Young LS sufferer. Scared :(

Women's health
1

I'm new to this forum. I guess i'm not sure who to turn to anymore regarding this. I'm 22 and I was first diagnosed with LS 2 months ago via my specialist ob/gyn. I was put on Disprosone OV - a steroid treatment initially twice a day for the first month then once a day for another month. 

The white patches are still there. They use to have a slight rough/thickened texture and that seems to have gone now. But its almost been two months on treatment and they are still there? It feels like they will never dissapear. 

I'm so scared of getting VIN or cancer from LS. I've read some horrific stories of women with VIN who have repeated surgeries only to have lesions return a few months later. 

My symptoms are burning and soreness - i've never experienced itching. And for some reason doing kegel exercises really hurts!? Anyone else have this problem? My urethral meatus has LS on it so i'm assuming its making everything extra sensitive and sore down there. I don't seem to have issues with urination though. My perineum is also irritated and when I walk it can get annoying as the skin rubs and causes friction. 

I'm just so scared about this. I honestly don't know what to do to relieve my fears. All I can see in the future is me having discomfort in my vulva and costantly having to check myself. 

2

Many go the steroid route...me I prefer to go with more natural methods as steroids just scare me senseless.  When I am sore I use witch hazel in a spray bottle to speed healing (others swear by 4 pinches of baking soda with water in a spray bottle). Use this each time you toilet.  I will say that the witch hazel can burn...but it's just temporary and does speed healing for me.  For moisturizing coconut oil seems to be the preference and it is soothing...and naturally antimicrobial. I get the itch...and as long as I'm not raw I will use 99% aloe vera gel to control itching and it helps alot.  They say this is fungal...but many attempts of myself treating it as fungal has had no positive results...but that's just the things I have tried.  Now I'm doing caprylic acid and berberine. Have just started it...so can't speak to it's effectiveness yet...but suggest you read up on it.  There are many forums here on this site on Lichen Sclerosis and also Lichen Planus. Lots of good tips and good information...so read on.  You can get considerable relief naturally. One woman who has been to doctors worldwide says to purchase gauze and to soak it in a solution of baking soda and warm water.  She says to put your legs up and lay the soaked strips across your private area several times a day for 10 to 15 minutes.  Says that will heal you up.  Others that use it in the spray after toileting report good results as well. Good luck to you.

3

First try to stop stressing that makes it worse I'm 28 I found out I had LS about seven months ago and with a ton of research I have found what works for me everyone is going to have something that helps differently because it is a auto immune dieses so depending on if it is a hormone imbalance a vitamin deficiency or just genetics mind is just genetics I had them run every test that was connected to LS so I turned to natural stuff and if course Dr Goldstein watch his webinar it will show you the proper way to apply your ointment and for how long it dose take a long time to go away every one is different and so is the severity but I will share what works for me I follow Dr Goldstein instructions of course but I stopped eating gluten I take kids pro biotic once in the morning and once at night I take wheatgrass everyday vitamin D,coconut oil pills,biotin and air borne immune support I also use coconut cooking oil down there to keep moisturized and Vaseline when I am not at home if I start to get it on my back end I use medicated baby powder with zinc mind is almost all the way gone hope this helps

4

Athena 93317 has great advice as well.  Diet makes a great deal of difference. And a hormone imbalance is also something to look into. Many times with this disease you will find that your thyroid is off, but the regular test usually doesn't show this up until you are well into the disease...so have them run the panel for thyroid that is more thorough.  And yes again...a probiotic is super important...get a good one. I take the one that needs to be refrigerated...seems to work better for me.  Wheat grass, vitamin D...gluten free...all great advice...other supplments mentioned and not mentioned...being in the best health you can be will help alleviate or control your symptoms. Sugar is also your enemy...but so hard to give up.  And very important...do something that makes you happy every day.

5

Jules1100, I have had LS for many years and notice that it changes over time. I just turned 70 and had it for about 20 years or so. Cancer is not likely. Keeping the ointment up is important however sparingly! I use Advantan fatty ointment now but have used what you have years ago. 

It is scary but try to distract yourself with a happy life.

my main concern is atrophy which has been something that has occurred in recent years. 

At least it can be treated and monitored. 

Please know you are not alone and you can still have a good life and future with this annoying condition.

6

Most has been said already.  Jules1100 try to calm yourself a bit.  Do something you really enjoy doing.  Stress is also your enemy. As is sugar, most likely gluten, alcohol and possibly dairy.  My LS flares up when I eat the least bit of cheese, goat cheese is fine.  Saying - try to make careful observations and see whether certain foods make matters worse or better.  I have started to follow an alkaline diet.  Has benefitted me well.  

And I swear by the baking soda spray after every bathroom visit.  Also take baths with baking soda.  LS will always be there, but you can make it liveable.  

Read some of the discussions on this site, there is a lot of helpful stuff.  Watch Dr. Goldstein's material.  The more you know, the better you will feel that you can somehow control this 'beast'.  And yes, the main medical ingredient to control LS is still Globetasol, thin layer applications.  

7

Being scared is stressful, and stress is often the precursor to do many autoimmune conditions so do try and manage your stree levels. Occasionally you may get candida infection as well but it DOES NOT CAUSE LSC. You are unlikely to have  a malignant condition if you use the steroids and look at your vulva regularly, and visit your consultant. Do watch the webinar from Dr Goldstein as suggested by Athena. There is the alternative  therapies thread if you don't want to follow the convention medicine route, however while you are red and sore the last thing to put on your vulva anything that will exacerbate your condition, and burn it more!

read the helpful threads where a lot of sensible and supportive advice given. Also check out the new to LS on the home page,

the very potent steroids are used as the scar tissue in LS needs to be thinned 

keep friction to the minimal go commando if necessary- wear long skirts, no trousers or tights

keep body fluids off the area by covering with a barrier ointment of your choice,about 20 minutes after applying the steroid, moisturing the area is also very important to keep the area as healthy as possible.

some find reducing the sugar content in the diet is helpful.

Sadly there IS NO CURE at present, there is research starting being undergone. But it will be slow. The best we can manage at the moment is to keep the symptoms as comfortable as possible - watch for fusing and splits sores are go back to consultant if there is ANYTHING you are worried about, 

good luck and Don't stress too much, none of us want thing horrid condition, however, as some here said at least the condition doesn't show ,and of course it is not life threatening. Cortisol sin the body can cause heart conditions that are far worse. So take heart

best wishesSue

8

Remember Jules that your doctors have examined you none of us have, we all have different bodies we are all strangers to each other and can only let you know what has or hasn't worked for us individually. We can of course tell you of our beliefs, and our experiences and histories

But I don't think any of us has undertaken or taken part in double blind research, so everything we say is anecdotal. We did try to get an information page up, however Alan the moderator undertook this and put it up and gave links to the advice. This site was started up by medically qualified practitioners as I understand it. At times in the past there contributers who were convinced the medical path was not the path they wanted to follow so the Alternative therapies site was set up.

i am aware of an artist in Brisbane who wants to have a website , I hoped to help with a local computer expert, but they were not in a hurry to help!

I hope you take the time to watch the webinar, it takes an hour and explains the condition in detail, also look at previous thread

best wishes Sue

9

Jules, I'm 63 and got LS when I was your age. There are several different levels of aggressiveness in LS, but I had two kids by natural childbirth in my thirties. The one repeating pattern in my life is that too much friction-intensive sex makes it much worse.  And stress (often related to situations with men). But then some of my fastest fusing (over my clitoris) happened while I was celibate for years, but arpound menopause, so it was probably about surges of hormones.

If you vist your ob-gyn every six months you don't have to worry about VIN or cancer. They'll catch the very first inkling of abnormal cells. Dr. Glodstein's record backs up his confidence in this.

Eating a lot of sugar (or even a moderate amount if I'm stressed-out) will cause a yeast infection and a flare-up of LS. They often go hand-in-hand, at least in my case.

10

Jules, I think someone already mentioned, that whilst we can offer some good advice, and valuable experience from people having had this condition for many years, we are all different, and what works for one person may not work for another, which brings me to the fact that the Disprosone does not appear to be doing its job, and so you might want to go back to your doctor and ask for Clobetasol as I think you have given this cream plenty of time to take effect, and possibly now need to try something different.

I had the same issue as yourself, and the Clobetasol cleared it up quite quickly.  These are my initial thoughts, and bearing in mind your obvious distress and discomfort, I think you also need to review your diet immediately.  I would initially cut out all sugar, I cant stress enough how bad that is for you with your flare up, and once you have got things more under control, you can always re-introduce some treats, but for now I would stop taking any sugars. 

If you don't start to see any improvements after changing creams and cutting out sugars, then if I were you, I would then consider going completely Gluten free and Dairy free, and see how you get on.  Sometimes it is necessary for you to try these measures, because I do believe that diet can play a strong role in helping relieve or improve this condition.  These measures may not work or apply to everyone of course, but for some it is crucial to pinpoint anything that is going to trigger flare ups, and take the appropriate restorative action.

For many years I would enjoy bread, except I would always complain to my husband that the problem with bread is that it made my stomach feel very bloated.  It never occurred to me that the problem lay with me, not with the actual bread, and that I could be Gluten intolerant, and so I blindly continued eating bread, pasta etc. Then last year I came down with four auto-immune conditions, one after the other: Ulcerative Colitis,  Lichen Schlerosus, GERD and Celiac Disease (in that order) and in addition to this I also had really chronic Candida, which is very difficult to eradicate. This was extremely devastating for me, and my body was clearly telling me to wake up!! ...and that is why I mention this to you. 

 If you are ingesting food into your body, that your body is allergic to, it is tantamount to slowly poisoning yourself, and therefore if you have LS this is going to  aggravate your condition further, and if you are not suffering currently from this condition, it can even cause LS in some cases...

11

What? You gave advice after saying everyone is different. I do not agree with the diet angle and there is no evidence to support this anyway! There would need to be sufficient studies to determine a relationship with food allergies. I attend a top hospital in Melbourne the Mercy hospital for women at a special clinic manned by various specialists and experts and never never have they mentioned food in relation to LS. Having said this, it is always best to have a good diet of fresh fruit and vegetables and limit the amount of rubbish you eat which is just common sense. But to dictate someone else's diet to them is not appropriate. 

12

Always good sense from you Morrell1951! My story is similar to yours as well  I believe the fusing is the scariest part as the doctors watch for the cancer. I now have quite a lot of fusing and it concerns me the most.

13

Kathleen, I made suggestions, which the person concerned will either decide to follow or not, they are just suggestions, not an order or directive! that is their decision. I must say that I had to smile when I read "Top Hospital in Melbourne for specialists" because the fact that they don't think diet plays any role at all says it all really..still if your happy with them that's all that counts. It is also interesting that you contradict yourself at the end of your post, where you talk about eating fresh fruit and vegetables, and reducing the amount of ''rubbish'' you eat.....which is related to your diet, right? 

Anyway, everyone has their own opinion, ideas, and thoughts, and have a right to share them, especially if they have specifically been asked to do so.

 

14

The healthy eating is wise for everyone. I have never believed in a connection between diet and LS. We have to be careful to emphasise that we are only patients not experts. I have seen this on a shoulder group forum where people are given terrible advice that threatens their repairs. Listen to the specialists and your own body. People on here only have a tiny bit of experience with no qualifications to advise. 

15

Kathleen..I think that a significant amount of  woman that post on this site do so due to the general lack of knowledge, help, and guidance from their own doctors!!   I definitely feel like some doctors could do a lot better..

I am not sure why you think people on this site have a tiny bit of experience, many woman here have had this condition for years, and are therefore in a position to give help and guidance to people newly diagnosed. 

Personally this last year has taught me that doctors don't know everything, in fact some aren't very good at what they do!!! which is why you have to make sure you have a good understanding of this  condition, or any other illness you may have.

16

I fall in the middle of this issue. Sugar is a known exacerbator of inflammation and certainly a candida trigger. Yeast and LS are often inextricably tied. Aside from that, though, I'm afraid that trying to cut out basic foods like whole grains only adds stress, unless you have a diagnosis of celiac disease.

17

Some doctors are forward thinking especially when there has been so little research on this.  I have both Lichen Planus (mouth) and LS.  Both my periodontist and my regular GP doctor encourage me to look at alternative souces as long as they are not dangerous. They both supported me in my recent 5 day fast. No cure with it...but my mouth totally healed and LS cleared up except for on my legs. Now that I'm eating normal I find it creeping back in all areas...so my next step is to try the diet changes...what's the harm?  I'm determined to beat this. I cured myself of fibromyalgia after I suffered with it for 17 years...so I know there are answers...we just have to find them...and if we don't try...we won't ever find them.  So no...don't do dangerous or foolish things...but if it's natural and you have your doctor's blessing...then experiment a little.  We wouldn't have lightbulbs if no one ever experimented and tried to create them...and there were many failures before we had one that worked.  Keep an open mind...but be smart about what you do. Hugs to all...cuz we need those hugs too.

18

Common wheat harvest protocol in the United States is to drench the wheat fields with Roundup (Weed killer)several days before the combine harvesters work through the fields as the practice allows for an earlier, easier and bigger harvest.    

I was totally unaware that farmers are spraying crops with poison, and so here is something you should all take the time to read...

I have not found cutting out Gluten stressfull actually,  its really not such a big deal, but I completely understand why some people are stuck on this, and thats fine, each to their own.

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

19

Morrell, I have tried to post a link to some interesting information, and so I hope the moderator permits that..as I think many will find it interesting.

20

Renee, I too have both oral lichen planus and LS, a double whammy! I have had good results with homeopathy for the oral lichen planus in the past.  What are you planning on doing? have you given it much thought, are you thinking of going  Dairy free or Gluten free? or something else entirely?  I found  going Gluten free tricky at first, and then after I had removed everything in my kitchen that contained Gluten it all went smoothly...The biggest problem for me was going Dairy free, because whilst most people that have problems with Dairy are lactose intolerant, I discovered I am actually  intolerant to Casein the protein in milk, as apparently the protein (Casein) is almost identical to Gluten on a molecular level. This means that I cant have any cheeses or yogurts, its depressing actually, and it makes going Gluten free seem like a walk in the park.

I would imagine you would  only need to try this for a month or so, and if you do not feel any benefits after that than you can always stop and go back to your normal diet of course, no harm done.