Please help. Need some advice. New to LS.

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Hello Everyone ??

I'm new here and rather new to LS. I'm hoping I can get some advice here. My whole journey started in July 2016. I got my first UTI and after a few days on antibiotics, I had a tight feeling in my vestibule area that quickly turned to burning and soreness, as well as strange sensations like a tugging/pulling feeling. There was redness at the posterior fourchette area.

Even though I never had a yeast infection, every doctor kept chalking it up to one. None of the yeast infection meds worked. In December 2016, I was diagnosed with Lichen Sclerosus via biopsy and Vulvodynia. I stopped seeing that particular doctor because like many others I saw, he didn't have much compassion. 

I am seeing a nice gynecologist now, but it really seems like every doctor has a different opinion on what is what. I do have white areas on the left and right sides of the clitoral area and a little redness with a small fissure at the posterior fourchette area. The gynecologist I'm seeing now said that is all LS. So, I've been using Halobetasol ointment (another ultra potent steroid like Clobetasol) for about a month now, but at my follow up appt with her last week, she told me to also use it on the posterior fourchette area/vestibule area and there will be another follow up on a July 10th.

My questions are:

1) Any of you ladies had some redness in that area/fissure and it was LS?

2) How long did it take before you saw visible results with the steroid ointment?

3) Does LS cause burning and soreness sensations or is that Vulvodynia causing nerve pain as a result of LS? If so, what helped you?

Thank you all and I hope we can find a cure for all of us soon! 🙂

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6 Replies

  • Posted

    Hi Michelle yes agreed medical advice or sympathy is limited. I was told to look at a web site and manage my condition. I was given a steroid cream. My skin was white, the steroid cream only worked a little and I was very unhappy. I have tried lots if different things including the borax that gave me mild relief and helped a bit with the white are. The cream that has restored my sanity is Perrin's creme complete. I was diagnosed in January after a biopsy. Good luck

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    • Posted

      Thank you Liz for the info on Perrin's creme complete. This is the first I've heard of it...will give it a try.  It is on Amazon and even the Rose scent is there too.  It looks like the ingredients include everything but the kitchen sink.  The description for the creme says it is for LS.  The Borax helps too.  

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  • Posted

    Hi Michelle! I was diagnosed around the same time as you and my journey was very similar, doctors put it down to thrush over and over again before my biopsy revealed it was infact LS. I used the steroid ointment everyday for about 2 months before I saw visible improvement and I still have to use it every few days as the itchiness tends to flare up if I don't use it for a few days. I have been trying different naturopath ointments and creams to help with my nerve damage around my vaginal area that LS caused and some seem to be making small improvements.

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    • Posted

      Hello Michelle, I have had LS with all of your symptoms in the area's you have them so it is not unusual. With diagnosis and steroid cream, I initially saw improvement in terms of reduction to inflammation and itching within 1 to 2 weeks. However, the soreness took much longer and the splits and tears although healing intermittently continued to re appear. The white areas 5 months on are still visible but the thickened skin and ridging have gone. In my experience using the right steroid cream (I went through 4) and applying it regularly enough were the turning point. Over the initial weeks/months I found that in order to really get on top of the condition, I had to use a combination of methods and treatments. No one thing works in isolation. Really good moisturising alongside steroids gave me relief and promoted healing. Everyone has their favorites and you need to find which suits you. Personally I do very well with Coconut oil. Do not use regular body wash or bath creams. Only wash with unscented pareben free products. I use Dermol but again we all have our favorites and get to know what works for us. Discover what makes you uncomfortable. Most of us find that tight or restrictive garments are an irritant and trigger flares. Sitting for long periods, Nylon underwear or wet swimming costumes. Diet can also delay healing and cause worsening symptoms. I am still learning about this side of things and what foods if any affect my condition. The best advise and support you will get is via this and other similar forums. Some women use alternative therapies and no steroids at all. I am currently using Sodium Bicarbonate for fusing. When you talk about nerve damage, I think it is possibly the LS. I have experienced this sensation and I thought it was due to splits from poor skin integrity. however, I now believe I have some nerve damage and although not completely eradicated it has very much improved as the area in general has improved. It's a sh*te thing to have but manageable when you find what works for you. I wish you all the luck possible in finding the right methods of control. You will get there but it may take a bit of trial and error. As a footnote, I have to say also that a good Dermatologist is helpful. Although the condition is a result of autoimmune issues and is gynae related. It is essentially a skin condition. I am very fortunate that I am under the care of a Gynaecologist who has a specialist dermatology nurse working alongside her. Take care and let us know how you get on in July.

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  • Posted

    Hi Michelle,you will find lots of info & support on this forum & it seems we all have different ways of dealing with this awful condition.It is a case of finding what works for you.I was diagnosed by my GP Oct 2016,told to use Clob ointment. I did have 3 Utis ( never had them before LS)Saw a specialist in May, biopsy... LS not confirmed? I go back to see my GP on fri. I'm very puzzled. I have a very pale vulva,hardly any architecture left & a very sensitive feeling,sometimes aches? I do have neuropathy,       so  wonder if I have nerve damage because of that or whatever it is I have got.I am continuing with the Clob & I find Emu oil a godsend for moisturising.I have stopped using soap in the vulva area & use moist loo roll. I find sitting too long is uncomfortable. I have tried cutting sugar from my diet too. All this seems to be working for me,so I do hope you will find what will work for you & wish you all the best.

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