Lichen Sclerosus, what should i do?

Posted , 7 users are following.

Hi all, a little nervous about writing this, I am new here and would totally appreciate any help I can get. So, the thing is that I have signs and symptoms of lichen sclerosus, (yet to be diagnosed by a derm) I am a male, 24. my symptoms are the pains, itching, burning and whiteness (including raised spots) on my glans. I fear I have had this problem for at least the last 4 years, but only started chasing it up over the last year and a bit. Over this time I have read many forums about success in alleviating some of the symptoms such as the white marks with things such as olive oil, or estrogen cream.

currently I am waiting blood results to see if there are any deficiencies which could be the root cause of this problem. I hope you could share some stories about things which have helped you in your battle against LS, and what should I try or ask for from doctors to help me. Any home remedies would also be so appreciated. 

?thank you so much, I really need help, don't know who else to turn to at this point.

0 likes, 13 replies

13 Replies

  • Posted

    Hi, first of all I’m so sorry you’re suffering at such young age. I’m a 45 years old women and i have LS. I have 2 beautiful boys 18 and 14 and i always try to be very opened with them in case anything like that would happen to them i wouldn’t want them to suffer in silence. So in all of this I’m happy you’re reaching out to this group cause you really found the best group there is to help you out and to support you. The first thing i would say is we have quite a bit of men on the group so they will be greeting you shortly im sure. Meanwhile blood work is one thing but you also need a doctor examination cause very often they can give you a diagnosis just by looking. Meanwhile do not use arch soap, even try not to get shampoo on while showering. Do hydrate best as possible ( olive oil, coconut oil...) for itching ( if you don’t have a protocol from doc.... maybe you could get a little cortisone cream from pharmacy for inflammation or if you want more natural. I use to go with castor oil let’s say a little mix I would do myself in a little jar. Or small plastic container . About half a cup of castor oil, add 2 or 3 drops lavender essential oil and 2 or 3 drops of lemongrass essential oil. Very efficient to stop itching. When you get the prescription from doc.... if it is LS... you need to follow instructions doc gives you. Those tips i just gave you are really side treatments to help meanwhile and also to accompany your basic treatment . Hope this helps for a bit. Also minimize your stress, and watch the food... cut slowly on sugar and watch out for gluten. Good luck 🍀 

  • Posted

    Hi, when first diagnosed many of us use the steroid cream Clobestol to get on top of the disease quickly and we look for an alternative which suits us only using the steroid cream in emergencies.  To get the cream you will need to have a firm diagnosis from your derm.  The cream will start working rapidly to knock it back and you should feel some relief quickly. 

    Diet is crucial and you need to do some reading.  If you look at some of the older posts on this site that will help.  If you try cutting out sugars to start with you may find that helps, if not try gluten.  Dairy isn't great and there are so many alternatives out there that it really is better if you can avoid it.


  • Edited

    Hey man, sorry to hear about your LS or BXO as it's called when it's affecting the penis. I too have had it for 4 years and and have been mistreating it for 3. Every doctor thought it was thrush and I wasted alot of time treating it as such. For 3 years it was simply the itching, burning, sensation with a red patch on top of my glans. This patch regularly changed shape etc. As I said I was treating it as thrush for 3 years and using Canisten twice a day. This kept everything in check as in, it kept the condition from getting worse, which is why I was also sure it was thrush. As the condition wasn't going, I decided to get a full STD check just in case and everything came back clear as usual but the doctor there said that it didn't look like thrush to her and I should see a specialist which I did, in London. He diagnosed BXO straight away. This meant a whole different approach which was steroid based.I was firstly prescribed Dermovate which is a strong steroid twice a day for a few weeks but it irritated things alot and the condition started to get alot worse. Strangely what I found is that I've been managing it quiet well as in keeping it in check for 3 years using canisten and that confused me. It turned out that it was keeping the area moist that helped things for me. This is what the canisten cream was doing for 3 years and it was very manageable as such. With this in mind, I scrapped the canisten and started using E45 twice a day instead and have been now for the past 6 months. It was relieved all the itching, burning etc. It's not the most elegant solution but it works for me.

    I have since seen a functional doctor and she did loads of lab tests on me and she found a bacteria in my gut which she believes is aggravating my immune system and causing my BXO. I went a week without any food and now I'm on an elimination diet for 30 days. So far I feel much better but not sure what's happening with my BXO whether it's dying off or not as it's very early days.

    Feel free to message me if you need any advice. But if I could say anything I personally don't feel the answer is in creams or pills. It's in your immune system. You immune system is attacking itself and causing BXO in the process. Fix your immune system and you fix this.

  • Posted

    You would benefit from speaking with Weedugie and Tybear- two males on this site, search for their name, they will hv some good info from the male perspective. 

    Good luck!!

  • Posted

    Try some organisation tea tree cream I've used it for last two years and haven't had a flare up for ages but that's just me . If nothing else it cools the area for a while which is some relief in itself if not a cure x

    • Posted

      Organic Aloe Vera Gel works well for cooling, soothing and moisturising. And drinking gallons of water helps with the burning too


  • Posted

    thank you all for your kind words and support, glad I decided to post on here, find it comforting to know there is such a great and active support network out there. So I have made that all important appointment with the docs who will refer me to a derm. 

    ​Again that you all for taking the time to help me out, I will post an update about the results, and if any treatments have helped me, and honestly I wish you all the best of luck in your journey to combat ls

  • Posted

    Hey all, quick update. I have got half my blood test results back so far, I have been told I have low levels of B12. just wondering if a deficiency in B12 has any bearing on LS/bxo, I know that it is connecting to your immune system, other then this I cant find any information connecting the two online. 
    • Posted

      Hi, I take a vit B12 supplement every day as it is apparently crucial for the immune system.  Anyway, you can easily pick up some supplements to correct that.
    • Posted

      Hi, did you experience any changes to your symptoms while on//off vitamin B12, I have read on many sites that also taking vitamin D3 has put many people with ls into remission. Any experience with this? thanks allot for your reply on this
    • Posted

      Outinspace-Please find NancyKB and read her whole report on supplements and balancing the immune system- invaluable information! She spent months researching it all! 

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