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Perineum LS

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Jess1612
Jess1612

Hi has anyone just had LS in the perineum area.  Mine seems to be just in this area and slightly up one side on inner labia minora.  I have a small paper like cut there as well that doesn't seem to get better.  I am a bit scared to keep applying steroid as the area seems to be thinning out. If it thins out too much will it split and get worse?

Any advice would be appreciated as I am very new to LS. Thanks

1 like, 21 replies

21 Replies

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  • joyfulone3
    joyfulone3 Jess1612

    Posted

    I have the same symptoms. My perineum did rip.it was not because of the steroids though because it happened not long after I started using the ointment. My GYN has diagnosed me as having Lichen Planus. The dermatologist says Lichen Sclerosus. Planus is more likely to affect the perineum and anil area as well as within the vagina where Sclerosus seems to be only in the vulva, vault and labia area.

    Try soaking in a warm bath with Epsom salts every evening before you apply the steroid. Also alternate days with steroid one day and a healing salve the other. I use a hemp salve From Fey Farms. A lot of ladies on the message board suggest Palidin diaper cream and also organic coconut oil. 

    When I had my first big flare up I was soaking in Epsom salts two or three times a day. That with the hemp salve and coconut oil. Also I started on the Paleo Autoimmune Protocol diet. AIP diet removes all foods that might be a trigger for an autoimmune condition. You stay on it for up to six months to allow your body to heal and then you slowly reintroduce banned foods one by one which is where you discover which foods you can or can't eat. Look for information on the Internet.

    • Jess1612
      Jess1612 joyfulone3

      Posted

      Hi Joy thank you for your prompt reply.  I will take your advice and look at the diet.  I do find some days that certain foods flare me up.  I thought I was imagining it for a while but I do now see some links.  Thank you

       

    • sandra01720
      sandra01720 joyfulone3

      Posted

      I never knew that LS isn't as likely to affect anal area. I have it in my anal area (as well as other areas) and I think that others on here do too. My understanding is LS can affect the whole figure 8 in the lower regions. LP can also affects mucous membranes I believe, which LS doesn't.

      At any rate, this is one nasty disease with varied symptoms and presentations. It fluctuates constantly for me. One day, very few symptoms. Next day, burning and itching.

      I find it way too consuming. My mood fluctuates also. Acceptance, frustration, sadness, anxiety, surrender, confusion...Oh for that cure!

    • Wigster5
      Wigster5 sandra01720

      Posted

      Hi sandra this is how I am feeling right now , sad , upset , disbelief that this condition exists and it's for life ! I just cannot come to terms with it at all , some days I'm not to sore but others I'm burning , itchy and sore , it's changed my wardrobe from jeans now to leggins for a bit of comfort and I'm just overall so sad that I have these symptoms , I have not been diagnosed yet but my gyne thinks it's ls , I have the burning and soreness a year and the only thing that relieve it is dermovate ! Some times I give in and say well if this is my cross to carry I'll carry it and other days I'm angry and sad , I'm all over the place with my emotions 😪
    • sandra01720
      sandra01720 Wigster5

      Posted

      May I ask how old you are? I'm 44 but I've had it for many years I believe. I never had a biopsy but my Gyno and I feel that's what it is.

      just diagnosed in June so still trying to figure it all out.

    • Wigster5
      Wigster5 sandra01720

      Posted

      Hi Sandra I'm 38 and just cannot believe this condition exists , iv never heard of anyone who has this , I'm waiting to see a dermatholagist for a diagnosis , I have no white patches or fusing just soreness and feeling inflamed , some times I don't even look inflamed but the soreness is there , it's very distressing
    • sandra01720
      sandra01720 Wigster5

      Posted

      I understand. According to one lady on here, after treating for awhile things tend to get easier. ??? Let's hope so. If I was you, I might cling to the hope it's not LS. Hate this nasty disease. all the best to you.
    • Wigster5
      Wigster5 sandra01720

      Posted

      Oh I know sandra hopeing against all hope it's nt ls but not many other things it can be , although I had a swab taken lst wk which doc confirmed today I have thrush and bacterial vaganosis as I'm very flared up at the moment ! I was tested for these in December but nothing showed up on the swabs , I'm hopeing maybe they missed it in this tests but not likely as I had 3 or 4 swabs tested back then , , fingers crossed but afraid to get my hopes up x
    • sandra01720
      sandra01720 Wigster5

      Posted

      That sounds like a bitter combination! Hope you can soon get it under control. It helps once you find things that sooth and bring relief. Even so, I can be coming along well and suddenly, out of the blue, I'm having problems again. So very disheartening. Hence, the mood fluctuations.
    • Wigster5
      Wigster5 sandra01720

      Posted

      Do you mind if I ask do you use the steroid much and how long relief would you get before you flare up again and also when you are not flared up have you still some kind of soreness or discomfort , just trying to understand this condition and how to get it to a point where I have it under control , I'm like you one day I don't feel to bad the next Id be sore and also my mood changes to how the soreness is on the day , disheartening is right !!
    • sandra01720
      sandra01720 Wigster5

      Posted

      I'm also still trying to figure it out and find a workable pattern. I tend to need my steroid two times a week at least. I use olive oil and emuaid also. I have the odd day I almost could forget about it cause I don't have much burning or itching at all. But then suddenly I'm itching and/or burning for days. Treat myself and have quite a lot of relief after a few days. I am trying to figure out when one is past a flareup. I still need to be quite vigilant. the areas that were worst when I first went to Gyno have improved greatly but I have new areas that I've been resisting putting steroid on. Wasn't sure for awhile if it was LS or irritation from all the oils etc but I'm thinking it must be LS. Sometimes I wonder if I'm just in denial about it and should start using steroid over a much larger area.
    • sandra01720
      sandra01720

      Posted

      Between flaring I am quite comfortable generally. Sometimes have trouble with a sore clitoris when I'm not flaring. 😞
    • Wigster5
      Wigster5 sandra01720

      Posted

      Yes it's very confusing as to what is classed as a flare up , I thought you treat it get it calm and then use steroid 2 a wk until u flare up again but once I start to wean down the burning starts to come back , oh it is wrecking my head but at the moment I'm treating the bacterial vaganosis and thrush which I didn't even know I had until I had the White thrushy discharge , and the swab read a high overgrowth of thrush , it's hard to distinguish what's going on when you are already burning and itchy anyway , it's horrible and not good on the emotions , I'm very down at the moment too
    • sandra01720
      sandra01720 Wigster5

      Posted

      You should feel improvement when you get the thrush under control. Try to relax and do something you enjoy. Reduce sugar intake.

      My understanding is that some women have a year or two with no flareups. That would be wonderful but again maybe that doesn't mean symptom free, just not the crazy extreme symptoms???

    • rosemary82613
      rosemary82613 sandra01720

      Posted

      I have LS saw consultant again on Friday, he said use creams twice a day for month, then alternate days eventually just twice a

      week

      (We all like dream) he did say only use small amounts of steriod

      ointment which is better than a cream.

      l agree about mood swings and the rest of it so depressing there is no cure, we just controll it hopefully

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