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

37 Replies

  • Posted


    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.

    • Posted

      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

    • Posted

      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!

    • Posted

      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

    • Posted

      That is disgraceful, how unprofessional of the doctor. you must write and complain!!

    • Posted

      MOLLY! you've got to be the umpteenth person who has had this type of experience from their gynecologists! WHAT is going on with these folks? Last year when I was at the gynecologist (who've I've never met before) she gave me a very surly hello, not interested in anything i said.. and when she was looking down there I "overheard" her say in stage voice " Use it or lose it" I didn't respond (I'm 72 and haven't had a partner in years. She never met my eyes and just left the room having spoken only to the recorder person in the corner. . with just like everyone else here mentions regardless of american or UK etc... NO instructions, no compassion.When I got back up with my integrative cardiologist doc a weeks later, He didn't even get all the way into the room before, apologizing and saying, "yeah I know, don't worry you never have to go back there. (all he needed was a confirmation -grin - integrative docs & cardiologists don't tend to have stirrups in their patient rooms).

      Be sure to get some aloe vera gel - the 99% only aloe - no fragrance fillers, lotions etc. it will actually help heal up the open sores. and please dearheart read the nutritional protocol so you can decide which of the supplements you are ready to build up your immune system with. I know - it's an expense to get started; I had to "eat bean" to get them all started and now I replenish as I can afford them and intuit. Blessings,

    • Posted

      OMG Molly, your experience was just dreadful. I 'm glad you are reporting her.

      You will find more info here than in any doctor's office.

      Keep in touch. Hugs.

    • Posted

      That's awful, Molly. Definitely complain.

      I think many doctors don't know how to address us because they are unable to give us hopeful information, but that doesn't excuse dismissive and rough treatment. I have found over and over that any expression of alarm, depression, fear from me as a patient is just met with a breezy 'well that's just what it is: handle it' type of attitude. I sometimes feel like saying "how would you feel if your vulva was slowly deforming - your womanhood/sexuality changing before your very eyes and there is little you can do about it??" I am 65 and married to an understanding man but these thing still matter. My GP told me the NHS haven't the time to commiserate or offer any counselling for the way this makes you feel in your mind, they can only monitor your condition and prescribe steroids.

      I met a very gentle, very young dermatologist yesterday who reassured me I have no signs of cancer, just LS, but she didn't tell me anything else about LS that I don't already know through my own research and from ladies on this forum. So it is down to us to find our best management systems and hope we go into long periods of remission, I guess.

      Molly, take heart, you will find your own products/supplements/diets eventually and they will ease your symptoms so that you feel you are managing your LS, then it won't be as frightening. All the best to you.

    • Posted

      Nancy - "use it or lose it"????? What a crass thing to say and how very stupid as it simply isn't true anyway. And to not listen to you nor look at you at all is just downright rude and arrogant. Sometimes I think doctors simply see us all as a piece of flesh and organs, completely forgetting we are human beings with emotions like them. Grrrrr.

    • Posted

      grrrr is right. I could brush it off being my age and experience (smiles and knowing I had many good years) but I feel for the young ones like Molly and others who are so young their sexuality is still being developed and such lack of sensitivity really is not excused by "being busy". How long does it take to offer a commiserating smile and a hand held? I've even offered to make handouts to my doctor if his office is too busy to make up such a simple thing that would SAVE them the end and INFORM new patients. well I haven't considered helping that gyne - but I suppose I should.

  • Posted

    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....

    • Posted

      @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

  • Posted

    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

    • Posted

      Thank you Samantha! I am still finding things out about the condition and finding different remedies to trial and error. Just a lot to get my head round x

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