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Author Topic: Vaginal Atrophy and auto immune disorders  (Read 1642 times)

Grace77

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Vaginal Atrophy and auto immune disorders
« on: August 01, 2019, 05:54:39 PM »

 Hi Lovely Ladies.

My first time at posting but regularly read posts on Menopause Matters.

Ive not had a period for nearly 17 months and 12 months ago experienced the awful and debilitating vaginal atrophy.

I have lupus sle and sjogrens syndrome.

After having investigation for kidney stones and a camera into my bladder. It was a male urology consultant who diagnosed me with vaginal atrophy which had been exacerbated by my sjogrens syndrome which also causes dryness.

Last Dec early hours in the morning I physically struggled into a Women's hospital A&E clinic and burst into tears. I could hardly walk or sit down and even wearing underwear hurt.

When she examined me she said I was red raw. All tests were taken and came back negative.

I was given Estriol cream to use.

I was initially told to use it after the initial 14 days twice a week. But because mine was so severe she said it could take months to settle and I was also given steroid cream to use.

Thankfully by Feb/March I got some relief no more burning, no more cystitis or uti.

However the last couple of months I would experience days were the 2 x weekly dose wasn't enough and having read this site I was aware that I could increase the dose.  This I am starting to do this week.

I still keep a record of when my period should have been due to keep.an eye on my menopausal symptoms.  I am supposed to be due on tomorrow. But day 11 of my cycle my dryness starts? Anyone else noticed This?

The last 10 days the burning has returned with a vengeance.  I'm on antibiotics for a uti which I got after having a colonoscopy. So this was expected.

It's unbearable.

I've started to use the steroid again because I am a bit red.

Can I ask does vaginal atrophy have flares?

I'm currently using Estriol cream do I have to stay with this or can I just swap over to Vagifem or do I have to do the 14 day with that first?

Is it just me or is anybody else reduced to tears due to the sheer he'll of it?

Ps I've still got 2 days antibiotics left to take. This started prior to me having the colonoscopy so I don't think this is thrush.  I have no itching but will keep an eye to it.

I have no sex life as I am so sore inside and out. Husband understanding.

I'm not. At 47 yrs old is this it?

Sorry for the rambling x
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dahliagirl

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  • Posts: 1523
Re: Vaginal Atrophy and auto immune disorders
« Reply #1 on: August 01, 2019, 07:19:28 PM »

I have never got it down to twice weekly and I haven't had such bad symptoms as you have.

Vagifem works the same - you do a 2 week load, then twice weekly and it is an equivalent dose (different kind of oestrogen and not in cream form).  I read on some sites for prescription guidelines to reduce to alternate days for two weeks after the loading.  Vagifem used to come in a 24mg form instead of just the 10 that we have now.

I have been on vagifem for about 4 years now and it does get better once you have a good stable dose, but there are always little wobbles.  My original prescription allowed double the dose if necessary (I think it was the really good, now retired woman GP who sorted it that out at some time, probably when the 25mg stopped being produced) so I have used that the make sure I can get enough prescribed.

Hopfully Maryjane will be along - she has written a really good book for sufferers.  :bighug:
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Dierdre

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  • Posts: 1237
Re: Vaginal Atrophy and auto immune disorders
« Reply #2 on: August 01, 2019, 08:37:06 PM »

Sometimes you need to do the 14 day reload again to get on top of things and then I'd go to every other night. You may need more now as your oestrogen  levels decline or perhaps ask for vagifem aswell. I use vagifem 5 times a week and Ovestin every night for the outside and still get flare ups sometimes and need steroid cream.  Use moisturisers regularly, YES WB is good. This is manageable if you are getting enough medication, twice a week is probably not enough now.
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dahliagirl

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  • Posts: 1523
Re: Vaginal Atrophy and auto immune disorders
« Reply #3 on: August 01, 2019, 08:54:04 PM »

I have also seen instruction for the cream - to use half as much, twice as often - apply using finger, swishing round inside as far as it goes and outside.

I can't remember who this was - someone like Louise Newsome?
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Katejo

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  • Posts: 2148
Re: Vaginal Atrophy and auto immune disorders
« Reply #4 on: August 01, 2019, 09:16:17 PM »

Hi Lovely Ladies.

My first time at posting but regularly read posts on Menopause Matters.

Ive not had a period for nearly 17 months and 12 months ago experienced the awful and debilitating vaginal atrophy.

I have lupus sle and sjogrens syndrome.

After having investigation for kidney stones and a camera into my bladder. It was a male urology consultant who diagnosed me with vaginal atrophy which had been exacerbated by my sjogrens syndrome which also causes dryness.

Last Dec early hours in the morning I physically struggled into a Women's hospital A&E clinic and burst into tears. I could hardly walk or sit down and even wearing underwear hurt.

When she examined me she said I was red raw. All tests were taken and came back negative.

I was given Estriol cream to use.

I was initially told to use it after the initial 14 days twice a week. But because mine was so severe she said it could take months to settle and I was also given steroid cream to use.

Thankfully by Feb/March I got some relief no more burning, no more cystitis or uti.

However the last couple of months I would experience days were the 2 x weekly dose wasn't enough and having read this site I was aware that I could increase the dose.  This I am starting to do this week.

I still keep a record of when my period should have been due to keep.an eye on my menopausal symptoms.  I am supposed to be due on tomorrow. But day 11 of my cycle my dryness starts? Anyone else noticed This?

The last 10 days the burning has returned with a vengeance.  I'm on antibiotics for a uti which I got after having a colonoscopy. So this was expected.

It's unbearable.

I've started to use the steroid again because I am a bit red.

Can I ask does vaginal atrophy have flares?

I'm currently using Estriol cream do I have to stay with this or can I just swap over to Vagifem or do I have to do the 14 day with that first?

Is it just me or is anybody else reduced to tears due to the sheer he'll of it?

Ps I've still got 2 days antibiotics left to take. This started prior to me having the colonoscopy so I don't think this is thrush.  I have no itching but will keep an eye to it.

I have no sex life as I am so sore inside and out. Husband understanding.

I'm not. At 47 yrs old is this it?

Sorry for the rambling x
  I have been using Vagifem since last September  and also found that I needed it most days. My symptoms have improved a lot. More recently I have reduced to about 3 a week but only because I am using Evorel Conti patches too.
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Grace77

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Re: Vaginal Atrophy and auto immune disorders
« Reply #5 on: August 02, 2019, 10:48:32 AM »

Thanks ladies for your responses.

I'm going to start to use the Estriol cream like you all suggested and see if this improves.

I am also going to see my GP  :-\ if I.make the appointment now then that is 4 weeks waiting time, to discuss vagifem and use the 2 together.

Also I just want to check if I am doing this right as the cream did not come with any loading instructions.

Do you fill the applicator right up to the stripe indentations on the applicator?

I haven't and maybe I am not giving myself the full treatment dose.

Thanks in Advance and again thanks for your assistance.
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