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Ulcers and blisters

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NeverGiveUp-
NeverGiveUp-

Hi everyone, I am new to the forum. I got diagnosed with Lichon Sclerosus in june where the GP gave me a steroid cream which seemed to get everything under control. I fid not have a biopsy so no firm diagnosis.

Anyway this week following sexual intercourse after a 6 month break my genital area is covered in ulcers/ spots with like blister heads. If I urinate it is complete agony. Anyway Ive been to out of hours GP today due to the pain and she has saud its not Lichon its herpes! As you can imagine I am confused and scared she said you never get ulcers etc with lichon. I just wanted to see if anyone else has suffered like this or not with this condition or been misdiagnosed with herpes? Im bring tested obviously for this. I would be grateful for all your advice. Thankyou

0 likes, 28 replies

28 Replies

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  • Guppy007
    Guppy007 NeverGiveUp-

    Posted

    Hi Victoria, many of the doctors/ specialists don't actually understand LS all that well...incredible as that may sound. 

    I am betting that you DONT have herpes and the sores/blisters are all part and parcel of Lichen sclerosus. The fact that she said you never get ulcers with lichen proves how ill-informed she really is!!! 

    Ulcers, sores, bruising, blisters, rashes, 'paper cuts' are some of the unpleasant symptoms of LS.  What you need to do is find a Vulva Clinic where you will get the correct treatment from people that know what they are doing.

    • NeverGiveUp-
      NeverGiveUp- Guppy007

      Posted

      Thankyou so much for replying I have been so upset all day. They have referred me to a sexual health clinic to test for herpes. Is a vulva clinic different. Ive never had anyone do a definate test but my cream has always worked but this time Im struggling to apply it as stings so bad. They have put me on antibiotics for herpes already. If it turns out to be my Lichen sclerosus how do people actually cope with sexual intercourse when the pain after and ulcers etc are like this.
    • Guppy007
      Guppy007 NeverGiveUp-

      Posted

      Hi Victoria, I would hold off taking the antibiotics as you really need a firm diagnosis of herpes before taking it anyway..which I honestly doubt that you have.  When you go to the sexual health clinic make sure you explain that you have a diagnosis already for LS and you think that is what the ulcers are. Its possible they may want to give you a biopsy.

      I would not apply the cream on the ulcers, it is far too strong.  Your best bet is bathing in a sitz bath, pat dry, and then apply a baby bottom cream like Desitin.  The key is to apply a tiny tiny amount and hopefully, that should help.

      The reason you are having these symptoms is that you are flaring from your LS.  Cut out all sugars and you will likely see an improvement.

  • susanCM1
    susanCM1 NeverGiveUp-

    Posted

    Will get back to you. Lost first reply. I have L S and Herpes. Herpes first doze was just awfu.l

  • karen23320
    karen23320 NeverGiveUp-

    Posted

    Victoria- I had alot of discomfort afyer sex in March abd then again in April and peeing was horrible. I went to Dr in May be ause I had “blisters”, pain in clitoris, pain in urinating and felt like a UTI. Based upon what she saw, My Dr said it looked like Herpes, possibly from oral sex if my husbabd had a cold/ cold sore at the time? She swab tested me for Herpes, Syphillia, etc wtc- ALL NEGATIVE! Went back June  5 in mch worse shape, she told me to come back the next day tor a biopsy, did SIX spots! All came back positive for LS- so do not believe that your Dr knows everything, get tested, get a biopsy if needed and fi d out wgat it is so you can get treated properly- Dr are NOT GODS and they don’t know everything! 

    I used Emuiad Maxx for 10 days, the Emuaid regular, all blisters, lsiins, ulcers/ rawness hone, all pain and itch gone. Did not get steroid until 6 weeks later due to screw- up at Dr . Office. Steroids rubbed- in for 90 seconds attack the t- cells, which are our own white blood cells,  attacking our bodies. Olive oil, coconut oil, essential Oils, yes, v- magic, emuaid are all good for soothing itch and pain and moisturizing, but do not TREAT the disease! I was against the steroids because I was afraid of thinning skin and side effects, but Dr Goldsteins video explained that we hv to combat the disease, not just treat the symptoms!!

    Good luck to you! 

    • NeverGiveUp-
      NeverGiveUp- karen23320

      Posted

      Thankyou for replying. I will insist on a test I just wish GPs would not presume. Im now on strong antibiotics for herpes and spent all day upset for possibly no reason. Problem is I cant get a sexual health appt for over a month so will have to go back to GP I think. Thanks again.
    • susan43705
      susan43705 NeverGiveUp-

      Posted

      Hi VIctoria,  So sorry to hear about your flareup.  I too have had blisters and lesions and was not diagnose with herpes.  Your doc could have swabbed your lesions and sent it to the lab for results as well as a blood test to test for herpes.  Also, if you have herpes, antibiotics are not what is normally prescribed, only Valcyclovir which should help in a matter of days.   One of my doctors diagnose my LS as cancer, then I went to a gyn who biopsed me and it came back LS.  

      Don't fret about the herpes, it is probably LS.  Anyway, good luck and stay in touch.  We are a good group here.  

       

    • NeverGiveUp-
      NeverGiveUp- susan43705

      Posted

      Thankyou no I got it wrong they are antiviral tablets she has put me on. Im not sure if to take them or not as no swabs been done and dont want them harming me. I will defiently stay in this group Ive learnt loads about LS already. And everyone is so kind to respond I felt very alone yesterday now feel much better.
  • julia2017
    julia2017 NeverGiveUp-

    Posted

    I was misdiagnosed to have herpes for several years and after I looked up the rest of my symptoms online, I discovered through research it is LS. I went and got biopsied at my own pleading because they did not think it was that and it IS LS and not herpes. I have the deterioration in labia and wish I had researched sooner.
    • NeverGiveUp-
      NeverGiveUp- julia2017

      Posted

      Thanks for replying. Im glad you insisted on them checking. Ive never looked down there not really something you do. But looked today as needed to know what was going on and I can see that my clitoris area is now fused it wont retract anymore. Cannot quite believe it I must keep looking and checking for changes.
    • julia2017
      julia2017 NeverGiveUp-

      Posted

      I have such an exposed clitoris and the hood has pulled back and fused. Most painful for even walking with underwear or workout clothes against me. I hope my appointment with Doctor Goldstein will result in him fixing this. I dont know if it can be done in my first appointment or not. I have no idea if the flattened and fused labia near my vagina can be unfused. If anyone who reads this has had the procedure could you let me know?
  • Guest
    Guest NeverGiveUp-

    Posted

    I would take the acyclovir/antiviral it would be worse if the herpes came back as a positive diagnosis and you hadn't taken. The evidence is that if you have herpes infection and you hit it hard quickly with acyclovir it can be very effective. I doubt taking it would make your LS worse so better safe than sorry in my opinion. 

  • always_somethin
    always_somethin NeverGiveUp-

    Posted

    I have both LS and genital herpes. both confirmed by tests. take the acyclovir, it wont harm you. It will lessen the outbreak if it is indeed herpes.

    And dont freak out. Herpes isnt as bad as the stigma. And to be honest... it doesnt affect my life what-so-ever. LS is worse in my opinion.

    • NeverGiveUp-
      NeverGiveUp- always_somethin

      Posted

      Thanks saw another doctor who thinks its herpes so had test and awaiting result. Thanks for your responce x
    • NeverGiveUp-
      NeverGiveUp- always_somethin

      Posted

      Thankyou still trying to get my head around it was convinced it was LS. How long does ittake for the ulcers to clear or at least stop stinging. I started with these last tuesday so a week and been on meds since Saturday so fifth day tomorrow
    • always_somethin
      always_somethin NeverGiveUp-

      Posted

      The first outbreak is the worst. id give it a full two weeks to be cleared up.  I had two consecutive outbreaks in a row the first time around. my body was like... uhhhh what do i do? LoL. i was terrified that this was what it was going to be like for the rest of my life... i was wrong.  After my first onset of it, i think i was about 24 years old (which was 12 years ago or so), i think ive had 4 or 5 more "outbreaks" since then which consisted of like... one tiny lesion the size of a pencil dot... those werent painful, just itchy and resolved within a week. a menstrual cycle is more annoying than the outbreak. i do not take acyclovir for suppression, i only take it when i feel an outbreak coming on. havent had an outbreak in over 2 years. i guess your body just gets used to the virus and wah lah, its no longer even a thought in my mind.

    • NeverGiveUp-
      NeverGiveUp- always_somethin

      Posted

      Good to know it hopefully gets eaaier. Not sure on the 2 week though Im in agony going to the toilet cabt even put tissue near it. Ive got to return to work tomorrow and dreading it as walking and sitting so painful
    • always_somethin
      always_somethin NeverGiveUp-

      Posted

      i understand that completely. put some vaseline on the lesions during the day, it will help with the stinging.. but same with LS, sleep with no undies on and no vaseline. let it air out so to speak LoL. Also, maybe ask for the topical of zovirax... its a form of antiviral cream you can place on lesions. some doctors wont prescribe it because they feel the ulcers need to be "dried out", but this drying out they speak of never happens on the lady parts and it never "scabs over" down there. Those statements are only true when the outbreak apears on the lips or other areas of the skin. and i truly believe the zovirax helps speed up the process when used along with the acyclovir.

    • NeverGiveUp-
      NeverGiveUp- always_somethin

      Posted

      Ahh ok thanks that is what I was waiting for was the scabs. Ok thankyou will try that. X thanks for all your help and advice its scary when you just read and read on the internet
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