had my last period about 46  with only a few night sweats and mood swings -I thought it was all over but looking at the symptoms you can get I realise my estrogen must have crashed over the past few months. Thank goodness for this forum community. I didn't realise mental health was linked to hormones or that you could feel so awful.
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CLKD

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Re: Help and support for severe VA new member
« Reply #14 on: March 12, 2018, 08:40:06 PM »

 :bighug:  Jbee!    HORMONES  >:(

Some ladies find that keeping a mood/food/symptom diary useful. 
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