LS

Yeh I agree with the constant care but that in itself for me is a pain. Never been one for fussing over myself and find it all a bit much but then I think because I have friends fighting cancer I count myself lucky that this is all I have to do to keep myself going.

Yes, it is a small commitment compared to those who face horrible chemo treatments.  

The result of all my diligent work:  This morning I went for a check up at my gyno and he said: "This looks excellent!  A whole lot better than when I last saw you."  Isn't that encouraging. It tells me that I'm on the right track.  (He has a careful written report on all the things I do.)

Morrell, when the flareups are in the form of raw, itchy and split areas, do we still put the Clob on those areas. That is the way mine is and it burns like I've put alcohol on an open sore.  And when it is controlled with no white patches or raw areas, do we still put it on the places we were having the flareups although we may not get it on the exact spots.

Judy have you thought to try bicarbonate of soda bath, 1/3 cup in a bath or a pinch in a spray bottle.  Spray area and dry or soak in a bath then dry and moisturise with an emolient like epaderm or hydramol or some similar moisturiser which is so soothing and hopefully will not sting.  I use manuka honey to treat sore areas and coconut oil as well.  On top of this I use Clobetasol (Dermovate) twice a week to control or more frequently if I have a flare up on areas that are split or white. not all over though.

Chrisy, thank you.  I do use the baking soda in a warm bath . And I spray after bathroom trip.  I used the coconut oil and I believe it irritated me more.  It seems a tiny bit better.  Now, I am using a very tiny bit of Clob.  But I am not using on the raw and cut areas.  I feel that I keep asking the same things over and over, and I am sorry if do. This is my first really big flareup  which has lasted now for 5 or 6 weeks.  I'm sure I have had it for years  also with only some itichng and tears that healed after a week or so....wondering why at 69 it has shown itself so aggressively now.  

Sorry to read about your suffering.  Flare ups are horrible.  Just to add some 'wisdom'.  I have also added a good number of drops of Tea Tree oil in the bath and really take my time.  A good soak with the baking soda and tea tree oil has helped me.  

Next thing I check again is my diet - did I eat or drink sugary things perhaps.  It's sometimes so easy to make a mistake, especially when a person is invited somewhere.  Too much meat?  Did I eat enough greens like lettuce, kale, parsley?  (Fresh berries - blue berries are good right now and beneficial.)  Did I perhaps take it too easy somewhere in my diet?  I stay away from alcohol, but a glass of apple juice, most likely too high in sugar, as I did lately, will l do me in.  When I feel those little priks - o boy.  Time to grab the glob and drink lots of water and go for a figerous walk. 

Just so you perhaps can compare notes.

Live WELL!

Judy, LS is known to be less curable after menopause. Myself, (I'm 63) I do use the ointment on split and raw skin. What else is it for? I know they tell us to wait for a few days after a biopsy, but that's much deeper. This is one of our grey areas. I've had a big split for a couple of weeks or so. I did some ointments apps two days in a row, but this week I didn't increase ointment applications, just stuck with twice a week. I bought an expensive bottle of jojoba oil at the health food store. One drop rubbed in feels very nice. I use it fairly often. In a little eyedropper bottle half full also put 3 drops of 100% frankincense in (which was really expensive) but I'm a bit skeptical about what its value might be. I'm happy with something to substitute for coconut oil for awhile, so I don't become sensitized to one oil. I remember commercials for skin products that bragged about containing jojoba oil. Probably hardly any. And here was a whole bottle for a not prohibitive price.

Hanny, I have read about TeaTee oil and probaly will try it too.  I have bought just about all the moisturizers I have read about here. Yesterday I ordered Perrins Complete.  It seems a lot of women like this too.  I do the same thing..ask myself questions about what I may be doing wrong.  Thank  you very much for your kind words.

Morrell, you and the others ladies are right when you say that you just have to figure your own routine and what works for you.  It is strange that we all have the same diag. and the same symptoms, basically, but different things work for different people.  Even thought I heard you say it,  I don't think I truly understood it.  I am hoping I have found my routine. For the first time, tonight I feel sooo much better.  I looked, and I am healing, but I am scared it won't stay that way.  You said that you have had a split for the last couple of weeks.  Are you having to change what you have been using because it isn't working? Why aren't you increasing the ointment to more times?  You are so knowledgeable about LS ...I was just wondering.       

The split happened from stress. But still not a horrible deep bleeding one like I used to get. Ive been going for a lot of long swims in clear lakes. By last night the spit was healing quite well and my whole white perineum had faded to more pinkish. I only gave it the two-day-in-a-row ointment when it actually hurt.

Readig your comment again Judy, when I get a spit I don't decide my ointment isn't working. Its a flare and there will always be flares, hopefully shorter and milder. We're treating an incurable condition. When I see my gynae in the fall I'm expecting she'll be a bit disappointed that switching me from Dermovate to tacrolimus didn't permanently clear it up. So I'm going to ask her if I can cycle the two, but I dont know whether to make the cycle a week, a month, or what. Someone on here was doing this.

Last night I did rub the Clob on the raw areas.  It was a little better yesterday so I tried it.  I still feel the tears, but I haven't checked yet.  I too had read about the cycling, but I don't remember what the other med was besides the CLob.  Thanks again fo your info.

Yeh get the splits AAARRRGH and the redness and the swelling, feel like I'm hanging down by my knees sometimes and the selling gets real bad. The itching is horrendous sometimes but I find if I can possibly leave it alone it does calm down. 

Never, never scratch! Take a lukewarm baking soda soak when its bad. Scratching will only make it worse.

I know but unfortumately I only have a shower !! staying at my daughters for a few days and I;ve had that many baths I've got wrinkles on top of my wrinkles !!

Glyn, while away I use a special sitzbath.  It works for when no bath is available.  Bit of baking soda in it and a few drops of tea tree oil and I'm fine for a few days again.

I agree. My specialists said must never do that! No hot water either! 

I have no desire to scratch fortunately with the Advantan fatty ointment.

Something that occurred to me overnight is what happens when we are too old and doddery too look after this?

Kathleen, I have already thought about that ! I get in the most awful positions sometimes.  I hope I can remember where everything is.  

That's my worry as well.  But for now I'm marching on.

Thanks Hanny tried it and it helped a little x the soda i mean will try the teatree too do u think that teaa tree tabs will help x

Judy, My routine is that I only use the Clob when I experience  pain in the Clitoris area.  At the moment my vagina  looks fine, I have no sores, cuts etc, but if I do get a sore near my vagina (like last time, which was  on my butt, a couple of inches away from my anus) I like to use something less aggressive than Clob.   At first I usually start off with something like a tiny bit of vaseline or baby rash cream, and then after a day or so, when it is feeling  less sore, I move onto keeping it dry, by  using talcum powder, and I never allow the area to become moist, so it takes some work to be constantly washing/or spraying, then dusting with talc!! 

I find this works for me, as basically it is trial and error as everyone reacts differently.  

Glyn, it's the repeating of the soda and coconut oil treatment that eventually will make a difference.  I don't know anything about tea tree tablets.  

Hi all

I'm going to try the diet too less sugar and dairy. I am type 2 diabetic so sugar is already lower in diet but I do like my milky coffees and use it on my porridge and shredded wheat so I have it then too and I am a butter fiend so I'll see if it helps. I am in absolute agony at the moment and I am disgusted when I look at myself. I am on the three months trial for the dermavate and just starting the month for every other day but I dont think its working and I am terrified of having the biopsy so I'm not in a good place at the moment. I honestly think something else going on because I am so swollen and everything is dark red and raw. I find it hard not being able to talk about it though, as soon as you mention anything the subject is changed immediately. 

If you remove your dairy make sure you take a calcium supplement. I love my dairy as it also has vitamin K for osteoporosis. 

I have never found a connection and the Advantan Fatty ointment seems to handle the LS so I do not remove my dairy.

I am a diabetic too so sugar is not my friend but I am not worried about fruit or honey. I mainly ask if it is a natural product and then have it if is.

Thanks Kathleen 

Is the Advantan Fatty ointment only available on prescription. The dermavate ointment that I am using burns really bad when first put on, takes about half an hour to calm down but I am being selective where i put it now, just around the outsides where it is worst, think its the ointment thats making everywhere else burn.

Hi  Glyn you do sound in a bad way at the moment. Sadly with diabetes you will know that it will take you a lot longer to heal than if you were not so afflicted! Do try a cool things down a bit with cool/ cold flannels or crushed ice in a plastic bag covered with a damp cloth. I am not convinced that cutting out  dairy food from yor diet will make much difference , that is , if you have a reasonably good and healthy diet and normally eat a moderate amount of dairy foods  and nothing to excess.

I understand that IF one does go down the path of excluding foodstuff to eliminate the possibility of intolerance, then only one food at a time should go  for a week or so then the NEXT food and so on. Keeping a food diary will help as will a note  of your mood state

When the pain is really bad I have resorted to an analgesic for a couple of days. I am sure you are doing all the other stuff like going commando  long skirts and pillow between the knees at night to keep for getting too hot and sticky in the nether regions. If the groins are hot sticky and red too then i find a soft(silk) or cotton barrier to stop the skin touching will help

Remember there are  a LOT of fat soluble vitamins that you may remove unnecessarily from your diet and that may inhibit your healing process

IF the need to scratch becomes unbearable just press the area and DO NOT SCRATCH!!! You will damage already damaged tissue a lot more and prolong the agony.

I know how you feel about not being able to talk about the condition. my friends are oh so squeamish- see a squashed worm and they freak out - a spider more so and as to bodily functions - forget it! So Glyn if you need to scream and shout or just whine and whimper This is the site to do so- we have all been there so will support  you in any way we can (virtually)

take heart  the pain WILL diminish esp if you carry on with the Clobetasol - painful tho it can be to apply - it will do something therapeutic  eventually and keeping the area clean - remember too that we are slightly salty - think blood tears etc- a teaspoon of salt to a pint of water is the same salinity so so a gentle pouring of the saline solution over the vulva can be soothing - if messy!

If you can take a photo (with a camera- NOT a phone) so you can see how it is at its worst then you will able to see some progress - albeit slow- when healing takes place

. Good luck Sue

Yes, it is only on prescription but your GP can prescribe it. The burning sounds awful!

I use it fairly liberally without any negative effects.

I am a diabetic too and am having no issues managing LS with Advantan fatty ointment and I do not do anything else except use Dermeze sensitive when needed.

Thanks for those kind words sue it is a relief to talk onn this site and educational too I'll keep reading and learning.