I'm sure this has been discussed but where exactly do we rub the steroid?
I have been rubbing in between the minora and mijora where the fusing is occuring and on the clitoris.
Do we also rub it back by the anus and inside the minora on the soft tissue? That would get on the uretha and vagina.
Thank you.
It depends where the LS is. I did not have it around the anus for the first ten years or so. Now I have to treat that area. It was not always around the clitoris either.
As it progressed I covered more area. I now cream towards the urethra.
I use Advantan fatty ointment.
You can ask for a diagram from your specialist to indicate where the cream or ointment needs to go. My specialists have done that for me when I have asked.
I hope this has helped.
Kathleen, although you were using the Clob for years, it still progressed to oher areas? Did you also get more fusing whole using it?
I think I listened to people saying it thinned the skin so I was frugal with it. In hind sight I would have used it more liberally.
It also does progress. More areas become involved.
20 years ago it was only a small area on inside of major labia.
So it does progress even with treatment?
I am really having a very difficult time deciding how much to use. I thought I was using the right about but then the very irritated areas (inside the labia minora) keeps getting worse. I didn't have much itching before, now I do. I've just started up with the clob again 5 days ago after the biopsy. I don't know what to do..more or less. I think I've gotten more white patches since being diag. a month ago. My app't to vulva clinic is not until two more months.
Actually it has been 12 days since biopsy...week behind.
Just make sure you get all the white bits and itchy bits.
Use a mirror as that helps. They like us to watch for any changes.
That's what I want to know. I didn't realize it progressed if you used the clob.
New areas do. But you can only put it where you can see it needs it.
Remember mine progressed very slowly over 20 years.
Bottom line, clob is treament, not cure. If my mother hadn't spent decades on prednisone her rheumatoid artritis would have quite quickly locked her body into a knot. She doled out the drug sparingly and increased it during flares ( always from stress). This is the experience that informs my attitude to our prescriptions. I read in a medical article that LS patients tend to err on the side of too small an amount of ointmen. I've started to be less stingy with my tacrolimu.
Using the clob is not an instant solution. Don't expect to see or feel results right away. The whitened scarred skin is actually thickened and while once thought to be weakened and thin, it is not. THe clob will help to thin it and remove the scar tissue. It should be applied on the scarred tissue which will not be on the inside areas but could be over top of the clit if it is fused together there, and around the anus if the white scarred tissue is there too. It does cause some itching and burning at first which is why I discontinued using it before I knew better. But don't let that stop you cause it needs to be continued longterm to keep cancer from developing.
I like to add to this conversation that the LS doesn't necessarily has to progress to worse. After my dilation procedure and my using baking soda rinses and baths and regular dilation the result has been a gradual withdrawel of fusing. More and more of the adhesians let go. My husband and I have a gentle sex life again. I also keep thinking that my strict diet - no sugar, keeping fresh and healthy food on the table and more of the like, has supported this turn around as well. A combination of factors must have played a role or I wouldn't have been where I am today.
And so I march on, staying close to the route I have followed this far.
Thanks Hanny. I love hear the encouraging words from those of you who have trodden the road ahead of us! About the baking soda... Is my Canadian baking soda the same as the bicarbonate of soda referred to by some of this group. I think not...?
Dont'know about everyone else but I just put the dermavate all over, never heard of or been prescribed clob and dont even know what that is. My gyn said to use the balneum cream as much as I want. Don't know about the fusing either. Does everything stick together and when everyone speaks about losing their bits where does it go ????
Lidocaine ointment and also ice help with the itching.
O yes Sandra, it's the ordinary baking soda you buy in the grocery store IN CANADA! Cheap and very helpful this far.
dermavite and clobetasol are the same thing
Ok thanks!
Sara,
I used Clob last year to get rid of some of the white plaques of skin on the inside on my labia minora, and I was fortunate enough that it all disappeared quite quickly. For a while, even though my Vjay looked perfectly fine, with no cuts, sores, etc I still applied the Clob, usually twice a week because I was told that this was good maintenance. However, I don't believe that is necessary now, I have changed my views on this, and so I think that if your Vjay looks and feels absolutely fine, then the best course of treatment is to always spray with a little water (with an added pinch of bicarbonate of soda) after using the bathroom, dry well, and apply something like coconut oil or Emu oil. I think that is the best plan of action for maintenance, and since sticking to this routine I have had no more problems with fusing. For women that have obvious signs of LS then Clob is the recommended approach.
I don't believe that Lichen Schlerosus gets worse for everyone, but I do think that some women have the disease far worse than others, that's all.