Diagnosed with lichen sclerosis very young and desperate for help

I would like to suggest that you read through a number of discussions on this forum, where people talk about how they got LS under control.  I recommend especially the discussion topic on Borax:  "An Experiment with Borax". 

?It all may give you hope.  Many LS sufferers have gone on to live full lives.  And that includes the possibility to have sex. 

?I myself am one of the people who eventually got back to completely functioning as a partner.  Thanks to alternatives like baking soda, borax and coconut oil. Next to the initial use of clobetasol, but that I use now less and less.  Also of importance was a strict diet - my trigger was sugar, alcohol, dairy and gluten.  And another item - regular dilation.  It took enormous strength and determination over a long period of time, but in the end I won.

?Wishing you well.

Oh you poor love, to have been left untreated all those years is heartbreaking. I can relate re rushed consultations, many of us experience this which is why we all end up on here desperate for information and empathy and encouragement.

re dilation. Following an excruciating cervical smear test I bought a set of dilaters and had fantastic success using lots of lubrication (I use KY) The only hiccup being that if you want to keep your hymen in tact you are not going to be able to insert them fully. I still use about 3 times a week and have had no problems since.

Beside the steroid ointment which i use twice a week as maintenance I use baking soda in a spray bottle after each toilet visit and Hydrmolointment to act as a barrier and moisturise. Havent had a flare up in a couple of years now thank God.

My suggestion is to keep it simple initially, not to get lots of different lotions and oils as if you have a reaction you wont know what is causing it plus it will cost you a fortune.

Read up from the newbie section of these forums regarding rubbing in the steroid for at least 90seconds. To change your steroid from a cream to an ointment for better absorbsion etc

You are not alone sweetie, we all have had our desperate and depressed times and its awful that you are so young with LS. but you WILL improve and as you do , your mood will lift and hope will take the place of desperation. Good luck lovely girl and let us know how you are getting on. I look forward to hearing of your improvement 😊xx

Hi Alex,

You might try easing down on the clob.  Maybe 1 tiny pea size a couple times a week.  I've found, thanks to another Blogger, get a small plastic squirt bottle.  Get a box of 20 mule team BORAX, found in the clothes washing department of the supermarket.  Put rather warm water about 1/3rd of the bottle add tip of teaspoon (MAKE SURE NO LUMPS IN BORAX WHILE ADDING.)  shake and add more warm water and same amount of BORAX, Shake really so it is dissloved entirely.  This can be used each time after you pee.  Then I use a vasoline type product, from the drugstore blue bottle, it also has a healing element to it.  This has worked for me.  I also take a female pro biotic each day. I am prescribed estrce cream but at your age you most likely won't need this, you should have enough estrogen at your age.  Clobesterol can tin the skin if used on a continuous program.  This worked for me, hope this will work for you, don't give up, keep on the blog, lots of info here that has helped me and many others.

Hey.. just wanted to say that I can relate with you. I'm 19 and recently diagnosed. I've most likely been struggling with this my entire life.. I also get UTIs 6 times a year. I can rarely have sex anymore.. and when I do I'm in searing pain which lasts for days after. I am depressed. Nothing seems to be working for me.. next step for me is a biopsy in June and eventually that surgery. I really hope that works. Did it help at all for you?

I actually have a positive update to give which i never thought possible!! 

The borax works like a dream, i started using it maybe a week ago and ive started noticing good changes. I got the worst flare up ive ever had with huge white patches, major pain/itching and loads of very fast fusing and after 1 week of taking borax baths and doing the borax treatmet twice a day im seeing myself looking and feeling so much better. 

Ive got no white patch left. The area is still raised and can get tiny bit itchy but its well on its way to getting toally better. Im not red or swollen at all becasue ive not used my steroid cream which i read can thin your skin. Im able to walk and pee without pain which is a massive relief. That alone for me is a big win. The first time made me cry with happiness!

The only thing is is that the borax makes me a little sore for about maybe half an hour after i apply it. As far as i can see it hasnt made me swollen or irritated and the pain is only on the patches of raised ls so i think its just the borax working its magic. Ill take the half of hour of mild pain over the alternative any day. 

Thank you all so much. im full of happiness at this i never though possible i have hope for the future! 

(I was also advised to start regular dillating which i will do next month (baby steps ). I want to get my flare up under total control first before doing it in case i hurt myself and end up back at square one )