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
Hi you poor thing, I really feel for you. I don't know what I cant suggest to help you other than keep asking questions on this forum because its such a huge help and comfort knowing there there are millions of us out there all suffering in various ways with the disease. There is no cure but there are ways to help with the itching and other symptoms. Did you doctor explain how much and where to apply the steroid cream? Where are you based in the world as you maybe able to go and see a specialist who could offer you a little more advice? All I can say is you are not alone, stay strong and keep using the ointment as it really does help.
We will be your support team. You are NOT alone. Best advice I can give is to seek a surgical specialist in LS.There is a practice in DC and a wonderful specialist in Annapolis, Md.Don't know where you live, but maybe we can help you find the best surgeon in your area....
Hi it's not great and I am sorry you are going through this. We are all on you side and we can all talk to you. Don't panic it's not the end of the world and try to find out as much as you can about LS somethings help one person and no another. It an auto immune problem and we have to deal with it as we find fit. If you want to talk let me know.. X
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
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
So sorry to read all you are going through at such a young age. God bless.
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
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.
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.
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,
Hi deethebee,
Thank you for taking time to reply. It’s nice to see we’re not alone in this. Doc said apply the Dermovate (pea sized amount) once a day, at night for the next 3 months. However, that’s not helping with the itching and uncomfortableness throughout the day.
I have to apply the cream to the whole of the Vulva area as I am swollen and sore. Mainly focusing on the Labia Minora as this is where it is fused. The Labia Minora have fused together and I cannot see my clitoral hood, clitoris or urethral opening. I can only see the vagina hole and that’s almost completely fused together too.
Having a wee is getting harder and I can’t seem to be finishing my wee’s properly. Doc said this is because of the fusing over my urethral opening, the wee has to travel downwards underneath the skin and then out of the vagina opening. I’m scared about getting infections from any left over wee left underneath the skin??
I am from the United Kingdom and I’ve been to see a gynaecologist. I went to the doctors this morning, she basically said what do you want me to do? I explained about the itching throughout the day and she told me to use the Dermovate as and when in the daytime. But gyna told me to use it once a night only?? So many mixed messages.
I’m using the creams just struggling to deal with it mentally I think. It’s a lot to take in for me at only 21 years old. Can only hope it gets better x
Molly x
@jane08222 Thank you for replying and supporting me.
I am from the United Kingdom and I am being seen by a gynaecologist through the NHS. Not sure if they do anything like that in the UK?
Molly x
i have just sent you a private message
Hi Molly - so sorry for you. I am in UK and know the problems you face with NHS doctors not being sympathetic enough. To soothe, have you tried soaking in borax solution or epsom salts? A tablespoonful in a shallow bath or a teaspoon in a sitz bath (like a bidet that fits on the loo, you can buy them on Amazon). This can calm the itching. And you can swab with borax solution too. My GP prescribed Amitryptiline to help tune out the itch, you could ask about that too as it does help. Good luck and always make a fuss with doctors so that they listen to your concerns properly. LS can be managed!
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
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.
- the nutritional aspects of autoimmune diseases that I discovered last year and posted here.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033.
- Please also read about my learning about the healing aspects of aloe vera gel mixed with tumeric essential oil drops really helps to feel better.
https://patient.info/forums/discuss/aloe-vera-gel-with-tumeric-essential-oii-best-healing-ever--667353
- ... and also the newest discovery about LDN:
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!"
Hi Molly I'm so sorry to hear that you have 'joined our club,' but this really is a great forum where we all support and help each other as much as we can. I'm in the UK, you don't say where you are, but maybe if you ask, people could recommend doctors that they have found helpful in your area? Can you get a referral to a Vulval Dermatology clinic? They are the specialists in this, though you may well have got a doctor who does know more than average. The general ignorance is shocking. I'm in Bristol and St Michaels has a clinic, though the waiting times are very long. Some of us here have also set up a support group, it's early days, and we've only had one meeting, but are you anywhere nearby?
Look for the thread 'An Experiment With Borax,' on this forum. A google search usually brings it up. Lots of us have found relief and even some slight unfusing with it - myself included. It is banned in the UK, but soap-making places supply it, or you can just order it and cross your fingers! Quite a few of us have managed to get some. Do not use Borax Substitute, it isn't the same thing at all. Others have used bicarbonate of soda (NOT baking powder). Either can be made into a dilute solution one pinch in a spray bottle and used after every toilet visit, or put in the bath. Personally I believe that it neutralises the acid of urine, and that is what gives relief. I stopped itching the day I used borax for the first time (the bicarbonate doesn't suit me). A tiny pinch in 100ml is all I can use, any more and I get sore. I have very gradual signs of unfusing, a seam where there was flat skin, a profile where there was nothing. I have been using it for over two years. I used Dermovate for six months as prescribed before I found this forum. I would still recommend using it. I mostly don't, but will have a three week burst now and again, just in case.
It is important to say that this forum is full of suggestions, but one thing we have discovered is that everyone reacts to different things, so people will post things that suit them but if it doesn't suit you, move on, try something else. There are no miracle cures, but it can be managed.
With dermovate, a squeeze from the tip of your finger to the first joint will cover an area the size of your whole flat hand, so a pea sized amount should be about right for the whole vulval area. Keep the area well moisturised, it helps stop bits 'sticking.' Olive oil, Emu oil, Epaderm ointment (an over the counter eczema preparation) are all in my arsenal and I chop and change as things get less effective if you use only one all the time. Also make sure that you use Epaderm and Dermovate ointment (a vaseline-like texture) rather than cream. The cream doesn't stay on as well, and some people reported sensitivity to the ingredient that makes it white.
Did your doctor recommend dilators? They're not much fun, but gradually you can stretch and open the vulva. They are available on the NHS though my GP had to check before prescribing them for me. Or else you can get them on Amazon. I have had vaginal fusing, my uretha was covered over and now it isn't. I had to start on the second smallest dilator and gradually work my way up. I'm now on the biggest and still have to use them three times a week to keep everything open. It only takes 30 seconds and it's a huge improvement. I put them slowly in and out, if I leave them in it irritates my bladder and I get UTI. Between initial use of dermovate, then borax, dilators and moisturising I got to where I am now. At my most recent check up the new specialist I saw said my LS was now 'mild.' It has taken years, but now I can forget that I have it most of the time.
I hope this helps and give you some hope. Please do follow your doctor's advice, but there are alternatives that work alongside which might give you relief. I'm not on here regularly, but will try to check back soon. If you are near Bristol and would like to join us, please DM me and I can add you to our group.
Apologies if this is rambling, but the cat jumped on my keyboard and now I can only see a tiny bit of screen to write in and have no idea if it all makes sense together. I don't know how to undo what he did! :-) Good Luck and lots of hugs Bridge
Hi Sarb73328,
I could not believe the way the doc spoke to me yesterday!! I am currently writing a complaint against her.
She did not give me any advice/help about the itching throughout the day and I didn’t even talk to her about how I felt depressed and down, she just didn’t make me feel comfortable at all. She made me feel like my condition is not important. She also told me not to go back to see her and to book in with a different doctor next time as she only works at the surgery once a week!!! I then found out by the receptionist, that the doc I saw was the doc specialising in gyn!! She made me feel uncomfortable to ask if she would have a look for me. I eventually did ask and she didnt close the curtain to give me any privacy to get onto the bed she just stood there and watched. She was so rough with me and it’s so sore and tender down there. As she opened the outer lips too look, she teared the skin because she did it too rough. I walked out of the docs feeling worse than when I went in. Disgusting!!
I am going to look into those Sitz bath as this is the first time I’ve googled it but I have saw “Sitz bath” mentioned a few times on this site so many it’s worth looking into.
I will mention Amitryptiline next time I go (to see a different doc of course!) and see what they say. The docs are not helping at all!
Molly x
That is disgraceful, how unprofessional of the doctor. you must write and complain!!