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[Suzi Q]

Thank you Suzi Q
I'm trying to do all the right things to help my situation and it just seems to get worse.
The practise nurse had a good look at my fanny a couple of weeks ago and said everything looked ok!!!!  AS I mentioned before, I may give the Estring a try as it gives a more constant amount to oestrogen.
I'm probably being crazy but I'm frightened of getting Vulva cancer like my mother - she had premature menopause and didn't have HRT and I expect she had very bad VA which could have caused the cancer.  DG x

DG we make choices dont we I didnt take HRT at 37 when I went over
It was at the time when HRT was BAD BAD BAD GPS werent using it not in Ozz anyway
In 2008 after 13 years of no periods  the Ovestin and mini pill Id been given instead of HRT
Stopped working in 20 mnths I watched my Private bits dissolve in to the skin I had  had what was known as an OUTIE a HUGE clttoral hood and I had very long inner labias they hung down
Id wear a pad in my cossie to hide them BUT with in 18mnths theyd shrunk beyond belief. AND the pain the burning suction the acjing feeling down there the bartholin glands swollen at the opening I couldnt sit couldnt do aythgn 24/7 it was all my fanny I was beside myself
I fond this site due to a Locum GP who lkistened to my symptoms and said I had VA
During all that time id been put on all sirts of Thrush creams I even took 3mnths of Monistat
I found this site and on Valentines day 2010 I put the 1st Vagifem in since them my life has improved beyond measure I have a normal sex life  BUT ONLY if we make love at least once a week if we dont then entering is like BARBED wire lasts a few u know what then it eases and Im fine and Im very wet inside its OUTSIDE Im dry so I tried Ovestin outside I found Id developed an allergy to it AHHHHHHHH Lat December 2012 I did a 10day reload and fabo
Its acting up again so Im doing 3 x 25 Sun Tue Thur NOW my family every one of them have died of heart attacks aLL 4 grandparents My MUM my Uncle my bother and Dad had heart attacks my Dads still aliove b ut not my Baby brother what Im saying is its choices
If I choose the very small risk in using Vagifem I know its a risk and with my family history its a larger smaller risk (Oxumoron heheh). Now Im using 25m they still do it in Ozz and if oyud gone on it even less than 2 years ago that would have been the dosage as there was no 10m
Maybe u need to up it or maybe the estering is right for you. Now Im not 100% but Ive never heard of Vulva cancer with Atrophy have you had a good talk with your GP or even Dr Currie
I know the b urning and even with Vagifem I get it and inside the whats left of my inn er labias which are almost prepubesent but I spread myself and look its blod red and wite patched around the edges but I dont have Lichens. Drink loads of Brley water use no soap on oyur fanny or your bottom wash your hair in the sink maybe do a reload for say 10 days see how it goes if it helps then when u see GP u can explain I feel ur pain OH god I know that so Chin up
Try a reload a lady on here told me to do it it took me  weeks to pluck up courage and she was right I also go to my GP every 2 years  just to check but sadly DG theres NO CURE for VA
Vagifem etc help rfeally well but theres no cure once started and me the silly sod left it too late too much damage was done before I started Vagi please see the GP try the bove if u fancy giving it a go and as for cancer u havde 2 choices sadly be in pain or not be in pain xxx

[Dancinggirl]

SuziQ - Thank you for sharing your experiences - really helpful for me.
I had thought that by taking HRT for all these years I wouldn't have VA problems - well I'm trying to deal with it now.  I have upped the amount of Vagifem I'm using and will probably try the Estring when I see the dr.
While I was on full HRT I used Multi-gyn Actigel (I'm in the UK and I think you must be in Oz so may not have this product) to keep things healthy in the vaginal area - it moisturises and keeps things acidic to prevent bacteria and thrush developing.  It worked really well for many years - I used it every night after showering - but now it just stings like mad and doesn't sooth like it used to.
I shower using unscented vegetable soap and special vaginal wash for my fanny - had to stop washing my hair when showering years ago - I wash my hair leaning over the bath so the shampoo won't reach my fanny.
I am trying to drink lots more water but it's really hard when you aren't thirsty.  I have to pee at least twice during the night on a good night (been like this since I had my kids)and if I drink anything after 6pm I'll be up 3-5 times during the night. I can easily go 3-5 hours without peeing during the day - I think my body stores up all the fluid and fills my bladder when I'm sleeping!!!!
I personally think or hope that using local oestrogen may prevent the chance of Vulva cancer, or at least it might, as things should be healthier.  Dry shrivelled skin with poor blood circulation must be a breeding ground for cancer I would have thought??!!! If I do develop the ulceration around my fanny which is the sign of cancer I will be at the doctors a.s.a.p. in the hope of catching it early.  My poor mum had a horrible time.
The burning is a little better today but I have been working and so I've been on my feet all day.  When I sit down to eat tonight the burning may start up again.  I'm lucky my hubby is really understanding.
Thank you again for your lovely support - it's really great to have feedback and advice that can offer hope.  Take care DG x

[Suzi Q]

OH your poor thing our pains that hey OURS its hard to explain
Im buirning now a bit not too bad but its there just letting me know the swine
If anyone had ever said even in 2007 oyur life wil be defined by oyur vagina good days bad days
Id have looked at them as if they are mad. YOur not the fist person on the AV site I put up in 2010 to have taken HRT for years AND still have developed Atrophy makes u think maybe it would have made no difference Id Id stuffed my face wiht HRT hehehehe
Glad youve uppped the amount Im defco doing 3 for last week and this week if it helps great
If not then I will will do a relaod in a week or so as we are off to NZ for ur 40th wedd ann
I want LOVINGGGGGGGGGGGGGGG OH and my new engament ring hehehehe.
Fingers crossed the up dose helps and see GP thats what they are there for  to help
Im glad u like me wash I do my haior over tha bath too or in the sink in the kitchen
OI dont want hat stuff all over me YUK hope todays a bit better xxxxxxxx

[Taz2]

Dancinggirl - I have to try to reassure you that developing cancer is nothing to do with "dry, shrivelled skin" It just doesn't work like that. Cancer is not a bacteria so doesn't grow from a "breeding ground".  I know from previous posts that you are worried this might happen but please try not to as you will make yourself really anxious. Maybe read up on how vulval cancer develops so that you can put your mind at rest?

Can I ask why you have stopped full HRT? I would have thought that your condition is bound to feel worse now that you are no longer using a higher amount of oestrogen. I know that vagifem alone is not enough to keep me comy - I too have stopped full  HRT - worst thing I have done in a long time!

Taz x 

[Dancinggirl]

Thanks SuziQ

Hi Taz - I was advised to take a break because my Mirena was at the end of it's life and the practise nurse I'm seeing ( who has been great) thought I should see how I was at this stage without HRT.
Surprisingly my meno symptoms - hot flushes, night sweats  etc. have not been toooo bad, really quite bearable.  To be honest, I have never liked being on HRT, I saw it as a necessary evil as I had premature meno so have been on HRT most of the last 20 years. While I was on sequi HRT I developed the dreadful periods pains I used to get when young with the withdrawal bleed - I took a break from HRT when I was 49 and persevered for 3 years hoping meno symptoms would subside.  I then tried 3 different conti HRTs but felt awful on all of them and ended up with the Mirena and Oestrogel. The Mirena was the lesser of the evils but i did get quite a bit of fatigue and over the last 18 months I got nasty stomach cramps (I assume the progesterone was running out).
I have suffered burning urethra episodes since my early 40s when I suspect my own hormones had packed up completely. Over the years, I mentioned to several doctors about the burning and dryness I was getting and none of them suggested local oestrogen!!!  I started the Vagifem before I had completely come off the full HRT on the advice of the practise nurse I'm seeing.
I'm not sure whether Utrogestan would be any better, as taken continuously the heartburn(which I get anyway) might keep me awake at night and if used vaginally it might make my, already sensitive, bladder even more over active at night (I have to pee at least twice a night!!!). If I could just take oestrogen I'd be great.
I'm pretty sure it's just extra oestrogen locally I need so this wretched low dose of Vagifem is simply not enough.  As SuziQ says, in Oz they still give the 25mg and even then she has to do extra doses.
I will possibly give full HRT a go using Oestrogel and Utrogestan but it will be my last resort.
I've just had my daughter (aged26) text me as she's worried because she has been bleeding heavily for over 7 days and has made an appointment with drs.  She's on the Pill and the bleeding is not withdrawal time!!! So many stresses in life! 
Thank you for your support everyone  DG x

[Sarah2]

Dancing girl- have you ever been assessed for vulvodynia?
You might like to google it and the support site.

Burning and pain can be for reasons other than lack of oestrogen. Vulvodynia is quite hard to diagnose but there are gynaes who specialise in it. I don't know where you live but there is a consultant in London who is an expert on vulval conditions.

Have you had any treatment or suggested treatment for your overactive bladder?  Do you have pain ( urethral) with it or is it just frequency? Have you gone down the road of diet - along with changing what you drink? Some bladders react to food - a type of allergy/intolerance- and this can cause frequency.

Does Utrogestan give you heartburn?

[Hurdity]

Hi Dancinggirl

There isn't anything I can really do or say to help but just wanted to say so sorry to hear about your continued pain and I completely understand your dilemma re HRT.

You might want to consider a low dose eg 25 mcg patch or 1 pump gel and then you could perhaps go on a longer cycle or take less progestogen - although a GP is unlikely to sanction this (the longer cycle) - but private docs do, or you could just do it yourself.  Yes it does affect my bladder used vagonally so may be the same for you, so oral use would probably be the only way for you. It might just help to try this as well as local oestrogen but it sounds like the Estring mught be the way to go if that doesn't irritate your bladder physically.

Hurdity x

[Dancinggirl]

Thank you Hurdity - if I do decide to try the oestrogen/ Utrogestan route I will probably email you for advice - I'm not ruling this out at all but at 58 I think I would like to be without HRT if I can.

Thank you Sarah2 - my pain is very localised to my urethra and my over active bladder is just at night - I can easily go 4-6 hours during the day.  I feel as though my body stores all the fluids and fills up my bladder several times over night!!!!
Following your suggestion of checking out the COB website I have cut out all the possible triggers e.g caffeine, berries etc. - I'm just drinking water and I allow myself one cup of decaffeinated tea each day. I find it difficult to drink enough during the day as I have to not drink after 6-7pm in the evening (this is on the nurses recommendation) - however I do have a few mouthfuls at bedtime. If I do drink during the evening i will be up 4-5 times instead of just twice!! I believe that an antihistamine, Atarax(as seen on the COB site), might be something that I could try - it apparently stops nocturia and makes you sleep better as well!!!!.
I will be discussing this with the dr when I see her in early March - maybe ask for referral to Urologist.
Thanks again everyone.  DG x

[Sarah2]

DG

Sorry you are suffering.

If you can go 4-6 hours during the day, are you drinking enough? Ideally you should go for a wee every 2-3 hours to keep your kidneys flushed out and drink around 1.5 litres during the day. I don't know if you have read this but the advice to people with OA bladder is not to reduce fluids but to keep drinking ( during the day) to stop urine becoming too strong and irritating, which makes it all worse. Obviously if you are not at home near a loo this is harder.

Pain is not usually an issue with over active bladder. So it may be that it's the oestrogen that you need. I found I had to use Ovestin for about a year before I found it really helped my symptoms a lot. I stopped when it got a lot better but it crept back so I'm using it more now.

 There is a condition where people have to wee more at night, to do with one of the hormones ( not sex hormones) . Atarax might help- but it tends to be more helpful for people who have allergy-based irritated bladders. There are other drugs that can work on overactive bladder because Atarax is not really for OA bladder. Vesicare is one drug that helps overactive bladder.

I'd try to keep open-minded about HRT- 58 is certainly not too old for HRT because some of us are older than that (!) and with 30 years of life left ( we hope) it's a long time to be oestrogen-deficient if it might help.

[Dancinggirl]

Sarah2  - You have made some good points.  I may not have been drinking enough but I am actively drinking much more now - it's just difficult to drink a lot when you are not thirsty!
I don't usually go as long as 6 hours, I would say that I normally pee every 3-4 hours. It's only when I'm working in the store - we don't get much of a break and the staff share the loo with the public and if there is a queue I will often give up and wait till later - I know this is bad!  A new building designed without any staff facilities - it's really appalling.
I long to have a clear 6 hours sleep without having to get up for a pee! I think nighttime OAB is called 'Nocturia'?  I expect I will need to see a Urologist for help with the bladder issues.
I think it may take some months before I gain the benefit of Vagifem.   I'm using Vagifem every other night for a while to see if it helps to speed things up. I'm going to discuss my options with my GP. I won't rule out the option of trying HRT again.  DG x