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
Bridge_of_Sighs mollymadx
Posted
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
Nancy_K_B Bridge_of_Sighs
Posted
Oh Bridge_of_Sighs! How wonderful and HOPEFUL a complete write up you gave for Molly. Thank you for all of us too.
I haven't been on in a while either, but it feels very good to come back here now and then as so many new women need this kind of encouragement and KNOWLEDGE that our Docs just don't seem to have.
I hope Molly sees this very soon. Thanks again, to let us know that even our fusing might unfuse given time.
nancy88616 mollymadx
Posted
So sorry you are experiencing this at such a young age. My systems occurred after I turned 70 and it took 3 years and 4 different doctors before I found one who promised to put me in remission. She prescribed Betamethasone Dipropionate .05% and after 3 months of use, I am in remission. BUT, I clean my self with water and baking soda after I wee, pat dry and then lavishly apply OLIVE OIL to the area. NEVER clean with soap bc it irritates LS and keep it moist with the OO. Several people on this forum have achieved good results from this procedure .