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Which specialist do most of you recommend...gyn. or derm.?

Posted , 13 users are following.

judy02533
judy02533

My gyn. diagosed me with LS two weeks ago.  She gave me no inof.  She asked if I had heard of LS.  She then said that she thinks that is what I have.  She said that I will take "this cream" for 4 weeks twice daily and then come back in 4 weeks.  At that time she will decide if I need a biopsy. She then left the room and said she would get the prescipt. She sent the nurse in with the prescription. Should she have said more to me ?  I didn't know the questions to ask.  Maybe she just wanted to wait until she sees me again.  But she didnn't even show me where to put it or how much LS  I had.  I know there is one area with the white patches but I think I also have other others with LS that are not white.  She didn't tell me about side effects.  I have wondered though if maybe obgyns don't want to mess with older women who have this.  They are more interested in delivering babies in their practice.  I would appreciate your views.  Thank you.

0 likes, 18 replies

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  • nannylin
    nannylin judy02533

    Posted

    A good gyn should have all the info for you but I think a dermatologist who specialises in vulval health is the best.
  • Barking
    Barking judy02533

    Posted

    I agree with nannylin about a dermatologist who specialises in vulval health. Mine has worried me at times with comments about the severity of what he is seeing but it enabled me to get my head around what is happening and therefore be able to ask the right questions. There are many very supportive people on this forum who can advise and guide from experience about how much dermovate/clob to put where. The Dr Goldstein webinar is a good start too but it is really women with personal experience  whom I have found to give the best advice and support. I am 63 and still don't find it that easy to talk to others outside this forum and this in turn can lead to a feeling of isolation and near despair at times. Good luck and hopefully you will get some more empathetic and enlightening medical support.
    • nannylin
      nannylin Barking

      Posted

      How true this condition is very isolating. It's hard to explain why you cant walk some days and why you haven't had any sleep. I have only confided in 2 close friends (my son, daughter in law and daughter know but it's never talked about) but it's not really a coffee morning subject is it. Although when you think about it why not, I often wonder how many other friends of mine may be suffering in silence.
    • Cyndi72
      Cyndi72 nannylin

      Posted

      I told a few friends about it after I was diagnosed because I was thrilled to finally have an answer. It isn't some contagious thing that you worry you may freak people out about. We should talk about it. For years I thought I had yeast infections but I bet they weren't. Our discussing it could help someone else. smile

      To the original question, though ... My new gyn diagnosed me but she is a very progressive doctor. I would go to a vulval derm if I knew of one but I've already found more help on here in two days ofcreading thru posts than ever before. You're armed with your cream. I apply mine sparingly but all over where I itch. You could ask your pharmacist as well.

      Good luck to you and read all you can here!!

  • kathryn07219
    kathryn07219 judy02533

    Posted

    You definitely get the best all round picture of LS on this forum.  When I was first diagnosed, my gynaecologist said I was to use my own discretion as to how much clebetasone I use and how often.  Thereafter I was to use it twice a week to keep LS at bay.  I use a pea-sized amount and gently massage it in, externally and internally depending on where the problem is.  If it is too painful, I just gently smear it on.  Having been fine for a few months, yesterday I suddenly had another episode - felt like I'd caught my inner labia in a zip!  Two applications later, it is much better.  Clobetasone is a strong steroid.  You will read that it may thin the skin although current thinking is that there is no proof of this.  Wash the ointment off your hands straight after you have applied it.  You will need to have regular follow-ups, probably for the rest of your life, as the skin can change at a cellular level.  I believe the only other treatment which is currently being explored is stem cell treatment but I don't know how far the medical boffins have got with this yet.
    • judy02533
      judy02533 kathryn07219

      Posted

      Thank you so much.  Yes, I have learned so much already.  It is like I woke up to this new world that I never knew existed and certainly didn't think I would be in it.  It just takes over.  Thanks again for taking the time to respond.
    • sparker1
      sparker1 kathryn07219

      Posted

      Politely butting in - I hear a lot about "pea sized amount." Is this assuming you are applying to the entire vulva? I have been using what I think is an appropriate amount but I'm applying to a smaller area (just above and on one side of the clitoris) and want to ensure I am not applying too much or too little
    • kathryn07219
      kathryn07219 sparker1

      Posted

      Pea-sized amount - I apply it mainly to the bit that's giving me trouble at the time but then spread it out over the entire area.  The gynae told me to apply clob twice a week as a preventative measure even if I wasn't having an attack.  He confirmed that, even if I was absolutely fine, I must still apply twice a week to keep LS at bay.  As we all know, it comes back from time to time but I think applying clob has to be a forever thing.  One other thing, I have much more trouble with itching, etc, in the hotter weather.  It seems to make everthing stick together, including buttocks!  Anybody else have this problem?
    • nannylin
      nannylin kathryn07219

      Posted

      Hot weather is a total nightmare I agree. Extra moisturising is a must.
  • Guppy007
    Guppy007 judy02533

    Posted

    Judy, you have discovered what many other ladies have found, that our "professionals" aren't all that well informed, it's a depressing fact!!

    I would try to find a Vulva clinic near you if you can, or  alternatively just spend some time reading some of the posts on this site, become informed, and then you will be able to ask all the right questions. 

    • judy02533
      judy02533 Guppy007

      Posted

      Thank you for responding.  I am looking into finding a clinic near me.  So far I haven't had any luck.  But I certainly have learned a lot in the last two weeks reading all the women's responses.  I read the posts and take notes.  
  • annieflipflop
    annieflipflop judy02533

    Posted

    It doesn't sound as though your gyn is very interested and that has been my experience with them, in fact the last one I saw before diagnosis just recommended I see a dermatologist without saying what he thought it was. I took his advice and saw a really nice lady derm who knew exactly what it was and explained everything.

    The thing with the the steroid (actually the ointment would be better really as it has fewer additives than the cream) is to use it maybe twice a day and very sparingly - just a pea size and rub it well into the patches that are causing you trouble, preferably after a good soaking in warm water, so the skin is really receptive. The LS is quite deep under the skin so it has to penetrate. Then after 3/4 weeks if and when it feels better, you need to cut it down very gradually, say once a day for another 4 weeks and so on. But don't be afraid to use it. There are no side effects unless you use too much at a time. It is generally thought that the use of Estrogen cream as well is good, but it's pretty impossible to get in the UK, so we have to resort to crushing vagifem pessaries in oil, or soaking half an Estraderm patch in oil. After every pee use coconut or emu oil, or even Vaseline to isolate your skin from the acid in your urine.

    Anyway, you are among friends so every reason to be optimistic you can get it under control quite soon!

    Annie

    • judy02533
      judy02533 annieflipflop

      Posted

      Thank you very much for your very informative response.  I am glad to be a member of this forum.  I have already used some of the suggestions, and I am now taking notes from the discussions and will experiment with what helps me. All you ladies seem to have your own individual healing and maintence plans. You have figured out what works for you.  So I am going to learn how to control this also.  
  • kathleen65757
    kathleen65757 judy02533

    Posted

    I see a combination of both at a clinic in Melbourne. She should have told you where to put the cream even giving you a drawing and marked the relevant spots on there. 

    I was diagnosed with a biopsy to be totally sure.

    They do need specialise in this and if you can find a clinic would be good.

    if you can see white spots put the cream there. Also, if there are any itchy bits putmitmthere too. Another check is where you can feel any skin that is not smooth.

    All the best!

     

    • judy02533
      judy02533 kathleen65757

      Posted

      Kathleen, what do you mean when you say, any skin that is not smooth? I am waiting for a referral to a specialist.  But all this info helps me so much with the questions I will ask.  
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