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[mazzy]

Hi everyone. I wonder if someone can give me any advice.

I have been very sore around my Vagina for some time. I thought that it was Thrush and so did the GP and I was given Oral Thrush treatment but it would clear. After so many months of being constantly sore, I booked an appointment with a different GP, who was an older Lady GP.

She decided to examine me more closer and take a swab.  When she examined me she said that she knew exactly what the trouble was but would take a swab anyway. She said that I had Lichen Sclerosis on my lower Vulva and prescribed a strong steroid cream that I had to use every day for 3 months, then twice a week.  She said there was no cure but it could be controlled.

After using the Steroid cream for 5 days, I was so sore and couldn't use this cream anymore as it was making it worse.  I went back to the Surgery on Monday and saw my previous GP who said that as the Steroid cream was making it worse not to use it.  I asked if she could give me something to soothe the soreness and she gave me some Vagisil and some Replens to try but also told me to carry on using Estriol every week. The swab came back clear.

My GP also said that she would refer me to the Hospital for an appointment at the Vulva Clinic.  My appointment is not until 27th February.  I have tried the Vagisil and it stung so much that I had to wash it off.  My lovelife is a nightmare.

Has anyone had this and any ideas want I can use to soothe it.  Getting desperate now.


Mazzy

[Daisydot]

Hi mazzy you could try some organic cold pressed coconut oil from Holland and Barrett just smear it on the whole area and you should get instant releif it’s antibacterial so it should help you,There’s also a very good cream called lomaherpan that you can buy from the herpes.org.uk website it’s only about £6 and it’s usually with you within 24 hours of ordering it from the shop on that site.its Mellissa balm if you check it out you’ll get more info about it it’s very soothing and healing for a number of problems not just herpes,there is absolutely no stinging when using so don’t let the lemon in it put you off it’s worth a try.it was by using a combination of these I managed to heal up some pretty nasty cuts and sores down there,nothing otc or from gp helped.good luck xx

[mazzy]

Thanks Daisydot.

The GP said that they don't know what causes it but I too had a tear down there about 18 months ago which took a long time to heal and I wonder if that is what triggered it. It I making me so miserable.  Will try Coconut oil.  Willing to try anything to get some relief.

Mazzy x

[Daisydot]

If you keep the jar at room temp it's runny if you store in fridge it solidifies I used to make pessaries to use internally and smear it outside on vaginal lips as well I had paper cuts and two big sores,I think I caused a lot of it myself after thrush caused by numerous antibiotics had me scratching like mad plus I didn't realise or know I had vaginal atrophy so these things let me calm my undercarriage down so that I could then start on the oesrogen cream I got from practice nurse and that really helped with the va and urinary symptoms and touch wood I now have a relatively healthy looking Vagina,I'm now on vagifem which is little blue tablets inside a disposable applicator that I find much better to use the internal cream was so messy but I still smear the oestrogen cream around my outside bits it all helps but takes time you have to be patient but once you start to get some pain releif you'll be able to decide on your next course of action to prevent it happening again,gps are really not much help.good luck xx

[mazzy]

Thank you so much Daisydot xx

[Daisydot]

Your welcome mazzy nite xx

[Joaniepat]

Lichen sclerosus is usually only diagnosed after biopsy. Perhaps it is vaginal atrophy, and your GP is right to stop the steroid which certainly would make things worse. Regarding the estriol, is this Ovestin and what did they tell you to do with it? Do you take any systemic HRT?
JP x

[mazzy]

Hi JP

Yes it is Ovestin, which I use weekly.  I was prescribed this a couple of years ago because I felt a bit ****ily down below. Cannot take full HRT for health risks.  Eighteen months ago I tore my Perineum and although it healed have been permenantly sore ever since.  I now have white patches on the one side, which my GP said is Lichen Sclerosis.  I now have an appointment at the Vulva Cinic so hoping they can confirm this.

I have been so sore.  I wasn't this sore after childbirth and at the moment my sex life is zero, which I am missing.

Mazzy x

[Joaniepat]

Hi Mazzy,

Sorry to hear you are in so much pain, your appointment on 27 Feb must seem a long way off at the moment. I hope Daisydot's suggestion of coconut oil gives some relief. You could also try using Hydromol ointment as a barrier. It's a bit like applying lard but it does soften up.

I have VA but it was originally treated as possibly being lichen sclerosus. This was at the vulval clinic at the Chelsea and Westminster. I had no white patches and no itching, just soreness and slight changes to the vulval architecture. The steroid ointment of course didn't achieve anything. However, the tip about using a barrier such as Hydromol was useful. It provides a bit of lubrication and protects the area from contact with urine, which can be stingy.

I would think you would also find treatment for VA beneficial alongside any treatment for lichen sclerosus if the diagnosis of that is confirmed. Dermatologists aren't always good at recognizing VA in my experience! Vagifem might be the way to go rather than Ovestin, or possibly the Estring, while you are very sore. I know from experience that rubbing anything in is agony.

Perhaps someone else will be along who has some more useful suggestions. Sorry I can't offer any more ideas.

JP x

[mazzy]

Hi JP.
Thanks for the suggestions.
I started using Replens MD yesterday and actually woke up this morning feeling a lot more comfortable. The GP told me to use it every 3 days, so next dose is Wednesday.

While I have been so sore I took a break from using the Estriol for about 8 weeks and started using it again on Saturday night. This afternoon I was quite alarmed as I noticed that I had a small amount of blood on my panty liner.  I haven't had a period now for 7 year's.  I am wondering if this was caused by using it again, as it states on the side effects leaflet that it can cause spotting. It has stopped now but will keep an eye on it.

Did you have to have a Biopsy at the Vulval Clinic ?


Mazzyx

[Joaniepat]

Hi Mazzy,

So glad you're feeling a bit more comfortable.  No, I didn't have a biopsy as I convinced the dermatologist that what I really had was VA and she transferred me to the menopause clinic at the same hospital. I don't think she was all that confident of the lichen sclerosus diagnosis anyway.

The slight slight bleeding you have experienced is typical of VA as the tissues become fragile and small splits may occur. Judging by what I've read on this forum it seems to be quite a common symptom, but if it gets any worse perhaps your GP could check it out.

I've never used Replens, only Sylk and the Yes products. Great that it's working for you as any relief must be so welcome. Must admit though that I use a vaginal moisturiser daily, don't think I could manage without for 3 days!

JP x

[racjen]

I have lichen sclerosis - I was very lucky that my GP recognised it immediately when I went to her thinking it was persistent thrush. I was referred pretty quickly to a vulval clinic where they did a biopsy (bit unpleasant, take someone with you for reassurance) and it was confirmed immediately. If it is LS the only real treatment is steroid cream, but it does work really well. Every day sounds like a lot, I only need to use it once a week at most and often a lot less, but of course until you know for sure it's probably better to lay off. I know a lot of women swear by coconut oil and the other one I've heard mentioned is emu oil. Haven't used either myself as find the steroid enough. Also don't use soap on your vulva, get some emollient washing cream, and only wear cotton knickers. If it does turn out to be LS it's a bit alarming at first but it really doesn't need to be - I was diagnosed 6 years ago now, and with proper treatment it's been no more than a minor irritation.

[racjen]

Also I should mention that the tearing of the perineal skin and the white patches are both classic signs of LS - it thins the skin  making it much more vulnerable to tearing and scarring. And the itching can be unbearable, especially at night. Good luck, I hope you get it sorted out very soon.

[Alpen]

I too have Lichen Sclerosis and Planis, my vulva area started to fuse together so had surgery 6 months ago, think it's started to fuse again. Seems like never getting to the bottom of this. Using Dermovate which most times is ok, but would rather use some kind of hormone cream, Estriol but my gynae told me not to use it. Anything for a bit of comfort  Any recommendations would be greatly appreciated.

[Kwebst]

Hiya
I have a friend with LS. She has to be extremely careful about any shampoo, soaps and washing powder she uses and can no longer use any type of tampons at all. She has had surgery twice and both times it has come back. I believe stress makes it much worse. I know she uses dermovate too.
Real shame. 😞