Biopsy and hereditary?

Posted , 8 users are following.

I wanted to ask the group if their doctors are doing biopsy every four years on them? My doctor said this should be happening. The first time I had one when I was diagnosed has been a problem area for the last 5 years. Now today I am having another one and not happy about it at all. I know we have a greater risk of vulva cancer but I asked if she saw anything that concerned her and she said no. I just can't believe that every 4 years we have to get cut up in an already super sensitive area. Also my twin granddaughters who are only 5 now have this. It just breaks my heart. Also the doctor that diagnosed them said that up until recently when small children (girls) came in with problems in that region doctors thought it was sexual assault. Poor families! Anyway I would really appreciate any thoughts or advice on these regular biopsies every 4 years. For those of us that have it pretty badly I wish doctors were more concerned and gave more advice on what to do. Thank you!

0 likes, 13 replies

13 Replies

  • Posted

    Hi galen

    I don't know if you are Stateside.  I'm in the UK and was reffered to a vulva cancer specialist, as my gynaecologist was concerned about the colouration of my LS.  She immediately on examining me said I did not have cancer.  She has said it is not necessary to have a biopsy or that it is hereditary.  Only to have my regular smears.  Sadly if you have it there is no cure.  It is even more sad that there is no education regarding this disease,  which my specialist says is more common than we realise.  In which case the question needs to be asked of the medical profession, why the hell does hardly anyone know about it.  Especially your average doctor.  

    Wish you all the best.

    domino.

    • Posted

      Thank you Domino for your advice! Interesting that you have a specialist for it. I wish I did. I had it yesterday and we will see what the results are. I think it is so strange that my granddaughters have it too. I am wondering if something changed in the making of absorbent diapers and feminine pads. I used pads for years as I had such terrible cramps. I wish they could figure it out but my doctor says it is "just a skin problem". I think I am changing doctors 😁. Thanks again!

  • Posted

    I have been going to vulvar specialist for three years now and only biopsy I had was the first time to confirm the diagnosis. She said that she would only do another biopsy if saw something that concerned her. I see her every six months so she can keep a check on things. I am so sorry about your granddaughters. I was in late 60s when I was diagnosed, I can't even imagine having something like this so young!

    • Posted

      I know, I am hoping with puberty it will go away. They are identical and for both of them to have it so young. I guess it is not hereditary but I wonder. I had the bioposy already and will see what the results are. I wonder if doctors and really know enough about this. Thanks!
  • Posted

    Galen, Are you in the UK? I have yet to have a firm diagnosis of LS but as I have fusion and itching (or more like buzzing) and have had for 4years my GP and gynae believe this is LS. There has been no mention of a biopsy to determine this at all. So it seems drastic to be having one every 4years? Can you refuse?  That is awful about your grand daughters but my GP has said it can disappear in the young, usually around puberty. Let's hope that's right. With all I read on here, we all get mixed advice from our medical system.

    • Posted

      Thanks and I really hope it goes away for them when they reach puberty. I am in the US and wondering if they have a heavy hand in this area. Thanks for your comment and care!
  • Posted

    Hi

    Are you in the US? Im in the UK and my doctor didn't even do biopsy to confirm LS as she said she could tell by looking at it.  As my is in remission (touch wood!) at the mo I have actually been discharged and don't need to go back unless I start having further problems.  I guess maybe its how bad you have it. Also in the UK the NHS won't do anything unnecessary (or even necessary a lot of the time!!!).

    Best wishes

    Claire

    • Posted

      Thanks Claire and believe me I prefer how the UK is treating LS than the US at this time. It seems they are more careful and not so bioposy happy. Plus it seems like with having LS you can have a vulva specialist there? I don't know if that is the same as a gynecologist but I might look into it. Thanks again and take care!

    • Posted

      My specialist is a gyn who had further training in diseases of the vulva and did a fellowship concerning LS. The first gyn I went to had no idea what was going on and on recommendation of a nurse practitioner I know I went on internet and found a vulvar specialist near me. When I told my friend who I was going to see she said that is who she would go to if she had this problem. The difference between her treatment and the gyn I first saw was extremely different. The first gyn had no idea about LS and then after biopsy showed that was what I had, he gave me prescription for clob and said I didn't need to see him anymore, just use the clobe if I had any issues. The specialist I see now walked me through how much and how often to use the clob and checks me every six months to make sure all is well. I am so glad I found her. I have been in remission for almost three years now and use small amt clob once a week and continue to see specialist every six months. I am in US also. Hope your granddaughters are doing okay and I encourage you to look for a specialist. Good luck. By the way the only biopsy I had was to confirm diagnosis. Specialist said no more are needed unless she sees something that concerns her.

    • Posted

      I now understand why she wanted to do a biopsy. I had looked at myself last week and didn't notice anything. It is so hard for me to do this. I just ordered a mirror with a handle. I just looked and I have dark purple streaks. Kind of freaked out right now. Thank you so much for your advice! I am going to request one.

    • Posted

      some of my vulva is dark in color and purple. When first noticed it I immediately went to see my specialist. She told me that LS can make vulva look bruised and be dark purple and not to be concerned with it. So please don't be freaked out. I know that is easier said then be done but the purple streaks could just be from the LS and nothing more sinister. I will keep you in my thoughts and keep my fingers crossed that your biopsy comes back ok. Please let me know how you make out. It is hard having this disease but at least with this site we have others who understand what we are going through.

  • Posted

    No my dermatologist has not said this will be happening I've had two done  on problem areas I would say you don't want one fine until there is a problem area it's your body after all 

  • Posted

    I haven't heard of regular/every fifth year biopsies.  I hope it is not needed.  One for diagnose purposes was enough for me.  I would ask extra questions about it if I were you. 

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.