Recently diagnosed - 21 years old, help x
Posted , 13 users are following.
Hi, not sure if I’m doing this correct so apologises in advance.
I am a 21 year old female recently diagnosed with LS. I had it when I was about 10/11 on areas all over my skin. By the age of 15 all of the LS had cleared and I was left with many scars. I got diagnosed last week with LS of the Vulva after seeing a gyna and doc said I have had it down there for years.
I had the itching and soreness for a while I just thought it was thrush and was too embarrassed to see anyone about it. However it started to get worse and I was struggling to finish my wee’s properly and I couldn’t stop itching so I went to the docs.
Doc confirmed LS 4 months ago and referred me to gyna. Gyna confirmed LS last week and prescribed me Dermovate for 3 months and then go back and see her. She explained she was worried as the stage my condition is at is the equivalent of a 75 year old lady and I’m only 21. She said it’s very aggressive and active and I almost have complete fusing. My 9 year relationship broke down just before Christmas and we hadn’t had sex for 12 months prior to this. It wasn’t the main reason of the break up but it did contribute.
Feel like I’m stuck and I’ve just been left in the lurch. Gyna said she wants to do surgery to try and save what’s left but she said most of it is too late to save and has already gone. She said she was unsure at this stage whether I’d be able to have sex again but definitely not in the foreseeable future. She said I will never be able to give birth to a baby naturally.
Don’t really know much about the condition as there’s not much on the internet about it. I just keep seeing that there’s no cure and it’s really depressing me. I’m itching all the time and I’m struggling to cope with it.
I’m only 21 and I can’t understand why this is happening to me 😦. Just asking for some support from fellow LS sufferers? X
Thanks for reading if you got this far.
Molly x
2 likes, 37 replies
susan43705 mollymadx
Posted
Hi Molly, Apparently my response to you is being moderated with the information I sent to you from one of our forum members, Nancy KB. It will include everything she has researched. You could probably search for her name on this forum.
As everyone has said, we are your support system. Hang in there.
Hugs. Susan
mollymadx susan43705
Posted
Thank you Susan. I will have a look for her on the forum.
Need all the support we can get, it's a tough one. Hard to talk to people about it who haven't got it, too graphic x
susan43705 mollymadx
Posted
Hi MOlly, I share LS with very few people. But LS has prevented me from dating the past two years. Wasn't the issue it is today even though I have had it for about 10 years. All of a sudden it escalated to a really bad scene. There is a lot of comfort in sharing this with the women on this forum though. Chock full of information and things to try and I'm trying everything!
Let's stay in touch. Hugs.
Voicegirl mollymadx
Posted
Hi Molly,
so sorry to read your post. this is one of the worst thing for me too. Everyone here is great and will help with any questions that you may have. there are some great groups on face book to if you use it where support is amazing xx
mollymadx Voicegirl
Posted
Hi,
How old are you if you don't mind me asking? I don't use facebook unfortunately, glad it's helping you & others though x
jen86183 mollymadx
Posted
So sorry to read all you are going through at such a young age. God bless.
mollymadx jen86183
Posted
Thank you Jen, it is very difficult x
Nancy_K_B mollymadx
Posted
well, lets see if the simple links go through without any conversation:
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
https://patient.info/forums/discuss/ldn-for-lichen-sclerosus-experience-690359?page=0&utm_source=forum,sendgrid&utm_campaign=comment-notification,Patient.info&utm_medium=email,email#3452347
susan43705 Nancy_K_B
Posted
Thanks Nancy for posting links. I tried to attach a pdf but coudln't so copy and pasted all the information you had posted previously.
mollymadx Nancy_K_B
Posted
Thank you Nancy for sharing links, I will give them a read x
Guppy007 mollymadx
Posted
Hi Molly, try to read up on LS so that you become well informed which will help you when you have to discuss your issues with any doctor. Look at some of the older threads on this site.
It sounds like your in a bad way and I think that's such a shame for someone so very young. I have read of some women having to have an operation in extreme cases.
Diet plays a role in LS and sugar is the main culprit, so look at that, plus some women do better when they cut out gluten.
Keep posting and let us know how you are getting on.
mollymadx Guppy007
Posted
Hi Guppy,
I am researching a lot about LS and finding out things that I didn’t even know. The pieces of the last few years of knowing something was wrong are just falling into place and it is all starting to make sense. This doesn’t make it any better though 😦 Just wish if I was going to have it that it would have been further on in life. Feel like it’s put a wall up infront of me and I’m struggling to break it down.
I will look into my diet as I have saw that several times on here.
I will keep you updated.
Molly x
Nancy_K_B mollymadx
Posted
Dear Molly,
I sent what I thought was a helpful welcoming message and ideas... It seems like they deleted it. though the link that I had included from my research and work went through yesterday without a prob. SO PLEASE forgive me the terseness of just sending links without any preamble.
I of course aid plainly that I couldn't diagnose as I was simply a 72 year old layperson.... who just happened to have spent 6 months this last year studying up on this disease and built up a nutritional protocol - that has been helping me and others re autoimmune diseases. sending good thoughts and blessings,
suzie37971 mollymadx
Posted
Hello Molly , So sorry you have this at such a young age. BIG HUG AND WELCOME TO THIS FORUM OF LS TROOPERS .
I m also from the Uk and was diagnosed last year. My GP was also not helpful . I got more support and advice here on this forum .
I use bicarb of soda which can be bought very easily in the UK usually in the baking aisle of most supermarkets.
I wash with this with drops of Lavender . I also was given DERMA 500 it is a lotion but used as a wash.
I would advise a spray bottle con taining lavender and bicarb to spray after every wee.
Keep away from soap and i use vaseline as barrier everyday .
cotton knickers , diet and vitamins as others have mentioned .
I have had to use my steroid ointment twice a day , morning and night as i have had constant issues .
Stress and lifestyle play a part also.
I would like to hope that they can offer you more being so young . Really hope you get some relief soon
xxx
Nancy_K_B mollymadx
Posted
Hi MOLLY,
Keep going on reading research.. I've seen the women mentioning good healing after some time. Please do read these for starters; get your vitamin D tested know your numbers.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033.
https://patient.info/forums/discuss/aloe-vera-gel-with-tumeric-essential-oii-best-healing-ever--667353
https://patient.info/forums/discuss/ldn-for-lichen-sclerosus-experience-690359?page=0&utm_source=forum,sendgrid&utm_campaign=comment-notification,Patient.info&utm_medium=email,email#3452347
"After 11 months of LDN, my skin condition has healed 99%. To me, that is nothing short of a miracle!
In addition, after a few months of LDN, I started to notice an improvement in my Lichen Sclerosus. This was an unexpected and amazing positive side effect. Now after 11 months of LDN, it has healed 99%. To me, that is nothing short of a miracle!"
mollymadx Nancy_K_B
Posted
Thank you Nancy for this useful information. I will give it a read. X
susan43705 Nancy_K_B
Posted
Hi Nancy, LDN sounds like a miracle. I'm wondering if it helps unfusing. Did you get your prescription from your doctor or online? What dosage? Did you have any side affects?
Sorry for all the questions, but I need to stop the fusing. The itch is under control.
Thanks Nancy. Sounds like you are doing terrific. Susan
Nancy_K_B susan43705
Posted
Hi Susan - yes I did get it from my integrative doctor who is also my cardiologist. He already knew about it and immediately wrote out a script. in fact I think he uses or used it because he has Crohn's.I have been taking my time reading everything about dosage. Dr. Bailey wrote the script for 4.5 mg. But i had read on the yahoo LDN group that we should start very little like .5 mg and increase slowly up to the 4.5 and then depending on our own individual body responses back off to the best dose. I'm only on 1.5 at the moment. no problems so far. oh, well.. I did switch from taking it at night because it kept me awake so I looked on line and newer research shows that it works taken in the morning as well.
I do suggest that you read up everywhere, there is lots out there and I've found that the people who respond on the yahoo group are VERY knowledgeable.. also be sure to note Bridge of Sighs recent message for Molly. She specifically mentioned that over time she is having some unfusing.. she believes it is from using borax. Multi-pronged approachs seems to be the order of the day! smiles. I'm just keeping on, smiling... it does seem to take consistent awareness ..
susan43705 Nancy_K_B
Posted
hi nancy, good to hear from you. ive been reading up about LdN ONLINE. sounds like a drug with multiple benefits and you dont need a prescription. im going to run it by my doctor. i am getting a toilet sitz bath tomorrow so I CAn be more diligent with Borax treatments.
Take care NANCY. xo