horrible heatwave

Hi Samantha.

Good to know that coconut oil and aloe vera gel helped so quickly. You appear to be on the right track. Those two together definitely does the trick for me as well, although I use both externally. I have even noticed that apart from helping with the itch, it even brings the pink colour back to the skin, little by little. The ladies on this forum suggests that we use 100% aloe vera gel, but in my area I only managed to find 97%, but it still works. The forum also suggests that we use Manuka Honey UMF15+. It has huge medicinal and healing properties for the skin. Might be a good idea to add that to your regime and use tiny bits on a cotton bud to put on before going to bed at night. Keep it up. I am so happy for you that the itch is gone. Take care.

Hi,

i started two months ago and used aloe Vera gel external for a month, it didn't make much of a difference for me, so switched to the coconut oil one month ago, not sure if it's making a difference as three days ago I had awful itch/burning and was very red and sore. I too can't get 100% aloe Vera gel and mines also about 97%, but as said I don't know if it's helping me.

when I get back to Kuwait I will try and get manuka honey and see how that goes. For sure my coconut oil will be liquid by then!

thanks and take care x

Hi Samantha.

So sorry to hear about the flare-up. Good luck with the manuka honey. Worst thing about LS/LP...one learns by trial and error and what works for one persons does not work for the other. Everything can be oh so fine and suddenly a flare up! I sometimes try zinc ointment when it becomes so red and sore and it helps. I have also noticed that the LS flare up when there is too much moisture down there, with the result I cannot bath, but have to shower. Perhaps yours does not want excessive moisture either? So try putting on the coconut oil, leave for a few minutes and then gently pat it dry (ish). I cannot use a panty-liner either cos it still stay moist, so I put a white tissue over the coconut oil and then a cotton panty before going to bed. I can only comment on what works for me and hope that it can work for you too. Take care and stay strong.

Incontinence pads keep you dry where liners don't tend to do the job so well.  One is designed for moisture the other for thicker liquid.  Also be careful of deodorants in the liners.  I have found the pads do not irritate where the liners do.  I think pads are designed for women who are likely to be sensitive and sore from being wet.

Hi,

thats a a good idea to try, thanks! Yes maybe mine doesn't like moist environment! Living in a hot climate like you it's quite hard to stay dry! I'll try your suggestions as I hadn't thought of that!

im in with the vulva dermatologist tomorrow so let's see. Have to admit, ive been pretty much great today, only remembered I had alas 2x!

take care x

Hi Samantha,

I have tried aloe vera in the past, but it seemed quite sticky which put me off.  I do believe in coconut oil though and Emu Oil, although it is inconvenient because it has to be kept in the fridge.  I wake up at 4 every morning, but it may be the birds.  I feed them and have far too many unwelcome pigeons turning up in my garden!  They make such a racket first thing!!

So pleased that things are improving for you and thank you for replying.

Thanks Chrisy.

Will most definitely try the incontinence pads, as the liners irritate badly.

Take care.

Hi Samantha

Good luck with vulva derm tomorrow (today?) I was with my Derm on Tues and she wants to take me off Dermovate as she says it should not be a long-term solution. Had some blood samples taken to check if liver, kidneys etc etc is functioning well first, before prescribing some other ointment. Do not know what she has in mind yet, but awaiting the pathologists report. Will let the forum know what she prescribes just to get other opinions first before getting it from pharmacy. I tend to value the forum's experiences more than health practitioners opinions. So scared to move from dermovate as it has worked quite well for me since April, but will see and keep you posted. xx

 

Hi Cuppa,  Have you listened to Dr Goldstein's webinair, site pinned to the first post on this forum.  It lasts for an hour but you will be so much better informed about the use of Dermovate (Otherwise known as Clobetasol).  It is necessary to use this twice a week to prevent reoccurance of a flare up.  It is not suppose to be a problem for long term use as the skin thinning it achieves is what we need as the ls causes skin thickening.  You definately need to be fully informed when you see your specialist or GP. 

Hi,

im going to write a new post update soon, just a little manic these days as pick daughter up from boarding school today and her boyfriend is coming to stay. Husband in Kuwait, son is in USA playing baseball for Australian team on a 35 day tour playing daily, so I'm stretched this keeping up with everything.. All went well with derma vulva specialist yesterday thanks. Take care xx

Thanks for your suggestions, lots of great ideas xx

I have been rubbing the coconut oil all over the vulva and entrance of vag. Should I not be doing this ?  Should I just put on spots. I am red, irritated, sore, and have lesions about 4 places.  This has gotten worse since using clob.  So now I am experimenting to see what will work....putting three dif. ointment s different places,  But doesn't it all run together?  I still put Clob on two white patches.  But then where the lesions and scars are I just put coconut oil or Emu oil. But I feel the Clob is going onto the lesions area and causing more irritation.  I can not believe using cream can be so complicated.  

If your clob is cream, see if your pharmacist will sell you a refill, but the ointment rather than the cream. Mine did. There are ingredients in the white cream that bother some of us.

Hi Cuppa,

Thanks for the advice.  I put the coconut oil in the fridge yesterday in sheer desperation, so will take it out when I need it, until things cool down over here.  Someone mentioned on this forum a while back that coconut oil isn't so efficient when it has liquified!  Thanks again...

Hi Judy,

I am very sore too at present and must remember to take zinc tablets, which have always helped me in the past.  Someone told me about them on this forum.  Everyone is so kind, I would be quite lost if I couldn't hear from you all.  Take care!

Hi Judy. I agree with Morrell that Clob ointment is much better than cream. Apparently it has less additives. I only apply mine on the spots, not all over. Remember Clob is a very very strong corticosteroid so we have to be very cautious when using it. I have also experienced that when I put it on where it is not needed, I become red and irritated. The Gyne has also advised that clob should not be put on open tears and lesions. You may want to try the zinc ointment and zinc tablets to see if that will bring relief? Chrisy has advised that I should use incontinence pads after putting on coconut oil as I cannot take excessive moisture down there. Perhaps a good idea for you too? It might be a good idea to stick to one ointment and then work with process of elimination until you find the one that works for you.Take care and I hope you will find relief soon. xoxo

Yes.  I did this because I read on here that ointment is better.  I have so many notes that I have written from this forum.  I just learned about the zinc tablets. Thanks.

 

 If I think the Clob caused the tears, then if I continue using it on other areas will it still get to the areas with the lesions. I am worse using the Clob. I have tears to the opening of my vag. now..just slightly inside. Now I am trying to use only on white patches.  Using coconut oil everywhere else.  Will the zinc oxide keep Clob off other areas.  Thank you.  

 

I feel like I don't need a doc....every single thing I have learned has been on here.  Thanks to everyone.  I feel that most of the ladies on here are from the UK...true?  I am from middlewest, USA.  Anyway, I am going to try zinc tabs.  Thianks.

 

I don't know about not using clob on a tear. A tear is my definition (for me) of flared-up, so that's exactly when I do step up my use. That said, my gynae switched me to Tacrolimus (Protopic) a few months ago and I'm quite satisfied with it. My tears have become very shallow and heal smooth after an extra two days of applications.

Morrell1951 is so right.  This is the same case for some of the estrogen creams out there...I don't recall the name of the ingredient...but it can cause irritation...even a yeast infection in some women.

I mentioned Tacrolimus to my GP today and she appeared shocked that it is used for this condition.  She said it is extremely potent and is taken into the body through the skin and quite toxic.  She did not want to prescribe me it.  Normally used for severe conditions like psoriasis she said.  I can't believe that she does not consider this a severe condition with all the atrophy I have. 

Oh, for heaven's sake. We use a miniscule amount! Right on the main LS information page of this site it talks about using tacrolimus.

I have to go back in a month I think I will research this and go back armed with the necessary.  Thanks for the info.