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[Kkay]

Hello all,

I've posted here several times here before; always about VA which came out of nowhere in August 2016 and turned my life upside down. I apologise for the repetition here for those of you who have seen my story before

I've been on Vagifem nightly since early February, and while I thought I had turned a corner in April and was 70-80% better, suddenly ten days ago it came back with a vengeance, for no reason that I can see. The burning is intense inside and out and I am really quite desperate.

This week I had a vaginal swab done (nothing) and 2 urine cultures (nothing). Sitting down is hell.

My endocrinologist ran a battery of tests and one came back positive, a marker for "Limited Scleroderma". I don't know to what extent it is related or causing the VA - I'm too worried and demoralised at this point to even look it up. Does anyone here have this? I know there are a number of ladies here who have auto-immune issues like me (I also have Hashimoto thyroiditis) so maybe someone has experience of this?

Any advice much appreciated.

Sadly,

KKay

[CLKD]

Hi!  I did a quite google as one does  and found this: "www.sruk.co.uk" - do have a look-see.  I can't see a connection between atrophy and scleroderma but you will be able to send an e-mail for advice and support.

Then let us know?   

[Kkay]

Thank you for the link and for the hug....
 

[CLKD]

You are welcome.  I wish that you didn't have these problems  but there is usually someone here to listen ;-).

How's the weather were you are?  ? Asia ?

[Kkay]

Hot, but I'm mostly in air conditioning. Walking is painful, so I'm mostly inside.

[Maryjane]

My gynae said The Mona Lisa Touch is proving very good for scelerderma.

I no you are having a different type of laser , don't no if it's as strong as TMLT.

[Kkay]

Oh that is good to hear MaryJane; thank you for that, about the MLT helping with scleroderma..Are you sure he/she didnt mean lichen sclerosis ? That's more common, I understand

My proceduure is apparently identical in its effects to TMLT, it just uses weaker laser strength or something..

 

 

[Maryjane]

Yes and LS .....unfortunately I no rather a lot about vaginas / vulvas and conditions....my gynae has been to a lecture in Italy with the inventor of the MLT and scelerderma was mentioned as well as LS .....it can't be used if you have LP Lichen planus.


I think that may be the difference , regards the strength of laser required for these conditions, discuss with your gynae.

[Kkay]

Thank you so much Maryjane for getting back to me...

I have another question for you.

I will need - sometime in the next 6 weeks or so - to stock up on Vagifem and all the other creams like Ovestin and moisturizers like Multi Gyn Activ that are unavailabe where I live. It would be good also to see a UK -based gyne/menopause expert, to see how I'm doing, adjust my HRT if needed and also prescribe what I need. Do you have any advice how I can go about finding a good gyne ? I know there's a list on this site, but I would prefer to women's recommendations. Does this forum allow that? Should I just post a new thread ?

Thank you for being there.

Kkay

[Maryjane]

I will message you mine ....she's a women can be seen either London or Kent.

People do put the names up , but I think it's preferred if not .

She likes the estring , she's the one who went to Italy to discuss TMLT and scelerderma.

[Maryjane]

I have just messaged youbher name

[Kkay]

Dear Maryjane

Thank you so much, that is really helpful of you and very kind.

Kkay

[Hurdity]

I think it's fine to post names of specialists - after all how else do we find out - but provided nothing derogatory is said which could be libellous. Also provided that one particular (private) specialist for example is not publicised at every opportunity to the extent it could be considered over promotion of that specialist and therefore advertising.

I would suggest that any NHS specialist could be publicised at any point - as this should be public knowledge and referral should be freely available if possible?

Hurdity x

[Maryjane]

My gynae is NHS/Private.


Miss Henderson London / Kent.

Reason I go private is because my VA is bad and causes me a lot of stress, and private buys me time to talk/ discuss.

[CLKD]

I believe that the person asking the question isn't resident in the UK?   I believe that one can register as a visitor to an area in the UK for advice and if necessary treatment.  Maybe checking with Boots to see how they dispsense prescriptions?