Distraught over new LS diagnosis!!

Posted , 18 users are following.

Hello. I have just been diagnosed with lichen sclerosis a few days ago. I am 25 years old and this is devastating to me. I am from Canada and I am currently living in London England. I had a vulvar biopsy about a month ago which has left a bump/scar. I am currently travelling around Europe for he summer and the heat is making my ls worse. I do not have any treatment creams because my biopsy results came back while I was still away. It took about 6 months for me to see a specialist in London. I currently have clitoral phimosis and my labia minora has almost disappeared. I am distraught about this. Will the steroid creams help with the phimosis? On top of this, I have just started dating a man in England who has no idea what I am going through. I don't know how to bring this up to him. I feel embarrassed about it. We have only been dating for three montha. I would really appreciate some advice on all of this. Also, I have been using biooil on my vulva while I have been travelling since I am unable to get any treatment until the end up august. Thanks.

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  • Posted

    So sorry Nicole as you are still young.

    You need to start treatment to get it under control.

    A prescription is required as these are not over the counter ointments or creams.

    I use Advantan fatty ointment  as it is well absorbed and not the most potent of the treatments.

    People will have a lot of advice on here for you but it is important you have a very good specialist looking after you or even a clinic that specialises in this which should be available in London.

    I attend one in Melbourne at the Mercy hospital and it would be good if you could seek out something similar.

    Because women vary so much in that area men do not notice the differences.

    I worried about that with my husband of nearly 50 years and he did not even notice.

    It does get easier to manage and take comfort in the fact that it is not life threatening just a dam nuisance!

    As for the clitoral phimosis you need to see a very good surgeon who specialises in that to see your options.The issue with your labia minora will be handled by your specialist at the end of August who can also advise on the phimosis.

    All the best and sorry once again for your struggle without expert help for six months.

     

    • Posted

      Thank you so much for your advice Kathleen!! I really need this right now!
    • Posted

      I have Clitoral phimosis from my LS, I just dont know what to do? I don't get any sensation/pleasure from my clit or penetration sad Is surgery the only way? Did you have any sensation from  your clit prior to your surgery?

  • Posted

    Hi Nicole

    I am so terribly sorry to hear diagnosis. However, do not despair, as there are very knowledgeable ladies on this site and you will get excellent advice here. In the meantime get yourself some organic coconut oil and 100% aloe vera gel. If you cannot find 100% then down to 97% gel will also do but not less. Apply those two lavishly whenever you can and especially when you go to bed at night.  It helps tremendously with the itch.Wear cotton panties. If possible, also get yourself a small quantity of bicarb of soda and put 2 to 3 pinches in approx 100mls of boiled and then cooled down water. Put in a little spray bottle and spray on and pat dry whenever you use the loo. You can also use witch hazel instead of the bicarb, but witch hazel should not contain alcohol. I hope this will tide you over until end August when you get home. Most of us are using Clobetasol (Dermovate) so I am sure your Dr will prescribe that. Some ladies are also using manuka honey UMF 15+ strength (must be from NZ) with the coconut oil and aloe very gel and they say it works for them. I, unfortunately have not been able to try the honey, as I am from South Africa and honey is on our list of prohibited and restricted goods, so I cannot buy it online because it cannot come into our country without an import permit. Dont be embarrassed about your condition...it is not your fault. Once you know your man a bit better and it seems he's in for the long haul and has your trust, you might want to break it to him bit by bit, but test the waters first. You will need companionship and support from him more than anything else. I am 60, have been diagnosed in April of this year and luckily my husband understands that sex can be very painful, so is very supportive. I understand that in your case it is completely different, as you still have your whole young life ahead of you and I just feel so sad that you have to be saddled with this at age 25. Anyway, take heart, try not to stress as it makes the condition worse and know that you will get wonderful advice on this site. You will soon know what works for you (as we are all different and learn by trial and error) and get your condition under control. I KNOW you will! Please let us know how you are getting on. XXXX

    • Posted

      I will definitely try the aloe and coconut oil if I can find it here ( I am in Slovenia ) Thank you so much!!
  • Posted

    Hallo nicole....Sympathies with your diagnosis.

    There's no doubt it knocks one back when newly diagnosed.

    I am recently diagnosed myself and initially it is upsetting and worrying but accepting LS is part way to dealing with it.

    Searching out forums like this one will help enormously.

    Any worries or questions just voice them and the helpful ladies on here will do their best to support you, that way you will benefit and won't feel alone with your problem.

    There are quite a few ladies on here with years of experience concerning how to deal with LS and many are happy to talk about their own experiences. 

    I am assuming your male friend is also quite young and may not know much about female problems or what is involved so if it is getting serious I thing it is good advice from Cuppa to break it to him gently.

    Hope your situation improves for you. 

      

     

    • Posted

      Yes, I will definitely try to break the news without he most graphic detail, haha. Thank you so much for your advice!!
    • Posted

      Also, I wanted to ask you ladies how do you break this to someone gently? Maybe just describe how I can have itching and pain? Sorry for all the questions !
    • Posted

      Well I hope it isn't too tricky for you nicole but if he is a normal guy he will start putting the pressure on if he hasn't already.

      Let him start to make the advance first( and I mean start not when he has becomes single minded) that is your opportunity to approach the subject without the need to bring up the subject out of nowhere.  Feed him bits of information and see how he reacts. If he wants to know more hopefully he will start to ask questions.

      How he reacts depends on the charactor of the man but he is going to have to know something.

      It's not only how you look, if you become intimate you don't want it to be a painful experience.

      Hope things go well and you can work something out. 

  • Posted

    Hi Nicole so sorry to hear of your recent diagnosis. I was only diagnosed a few months back and it is very frightening and confusing but trust the women on this site you will get your head around this and get things under control with treatment.  I have read many posts from women who have had LS for 20 plus years and have kept things well under control and have had healthy relationships, families and comfortable lives. Stress doesn't help but we all know it's hard not to worry when you first find out this news. Kathleen is right women all look different down there and men don't notice.  My specialist thinks I have had LS since my thirties and my partner never noticed nor did I until I got a mirror and looked!  Until you can get some treatment try the coconut oil or aloe vera - just start with a little in one spot to ensure no reactions to anything so you don't make things worse.  Different things work for all of us. I changed to all cotton underwear and stopped using any body wash or soaps down there.  Please try not to worry and keep us informed of how you are going.  This site kept me rational and gave me a lot of help and motivation to get myself in the most comfortable position possible. I am 80 percent better now than when I was first diagnosed and had major flare ups.  
    • Posted

      Thank you so much for taking the time to reply to my post ! I will let you annd the other ladies know how the aloe and coconut oil work for me!
  • Posted

    Nicole, you came to the right place. I muddled through without diagnosis or treatment from age 22 to 61. I had two kids in my thirties with natural childbirth. Ive had several long stretches of remission, lots of great sex, and too often put up with painful sex. That's the part I would change if I could go back. Don't dump too much info on your guy. You've been given good advice above.

    Tricky to be trying to look after LS on the road and stress is the number one thing that makes it worse.

    • Posted

      I was travelling with my sister for the first part of my trip. She was a great support. I am travelling alone now and trying to stay calm. I think I am feeling a bit nervous to go back to London and actually start dealing with this disease. I know the creams will only make me feel better thoughsmile Thank you for your advice and reply to my post- I really appreciate it!!
  • Posted

    I was diagnosed about 3 months ago. I am 44 and probably have had it for many years, just not diagnosedI am responding well to my mild steroid (many on here are on a very strong one). And I also use olive oil after most bathroom visits. I have a product called emuaid I use to supplement my steroid. I love it the emuaid. It takes awhile to find a rhythm to treatment and I found it very upsetting for awhile. The support on here is just wonderful. Honestly, I learned far more on here than I did from my Gyno. I find sweating is very irritating for me. Important to spray off or shower off the area after sweating. Pat the area dry and apply extra virgin olive oil or coconut oil. Some like aloe Vera but others find it irritating. I used it for awhile but something was irritating me so I backed off on the aloe and the coconut oil. May try them in future again.
    • Posted

      Do you think it could be possible to have had this from the time of childhood to adulthood. I have memories of being so itchy that I made myself bleed when I was about 8 years old. I'm curious as to whether this has gone undiagnosed since that time rolleyes I will try the olive oil. Thank you very much for your advice!!
    • Posted

      Hi  Nicole travelling esp alone is stressful, so that may make you feel worse at the moment. I think you are very brave and am envious of your pluck!

      As to what to tell your new man - why not say you have an auto immune condition - like asthma or arthritis - ie not catching -but that it will mean that if you do end up in bed it would be nicer if he was gentle - ie not too enthusiastic. Beforehand YOU lather yourself in a  moisturiser / barrier - esp if you are on the pill- If he is wearing a condom  then you wont get his bodily fluids on you - As you will have read you would need a barrier from your body fluids too. I am sure by now if you are in a position to do so  listen to Dr Goldstein's webinar- lots of reassuring information on there too. the advice you have been give is first class. Remember NO smellies - bland is best! You MAY be able to get a simple aqueous ointment from a pharmacy with which you can wash and it leaves a moistuising surface. Some while ago  there was a post about using bleach free loo paper and sanitary towels, no biological washing powders or fabric softeners, talc is also a no no

      Happy wandering Best wishes 

      Sue

    • Posted

      Yes, I believe that it's possible you had it then. I had severe anal itching as a teenager... Symptoms abated for years then started in vulva area.. I'm thinking for sure 10 years ago, possibly longer.. I had a nasty flareup with severe itching and some soreness about 3 months ago. Got so desperate for help and finally received the diagnosis. For me, the steroid is very beneficial. I also have drastically cut back on sugar. Sugar increases inflammation. sweating is very irritating. Try to shower off quickly if you do sweat or get too hot.
    • Posted

      With ls, do I need to use a condom to prevent from further irritation ( that is if I'm able to even have sex)

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