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Intense itching LP vulva new diagnosis

Posted , 7 users are following.

donnap71
donnap71

Hi all, you have my sympathies with this condition - I have been going through a second flare up and dermovate is not working. Now been given protopic as not responding to steroid creams. I need advise on the itching which is literally driving me mad and the lack of sleep is interfering with my work now sad any advise on creams, diets etc! Please help!

 

2 likes, 19 replies

19 Replies

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  • luchanadonna
    luchanadonna donnap71

    Posted

    You poor thing!! Unfortunately I have no answers for you....but I am sure someone will know. I have gotten some good advice in this group.
  • AnnieWilhemina
    AnnieWilhemina donnap71

    Posted

    Hi Donna sorry I can't help you either but you have my

    sympathies. I try to avoid dairy apart from plain Greek yoghurt

    And between us (plenty fresh air circulation). Hopefully

    someone else will be able to suggest or give you more advice

    • donnap71
      donnap71 AnnieWilhemina

      Posted

      Hi Annie - thanks for the advice (and to all others too) I am trying to cut out sugar (very difficult with my sweet tooth) and will try dairy too to see if that makes any difference. Stress does seem to be a factor too and not surprising considering I am doing a PhD with two children :S

       

  • Guppy007
    Guppy007 donnap71

    Posted

    Hi donnap , if you post this also on the Lichen Sclerosus forum on this site, you will get a lot of help there from the many women with the same condition which specifically affects their Vulva. Do you know what your diagnosis is, because there is Lichen Sclerosus, and Vaginal Lichen planus, they are both from the same family, but they are different. 

    ​ If you are not having any luck with the creams then I would start to look at your diet, sugar is the worse for Lichen Planus problems, and in some cases Gluten and Dairy.  

    A tip for when you use the bathroom is to always spray your undercarriage with a little water that has a pinch of bicarbonate of soda, or salt added, pat dry and apply something lubricating, something like coconut oil, emu oil or even vaseline, this should help a lot.  For the intense itching, Witch hazel helps, as does Aloe Vera, but do take a look at some older posts on this site as there is a lot of information here.   In the Lichen Sclerosus forum there is a "New to LS start here" thread, if you look at that there is a Webinar which is worth watching by Dr Goldstein, an expert on LS, it lasts an hour, but it should help you a lot.

    • donnap71
      donnap71 Guppy007

      Posted

      Hi Guppy, thanks for your reply - I had a punch biopsy which suggested both lichen planus and early sclerosus with excema too (nothing like making things complicated). I have tried Aloe Vera for the itching but it did not help so I may give witch hazel a try and I will most definately watch the Webinar. I cant believe how much this is overtaking my life at the moment. it really is driving me crazy...!

       

  • jana34029
    jana34029 donnap71

    Posted

    I just had a flare up and the doc put me on Clindomycin every other night.  In addition, I take hydrocortizone suppositories every other night as well.  Along with Clobetasol gel inserted with a dialator for 20 minutes nightly.  I am on the Vivelle Dot Patch - a hormone replacement therapy that I change twice a week and she added Premarin pure estrogen cream inserted in my vagina twice weekly in the mornings.  Needless to say... lots of sh*t goes up there... but I'm not itching.  My flare up caused bleeding of a LP lesion...  She said most flare ups are due to stress...
    • donnap71
      donnap71 jana34029

      Posted

      wow - that seems like a lot - I've not been offered many alternatives yet although the next stage would be autoimmune suppressents in a tablet form. Interestingly, you mention hormone replacement - I am perimenopausal (although my Drs cannot diagnose this exactly) and all this has started since I stopped taking the contraceptive pill last year in May. Are hormones related to this disease?

       

    • jana34029
      jana34029 donnap71

      Posted

      Yes!!!  Absolutely!  At least Vaginal Lichen Planus is.  It makes a huge difference.  When mine was first diagnosed, I had surgery to open my vagina back up due to all the lesions that had formed and adhered together. For a long while I just thought it was due to menopause that sex had become painful.  After 3 gynecologists, I was finally diagnosed.  My doctor is one of the best and specializes in vaginal diseases and cancers.  I feel very fortunate to have found her!  I don't know where you are located so that makes a big difference too.  You may want to check into a hormone patch or some other form of HRT...  I hope you get some relief soon!  I know what you are going through!
  • kokkie
    kokkie donnap71

    Posted

    Dear Donnap71,

    I wish I had some answers for you, but I only have the Oral Lichen Planus. It sure sounds like you are going through hell with LP vulva, so sorry for you. Not to mention having to go to work with no rest at all. I am in SA and my disability policy declared me unfit for work with OLP, even though they revise it every year. The problem I face with this is, I am losing my job, because the Company cannot go on without a new worker in my place for this long, it is understandable. Therefore if the policy no longer cover me I will be without work. This is hard on my age, but I hear you mention having to go to work and only slept 3 hours. I know how very hard this can be, because it does not happen once in a while, it happens too often, causing more stress, that is very harmful for you. I went through this many days in a senior working position, getting red face flashes, on high doses of cortisone with all its side effect and my heart that was running away. I could hardly talk and smile it was too painful. At work no one believed I was sick, cause before this I never booked off sick and I worked there for twenty five years and all of a sudden in 2014, I was hospitalized very often. All my co-workers all of a sudden became the best doctors with all kinds of crappy advice that made my days even worse. They were shocked when the policy declared me unfit for work, but nothing could make up for the hell I went through at work. I do hope for your sake that you can get the rest that your body need now, it is very important. Take care and look after yourself.

    Regards,

    Kokkie

    • donnap71
      donnap71 kokkie

      Posted

      Thank you Kokkie for your kind words - I am doing a PhD and coming up to my final year - I am considering taking a break in my studies due to this but it's difficult because I am hoping to have a lectureshi job lined up for me once I finish and to delay may cause issues. It's really difficult and I'm quite isolated with not much family support - I'm so glad I've found this forum where I dont feel so alone with this horrible condition.

       

  • Sasr24
    Sasr24 donnap71

    Posted

    Hi donnap71!  Cornstarch!  I have LP & OLP, and it's still active, though right now it is mostly in my mouth.  I have it vaginally but currently it doesn't bother me.  I have had flareups vaginally, as well.  Painful ulcers that felt raw.    Cornstarch helped me so much.  I used a throwaway cotton pad to apply heavily directly to the affected area.  I had to do it several times during the day, even at work.  (Yes, it's a little messy.  But it was worth it.  I always used a wet paper towel to clean the little that fell on the floor.) I carried a little in a sealed container with some of the pads.  This saved me.  Nothing else even came close. 

    I don't know what the connection between hormones and this illness is.  My OLP came back full force two years ago.  A year ago, I stopped hormone replacement as it was the culprit for my migraines for 15 years!  As soon as I stopped hormones, the migraines just disappeared.  (I have the awful flashes now but I'd rather have them than migraines and the migraine meds were expensive.)  So I have had LP & OLP while on and off hormones.  Also, I have been on an immune suppresant since April, 2014.  I don't have purple spots on my skin any longer, and it has helped OLP tremendously.  I can eat without pain now.  I have noticed the ridges on my fingernails are worsening, which troubles me.

    Now I'm researching other things to try, including trying a gluten free diet next as I want to be off medication sometime next year. 

    I am so sorry for you and everyone else with this illness.  It is so frustrating because there isn't a cure.  And what works for one person doesn't always work for someone else.  Let me know if the cornstarch helps you.  I hope you get relief.

  • kaleani75551
    kaleani75551 donnap71

    Posted

    Hi Donna - i have it too 'downthere' in addition to oral.  Just saw the specialist this morning, she looked inside my mouth and said I did not need a biopsy to determine it is OLP she knew it was it, and so do I and I am not a doctor.  She said she sees a lot of patients affected with it.

    Next week I see my OBGYN to take a look at the genital lichen, mine does not itch, i have no symptoms other than the way it looks which is typical of GLP - according to the photos i see online.

    about dairy:  i eat a lot of yogurt and cheese and put cream in my coffee, so maybe the extreme itching you are experiencing is not due to dairy? Just thought i'd mention this.  Good luck with your LP😐

  • donnap71
    donnap71

    Posted

    Hello again all - a recent update I've been on protopic for just over a week and the flare up and subsided somewhat (what a relief) and I've also cut out sugar (not easy) but perhaos this has made a difference too. Anyone else on Protopic for vulva LP?

     

    • jana34029
      jana34029 donnap71

      Posted

      Hi Donna!..  the protopic is the same type of medication as I have been on.  It's a strong treatment.  I hope it works for you and you get some relief.  Mine is definitely better and hoping I get a long term relief this time but my doctor said it is definitely due to stress that I get flare-ups and it is auto-immune... parallels with your medications... I'm just glad you have a good doctor who is starting you on a strong medication to get it under control fast!
    • donnap71
      donnap71 jana34029

      Posted

      Hi Jana, I've been on a variety of things and this one seems to be working to keep under control so far although I've heard that once my body works out it is being 'fooled' I may have to switch to something else. My Dr warned me against drinking any alcohol with this med - any ideas why?

       

    • jana34029
      jana34029 donnap71

      Posted

      sorry, just getting to you.  hmmm... I do have wine sometimes but not every day.  I would ask your doctor why...
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