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Lichen Sclerosus - positive outcomes please!

4 replies

Primrose356 · 03/04/2025 07:25

Lichen sclerosus- does anyone else have this condition? Going off all the other posts I'm guessing yes. I have just been diagnosed via biopsy with this, and I am absolutely terrified. I have researched online and it seems horrific. I have seen two different gynecologists. The first told me to use steroid once a day for 2 weeks then twice a week till symptoms go. Then when I have a flare up. He said it was mild and not to worry. Then on my next app, I saw a different consultant who told me to use steroid 3 times per week for life. Although, he never even examined me to check how treatment was going? Also, he said to go and enjoy myself because its only going to get worse, he said the steroid won't stop it progressing and in 5, 10, 20 years time it will be much worse. Then he said if you think it's bad now wait until menopause! (I mean I'm verging on a breakdown by this point.) I then told him I was panicking now. Only to be told, well why do that your blood pressure will go up and you could get diabetes! Then it was bye and come back in a year. Anyway, I am wanting to hear from anyone who has successfully treated this disease especially for a number of years. I feel so depressed, can't see how to pull my self out of this...I have been following Jill Krapf online, as she seems knowledgeable. Just want it to go away....

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Boiledeggandtoast · 03/04/2025 08:27

I'm sorry to hear about your situation and particularly the dreadful way that you were treated by the second gynaecologist. I don't have any personal experience, but this was discussed on Radio 4's Inside Health programme yesterday and they gave a much more hopeful prognosis for treatment, especially if started early. Link here, starting at just after 19 minutes in:

https://www.bbc.co.uk/sounds/play/m0029hlk

Good luck and sending you best wishes.

Inside Health - Assisted dying: How can we be certain someone wants to die? - BBC Sounds

James Gallagher and the panel discuss the safeguarding implications of the proposed bill

https://www.bbc.co.uk/sounds/play/m0029hlk

MementoMountain · 03/04/2025 08:30

That's odd. I had it, treated it with steroid cream, was prepared to do so again if it flared up. It hasn't (yet, I suppose) and nobody came over all doom and gloom about it!

Enterthewolves · 03/04/2025 08:42

Second bloke was an arsehole! I have it, use steroids as and when needed for a week/few days. It is largely under control and does not impact my life and I am menopausal.

Primrose356 · 03/04/2025 13:00

I appreciate the comments and an insight into your experiences. I've listened to the link, and it seems there are varying degrees of this condition, and it is good to hear that it seems to be treatable and manageable. At least there is some hope, even if I don't feel it. I have read that it needs a maintenance steroid of at least twice weekly for life to control it. Honestly, I feel so ill with it all after my appointment. I'm using the steroid and will see how it goes. There should be more awareness of this disease, its shocking that there is so little research put into it.

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