New and just diagnosed

Don't worry too much about the cancer part.  You are already treating your LS which is the good part.  

I buy coconut oil in the nature store.  It comes as a solid.  It melts when used on the skin.  

Hi Mrs Giggles(like the name), this is a great forum for finding out information and you will find out more and more if you trawl through the discussions. 

But basically in answer to your query.

1. Coconut oil is very soothing, it comes in solidified form but smears on really well. Another oil lots use is Emu oil this comes in liquid form. I have tried both and find the cocunut oil to be more soothing. 

2. There is a warning of cancer developing with LS but it it is very rare so don't get in too much of a panic. It is best to check yourself on a regular basis with a hand mirror and report any changes to your Doctor ASAP to be on the safe side. 

i am hoping you have been referred to a Dermatologist and have been given Dermovate (Clobestol) ointment to use as this is a necessity with LS, You should also avoid scented soaps and shower gels, try an emolient to wash with. Try also to keep urine and facaes off the affected area as they are caustic, most people wet a piece of toilet tissue then pat dry with another piece, unless your lucky enough to have a bidet of course.

i am sure you will have lots more questions and you will get lots of advice from other ladies on here which will all be good. 

Try not to worry too much, it's not a very nice thing to be diagnosed with but it it is controllable and needn't take over your life. It's good that you've found this forum as you will now know you aren't alone in your suffering and you wil get lots of great advice.

Best wishes.

Hi Mrs. Giggles, sorry to hear you've been diagnosed, but glad you found us.

Coconut oil – food quality – is like shortening.

If you watch Dr. Goldstein's presentation, linked in the 'New to LS – Start Here' discussion pinned to the top of this forum, you'll be completely at ease about the cancer risk. Bottom line: LS is behind 60% of vulval squamous cell carcinoma. But most of those patients were probably never treated for LS, or even diagnosed. Once we're under regular care and using the ultra-potent steroid ointment effectively (again, Dr. Goldstein has a lot to say about this) SCC is a slow cancer and early signs of bad cells will be noted if they happen.

We have a disease without a known cause and no cure, with only a couple of treatment options. And the steroid ointment works very gradually. But as I'm finding out from the other sufferers on this forum there are many things we can do to improve our outcomes. Some of them give fast results, like cutting down on sugar, managing stress, and avoiding penetrative intercourse while flared up. The fewer bad bouts we have, the less scarring and atrophy – and the smaller chance of cancer.

I've had LS for forty years. I only stopped having sex a year ago. I've had two natural childbirths.

Stick around, G. This is a great forum.

The above was the short answer.  There is a lot of info on this site and am glad you took the effort to absorb as much already.  The most important part is that you receive treatment already, which then stops LS in it's tracks, so to speak.  Dr Goldstein, you probably have come across his name and perhaps you have found time to look at his website,  recommends early treatment.  (As do other doctors as well)  With the help of clobetasol the process of LS can be halted.  The risk then that it turns into cancer is therefore very small, according to his findings.  

Hope this is of some help to you. 

 

Hi.  What i find gives me almost immediate comfort is aloe vera gel.   I use Cetaphil liberally and leave residue on when i shower in a.m. and p.m.  Then I use. Small amount of George's aloe vera gel on sore spots.  I discovered this when i was on a hiking trip and uncomfortable.  It made such a difference.  I read online in a fairly credible study on the government health site that aloe vera gel had a marked positive impact on ls after an 8 week trial and that it was inexpensive, cheap and effective.  Has anyone else used it?  Cetaphil is wonderful.

Thank you for your replies and so quick!

Being prescribed the ointment but they said the letter won't get to the go to write me the prescription for 7 days. In the meantime I'm so sore and nothing in to help.

Looked up home remedies and used a chamomile tea bag and Vaseline! Very frustrated with the slow prescription system here. Chemist better have it in when I do have it

I am in th States and tripped across George's gel in Whitefish Mt where we were vacationing.  I havent found it in my town but have at Amazon and other health sites.   The Viamin Shop here has a different brand that is less concentrated and milkier but 100 percent aloe. Georges is 98 percent per aloe.   Do not use pharmacy products that are a mix of a lot of stuff.  By the way, another study found using aloe gel rubbed two times a day on oral lesions with oral lichen planus also caused marked improvement.   These were government sites on which the results were recorded.  I would definitely recommend trying aloe for either ls or lp.