Lichen Schlerosus and HSV1(G) -- double whammy

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Thanks for listening -- this is the only forum I can imagine discussing this on.....

I have lichen schlerosus, and what I thought was my first 'flare' was actually HSV1 (genital herpes -- I had one small lesion).  LS is frustrating, HSV is humiliating.  So, I'm on this forum, and on the herpes forum, but would appreciate hearing from anyone else trying to address both issues.

It's been three months since my first HSV outbreak (one very small lesion, I easily could have written it off to LS).  Knowing they can present almost identically (an LS flare and an HSV1 outbreak) does anyone have any insights/information?

I would fuss at you if you were in the same situation, and saying the things to yourself that I am saying to myself......I know it's not a death sentence, but it's extremely hard to cope.  

And, it's actually a triple whammy.  I had my second in a row abnormal pap, so a second biopsy was done this morning (which means I have HPV, too).  The HPV will 'more than likely' clear, but until it does, I have the risk (albeit low) of cervical cancer  hanging out there.

Thanks for reading all this, an thanks for any information.  As always in this place.

 

1 like, 15 replies

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15 Replies

  • Posted

    What a crap shoot for you!  I don't have any flowery words for you.  I have LS and feel that my femininity has been taken from me.  I have had this cross for about 35 years .  I only hope you have very knowledgable doctors and that you feel comfortable with them.  That will be part of  battle. Wishing you all the best .

    Hugs

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  • Posted

    I had an HSV diagnosis at age 22 and I believe LS started after that. I never had another HSV outbreak down below (I do get cold sores after too much sun). I had HPV and two conizations in my forties (I'm 64). Getting regular checkups and having any dysplasia removed – this means the chance of getting cervical cancer is tiny. Think about how many cases of cancer are in people who haven't been checked until it's raging. We're under care now. We're good.
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  • Posted

    Hi Sabrina,

    Your not alone, I have the same three as you too!

    All I can advocate is maintenance and keep a close eye.

    Do you have a good dermatologist?

    Samantha

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    • Posted

      Samantha -- thanks.  I went to a dermatologist who had an off-putting bedside manner, and didn't educate me much on LS.  I wish he had given me a stronger sense of concern (he acted like it was no biggie whatsoever).  I could have learned more, and started being more vigiliant sooner.  

      I will keep looking, I think a vulvar specialist might be worth the cost (if not covered by my insurance).  

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    • Posted

      Hi Sabrina,

      If your in the UK you can google the NHS vulva dermatologists. There are about 60/70 across the country. I went into my GP and asked for a referral after looking up the closest one to me.

      Good luck and let us know how you get on x

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  • Posted

    I can totally sympathise with you, I have both LS and Herpes down below, doc said it is Herpes Simplex though. I have always suffered from cold sores. I had a total. hysterectomy 20 yrs ago so am saved from that worry. 

    It can be really distressing being so sore all the time and at times not knowing which ointment to apply.

    Herpes was only diagnosed this year and now I wonder how much of the cuts and sores of the past few years have actually been that and not LS. Whatever it is its bloomin painful and can make you feel really miserable. I do have quite a bit of atrophy but no fusing thank goodness, most of my soreness is around my perinium. I am planning on a visit to my GP very soon for check up which is what I've been told to do, I am one of the lucky ones with a GP who understands it.

    this forum is so useful for sharing stuff that we don't feel we can share with non sufferers. I use Emu Oil and/or coconut oils when I have no active sores to combat dryness and Dermovate or Zovirax as appropriate. 

    I have had about 3 weeks without any symptoms and have enjoyed it without checking every day or so, pretend for a while it isn't there, feels good.

    Hope you can get a small amount of comfort knowing you're not alone.

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    • Posted

      Pollyanne. (and all), yes, it does help to know I am not alone.  More than I can say.  This is a place where we can say what we can't say elsewhere.  

      I find fragrance free coconut oil, with a single drop of peppermint oil feels GREAT.  

      What does your doc have you doing to address the atrophy?  I have estrogen cream (once a week).  Minimal fusing, I'm hoping --thanks to the advice I received on this board -- to manage it, and minimize any further fusing.

      I know many many folks are dealing with much more extreme medical conditions, but this is still an emotional challenge I'm struggling to cope with.  

      This forum is a huge help.  

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    • Posted

      Yes there are many people with more serious illnesses but this is an embarrassing and worrying condition, the continuous soreness drags you down so let's not belittle it.

      my dermatologist was very good and familiar with the condition but gave no real advice about the atrophy, I get the impression that quite a bit of it is due to age, I'm 74, but you can't go round asking people who don't have LS if their bits have dropped off! 

      She seemed to think I'm handling it okay and suggests regular checks with GP?

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  • Posted

    Hello Sabrina , well i have exactly the same as you . I was diagnosed with herpes 24 years ago and LS 3 years ago but wonder if i have had LS a lot longer as , as you say the symptoms can be very simlar . All i can advice is use the cream Zovirax for the herpes , i find it very good . As for LS to be honest i feel negletcted by my GP it seems they are not interested in my plight because i dont have a partner . I use the Clobadem ointment perscribed . Hope you are ok , you will be but it is all very shocking at first! Good Luck sorry i cant be of more help.
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    • Posted

      Grrr... there's one to get me started on! Male Gynaes! they assume that the only downside of LS is how it restricts sex. What about how WE feel about ourselves? What about the discomfort? Sleepless nights? Itching?

      There are a few specialist Vulval Dermatology clinics in the UK that are familiar with LS, could you get a referral? Although one of the male gynaes I saw was at one of them, his assistant, a woman was marvellous.

      Sorry to hear you've got a tripple whammy. Much courage and strength to you.

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    • Posted

      Awww thankyou ! I know its like if i had a man it would be suddenly important i mean we cant have a guy having to go without now can we! I will try and get a referral but i am gonna have to pretend to my GP that i have a man .. ridiculous i know! confused

       

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    • Posted

      donna -- you have been very helpful, just by touching base, and making me realize I am not alone, and I will get help from this forum that will more than augment my doctor.  Thank you.
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    • Posted

      All of this has helped me understand just how overlooked women's health issues have been over the years.  Globally.......
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  • Posted

    Hello Sabrina and others

    Sabrina it sounds like you are going throug a lot with these three diagnosis. i read you reaching out for information, and i guess some understanding too. im glad you have because i have found this discussion helpful to me.     

    i started being treated for LS when i was seven years old, although at the time it was called "a rash". i continued to consider it an embarassing (and itchy, stingy,sore) rash till i was 42 when a GP finally recognised the conditon as LS.

    Then a couple years later Herpes as well.

    However until yesterday i have not had a flare up of LS for  - i don't remember clearly but it has been some years, prabably three with only occaisional mild episodes for several years prior to that. What a relief! What was i doing differently? Well at age 47 i received a diagnos is of celiac disease and stopped all gluten, then five years ago gave up sugar. My general health has also improved with these changes.

    Now im pondering what is behind this recent flare and the investigation has brought me to this forum. What i can see i have done differnetly is that in lthe last week i have eaten two foods that i know my body has reacted to in the past. And had a dose of flue. i have gut and immunity issues so im not saying this is a cause for everyone. i cant even say it is the cause for me - ther are  so many variables ! i just keep watching and noting. im glad of the forum for a place to share experiences and ideas, and give and receive support.

    Some of my learnings on the way:

    Only have sex when you really want to. (well that is good advice for anyone)

    For too many years i lived with the thought that because there is something physically 'wrong with the vulva' that somehow i am wrong, and that is bad, and i shouldn't be bad . . . .A string of unhelpful thoughts stimulating misereble feelings.  its been very helpful to me  to drop ideas of wrong or right here.

    Stick with the facts "right now my vulvas is sore. What am i/we going to do?" i think this leaves a lot more space for creativity!

    make sure you are very well lubricated before enjoying friction, or it probably wont be so enjoyable.

    if additional lubrication is necessary, be sure to use one that does not cause irritation.

    i wish i had known about LS before my babies were born. i would like to have given more attention to caring for the labia and perinium to help them be as supple and robust as they could be in their condition. And i would have liked to have an open discussion with my midwife based on real knowledge of what we were dealing with, so that she also could help me care for  my skin during the birthing.  i don't know what that would look like; but i imagine some potentially useful ideas could come out of such a discussion.

    good wishes

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    • Posted

      Thanks vikki -- great insights.  

      My issue right now isn't sex (darn it), it's being single on the dating scene, at my age of 56.  

      So -- I joined a 'positive singles' dating website.  Saw a profile for a gent I dated more than 4 years ago (he never mentioned it).  

      Then, I got a call from a gent I went on a date with over two years ago.  I thanked him for checking in, but told him I was off the dating market.  Deciding to be candid, I told him I had tested positive for herpes 1.  So, he tells me he's positive, too (no OBs for years).  Apparantly -- this is a very big club!

      But, the discussions on this site have kept me connected to the fact that with LS (and HSV, and HPV), I can still potentially have a sex life. Just a more managed one.  A carefully managed one.

      You make the key point -- information -- specifically timely information -- can make all the difference!

      Merry Christmas!

       

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