Any Men with LS on this site?
Posted , 8 users are following.
I am a 37 year old man and I have recently been diagnosed with LS on penis glans. I am absolutely distraught, not only with the confirmation of this horrible disease but distraught after going through years of treatments for what everyone thought was thrush. I have so much blood taken along with swabs that I have lost count. It has affected every part of my life and I am becoming more and more depressed by the day. I would love to talk to other men with the same issue, although women with the issue might also be a help but I'm not sure if it differs from men to women.
I think stress brought this on me in the first place around 3 years ago when we were renovating the house but I can't be sure.
Any advice, help, anything would be such a huge help as I feel I'm on the edge.
0 likes, 31 replies
eamonn58740 Tweetmepete
Posted
Can I just say though it's great to be able to talk to some guys about this, as in terms of support for guys with it it's nearly non existent. Not that the ladies haven't been very supportive. I know there's certainly no groups for guys with it in Northern Ireland
Guest Tweetmepete
Posted
Male or female," on the edge", climbing the wall, round the bend, LS will take you to all these places...its not an easy condition to manage but you will learn what works for you. Hopefully there are some other males on this site that you can link with...
Bridge_of_Sighs Tweetmepete
Posted
Hi Pete, sorry to see another new face on here. You are in the best place for advice and support though, male or female, we all share findings and advice here. Totally understand that you need male advice too though.
Have a look at the thread 'An Experiment with Borax,' on this site. Many of us have found huge relief from this, including some reversals. Not total reversal, but I am one who would sing its praises, I'm in better shape now that I've been for years, no itching and bits of me that I thought were gone forever are starting to re-appear. In the UK borax is banned, DO NOT use Borax substitute that you can buy here. A soap making company in Devon sells it, or I bought some on EBay from the US and it arrived fine. I was trying to find the thread, but you could just google it. My protocol is to use a dilute borax spray after every bathroom visit, then moisturise with avocado or coconut oil (until I got sensitive to coconut - will try olive oil next, someone here had good results with it). The Borax stops the itching and the oils stop skin sticking and fusing. In various threads a Lithuanian doctor and a Spanish doctor have both said that it's a standard skin treatment in their countries. You can also buy a cream with borax in called 'Madelaine's cream' from the Helios Homeopathic pharmacy in Tunbridge Wells.
Stop using soaps. I found Dermol500 had traces of perfume in it and didn't suit me. Others have no problems. I use Epaderm to wash in, you can get it over the counter at any UK Pharmacy. It works well as a moisturiser too, though it's a petrochemical which, personally I'm now trying to move away from. It's still the best thing I've found to wash with though.
Read the threads on here, everyone reacts differently, so keep on experimenting until you find what works for you. It's also important to have about three things that work and rotate them, LS gets used to your remedies and they become less effective over time. If you rotate them this is less likely to happen.
And ask, ask, ask. We're all here to help each other
Good Luck
Bridge
Tweetmepete Bridge_of_Sighs
Posted
Thanks very much for that advice Bridge. I have made a note of all the products you mentioned. Have you ever tried or heard of anything trying Apple Cider Vinegar? I've heard it's a miracle for a lot of skin conditions and was wondering if anyone had used it for LS?
Bridge_of_Sighs Tweetmepete
Posted
Yes I'd read about Apple Cider vinegar too. In fact I bought some (very expensive, still with the culture in it), from a health food shop. Then I also got Borax. I tried two weeks with putting the vinegar on one side and the borax on the other. For me the borax was the outright winner. You could try that experiment too. I still have the vinegar in my cupboard, even though it's been nowhere near the bathroom (I decanted it), i still can't bring myself to put it on salad without thinking 'Ew!'
One LS site says it can be used to stop itching. It's also supposed to be good to drink. Still working up to that one, I don't like the taste enough...
linda94703 Bridge_of_Sighs
Posted
Bridge_of_Sighs linda94703
Posted
Hi Linda
I found that I couldn't tolerate the baking soda, it made me feel like I needed to wee all the time. The borax doesn't do that to me. No one else has said that though, so I suppose it's just my thing. Try both, see what works for you. I put the tip of a teaspoon of borax in a spray bottle with tepid water from the tap. I give it a shake and if all the bits disappear, I put a tiny bit more in. If there are still bits floating then it's ok. Sometimes I've made it too strong, if you feel a bit sore after a day or so, pour half the solution out and top up with water. if after a day or so it's still sore, make it even weaker. In time you'll get a feel for it. Or you could go about it the other way, try a tiny bit for a few days, then add a bit more. When you stop itching, it's enough. I think it's called a 'saturated solution,' i.e. the water can't dissolve any more borax. We're each different in what we can tolerate though, so use this as guidance and find what works for you.
Best of luck
Bridge
Tweetmepete Bridge_of_Sighs
Posted
I love the way you tested out both mixtures, the female anatomy lends itself very well I guess to doing that lol.
We actually don't have Borax in this country (Ireland) as far as I know but I might try the apple cider vinegar now next week after my coconut oil experiment is up. I feel I am going to be trying a different mixture every 2 weeks for the rest of the year until I find something that helps or cures the symptoms of this horrible disease.
Bridge_of_Sighs Tweetmepete
Posted
Hi Pete, I'm in the UK. First I ordered some from India on ebay - fingers crossed, hoping it was the right thing - it was. Then I thought I might as well go for it and ordered 2x550g boxes of 20 Mule Team Borax from the USA thinking 'nothing ventured...' prepared to take the hit if it didn't arrive. That's the brand that the USA ladies use. it was about £20, mostly postage. It arrived. It's hidden in the bottom of my wardrobe, hope I don't get arrested, lol!
Since then, there's been a post about someone in the UK who got some from a soap making firm in Devon. The Soap Kitchen sells Sodium Borate - You'd need to check if that's the same as the sodium tetraborate that is the ingredient of 20 Mule team. Just google it on a UK search page, you might well find local suppliers, either industrial cleaning supplies, or craft cosmetics sites.
Good luck
Bridge
Tweetmepete
Posted
Forgive me if I'm wrong but isn't Lichen Sclerosus the same as BXO? Well anyway, I posted a link earlier to a forum on BXO and this guy has claimed to find a cure for himself from the condition. He isn't promoting any product or anything but simply a mix of oils etc. Many others have since tried the same concoction and they are all claiming to be free from BXO for the first time in years. It all sounds incredibly legit without any product being pushed in any sense. I have to say I read through maybe 15 or so of the 60+ pages and it sounds pretty exciting. The original post containing the link is being moderated and it might not get accepted but I am for one willing to try anything and I will be trying this mix of oils in the next few weeks as soon as I've ordered the bits needed. I don't want to get too excited though but it's hope at least and I haven't felt that in months so I'm happy.
eamonn58740 Tweetmepete
Posted
Mate it's worth a try but prepare yourself incase it's doesn't work I'm not trying to rain on your parade and it's cool your excited but manage your expectations. I was at the place you were and it took time but I'm not almost back to normal. Ls affects the penis different than it affects ladies as we don't have that fusing to worry about more so tears and ripping just be careful man.
Tweetmepete eamonn58740
Posted