For the first time in many years I have no white patches. My GP has suggested that I take a month off the dermovate to give my body a break. Has anyone done this?
At the same time I feel that even though the white has gone, more bits of me are shrinking and I'm feeling a bit panicked by it.
Hanny when you say that your fusing is almost gone, is that the fusing closed that dilation is helping with, or are your labia unfusuing and coming back? I'm also diliting. I was doing it twice a week but that isn't quite enough for maintenance so I'm going to go back to every other day. An aromatherapist also recommended Jojoba and chamomile essential oil which I haven't tried yet. Coconut oil works well for me as maintenance, but I'm always hoping to find the magic ingredient that helps me move forward rather than stand still. Aren't we all? I will feed back when i try it.
It's so depressing looking in the mirror at the moment. I do try to stay positive but somtimes it's just so hard.
Bridge
Sometimes I'm not sure if the clob causes the srinkage and stuff we are caught between a rock and a hard place. The only thing I will say is if you come off it make sure you still moisturise well and see how you go. Good luck x
I was told by my gynae to apply the clob twice a week as a maintenance measure. I must admit, if things are ok, I choose not to apply the ointment as I don't want to spend the rest of my life applying steroids and being at this nasty condition's beck and call. I must stress that this is a personal choice and is not what is recommended. Yes, it does start up again and so I then apply the ointment. Usually it settles down again after a couple of days of applying twice a day. When I used to follow the gynae's advice and apply it twice a week, I found that the flare ups were no more regular than when I only applied it when I had symptoms. I cannot face the thought of my life revolving around my vulva!
Thank you kathryn, that was exactly what I was wondering, so really helpful to hear from you. I know exactly what you mean about life in general too!
I found the same as Kathryn too and I also do the same thing x
I completely understand.
I have not used the Clob for months, and there has been no return of white plaques of skin. I just don't believe we need to apply it for maintenance unless you clearly have the white plaques of skin; it just doesn't make any sense to me. In any case who says we have to apply the cream for maintenance, the doctors? I think it has already been established numerous times that it's a bit hit and miss on this subject with regard to the doctor......they don't know!! one doctor will tell you to regularly apply the cream, and another will say the opposite.
I think it is good that you are dilating as it is important, and I am upset with myself that I have not done so. I have just ordered some dilators online, and so I need to do that, I just can't bear putting things inside me (Sigh)
Stay strong, at least the white plaques have disappeared, you must be very happy about that.
I don't think it does. I went untreated for 40 years and have major shrinkage and fusing. Clob just keeps things not inflamed. I'm on tacrolimus and forgot it for a whole week. Now I'm feeling like weekly is enough. Blanket statements are useless, because stress is such a huge factor and we don't know what's going on in each other's emotional lives.
I love my jojoba oil with drops of Frankincense essential oil.
I'm inclined to agree. My white plaques on the perineum are very gradually fading to pink. If that skin gets to th point that it looks normal, I'm going on hiatus. Honestly, I now believe the best treatment is celibacy.
How would you manage your other symptoms with no steroid? (Such as itching)
My white plaques disappeared possibly within 2 weeks of steroid treatment but I still depend on steroid and emuaid to control my itching. For me, I would've only used steroid about two weeks had I based it on white plaques.
Is it external itching or internal?
I think you have to control itching through diet. I think if you are experiencing regular itching then you are likely flaring. If you look at some of the older threads, remember on some of our posts we often talk of having 'slip ups' with food, and the subsequent symptoms are itching...it's the nature of the beast (LS) I often say to my husband that I eat like a Russian Peasant!! I am Gluten, Dairy, Sulfite and I have recently become Vegan to try to stop my Ulcerative Colitis flaring, (it has worked) but even with that super strict diet I could not get away with ONE evening of recently enjoying treats, quite honestly my skin was itching for HOURS, not on my Vjay but on my feet where I have LS. I was in a lot of discomfort for a long time, so you see you have to be careful, some women can't eat everything that they want to with LS, although there are always some people that can eat whatever they like with no problems, its just the way it is.
Ok time to 'fess up. I have given in to sugary treats. (My daughter and I baked cinnamon rolls and Chelsea buns yesterday. Oh, I suffered afterward! Crazy itch at bedtime!
I've just been getting more careless in generals over time. Thanks for the reminder. Also have clementines here. Another weakness of mine and I've felt for some time that clementines are a problem for me.
I heard my name ....
I was totally fused up, that is, the outer labia had closed off except for a small pinhole to pass urine and that passing went with the greatest effort and lots of patience; I looked like a barby at the bottom. As if there never had been anything else at all.
The outer labia, after a dilation procedure that gave me a small opening so I would be better able to empty my bladder, the outer labia today is all free from being fused. The urethra can function as it used to. There is a clitoris. A little bit of fusing next to that yet, but minimal.
The inner labia is a question mark for me. I don't even know whether there ever was an inner labia. There is nothing there that could tell it every existed. How strange that may sound.
To keep all from staying open en opening further I had to start dilating myself. The eventual result is what I already described. I have to keep dilating and do that every other day. Shortly after the procedure in the hospital I started at first with dilating six times a day, then gradually less and less. Now every other day is sufficient, and just this week I tried every second day - it didn't go too badly. (I use coconut oil for lubrication)
At present I still use some Clob, but the smallest amount and only when I clearly feel it is necessary.
Again I have changed my treatment a little bit and was going to start a discussion regarding this, but the moderator has not allowed it to appear on this forum yet. It involved the urethra becoming irritated. Since I had heard others about something similar.
Furthermore, I don't think there is any magic with LS. You have to keep observing the bottom parts regularly and handle accordingly. Adjust when needed. I start to believe that there is a certain process, several steps even that a person may have to go through to make LS liveable.
Oranges are so high in sugar. And sweet buns – if all things were equal, I could eat nothing else for all time. But, they aren't. I think we've gotten to the bottom of your itching. Good catch, Guppy!
It was probably me who mentioned the urethra being irritated - and it still is. This leads to me feeling desperate to pass urine even when my bladder hasn't much in it. I am brain training myself (with variable results!) to say I can't possibly need to go to the loo and to get a grip. The following is a little tip that works for me - when I get the irritation that makes me think I need the loo, I press hard on the clit area for a couple of seconds. I don't know why but it seems to stop the sensation and buys me enough time to either find a loo or pull myself together.
Thank everyone for your replies.
I don't seem to have any outer labia and now my inner ones seem to be getting smaller. I was stable for so long until my husband was so ill and I had major stress. I'm delighted to not have the white skin, but don't want to loose any more of me. Haven't been stressed for a couple of months now, but maybe it takes a bit longer for my body to catch up. I suppose I was also worried that if i stop the clob the disappearing will speed up. I can see a seam on one side where bits haven't quite fused, the other side is smooth and I suppose beyond repair. Of course I didn't know what I looked like before, so it's difficult to assess.
Thank-you everyone... I meant
I also have had problems with frequency. It's distressing when you need to urinate so often. I found that by carefully treating my clitoris (steroid on the sides where I have LS and but very important is keeping it moist with olive oil) I don't have as much irritation with my bladder. I also trained myself not to go so much. Simply pushing off using the loo a little longer... .. It really has worked. I don't seem to need to go excessively anymore. I also find mine can be related to anxiety. It's been a puzzling and frustrating issue for me in the past. I am not sure why or if I'm even right but I seem to have a connection with the health of my clitoris and pressure on bladder.
Thanks. I appreciate the help. I knew I was asking for trouble. I've got such a sweet tooth. But it's not worth it.
How much fruit do you allow yourself? Another love of mine... Fruit.
My aunt helped me with this training of the mind. She attended a class for help with her problem of frequency in urinating. She has reprogrammed herself and figured out a way to tell when she truly does need to go. However, I realize there's no one answer to problems like this and yours could be entirely different. I do sympathize though. It's very disruptive to life to have to go so much.