thoughts on this message from my doctor?

Posted , 6 users are following.

if you read my previous posts , im on my 8th month of vaginal and anal tearing, on and off burning and itching, negative for all stds. anyways, i was diagnosed with vuvlodynia and vestibuldynia, but i suspect lichen sclerosus. i asked my doctors nurse if ls could be a possiblitiy and this was the response. please take the time to read this as he believes its a chronic reaction. should i request a biopsy?? i also have an underactive thyroid. thank you guys!!!image

0 likes, 13 replies

Report / Delete

13 Replies

  • Posted

    Have you been following that protocol (which I assume he gave you at your last appointment)?

    If you have with no positive results I guess my question to him would be why does he think it is NOT lichen sclerosus.

    Someone posted info a while back re toilet papers that do not have irritants in them. Have you used them?

    Are you in the UK? The address of the clinic is cut off. You can order them online. I will PM you the brands so the message won't be blocked.

    Report / Delete Reply
    • Posted

      hi i am in the US. and yes i have been following it but only for 4 weeks. he also prescribed an estrogen combination cream which i will start when i get back from vacation. i only wash down there with lukewarm water and use coconut oil. my mom switched to Deft baby laundry detergent and i still use the same toliet paper (Charmin). i guess he wants to explore this option first.. even though it seems clear to me as to whats happenig

      Report / Delete Reply
    • Posted

      Nicole, if you google it, the first ingredient in Deft is fragrance. People seem to want their babies to smell perfumey. Have no idea if it is irritating you, but you need to be very wary of products.

      If I were you, I would definitely switch to one of the safe toilet papers though. Women have posted that it made a big difference for them. Most TP is made using bleach. Then there is: "A 2010 study investigating the possibility that toilet paper is to blame for chronic irritation of the vulva discovered that formaldehyde is sometimes used to improve the wet strength of toilet paper, tissues, and paper towels. In addition to being a skin irritant, formaldehyde is a known cancer-causer."

      Considering the severity of your symptoms I would be as careful as you can be re eliminating irritants. Whether it is an allergy or LS you still need to avoid them.

      Report / Delete Reply
    • Posted

      Unfortunately that's what most people think. Those products aren't all that safe for babies either. We live in a chemical soup. Everything we put on our bodies and every processed or non-organic food we consume has chemicals in or on them.

      Those of us with health problems are somewhat compromised and need to be careful. Most people trust the government is testing everything . Not the case. Best to be an informed consumer if you can.

      I just bought some detergent that says it's "free & clear". "No dyes or perfumes and dermatologist tested". But it doesn't say what exactly IS IN it.

      Probably not a bad idea to do an extra rinse if possible on each laundry load that has your underwear in it.

      I don't have a problem as severe as yours. If I did I would do whatever I could to try to get the problem under control . It won't do you any harm to be extra careful. That includes using safe TP. I think CVS might sell some.

      Report / Delete Reply
  • Posted

    Hi Nicole, what I have found with doctors is that they often do not like to be told what you think you might have.

    I think you have to be insistent and request a biopsy before you find yourself in a lot of pain and discomfort.

    I stopped believing in doctors a long time ago when I realized that they don't always want to listen.

    Keep us posted and let us know how you get on.

    Report / Delete Reply
  • Posted

    I keep a squeeze bottle in my bathroom and rinse with warm water after using the toilet. Then I just pat dry so no wiping at all. I saw a dermatologist who told me there was a connection between LS and low functioning thyroid, so I am now on thyroid medication. Since my diagnosis almost a year ago, the treatment has been working well.

    Report / Delete Reply
    • Posted

      My LS has been under control but I don't know if that's because of the thyroid medication. The dermatologist just mentioned the connection and sent me for blood tests which resulted in medication being prescribed. I later spoke to my pharmacist who was unaware of the connection but he checked and saw that many people who had been prescribed Clobetasol were also on thyroid medication.

      I have found that taking a low oxalate diet has really helped and I believe my most recent flare up (first since being diagnosed) is because I didn't follow the diet over the Christmas season.

      Report / Delete Reply
    • Posted

      Tech, I went to see my GP for my annual this summer and informed him of the LS diagnosis. He was impressively up on the steroids and their potencies, but never mentioned thyroid; I had to request the test which came back in the normal range. My gyn didn't suggest the test either. She said my LS was a result of low estrogen (determined by my having AV). But I thought it was worth knowing as clearly not every woman with AV gets LS.

      Another poster mentioned being on the low oxalate diet. I eat just about all those foods, but so far I have experienced no flare ups. My LS was coming on slowly without my even being aware of it. Gyn said that was not unusual.

      I am going back to taking vitamins and supplements although I took them for years and never noticed any difference whether on them or off. Ordered several months worth. Will see what, if anything appears different. Difficult to determine.

      I do continue to use very small amounts of a mild steroid on any prickly feeling spots. I find it difficult to distinguish what's being caused by the AV vs the LS. Estradiol seems to have the AV under control, so I am assuming those sensations are the LS, but who knows. Gyn said all she could see was improvement.

      Report / Delete Reply
  • Posted

    Relief- The only thing I found to help heal and relief the fissures is an

    ALOE LEAF you can find it in the grocery store. Do Not try to use any "natural aloe products" as they are not the same as using the natural plant whole leaf. I live in south florida so they are at every publix grocery. Appx 18-24 inches in length price here is $1.99 .

    When i am up north these leaves can be found in ethnic stores. cut a small piece you MUST SOAK prior to using. Soak for about an hour. then rinse again. until No more yellow/green or red run off.. Its ready to use

    Cut leaf so u can access the clear inside.(It must be slimy if not slimy its wont help too old)

    Use this slimy inside and put on area thats sore/torn. I usually put on befor bed or sometimes a little during the day. This will help heal the rips. It will not take away the Lichen Schlerosus. But will help with healing these fissures.

    To get my Lichen Schlerosus under control I was prescribed Desoximetasone Ointment .25% My dr. said its a difficult task to find the right Ointment. Ps(creams are too irritating due to additives).

    Although the Desoximetasone seemed to irritate at first but i pressed on for the 10 days and once i started using every other day then every 3 days it seemed to really really help Alot.

    Using the Aloe leaf was my saving grace! And using coconut oil prior to pooping helped too.

    Showering daily a must especially when using that ointment. I used tea tree bar soap from trader joes. or emuaid soap bar (emu aid did not help me) I use a empty bottle i bought at sallys(used for dyeing your hair) to rinse area with water only when I used the bathroom and only patting dry.

    Good Luck.

    I also use antihistamine for itching

    Zyrtec helps me.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up