Hello everyone, I'm here to kind of discuss with others who have gone through this before and just desperate for advice. I'm a 16 year old female, and for years I've kind of always experienced itching down there which I never told my mom as I supposed it was normal. Being the curious teen that I am, I decided to take a look down there with a mirror and was taken back by what I saw. I've researched lichen sclerosus a lot, and although I'm scared and very embarrassed to tell my mom that I need to see a doctor about it...I'm pretty sure this is what I have. When I looked down there, I noticed white patches between my labia majora (like I said, I've researched this many times as I am very scared) on both sides starting in the beginning of my labia majora and on the end. This may sound unclear but please bare with me. You would only be able to see the white patches if you looked inside of my lips, not just by looking at my vagina. And lately, I've noticed that the left side of the inside of my lip is kind of getting smaller so I think it's time to inform my mom before it gets worst. I'm just so scared, I'm too young for all of this. Who knows for how long I've had this! I just need advice, please let me know if I will be able to catch it now and stop it from getting worse. And most of all, I just need to be able to relate to someone because as of now...I feel ashamed, embarrassed, and alone. Thank you for reading, I hope you can give some feedback!
Hi Mila, my daughter is 11 and it is her who has LS so I can't speak from experience but you really must talk to your mum and see someone. My daughter was prescribed a steroid cream and it has helped her immensly, we have also cut down on sugar and yeast in her diet which I think has also helped as we have managed to stop using the cream. With my daughter she seems to have flare ups and so doesn't have it all the time. With all the research I have read everyone has different symptoms and outcomes so please don't be scared by everything you read. My daughter doesn't have her inner labia anymore but everything else is fine, the whiteness has even gone which I had read would stay forever. It's important to talk to someone and get some cream, you must be so uncomfortable all the time and that is miserable, your mum would be so upset to know you are suffering. There is absolutely nothing to be ashamed of, it really isn't a very nice condition in such a private area, remember that doctors have seen it all before, my daughter has been showing her bottom to many consultants over the passed 6 years due to constipation and she still gets nervous but they are usually very good at putting you at ease and they see it everyday! Please don't feel alone either, there are many lovely people on here to talk to, there is also a Facebook Page if you have that but you have to ask to join as it is a closed group. Good luck, Jo x
Dear Mila. I am very sorry you have to join our ranks at so early an age, but yes, even children get this disease. As you are so young I hope a cure or better treatment will be found later for your benefit. For now it is a matter of keeping it under control.
You definitely need to go see your doc. Yes, it is embarrassing but docs are used to peering at all parts of people's bodies and it is all in a dsy's work to them.
However, not all docs are familiar with LS so take some online info with you. When first I went I did that and my doc looked it up there and then on her computer as she had never heard of it before.
Most of us are prescribed a very strong steroid ointment or cream, called dermovate in the UK, but to be used sparingly, and this does help stop the itching , therefore the scratching and ensuing skin damage.
Take your doc's advice but do keep using forums like this too, as our pooleld k nowledge is invaluable.
Sending you a big HUG xx
Hi Milan,
i understand your embarrassment, but I am a mother with two daughters, and I'm sure your mum would help. First off you need a diagnosis from a gynaecologist, if it is Lychen Sclerosis, he will give you a cream to stop the itching, then I advise you go the alternative route, and look at diet, and use natural creams and oils, also a probiotic is very helpful. Then you will be able to manage it yourself and learn what makes it flare up, maybe stressful situations.. Or different foods... Or materials that you are wearing.
No point in worrying as this will make it worse, get along to the doc, and take mum with
ann xx
Hi Mila, You're a very smart girl to have figured it out and come here! I'm an old lady now and no doctor ever recognized that I had LS my whole life. I was an itchy little girl and an itchy teen and always felt guilty for having my hands down there. I'm so glad you looked!! I used to get horrendous boils in the crook of my groin and was so scared, but never told anyone.
One easy thing worth trying (I know I was terrible about it as a teen) is sugar, especially chocolate. I'm not saying this is the cause, but it very likely makes the inflammation worse and right away.
These other women are right about getting the cream – there are a number of different names, but it's the most potent corticosteroid they make.
Teens wear such tight jeans these days – I wonder if you could be brave and set your own style. Cotton panties are a must, too.
I used to believe I just wasn't washing well enough, so I became an furious sudser and scrubber – worst thing I could have done. Just use water!
Now the good news – even without treatment I had lots of great sex during periods of remission and I have two great kids. Those horrible medical photos you see are old ladies who were never treated and probably did all the wrong things for 70 years. You're catching it early.
Hope we'll hear from you more. You have an opportunity to be a support to other girls.
Mila,
Sorry to hear you are going through this alone. It can be frightening and overwhelming. It sounds like you can approach your mother about your suspicions and concerns. I recommend that you go to a doctor to see what is going on. You shouldn't have to carry this burden on your own. If you do have LS or something else there is treatment to manage. My thoughts and prayers are with you. Please work through your fear and embarrassment and get help and support.
Well done sweetheart for finding out as much as you have AND for the initiative to put yourself on here. Instantly you are now not alone. I know it's embarrassing but NEVER feel ashamed. You have not got this because of anything you have done or not done, it's just one of those wretched things. You must tell your mum love. There's a good chance she won't have heard of it but you've done the research and can back it up. Many family doctors are fairly ignorant about it too so you may have to push for referral to a specialist and your mum can help with that. Whilst your mum may be upset for you that you have this condition she will definately be a lot more upset at the thought of you suffering and worrying without her. Tell her as soon as possible love and you'll feel better straight away. You can then move forward together. There is lots of very sensible advice already given you here from people who are experienced with the condition AND mothers too and all our hearts go out to you but believe there IS a way forward. Xx
Thank you so much for all the advice and letting me know your daughters story. It is relieving to hear how good she is doing and that it is possible to get LS under control. I will most definitely talk to my mom about all of this and let her know that I need to see a doctor, you are right...she would hate to know I'm suffering. Since you mentioned your daughter has constipation, do you know if it is related to LS? Because for the past 6 months, I've been experiencing constipation which is pretty rare for me. Thank you so much once again Jo, I appreciate it a lot!!!! xx
Thank you so much for taking the time to read my post and replying, it means a lot to me as I am so lost and confused! I will definitely take your advice and bring some research on LS with me, after all...I am going to inform my mom on it as well as I'm sure she has no clue what it is. Thank you once again Joodie, I will keep everyone updated! xx
Thank you so much for the advice Ann, I understand where you're coming from and tonight I'm going to inform her about all of this. I will be sure to change my diet to the foods you have mentioned, thank you so much again...its good to know people really care and want to help out!! xx
Wow thank you so much for all of this, I can't even begin to explain to you how helpful yours AND everyone else's responses have been. I, too, have always been itchy down there which is why I thought it was normal to me, but I'm happy I finally looked down there instead of living with it and not knowing what was wrong. I will definitely cut back on any sugar, which like you said..will be extremely hard but it's for a good reason! I'm sure the doctors will prescribe me a cream so I will be sure to let you know which one it is. Yes jeans are very right these days, which is why I sometimes switch to leggings, sweats, or other loose fitting clothes because it makes me itch even more. I will be sure to do that! The good news made me feel a lot better, I'm still young and would love love love to have kids one day and be mom but what I have read scared me a lot. And all of those pictures DEFINITELY did not help, so thank you for reassuring me of all that! Thank you so much Morrell, your post means a lot to me and I can't thank you enough! xx
Thank you so much Willie, I no longer feel alone as everyone have been so sweet and gave me a lot of advice. It is very nice to hear from others who have LS, and have experience with it as I have no clue about it. I will most definitely get the help I need, thank you again Willie!!!!! xx
Thank you so much Chrissy, your post made me smile as of how sweet you are and how much you made me feel better!!! You're right, feeling ashamed is something I shouldn't feel as I did not get this because of something I have done...it happens. I will be telling my mom tonight once we have a chance to be alone and talk about it in privacy, as I have two younger siblings. I was thinking a gyno first and then go from there, but I will talk to my mom about it for sure. Thank you for reminding me that I am not alone in this, the support I have received from all of you has made me feel so much better about the situation and has given me much greater knowledge on it all! Thank you so much once again Chrissy, you will be hearing more from me soon!!! xx
You sound such a sensible girl and the way you've responded to each individual here is exemplary. Fear is paralysing but action no matter how small helps you take control again and leads to further action. Good luck with your mum but it will be fine Xx
You are such a sweetheart, Mila. You'll be a good mom. You mentioned constipation above. I was always constipated as a girl. I remember my aunt cautioning me against straining on the toilet. I had a lot of stomach aches. It's often mentioned as a result of our body holding back in anticipation of tearing around the anus. You should eat lots of fibre to try and loosen things up. And drink lots of water. Plus healthy guts make for healthier skin. Hope your talk with your mom goes well.
Thank you so much Morrell, the fact that you have replied once again means a lot to me!!! It's so awesome to have support from people like you! But as for the constipation, do you think it could be linked? I have never been constipated until I found out about this a while ago! Thank you, I will be sure to eat a lot of fiber and drink more water...I need to stop this now before it gets worse! I'm sorry for asking so much, just one more thing...on the forum about the fact sheet, someone mentioned that a low thyroid condition could be associated with all this? It is weird that I saw this, because tomorrow I am actually going to a thyroid doctor as my tpo levels have been quite high, I have lost 20 pounds since November, and I've been losing hair so if it is related to that and I do have a thyroid condition...it would all make sense in a way. As you can tell, I have a lot of problems with me! Lol. Thank you so much once again Morrell, for not only being so sweet with replying and giving advice but also just hearing me out! xx
Chrissy, thank you so much..everything you have done from writing to me and boosting my spirits to giving me advice means a lot to me! I appreciate the fact that you have taken the time to write back to me and read my story. You are very right, the sooner I take action...the sooner I will be able to take control of this. I did not get a chance to talk to my mom last night as I had family over, but tonight will most definitely be the night. Thank you once again for following my story and helping me through this journey, it means a lot! xx
Wow, one more thing Morrell...sorry for all of this but I'm just finding out more and more! Is it possible that I may have an auto immune disease? My mom actually had Graves Disease and had gotten her thyroid taken out, which on the website that I was researching auto immune diseases on, it said that it is considered an auto immune disease. Please get back to me and let me know what you think, thank you so much!!! xx
Well, Mila, LS is one auto-immune disorder. I also have psoriasis, but it's 100% clear now. Some women have other auto-immune disorders. It's not another thing, it's really sort of a kind of body. And I believe that in this world we live in many, many people have one or another. There's thyroid trouble, intestine trouble, migraine headaches, arthritis, and others. Having LS absolutely does not mean you'll have another one.
My mother had irritable bowel, probably even as a girl, then rheumatoid arthritis at age 40. I have neither. She's a nervous person who had a very difficult childhood which she buried emotionally. I sort of wonder how many emotional/hormonal toxins were passed on to me as a baby. It is relatively unusual to have it from babyhood through adulthood as I have.
Stress is our worst enemy. I try to remember that stress doesn't come from outside, it's our own anxiety in response to external events which are neutral from their side. The best work you can do is getting to know your mind and observing the early stages that come before an upset. My mother tends to have an outburst and then say 'I can't help it!' I disagree.
Mila, there's no study that links any of these things in a cause-and-effect sense. My gynae told me LS is 'realted to' psoriasis, in other words they often occur in the same person. It will certainly be good to get your thyroid straightened out. You don't want to mess with that. I had a mentally ill sister and I've read that she may have neglected her meds which made her super anxious. I suspect she was a drug addict, so her troubles were complex. She had no thyroid from the time she was about twenty.
I think that when my psoriasis was badly flared up from stress the LS also flared up. Whether one caused the other or not, I don't know. These days the LS seems more likely to flare a bit, while the psoriasis seems to be seriously in remission. I hope.