Diagnosed with lichen sclerosis very young and desperate for help
Posted , 8 users are following.
Ive just turned 22 and i was diagnosed with ls when i was just a kid. I was so young i dodnt realise that there was anything wrong and my mom didnt tell me about as i was getting older. I only rllearbed about this about a year and a half ago so ive had this untreated for years and years.
I had surgery about a year ago to remove scarring caused by this and i thought that would work long term as i use a steroid cream almost every day aswell.
Im at the end of my rope. Im so unhappy and uncomfortable all the time. Im 22 and still a virgin because ive never been able to have sex. I also just got diagnosed with hpv which is causing a huge flare up of my ls and putting me in pain. I only ever see my gyno evrry 4 months bc the hospital is so busy and even when i see her she is so rushed i get no answers.
Im so unhappy. Im pretty much resigned to dying a virgin and alone and never having a proper reltionship because i can give anyone a physical relationship. Is there anything i can do to help keep this under control and make sex possible? Please help me i dont know what else to do. I sound so stupid but i just want to be normal. Please help me
0 likes, 13 replies
hanny32508 alex16350
Posted
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.
alex16350 hanny32508
Posted
Can i ask a stupid question? What do you mean by regular dilation?
Thank you so much iwas so upset and ive been depressed with this for so long i feel hopeful now that i have options i can take under my own control xx
joanna43- alex16350
Posted
Dear Alex, I also have LS and completely agree with Hanny! The Borax has been a lifesaver! I use a Sitz bath nightly, suggested by Hanny, I might add. iam not a bath person and this is perfect for me! All my symptoms of itching, burning, biting, tightness, tearing etc have stopped. I use Vitamin E twice daily interspersed with coconut oil or olive oil to moisturize.
I was encouraged to be patient with my healing, it wasn't easy but it has paid off wonderfully. I had a lot of fusion, that's were the skin "melts" or sticks together and that is releasing nicely!
God bless you dear and there is a good life possible for you with LS!
alex16350 joanna43-
Posted
Do you take vitamen e pills? Do they help?
joanna43- alex16350
Posted
God bless and encourage you☺
hanny32508 alex16350
Posted
Glad that you're already 'on your way'.
?IN answer to your question - dilation is the process that gently and gradually stretches the vagina opening. For that you use a dilation set in which various sizes. You start with the smallest one and enough coconut oil for lubrication. Perhaps look it up on the internet to see what kind of sets are available.
caroline16811 alex16350
Posted
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
pat48434 alex16350
Posted
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.
ashleyk1997 alex16350
Posted
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?
alex16350 ashleyk1997
Posted
Hi Ashley, I get what you mean I get bacterial infections all the time because of all the fusing.
Ive never been able to to be intimate with someone and if my ls doesnt get better i never will be able to. I dont know if people really get how depressing that is when we're so young.
Surgery didnt help. I seem to be worse off than i ever was before and on top of that the surgery left with painful scarring that im being put in for more surgery to remove. Wish I had something more positive to tell you. I started with the borax treatment that was recommended to me, im getting kind of painful stinging from it but its better than nothing so im going to stick with it for 2 weeks to see if i have any improvement. If that doesnt work then i dont know what ill turn to. I dont think I have any other options left.
hanny32508 alex16350
Posted
Hi Alex, my experience is that borax can be too strong. A good alternative is baking soda. It has a milder affect, also gradually allows for the fusing to 'melt'. Next to that I use coconut oil. Somtimes baking soda doesn't work either and then I use unpasteurized apple cider vinegar. (LS likes variety it seems)
alex16350
Posted
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 )
joanna43- alex16350
Posted
Dear one, I am so happy to hear your positive results! As I was advised, "be patient" and also remember to moisturize throughout the day.
God bless you