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Dermatologist vs gynecologist for LS

Posted , 7 users are following.

Kiki55
Kiki55

I have had LS for about a year and began treatment with my gynecologist. He started me on clobatesol once daily and I saw minimal improvement after a month. Rechecked one month later, saw a bit of improvement, but I still had the painful red raw skin and terrible thinning in the area where the underwear leg band is ans had to switch to a bloomer type underwear with no elastic band. After fretting about the situation day and night, I decided to try a dermatologist. Right away she felt most of my redness from the vulva are and clear up past the anus was being caused by overuse of the Clobatesol.She examined me and told me to begin using the Clobatesol every other day after showering when the skin is warm and moist and then had me begin using Protopic (Tacrolimus) on the days I didn't use the Clobetasol.

1 like, 14 replies

14 Replies

  • Kiki55
    Kiki55

    Posted

    Sorry, I accidentally pushed send!  Oh my what a difference a month made!  I just went back to my dermatologist on Friday and she has discontinued the Clobatesol and I am now using the Protopic once daily or twice if I feel I need it. All the redness from my anal area and beyond is no longer red and painful.  She feels the LS us under control and the residual redness will disappear after I'm Clobatesol
  • Kiki55
    Kiki55

    Posted

    Free.  The thinning skin will gradually repair itself after a time.
  • Morrell1951
    Morrell1951 Kiki55

    Posted

    Hi Kiki, glad to hear it's working. I've looked this up and Protopic (Tacrolimus) is an immunosuppressant only prescribed where Clobetasol fails. I've been trying to use Clob only twice a week for most of the year since I was diagnosed, but now I'm going on Mon-Wed-Fri, just slightly more frequent. Daily was just for the first few weeks in my case.

    In answer to your topic, I wouldn't mind consulting a dermatologist, but they're scarce as hens' teeth where I live, so I'm sticking with the young gynae who was the only doctor in sixty-one years to recognize my LS at a glance.

     

  • T-top
    T-top Kiki55

    Posted

    Hi Kiki and Morrell,

    I think I've been dealing with this for years, but only diagnosed this spring. My gyno first thought it was just perimenopausal drying, and suggested Vagisil and other moisturizers used for that. Of course it didn't work, so I went back and she wasn't available. I saw her colleague who immediately recognized it as LS and told me to use Clobetasol, which I already had in the house and tried because it had been prescribed for vulvadinia. I started feeling better, but not for long. They had also suggested seeing a dermatologist, which I did and he prescribed Protopic twice a day. It too, started to make me feel better, but then it went the opposite way, and the burning started again. Took me off it for a few days and then started again, only once a day. Now I have an appt with a gyno who claims to specialize in LS. I'm so miserable. Using Vaseline and 5% Lidocaine to treat symptoms... I'm hoping the protopic helps once we figure out the correct dosage... Thanks for listening. 

    • marey
      marey T-top

      Posted

      hey T-top ....

      have you tried more gentle moisturising?

      extra virgin oil oil in a wide mouthed jar in the fridge door, so easily accessible, can be very soothing....if you think thrush may be on the way then coconut oil can come to the rescue whilst you consider how you want to treat this.

      gynae and dermatologists both can only offer steroids...just with  different names. maybe its not about 'blasting' yourself but maybe about a quieter self exploration perhaps...what do you think?

    • T-top
      T-top marey

      Posted

      Thrush? Is that caused by the oils used to sooth? I need to read more... I did buy Emu oil, but am hesitant to use it. I'm not sure why, it just seems 'yucky'.  
    • marey
      marey T-top

      Posted

      no no T

      not at all. soothing oils of any sort, and you'll prob try them all, are fine. Its a question of efficacy.

      i start with the minimum....so any gentle oil just helps to moisturise...but i haven't recently had to do even that. its that some women here seem to get thrush. i have had it in the past years ago and so don't ignore my history..but haven't had thrush for years.

      but if i did i would prob try coconut oil for its anti microbial properties...because its so good. in other words i'm keeping it in reserve for the vulva if ever needed....and using olive oil if i want to moisturise. i use coconut on my skin for moisturising and for sunburn ...its great. 

    • Morrell1951
      Morrell1951 T-top

      Posted

      T-top, I think emu oil is a good idea. I just posted info about big Pharma's moisturizers in the Epaderm thread here. Marey's right about coconut oil.

      Depending on your age and the speed of progression of scarring and atrophy, you may or may not want to opt out of the steroid (Clobetasol) or immunosuppresant (Protopic – rarely precribed) creams/ointments. I've followed the gradual decreasing dosage of Clob my gynae prescribed and now use a tiny amount Monday, Wednesday, Friday nights. a 50 g. tube has lasted a year. I expect to use even less in the second year. The idea is to provide a steady low dose that keeps inflammation at bay so we don't develop lesions that cause scarring and shrinkage and increase the slightly increased chance we have of developing squamous cell carcinoma.

      I refused steroids for my psoriasis  for twelve years, during which I explored alternatives and improved my diet and lowered my stress. My psoriasis is 100% clear. Now I accept that LS is more reactive to whatever comes out of our bodies and develops symptoms much faster than psoriasis.

      I've found cutting out excess processed sugar has helped. And copious amounts of natural oil-based creams and ointments nightly really help.

  • Morrell1951
    Morrell1951 Kiki55

    Posted

    I believe thrush is all tied up with LS. I'm sure it's the reason I was never diagnosed with LS, or treated for it. I was always going to the doctor for thrush treatment. Six months ago when I tried having sex again once, I immediately got a raging yeast infection. It's always there waiting for a bit of friction to get it going. I used the bomb, the three-egg dose. Oooh, blowtorch city! Now that we don't need a prescription for anti-fungals I picked the wrong one, looking only for speed. My gynae said I should have used the longest, mildest treatment for it, seven eggs.
    • Morrell1951
      Morrell1951 marey

      Posted

      Anti-fungal cream comes as small egg-shaped suppositories you insert vaginally with an applicator.
    • marey
      marey Morrell1951

      Posted

      ah ok!

      was getting ready to whip up some eggs!! actually whites are often used for damaged skin and burns..also below the hocks for horses. maybe i should try some.

  • sammychick66
    sammychick66 Kiki55

    Posted

    Hi, hope you don't mind me joining this discussion.  I was diagnosed with LS in April 17 and was trying to find out about getting a private consultation as I am at the end of my tether now.  After having a lot of vulval/perineum pain which is getting worse daily, I was seen by a gynaecologist who said it was VIN which would need radical surgery involving a reconstruction of the vulva!  He referred me to a specialist in vulval reconstruction surgery and I saw him in November when he said it wasn't VIN but lichen sclerosis, which he described as looking like 'somebody had taken a cheese grater to it', and he referred me to a dermatologist, who has passed the referral onto a gynaecologist who she does a joint clinic with - phew.  Unfortunately the secretary of this latest gynaecologist has told me that there is a very long waiting list for this clinic so the chances of being seen any time soon are not good.  Because of this I am considering getting a private consultation, but I'm not sure who it should be with.  Oh, I forgot, the vulval reconstruction specialist said that he didn't want to give me any treatment for the LS as he wanted the dermatologist to see it the way it was so I haven't had any treatment for it.  Can you advise me who would be the best discipline to see privately?

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