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9 year old daughter diagnosed with vaginal LS I'm in despair

Posted , 12 users are following.

sue5740
sue5740

After a recent exam due to an accident she was diagnosed with LS, I had never heard of it. Having read up on it since her outcome seems bleak medically. We are waoiting for a specialist dermatology referral & have been given Eumovate cream to use in the meantime. I would be grateful of any advice to halt the damage in its tracks before it gets any worse, from people who have experience. The Dr told me it was very rae in young children

 

0 likes, 29 replies

29 Replies

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  • Chrisy
    Chrisy sue5740

    Posted

    Hi Sue, don't be frightened by all you see. I had this condition very young. Without diagnosis I coped for years dealing with sore bits and tears oblivious to the condition. It did not kick up a gear to serious until after a Hysterectomy at 50 and I spent many years in remission of and on. I have a beautiful daughter and had a happy sex life until a few years ago. I am now 60 and I think my sex life may have ended any way around this time with husband having issues too. I just want to reassure you that most of your fears are probably going to be just that. It would be better to deal with this condition as symptoms occur rather than expecting and looking for the worse outcome. I wish you and your daughter well. I hope she is as happy as many of us on here are. Remember the worse possible scenarios are extremely rare.
    • sue5740
      sue5740 Chrisy

      Posted

      Chrisy your reply made me cry a little, it's just what I needed to hear thank you. It's been a very bleak day and I'm struggling to see any positives in this diagnosis for my lovely little girl

      I know it's not a life threatening condition, but it is life changing. I just want her to be able to experience all the normal things in a woman's life, as you kindly explained is possible.

      I've read horror stories already of ladies who have lost almost all of their genitals to this condition and it scares me for her, perhaps I should just stop reading about it altogether it just all seems so negative x

    • Chrisy
      Chrisy sue5740

      Posted

      I have lost all my bits but it sounds much worse than it is. It was after the age of 54 when that happened. You can read all about this condition and it is good to stay informed as we all help each other by sharing our ideas for treatment. Just remember to try one thing at a time with your daughter so you can tell what really works for her and what doesn't. Don't frighten her. Don't believe everything you read just take it as information you need to bear in mind. Another point is that she may not want to continually talk about it particularly when she gets a little older. Respect her wishes. Arm her with information in a simple way now and try to encourage her to manage her own condition and to tell you if she is worried about anything. I am sure you are a lovely Mum I am sure you will already have thought all this. Best wishes. X
  • justine89448
    justine89448 sue5740

    Posted

    Hi firstly I would like to say I'm so sorry she has to deal with this. Ls can go into remission, so don't give up hope. For many of us it's closely linked to food. But a she is a growing girl I would advise you get a food intolerance test done. It's called a igg test. It's a blood test that's tested against the top 100 foods this may give you an idea if any food is irritating her system. I would try and do this soon as if you start cutting things now and then get tested the foods will not show. My biggest trigger is high fructose corn syrup it's also called corn syrup or fructose syrup.

    It's in lots of things like ketchup bbq sauce mayonnaise etc. Also in sweet things as it's cheaper than real sugar. We are always here to help and these ladies have a lot of knowledge xx

    • sue5740
      sue5740 justine89448

      Posted

      Hi Justine

      Thank you for your reply

      I am going to request allergen testing when we see the specialist, I received our appointment today but it isnt until July so I will just have to struggle on until then, all advice on here is helpful though as it all seems to point to the same thing, diet is a contributing factor

  • Bridge_of_Sighs
    Bridge_of_Sighs sue5740

    Posted

    Hi Sue, my daughter was diagnosed with LS age 4. She was given Dermovate (a very strong steroid) to use first, then Eumovate later as it lessened. We hardly used either. She went into total remission a year later and now is just approaching puberty so I'm watching carefully. We have had conversations about it being very important to tell me of any discomfort etc so I can help her look after herself.

    Ironically as her condition disappeared I then got LS, so am wondering about the genetic link, but that's not relevent to your daughter...

    From personal experience reducing sugar has controlled some of the symptoms. Gluten/wheat etc has no effect on me , others here don't take dairy. Everyone reacts differently so it will take time to work out what works for her and what doesn't.

    From the chemist we use epaderm in a tub (not the cream) for washing instead of soap (I'm in the UK), it doesn't dry out the skin and creates a barrier against urine. My daughter found urine would sting so we had a jug in the bathroom to pour water over her when she needed a wee. Cotton pants, no tight clothes, lots of air and she'll be more comfortable in the long run. There are more holistic barrier creams from healthfood shops. I've also used Weleda Calendula nappy cream, Emu oil, coconut oil (some people have had a sensitivity to this, but it's very good if you're not sensitive). You do need to change barrier creams. LS seems to get used to things and they become less effective until you have a break from them. Build up a few things you know work and rotate them every few weeks.

    Think of it like diabetes, it has to be managed but needn't be life altering.

    There is a very good site called Living with Lichen sclerosus with lots of advice. I don't think I can post links but if you put that into google it will come up. It's got a green strip down the left side.

    There are good chats on here and you can browse them or post questions and many of us will be happy to answer as soon as we can.

    Best of luck and a big hug to you and your daughter.

    • sue5740
      sue5740 Bridge_of_Sighs

      Posted

      Thank you for your reply, hugs are alweays welcome!

      Its nice to know someome is ion a similar position to myself, although I wouldnt wish this on anyone elses child if you know what I mean?

      May I ask if your daughter has any permenant damge or have the steps youve taken managed to limit scarring? thats what im really scared of, not managing it properly for her and causing permananent damage, its such a massive responsibility

      I will look up the website you suggest, thank you. And also look into the remedies suggested by yourself and others, i really want to do the very best I can for her

      My little girl, although only 9, has recently gone into early onset puberty and I am wondering if there is a link hormonally? I will certainly be asking the Dr. 

      We have been referred to a dermatologist (UK) is that the correct area for this age group would you think? unsure if it should be paediatrics or even gynaecology?

    • Neldog
      Neldog sue5740

      Posted

      Sue, there is a link between early onset puberty and low thyroid ....  You might want to get her thyroid antibodies checked....

      xx

    • j02359
      j02359 sue5740

      Posted

      I think what matters above everything else is that you are referred to a consultant who is a genuine specialist in LS.  I saw a lovely dermatoligist for ages but the person who has now helped me git more of a grip on the disease is a gynacologist Professor Wendy Reid who specialises in vulval disease.
    • Bridge_of_Sighs
      Bridge_of_Sighs sue5740

      Posted

      I want to preface what I am going to say with the fact that none of us on this site are medical professionals, we are just sharing what works for us and as it is a very varied condition, it seems to react differently in different people. The trick is finding what works for your daughter from all the suggestions.

      Now, to answer your question, my daughter doesn't have any scarring. She was very young and it appeared then disappeared. Quite a few of the women on this site developed LS at menopause, others have other auto immune conditions such as low thyroid or Coeliac, for some it's come out of the blue. Mine was menopausal and hormonal, I've had tests for other auto-immune conditions which were all clear, my daughter? well there's lots of developmental stuff going on at that age so who knows, but I will be very alert as she goes into puberty.

      I'm answering from both our perspectives as hers was long ago and brief so I've built up most of my knowledge thorough my own experience.

      The important thing is to make sure she's comfortable. On specialists; I had three Gynae visits which didn't pick it up, including the one that everyone said her name in hushed voices of reverence. Two GP's had no idea and I got told off for being a hypochondriac. We took our daughter to A&E because she was bleeding, and ended up in a child abuse clinic. Very harrowing for us but thank goodness they exist for the children that do need them. The doctor there saw her every couple of months to monitor its progress, then pronounced her all clear. I doubt you'd want to go through that.

      Most of the specialists seem to be in Vulval dermatology clinics. There are a handful in the UK. Derms don't look under your knickers and Gynaes don't do skin, so it falls between two expertises. Having said that I now have a brilliant GP who is even better than the specialists I saw, so I'm happy to stay in her care. I moved doctors several times till I found her. You may have to do that. Find someone you trust and stick with them. The specialists I saw didn't have a very good bedside manner and I wonder how they'd be with a child. Again that's very much a lottery. Do a lot of research, ask a lot of questions. Make sure your daughter is comfortable with who you see.

      A word of warning, my daughter is very anxious about doctors now as a result of quite intrusive examinations when she was small. You may need to monitor that carefully and step in if needed, though your daughter is older and it might be easier to explain things to her. the PSHE that they do at school covers not allowing anyone to touch you unless you give consent, you might need to think carefully how to frame that for these circumstances. We tied ourselves in knots not thinking it through carefully enough in our panic, and probably made things more scary for her by setting rules then breaking them. Take a deep breath and work out how you're going to handle this to keep her reassured. I speak from experience here.

      That's all I can think of for the moment. But please feel free to ask anything and I'll answer if I can.

      Bridge

       

  • Chrisy
    Chrisy sue5740

    Posted

    Hi. Don't beat yourself up about treating your daughter with sudocrem. It is actually quite soothing. Most of us, no nearly all of us will have treated ourselves in various ways prior to diagnosis. I doubt if one of us did it right for long periods of time. I had it in my twenties and didn't get diagnosed till early 50's. It went into remission many timesband on occasions when it flared and I visited doctor it wasn't picked up. Lots of us had it for years before being diagnosed and we knew how itchy it is and how sore you can be. Who would imagine that it was such a condition. The majority of us had never heard of it before. At least you have a diagnosis now. Bless her.x
    • rockin_R
      rockin_R Chrisy

      Posted

      I agree with your previous responder. Believe me none of us have known and if you hadn't been lucky enough at that point to find out there's no telling how long she would have lived with that. You got the best start out of all the people I've read on the Forum. Just treat it as directed. You are blessed so be blessed and be a blessing share your story all over the world if you can thank you God bless you prayer for the little one she's going to be very brave don't worry about that
  • jenny9699
    jenny9699 sue5740

    Posted

    Hi sue I can speak from the point of view of your daughter, I had symptoms from the age of four and got diagnosed around the age of 7, I'm going to be very honest, it's unlikely that this is going to be easy. I'm now 17 I have had near to no LS for the past 3 years, in cases like mine and I hope your daughters the LS went away when puberty started. Sadly in my personal opinion the development of a period was very hard mentally because of the previous pain in that area. With age comes understanding but for a young child and teen watching your friends play when you can't because of pain or missing out on experiences it is very hard, especially when it's something that people can't see. It's this big scary painful secret that she may not even tell you about all the time but that's ok just be there to help her carry the load (even carry her). If you have any questions sue just message me, I'll do all I can to answer them as my family and I never had anyone to ask.
    • sue5740
      sue5740 jenny9699

      Posted

      Thank you Jenny that's very kind of you, thanks for being so open and honest it's appreciated
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