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What type of Dr to you go to for LS?

Posted , 9 users are following.

karen23320
karen23320

I was diagnosed with LS by my gyno after 2 visits, multiple tests for STD’s and 6 vulvular biopsies (All done at the same time). Results were given to me, over the phone, by a nurse, as my Dr went on a six week sabbatical. No referral? No prescription? No treatment plan? I hv been handling this on my own for 13 days with YOUR help! ❤️ I watched Dr Goldstein’s video and he said this is a quandry. Gyno’s get 20,000 hours training for their license, 45 MINUTES of that training was on vulvular dermatosis. A Dermatologist checks over your skin, but tells you to keep your panties on because they do not have the knowledge of female genitalia, or the right equipment ( such as a speculum to check for LP, or colposcope microscope to look at V) , so where do we go? My gp never even has me take my clothes off, listens to my symptoms, Makes a diagnosis, writes a scrip- slam, bam, outta there.  Should I look for a Vulva Specialist when I get home from vacation? I live in a major City ( in Texas), so there are bound to be some  there. Thoughts? Thank you! 

0 likes, 9 replies

9 Replies

  • claire12259
    claire12259 karen23320

    Posted

    Hi Karen. 

    In case u haven’t come across it yet diet can play a major role in your LS. Basically give up all types of sugar and you might find your symptoms dramatically improve. Also going dairy/gluten free can also help. LS is thought to be autoimmune so looking at it from that angle could help too. I have other AI disorders too so have been investigating “leaky gut” syndrome. Good luck on your journey xxx

    • karen23320
      karen23320 claire12259

      Posted

      Thanks Claire.  I am adjusting my diet to exclude sugar, carbs, wheat and eating low oxalate- will be good for my kidney stones too. I am loathe to give up dairy as I need the Calcium to bind to the oxalates to rid them of my body so I don’t get another stone. I have also given up red wine ( at least during this flare up, -hard to do as a winophile) as per my conversation with Nancy I am continuing my Ultra Woman vitamin and hv ordered more Vitamin D3, K2, Magnesium, Boran, Calcium and Folate. 

      I am also in touch with Baylor College of Medicine trying to get an appointment with their vulvular specialist. All of the information on here has been great! Thx so much! 

  • Guppy007
    Guppy007 karen23320

    Posted

    Hi Karen, it is worth going to see a Vulva Specialist because they should have experience of LS even if it means traveling far for the appointment.

     

  • Guest
    Guest karen23320

    Posted

    I was diagnosed by my OBGYN. She prescribed the steroid cream but I rarely use it. I stick with the castor and lavendar oils. I would suggest finding a new OBGYN!
  • laur3333
    laur3333 karen23320

    Posted

    I wonder the same thing. My doc prescribed steroid cream ( which I won’t use) and I asked if I needed a follow up, they said no. I wasn’t even sure what it was, as nothing in writing but I called back to find out.

    Finding my own way through this, but itching has been WAY less with using PH wash once a week and just clear water rinse the other 6 days. Idk

    I have vitamin E oil , should I use that ? 

    I itched for 6 months and 4 dif docs to get a diagnosis. 

    • karen23320
      karen23320 laur3333

      Posted

      I hv read of several people using Vitamin E and they seem to like it. I am using what I happen to hv on hand- Medline Moisture barrier with Aloe Vera, Vitamins, A. D and E each time I pee. Been using Eumaid maxx for 11 days and kesions are healed, pain is hone, it hing at a 1- I’ll take it. Also cut out sugar, wheat, carbs. Red wine and eating low oxalate and taking vitamins as per Nancy. 
  • lynn_78641
    lynn_78641 karen23320

    Posted

    Karen, that sounds like you have not the right gyno. Usually at each hospital there is at least one doctor who has an expertise in LS. At both Kaiser where I used to go and now Ucsf in Northern California there are several people who know about it well. You may need to ask your doctors group if they can refer you to someone or if your medical group has an online presence showing each doc’s specialty that might help. Sorry you have to deal with this but you should complain about the poor handling of your case. Not sure why they had to do so many biopsies, sounds like negligence to put you through that. An expert in LS can simply look at your skin and know that you may have it, that’s how it happened to me, but I guess it depends on your symptoms. I had a white patch that was classic  LS. This is a great forum but can also be overwhelming so take your time reading through and we are here for you. The main treatment according to western Medicine is a very strong topical steroid that needs to be used VERY sparingly and not used too much, but I personally feel it is just 10% of what is needed, with the rest being natural and diet related. Hang in there and find a new doc who will treat you with respect! 
    • karen23320
      karen23320 lynn_78641

      Posted

      Thanks Lynn- Up to this point I gave been with my OB- Gyn for 12 years and love her! My two daughters. 22 and 19 also see her. I think the timing was bad as she was leaving to open a Gyn only office with a six- week lag. I am in contact with Baylor College of Medicine to try and get an appointment with their vulvular specialist. I hv been taking notes and hv many qyestions for  the Dr. I agree that I don’t just want a clob script abd sent on my way. 
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