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LS what dosage are you on?

Posted , 5 users are following.

A123A123
A123A123

Hello everyone,

I was diagnosed with LS and have been using the cream for 2 weeks. I saw the gynaecologist during the biopsy when it was unknown what my diagnoses was and therefore she didn't speak with me in regards to this condition the treatment or the severity.

i since received a letter from the gyne secretary saying 'you have LS, use dermovate once a day for 4 weeks, every other day for 4 weeks after that and them go down to once every few days for the last 4 weeks. I will see you at the end of october'

i only really know about the severity of the condition due to what I have read here and general research. The cream has so far made no difference to the whiteness of my vagina, so should I cut the treatment down to once every two days even though there is no change in appearance?

i would love to ask the gyne, but since I am self funding private treatment due to waiting times, I would like to avod £185.00 in consultation fees to ask this if possible!

does the pinkness of the vagina ever return or will it stay white? How long does dermovate take to see a difference?

thank you for your advice and continued support.

0 likes, 11 replies

11 Replies

  • suedm
    suedm A123A123

    Posted

    hi did you watch the Dr Goldstein webinar? It is well worth the hour it takes. It will explain exactly how to use the steroid.

    i will write to you tomorrow with the link if you don't get it sooner.

     the whiteness may take a long time to return to pink. Patience. It may not return, the inflammation is being treated by this very potent steroid, it needs to be potent to get thro the thicker white tissue that has developed with the LS, so don't take any notice of skin thinning stuff ...you NEED that area's skin to be thinner!

    so to recap

    warm bath dry massage ointment in to vulva for 90 seconds, a minute and a half, til all gone, about a pea sized amount is normally stated. After 20 moisturise  I use diprobase, the top that with a barrier if you need further protection from urine menstral flow or faecal matter.

    keep urine off the mucous membrane ( vulval skin) as the theory is that this exacerbates the soreness. 

    How long is a piece of string?

     every body is different so the length of time will differ too.

  • marey
    marey A123A123

    Posted

    Hi A123

    so sorry you have the condition....unfortunately the medical profession will tell you there is no cure.

    Your best hope is to work with others in treating yourself and speaking to those who have had success or are working on their condition...by hopping over to the Alternative Medecine Section.

    I'm currently exploring the link between Ls and  hypothyroidism, both being autoimmune...we've been having quite a lively discussion which you are welcome to join. That would be in addition to chatting to those here who you will also find to be very helpful and caring. We have differing expectations but are all bound by the commonality of our condition.

    very best wishes

    marey 

  • marey
    marey A123A123

    Posted

    You can ask the same question in the Alt med section...but will prob get a different answer!
  • Morrell1951
    Morrell1951 A123A123

    Posted

    Hi A1,

    Ditto what Sue said. I was impatient for the first six months. It takes a long time. Your dosage instructions are standard. If you have an open tear, then you can do an extra day. My white area on the perineum has gone up and down, but it's taken a whole year to shrink down to a tiny pale pink area. However, it the same period the whole area has been quite calm. You're doing the right thing. Certainly there are things to do that the doctor won't likely mention, such as managing stress and seeing if there are particular foods that set off a flare. Or various oily creams for staying moist and protected from urine. I use homemade herbal balms. Those constitute 'alternative' treatments, but not 'instead' of the only tried and true treatment.

  • kate207
    kate207 A123A123

    Posted

    My dermatologist says it can take up to two years for the skin to look 'normal' . Certainly, I felt much better and was virtually pain-free long before the white areas faded.Its important to remember that if you start to become careless about your maintainence protocol you can be prone to flare-ups again. Don't worry, it all becomes a matter of routine, you'll be surprised at how well you'll adapt to this and accept it more as a nuisance than anything else.  You'll get loads of supportr o this site.
  • A123A123
    A123A123

    Posted

    Hello everyone, thank you for your replies.

    sue - I am half way through the DR Goldsteins lecture, we have extraordinarily poor internet connection sue to living in the middle if no where that it takes 4 times longer to download the lecture than to actually watch it! I shall try to conclude tonight.

    marey - please could I have the link to your discussions linking the auto immune diseases? I plan to go to have a blood test on Thursday which will tell me if I have an underactive thyroid. To be honest, I will be surprised if I don't have it. I fall asleep at the drop of a hat and I'm continuously emotional.

    Thank you for your answers and it definitely encourages me to be more patient. I suspect that my gynaecologist couldn't provide me anymore information than I could find on here or within DR Goldstiens lecture, but is there anything I should ask at my next appointment? I.e the severity of my condition? Would the biopsy have shown the aggressive nature of my particular LS?

    x

    • suedm
      suedm A123A123

      Posted

      Glad you found the link to Dr G

      I took screen pics of the slides as they come and go to quickly then printed them off

      I too live in the heart of the country so understand your frustration! Ask for the copies of the letter they send to your GP so you know what they think, and you will be in the loop. AND keep the letters and prescription details - i found my previous GP didnt "bother" to write down  very much so when the new GP looked up my notes - not much to find!

      Worry and depression can make you weary - and you are mensturating so you may be anaemic - get them to do a full blood test

      Do you have any other auto immune conditions - you could ask the likelihood of acquiring others and how to avoid them - he may not know but it is worht asking Good luck Sue-

  • A123A123
    A123A123

    Posted

    Sue, weary is absolutely the correct word. Sums me up good and proper at the moment. I am 26 years old and I feel weary,  iam forgetful, get easily confused and this is not me! I was writing yesterday and the mistakes were appalling - I was writing the wrong words all of the time and my general grammar was terrible. I am usually an intelligent, together and literate person. I will ask for an anaemia test as well as the underactive thyroid test. I am unfamiliar with other autoimmune issues, what others are there?

    x

    • suedm
      suedm A123A123

      Posted

      anything from Asthma to rheumatism - google it- but DONT scare yourseld. Most diseases  come in barely there to death- or similiar- so even IF you DO have another condition chances are they will be mild. Please A1 do not get to obsessed by your health - hypochondria isnt easy to live with!!!

      Eat sensibly,  drink in moderation, exercise - you will find the more you do the fitter you are and the more you CAN do and you wont feel quite so weary. Make sure you are not dehydrated drink a LOT of water - too much caffiene doesnt do any one any good - well that goes the excesses of most things really.

      You could ask the Medics what is it i dont know, but i should know? Because you dont know what what it IS you dont know- if you see what i mean. If one knows where ones knowladge gap lies then you can go about filling the gap but if you dont know where to start ,the gap remains just that - a gap

      I hope that makes sense

      Sue

    • A123A123
      A123A123 suedm

      Posted

      Thank you, sue. Yes, absolutely, I will attempt to step back from health concerns because it can't help the mind :-)

      Xx

    • marey
      marey A123A123

      Posted

      very good advice to avoid obssession...to be distinquished from taking control of your health and for an appropriate period researching . Getting all the paper work you can, demos your interest, and, increases a GP's sense of due diligence! Very much in your interest as for all patients.

      You can also 'enjoy' your exploration into good health I'm having a blast!!

      Have asked Alan, the moderator, to send you that link...IT is not my forte but this time I will pay attention to how to do it (ok well maybe....without beating myself up!).

      See you over in the Alt Med section!

      xx

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