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Dermovate advice - finished 3 months treatment and still very itchy.

Posted , 8 users are following.

A123A123
A123A123

Hello 

I went for my 3 month follow up gynocology appointment, after 1month of Dermovate cream everyday, 1month every other day and the final month of twice weekly. I have followed DR Goldstiens application advice throughout this time.

I am still incredibly itchy. My gynocologist was surprised that I was still itchy after the treatment cream and spoke vaguely that 'one day I should be able to do without the cream but if you are still itchy, use it as you need'. My understanding is that I should never fully stop using the cream.

This was how it was left due to my appointment taking another twist which I shall post in a different discussion. 

So, what do I do in regards to the cream. Shall I use it daily again to blast the itch and hopefully stop it? It's awful.

Please give me some suggestions 

A123

1 like, 36 replies

36 Replies

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  • anna80050
    anna80050 A123A123

    Posted

    I'm in the same boat as you...im still sore in certain areas 4 months later. I do have days when things are quiet and then a flare up..

    I have an appointment with my dr on monday.

  • suzanne00
    suzanne00 A123A123

    Posted

    The steroid has not stopped the progression that I am experiencing either.  I've used it for four or five months (pretty much daily) and I still have some white patches and fusing that it occurring.  Disappointing and scary.  Have also been on a strict autoimmune paleo diet (with some excesses of watermelon and some potatoes along the way), and still it marches on relentlessly.  Really wish we could find the key to stopping this disorder!  Also wish that I could be more encouraging.  Anyone with successes want to speak to what has been central to their recovery, or to why others may not be getting those results?  I'm aware that everyone is different and that there may be several varieties of LS, but any other thoughts???  --Suzanne
  • wilmatm
    wilmatm A123A123

    Posted

    After 3 or 4 months of pain itch and fissures around the anus and front while using creams and ointments as recommended and not getting better i started using bicarb-soda washes and mine is completely gone. 

    It's cheap household ingredient and wont do any harm but may well give you a big surprise like it did for me. 

    I could not be happier with the results. 

    Good luck

    Wilma. 

    • suzanne00
      suzanne00 wilmatm

      Posted

      I'm glad to hear that, Wilma.  I did see that some people were trying baking soda. Your encouragement is just the reminder and boost I need. I'll report back.  Thanks for the nudge.  --Suzanne
  • Morrell1951
    Morrell1951 A123A123

    Posted

    Hi A1,

    I was disappointed in Dermovate's results after five or six months. Now that it's been well over a year, I'm realizing how gradually it works. I've been down to twice a week for almost a year. Once in awhile when I've had an emotional upset or eaten a bunch of sweets I flare up and that day I use the ointment even if it's not Monday or Thursday. I'm finding the flares are not very bad and the very rare times I get a white area on my perineum and a tear, it's a very shallow tear that heals up after the extra clob application.

    Unfortunately this doesn't constitute a promise that you'll have the same experience. There is such a wide range of how slow or aggressive LS can be in different people. Mine has been with me for forty years and I'm not too bad, so I guess I have a slow case. Most of the atrophy and fusing happened before I was diagnosed at age 62, so I'm just treating it for 1. comfort, 2. hoping to have a plenty wide opening to pee through when I'm 80, and 3. avoiding chronic open lesions in expectation that I won't be a vulvar squamous cell cancer statistic.

    And at the risk of sounding like a broken record/wet blanket, if you grin & bear it through penetrative intercourse when you're flared, it will make it worse and ultimately cause more fusing and atrophy.

    Now that my vulva is very calm, I can safely practice dilation – gentle stretching – of my introitus while I soak before applying clob. It's so good for our mental health to feel there are supplementary things we can do on top of using the meds.

    • suzanne00
      suzanne00 Morrell1951

      Posted

      Thanks for your advice, Morrell--I'm wondering how do we know when we are flared?  I think that I've been in a constant flare these past few months. I don't know what normal is anymore, I guess.  Will those tissues ever lose the whiteness?  Do they become stretchy again?  I know that the archectural changes stay, and some loss of coloring stays, but does the tissue become normally stretchy again?  How much remaining whiteness is normal for LS? Do most people give up on sex?  Does it ever feel normal again if there isn't too much fusing?  I'm a hot mess of questions, aren't I?  --Suzanne
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      You're a hot mess of questions. lol

      I'm not flared when I'm not feeling irritated around my anus, squirming in my seat. When I use the old shaving mirror every night my perineum isn't torn and although it's almost always very pale in a tiny area, it's not cigarette paper-white in two square inches like it used to be. I don't have red, itchy, bumpy skin in the front (mons) area where the hair is most dense.

      I do, however, always have a tight bridge across both ends of my introitus, which will only take three fingers with some effort after five minutes soaking an a pretty hot bath. That's the irreversible part. Maybe you'll have some success with the estrogen cream, but Dee on the 'Living with LS' blog says it took three years for that to take effect.

    • suzanne00
      suzanne00 Morrell1951

      Posted

      Regarding figuring out if I'm in a flare--I do still have white patches inside my labia minora.  And the clitorus is sore and starting to retreat and disappear some.  So, I guess that I am still flaring.  My intoitus has narrowed, or maybe its a lack of normal elastisity, but that was my first sign of this disorder last year, even before any visible signs.  That also has not improved--not sure if it's permanently smaller, or just doesn't have normal stretchy tissues. I've been on hormone creams for several years, but the LS did seem to get much worse when I stopped applying to my vulva for a couple of months. Felt improved when I added back.  I've not had much problem with tears that won't heal or with itching--maybe because of the hormones.  I think that I've been in mild/moderate flare all year.  Haven't had much sex at all in the last few months.  Keep waiting for this LS to retreat, but it hasn't.  I'm going to try the baking soda with a squeeze bottle with warm water.  Thanks for the reply about figuring out flares, Morrell.  --Suzanne
  • hanny32508
    hanny32508 A123A123

    Posted

    Start to sound like I'm repeating myself, but am so enthoused: I have started to use baking soda (not baking powder) in my warm water spray bottle (three to four pinches) and use it after every bathroom visit.  LS first stopt and then retreated as fusing somehow seemed to 'melt' bit by bit.  I also use one third of a cup in my every other day bath and has helped with other spots on the body, plus has helped with skin disease on my hands and feet.  I hope this keeps going the way it does, as it gives me much hope that the LS will become manageable after all.
    • suzanne00
      suzanne00 hanny32508

      Posted

      Thanks again for the baking soda reminder, Hanny.  Sometimes I have to hear things a few times before I break down and change my routines.  I shall try it!!!  I hope that you are feeling better each day.  --Suzanne
    • Morrell1951
      Morrell1951 hanny32508

      Posted

      I think I've also heard this enough times that it's time for me to set up a spray bottle in the bathroom. I'm very happy with the soda baths.
    • hanny32508
      hanny32508 Morrell1951

      Posted

      Happy to hear you say that.  Together we will find the best ways to learn to live with LS.  
  • Pixel_Pixie
    Pixel_Pixie A123A123

    Posted

    Hello! I am from Canada and new to this forum (I chose this one because there doesn't seem to be any support groups that I have found for Canada, so I hope you don't mind me joining in). 

    I see a few mentions of the steroid treatment called Dermovate. The cream I was prescribed is called Taro-Clobetasol  at 0.05% which is a topical corticosteroid. Is that the same thing?  If not them perhaps asking your doctor for it . Before I was prescribed it I too was itchy all the time. Soaking in a hot bath was the only thing that would help and it would only help temporarily. Then I started using Taro-Clobetasol and within mere minutes I finally had some lasting relief.  Not to get too overly personal on a first post but oddly enough though, I have hardly ever had any more itching ever since my clitoral hood fused closed. I think that may have been the major cause of my itching.  Now  I only use the cream when I have flare up of tearing skin or large grey patches returning.  I have been dealing with this for about 4 or 5 years now and I am the only person I know who has this. I had no idea that fusion could even occur until it happened. The first time I have been sexually active in over 3 years was not too long ago and boy did it hurt like crazy.  So thanks Morell1951 on your advice on intercourse.... you may worry about being a broken record but if you hadn't have said it, I never would have known. So repeating yourself was much appreciated. 

    • suzanne00
      suzanne00 Pixel_Pixie

      Posted

      Welcome Pixel_Pixie--Thanks for your input!  I was curious if your fusing happened BEFORE the Clobetasol? Yes, that's the steroid that most of us seem to be using. Also wondered if you thought that the pain that you experienced with sexual activity is due to the fusing or to the skin quality and lack of stretching with LS.  I'm getting some clitoral fusing and also now have pain with intercourse, so wondered about your experience with this, too. As Morrell advises, that may be our body's message not to proceed with penetrative sex (which may not be popular with our partners).  Thanks for your thoughts.  --Suzanne
    • hanny32508
      hanny32508 Pixel_Pixie

      Posted

      I believe that Derm and Clob are the same.  I'm from Canada too Pixie. Also because of lack of anything in Canada have I joined this forum. Good people here.
    • Morrell1951
      Morrell1951 Pixel_Pixie

      Posted

      I'm in Canada, too, Pixie. My gynae prescribed Tar-clobetasol cream, but after watching Dr. Goldstein's presentation (there's a link in the pinned start-up topic of this forum) I asked the pharmacist to give me Dermovate brand (Taro is generic) ointment (instead of cream).
    • Pixel_Pixie
      Pixel_Pixie suzanne00

      Posted

      HI suzanne00! Thanks for the welcome!

       No the fusing happened after starting the Clobetasol. Well, full fusing did. It is just a guess but I believe that gradual fusion was beginning before the Clobetasol but not at a rate where I was noticing it happening. Again just a guess, but I am wondering if the biggest contributing factor to my itching was the process of the fusing because now that it is fully fused I no longer have clitoral itchiness (and have never had major itching since). The pain with itercourse I know for sure to be the quality of skin and having it split and tear. My vaginal opening has not gotten any smaller (at  least not yet) but there were tears that bled both inside and out after intercourse and none when we began. What I am worried about though is I may have some fusing going on inside of me. Although the opening is the same, I seem to be not as deep as I used to be and there was definite resistance (painful) to deep penetration. Feeling around up there with my finger feels like there is a wll of skin but I can't tell if that is just old scarring from my hysterectomy or if that is due to the LS. Since I am not currently in a relationship with anyone it worries me that when I get into one again that I may not be physically able to have sex anymore.  sad

      On the bright side, with the fusing of the clit, I have noticed that stimulation of it is much better thanit used to be. I used to be way to sensitive there and the fusing has put just enough of a barrier that it has brought down the over sensitiveness just enough to make it much more pleasurable for me (hooray for one teeny tiny good thing about LS??)  Just thought I would mention that for others who are facing the fusing of the clit in case it may be weighing on their mind about how it may affect their sex life. It looks different, but it still functions well. 

    • suzanne00
      suzanne00 Pixel_Pixie

      Posted

      Well, I just lost the reply that I was writing to you when the plumber came, Pixie.  So I will try again.  Glad to hear that you did not lose all sensation with the fusing you've had.  That has been my worry because I am also getting some fusing happening over of my clitorus.  Regarding the shortening of the vaginal canal that you are experiencing, my understanding is that this can occur due to a low estogen state.  LS is confined to external tissues and the internal vagina does not have LS involvement (though Lichen Planus can be internal, I believe).  Did the changes internally correlate with the change in hormone levels or the hysterectomy?  If it's scar tissue due to the hysterectomy, it would make sense to me that it might be painful to push on (scar tissue would be more rigid than regular tissue). Have you tried any hormone replacement creams?  Hormones can stave off the vaginal changes that occur. It's hard having all of these changes to our body parts!  I've got LS and I've recently developed a rectocele (my bowel/vaginal wall has weakened significantly from earlier childbirths and normal aging and is bulging into my vagina).  These changes to our sexuality and bodily functioning can feel very disturbing, so I'm with you on this!  --Suzanne
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