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Why I want to change doctors

Posted , 8 users are following.

jules1100
jules1100

In 3 weeks I have an appointment with a gyno who specialises in vulval diseases and I'm hoping it goes well as I'm not happy with my current doctor. He's a specialist gyno who seems familiar with LS but his approach and treatment plan is making me highly anxious.

I was put on steroid twice a day for 1 month then once a day for another month. He tells me to stop the steroid as all is looking better (despite the white patches still being there and now my anus is playing up) and to only apply steroid when I have symptoms or a flare up. He now has me on topical estrogen ointment 2x a day - which is fine as the skin needs some TLC badly. But the approach with the steroids makes me anxious. Firstly the white patches are still there and secondly I was asymptomatic for god knows how long before my gyno happened to notice white patches on my vulva when I went to see her complaining of an irritated vagina after tampon use. I had no itching or anything. So how will I know when to apply the steroid? The LS could start running rampant again without me knowing.

After watching Dr Goldsteins video I'm under the impression that the steroid should be applied 1-2 times a week as maintenance.

Hoping the new doctor can be a little more clear. I want to feel confident in a treatment plan not unsure and anxious.

1 like, 16 replies

16 Replies

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  • archemedes
    archemedes jules1100

    Posted

    It is a good thing to change your doctor if you are not 100% happy with the one you have got.

    The worst that can happen is that the new doctor will either confirm the initial diagnosis and treatment, or most probably look at the issue from a fresh and more enthusiastic perspective and alter the treatment to one that is more effective.

    If this new doctor doesn't cut the mustard, then don't be afraid to change again until such time as you feel 100% that some progress is being made.

    The best of luck. 

    • archemedes
      archemedes

      Posted

      What I didn't say before is that Dermovate is a very potent corticosteroid and some doctors do not like to prescribe this as a long-term treatment.

      Have you tried Eumovate which is also a corticosteroid, but is not quite as potent as Dermovate and is ok for long-term use?

    • ChrissyC
      ChrissyC archemedes

      Posted

      Yes you can understand why non specialist doctors are wary of prescribing long term use of Dermovate really. But the tiny occasional amounts used for maintenance a la Dr Goldstein should be fine.
  • anita1951
    anita1951 jules1100

    Posted

    I found that my vagina has a burning sensation when having a flare up.The steroid cream makes the skin very fragile after a little while, and tends to tear even wiping yourself after urination. I would not use it after the symptoms have cleared , only when you have a flare up, I find using a baby nappy cream with zinc is best to apply after urination as it helps repair the skin.

    If you can change doctors do it, if you dont feel happy with the one you have.a second opinion is always helpful

     

  • hanny32508
    hanny32508 jules1100

    Posted

    A second opinion from another doctor may be a good idea?

    Has you present doctor not told you about a 'maintenance level' of Glob - twice a week a thin layer. ?

     

    • jules1100
      jules1100 hanny32508

      Posted

      No he didn't suggest that Hanny. I actually had

      to repeat his words when he said stop the steroid. I was like.. Ahh ok, are you sure? He said go by the symptoms. Specifically itching. Which is something I've never had. I get some burning and a sense that the vulva skin/perineum is irritated and hot, especially after walking/sitting for a long time/wearing tight pants etc. My other concern is I want to attempt intercourse but worried I'll tear. Hoping the topical estrogen I'm on will prevent.

    • hanny32508
      hanny32508 jules1100

      Posted

      Topical estrogen will help with the flexibility of the skin, so I was told.  

      Sitting for long periods of time is not my best activity either. Burning hot and irritated skin often means that it is time for a thin layer of glob.  (I go from application to application twice a week)  

      Intercourse only when no burning or irritation is present and then in such a way that there won't be too much friction.  Or you will be back to burning and irritation.  Afterwards make sure all is rinsed well and coconut oil applied.  Another suggestion as well - apply coconut oil to partner.  

  • Roselee
    Roselee jules1100

    Posted

    I think the doctors from the UK do say once under control come off Dermovate and use as and when. I see a vulva Gyny who is a cancer specialist, and I would think he should know, but I also get confused as others doctors say maintain. I am always thinking about getting a second opinion,as I think the gyny have a text book procedure to follow and they don't seem to be looking into updating there knowledge with LS .
    • ChrissyC
      ChrissyC Roselee

      Posted

      You are right Rosalee. When my gp first referred me to a general consultant at my local hospital he took a biopsy and as a result told me I had LS. He then prescribed Dermovate, explained how to use it and told me I would soon feel relief from my symptoms. I told him that I don't have any itching or discomfort (I don't, I'm asymptomatic, it was just whiteness that alerted me). He looked at me like I was an idiot because that didn't fit in with his script. Then chose to ignore me and carried on with his script. And so he told me that once I had my symptoms under control to reduce and then stop the Dermovate. If I 'felt' my symptoms returning to start the ointment again until things improved, reduce, stop, and so on. I told him again that I don't feel anything but he just ushered me out the door, his script completed. After reporting back to my gp she then decided to see if she could find anyone else I could speak to who might have more knowledge than either herself (as she fully admitted) or the so called consultant. She researched and rang me herself to tell me she'd MADE me an appointment at a Vulval clinic in a different area. It was there that I finally got answers to questions, confirmation that people ARE asymptomatic like me and that the Dermovate was maintenance for life.
    • ChrissyC
      ChrissyC

      Posted

      Sorry, Roselee not Rosalee
    • jules1100
      jules1100 ChrissyC

      Posted

      Wow I relate to your experience Chrissy. It's very frustrating. Glad you changed and that you found answers. I'm sure that helped you feel more at ease and in control of treatment plan.
    • ChrissyC
      ChrissyC jules1100

      Posted

      You get more symptoms than I do Jules, I literally get nothing, so you have SOME indication of a flare up. Other than that the only way to check on developments is to use a mirror at regular intervals as I do. Or take a photo for comparison to the previous look. Interested in how you get on with your new specialist - do keep us informed. Good luck!
  • Roselee
    Roselee jules1100

    Posted

    Same as you Chrissy I don't have and itching or burning, and my gyny said same use as and when but I said I don't have anything to tell me when, so off I go with a leaflet, and a return for 12 mth return as he put on my notes she is managing well. He is a Vulva specialist who you would think he would have lots of LS patients. 
    • ChrissyC
      ChrissyC Roselee

      Posted

      Yes you would. It does sound as if he's still working from an old text so to speak. It will be interesting to see what Jules' new doctor has to say.
  • Morrell1951
    Morrell1951 jules1100

    Posted

    My gynae has 1000 LS patients and she said Dermovate for life, twice a week. After 18 months and unsatisfactory (for her) improvement she's got me on Protopic with an appointment to see how it's going after three months. I believe I wore out corticosteroids over thirty years treating psoriasis, so I still believe in Dermovate for most LS patients.
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