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Taking a break from Dermovate?

Posted , 8 users are following.

Bridge_of_Sighs
Bridge_of_Sighs

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

0 likes, 43 replies

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  • justine89448
    justine89448 Bridge_of_Sighs

    Posted

    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
    • Morrell1951
      Morrell1951 justine89448

      Posted

      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.

  • kathryn07219
    kathryn07219 Bridge_of_Sighs

    Posted

    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!
    • Bridge_of_Sighs
      Bridge_of_Sighs kathryn07219

      Posted

      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!
  • Guppy007
    Guppy007 Bridge_of_Sighs

    Posted

    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. 

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      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.
    • sandra01720
      sandra01720 Guppy007

      Posted

      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.

    • Guppy007
      Guppy007 sandra01720

      Posted

      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.

    • sandra01720
      sandra01720 Guppy007

      Posted

      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.

    • Morrell1951
      Morrell1951 sandra01720

      Posted

      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!
    • sandra01720
      sandra01720 Morrell1951

      Posted

      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.
    • Morrell1951
      Morrell1951 sandra01720

      Posted

      Very little. I haven't bought my beloved bananas, mangoes, or anjou pears in years.
    • sandra01720
      sandra01720 Morrell1951

      Posted

      Ok. Thanks. I was doing so well with my diet changes and then slipped again. Time to adjust it again.
    • Guppy007
      Guppy007 sandra01720

      Posted

      Ah! it is difficult, especially when you have children who of course want to eat cakes and biscuits.

      I love cinnamon rolls!! sad

    • hanny32508
      hanny32508 Morrell1951

      Posted

      Berries do better with me and apples too.  Both fruits seem to be beneficial.
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