1. Community
  2. Women's health
  3. Lichen Sclerosus

To biopsy or not

Posted , 4 users are following.

bennetta
bennetta

Sorry if this has been discussed before. We recently relocated and my primary care doctor mentioned offering to do a biopsy. When I was diagnosed they diagnosed me looking at it, and with the clob and elidel my symptoms decreased. I still deal with issues montly and use the meds and it goes away. Right now i'm having a flare up and wondering if I should rush in and have a biopsy. 

Can you be diagnosed when you are not currently presenting any signs? Is it worth having a biopsy? 

0 likes, 12 replies

12 Replies

  • Morrell1951
    Morrell1951 bennetta

    Posted

    I was diagnosed on sight by a gynae. In fact I figured it out by looking at photos online years earler and ignored it. I personally would not be anxious to have a chunk cut out and risk the Koebner effect unless I was afraid it was cancer.
    • bennetta
      bennetta Morrell1951

      Posted

      Thanks for the response! I think I'm going to avoid it. Like I said in other post, I worry that is what happened with LS to begin with. I had a tubal in my pubic area (where incision was) and a month later I was diagnosed with LS. I'm kind of worried the biopsy would make it worse. I'm managed now on the prescriptions so as long as it continues to work I'll be happy
  • judy04448
    judy04448 bennetta

    Posted

    Hi Bennetta,

    The only actuate way to diagnosis LS is with a biopsy.  It can look like many other diseases.

    BUT if your current system of management keeps you comfortable why would it matter?. Biopsy is painful, takes time to heal, creates another scar area that can contribute to more problems. It is your call.

    • margaret289
      margaret289 judy04448

      Posted

      I have had several health orefessionals say that what I have is 'obviously' Lichen Sclerosus, but have also undrgone 4 biopsy, which attempted to confirm the diagnosis - they all came back negative.  I felt that because it was negative that I was effectively shown the door, because what was (obviously) wrong could not be identified. It seemed for a while that everytime I changed consultant, or saw a registrar, they wanted to biopsy again.  I've started refusing.  Only if there were ominous changes would I now consent to have a biopsy of that specific area.  

      I rely on good management and being monitored regularly.  My recent gynae is great and really listens to what I am saying.  The fact that he does not know a great deal about this condition could be the reason, but I am confident in his approach and sure that he is not just treating blindly to con me into thinking that he is doing something rather than nothing.

      He has booked me in for 4monthly consultations and I am content to travel 30 miles to see him.

      I would question question question:  why do I need a biopsy?  What will happen if the result is (as in my case) negative?  What will happen if positive?  Will my condition be monitored whatever the result? 

      The best of luck and be strong!

    • bennetta
      bennetta margaret289

      Posted

      So even though you have it, you had a negative biopsy result? That's what I was concerned about. I think I'll request to continue treatment as is and avoid the biopsy. I guess I still hold out hope it could be something else...allergy to toilet paper....anything but this.
    • bennetta
      bennetta judy04448

      Posted

      I'm wondering if my PCM suggested it because she doesn't believe it is. She was kind of taken back when I said I had it, as I'm 28 (diagnosed just after 27). She said well that doesn't usually occur in premenopausal women. She said if I want to just continue treatment I can. Which I think I'll do for now.

      I had a tubal and they had to make an incision in my pubic area, a month later I was torn and white and diagnosed with LS. I always wonder if the tubal triggered it in the first place.

    • margaret289
      margaret289 bennetta

      Posted

      I think maybe that because my GP was on the case very quickly and I had started the Dermovate (Clobestasol in the US - I don't know where you are in the world) it actual controlled it at the deep skin level, so that it didn't show up on the biopsy.
    • Morrell1951
      Morrell1951 bennetta

      Posted

      I've had it since I was 22 and lots of women (and Liam) here were young, too. Look up the Koebner Effect. You'll see that any cutting can trigger it, but whether it 'causes' it, that's another matter.
    • bennetta
      bennetta Morrell1951

      Posted

      How long have you had it now? If it's been awhile, have you noticed any long term effects from the steroid?

      The incision wasn't on the inside at all, it was up almost to my panty line, would that still have brought on the Koebner effect?

    • Morrell1951
      Morrell1951 bennetta

      Posted

      My gynae switched me from clobetasol to tacrolimus after 18 months, so I wasnt on it long term.

      I don't know exactly how location - specific the Koebner effect is.

    • bennetta
      bennetta Morrell1951

      Posted

      I tried a tacrolimus prescription (protopic) and ended up having an allergic reaction sad anyway thanks for the responses!
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.