Young Lichen Sclerosus Sufferers

Women's health
1

I am a female who is 25 years old and has recently been diagnosed with Lichen Sclerosus. I have taken it upon myself to do a lot of research over the last few days and noticed that there is not a whole lot of information about this disease for younger females. I wanted to start a discussion that aimed to help yonger sufferers of this disease, as we often experience different symptons and deal with different issues than post menopausal women. 

Lichen Sclerosus is a disease that is very uncommonly found in pre menopausal women. I was seen by many doctors who did not even consider this disease because I was too young. However, after my research I believe that the disease may not be as rare as doctors think in younger females. According to my research and doctor, women my age often experience different symptons because we have different hormone levels. Younger females often do not experience any or as much burning, itching, or soarness. For example, I was only diagnosed because I had a re-occuring yeast infection. However, when I went to the doctor he noticed fusing and did a biopsy. I had no complaints of itching or buringing at all. I did have pain during sex, but to be honest I thought that I just had a smaller frame and never thought that it was a health problem. I didn't even tell the doctor about pain during sex because honestly it's embarrasing. Had it not been for the yeast infection I probably would have never gone to the doctor or thought that there was anything wrong. 

I think that it is very important for young females to know that if you suspect that anything is wrong at all or are experiencing pain that you don't think in normal, you should go see a gynocologist (not a regular doctor becuase often they do not know about this disease). Had I not been refered to the gynocologist I could have gone through my whole adult life with this never knowing. And it is very important to catch this disease early so that doctors can monitor for cancer or even other auto immune diseases. My doctor said that because of my age and the fact that this was caught, I am less likely to develop cancer from this diesase. 

Some things I found out at the doctor today:

1. This disease will not effect my fertility. I could not find any information online about this disease and fertility, becasue the majority of women diagnosed are post metapausal, but I asked my doctor and that was his answer.

2. This disease is treatable. My doctor said that because of my age the fusing can be reversed over time with aggressive treatment. He said it will be a long road but I will be able to have a normal sex life.

3. This disease can be managed. I choose to look at this diagnosis positively. Although I will have this forever, as long as I monitor the disease and am careful to take the proper medication I will be ok. This disease is not the end of the world and knowing that I have it will help me to prevent other health problems in the future. 

4. Please ask your doctor to test you for other auto immune disorders. My doctor would not have had I not asked. This disease can be a sign for other auto immune disorders. Knowing if you have this can improve your quality of life dramatically. 

I think that it is important that us young suffers stay positive. I know that I was really freaked out when I first recieved my diagnosis and I was confused reading a lot of the inofrmation out there as a lot of it didn't pretain to me because of my age. 

Let me know what you have learned about this disease and what you find works/ doesn't work for you. 

2

Thank you Jessica for your very thoughtful and informative thread. I have  several young friends- i am post menopausal  - and have tried to tell their mothers to  talk to them about examining themselves and have a good knowledge of their personal anatomy. I would like to copy and paste what you have written into an email for my friends with daughters as it gives a very good  clear and positive  account of life with LS

I believe you are correct in as much as the complaint is far more wide spread than generally thought and we should try and do as much as we can to inform the population at large.  It is my view that nothing relating to the body should be embarrassing - it is a wonderful self healing organism and it so sad we have been made to feel natural habits and activities are un natural or shameful

Without sexual activity  we would not exist

Thank you again

Sue

 

3

Hi Jessica,

Saw your post and wanted to respond.

Firstly sorry that you have been diagnosed with this disease at such a young age but I think there are some positives have come out of it particularly in terms of prompt and early diagnosis which will allow you to treat it quickly so that it goes into remission and stays there.

You'll find many sufferers of LS online world-wide and it is not as rare as the medical world make it out to be.  It is an embarrassing disease and it is not widely understood why people get it.  I encourage you to google 'LICHEN SCLEROSUS YAHOO' which seemingly has the largest database of sufferers you are ever likely to find.  You'll learn many things on that site!

This disease is lifelong and requires immediate and aggressive management treatment plan at the start until it is under control.

This disease affects young children, boys, girls, teenagers, post menopausal, menopausal women and also men can also get it.

There are 2 types of this disease Lichen Sclerosus and Lichen Planus, the latter which is more wide spread (body) and aggressive.

This disease mimics the symptoms of Thrush (yeast infection), other vaginal infections, hormone inbalances and Sexual Transmitted Diseases (STDs) causing burning, itching, soreness and the like, making it extremely difficult for accurate diagnosis.

One thing I will say is that NOT all gynaecologists will pick this up in fact, mine was missed plenty of times (it seems) on examinations.  I really got fed up with going to multiple gynocologists for reoccuring symptoms of what seemed to be Thrush and took my own initiative to research online where I found out that there were actually Vulvar/Vulva Clinics specialising in Vulvadynia, STDs, Sexual Dysfunction and all things not quite right in women's down below areas.  After a 10min visible examination bingo, suspect for LS, followed up with a biopsy which also confirmed.

Doctors and Gynos don't always find this disease even when looking at a women's genatalia.  This disease should be treated by a Skin Specialist, it is a disease of the Skin or Specialists from a Vulva or Vulvadynia Clinic.

Treatment for the first 4-6 weeks is usually aggressive twice a day every day than once the disease is under control, the treatment is than lessened.  At initial commencement of whatever creme you are prescribed you will panic abit but after awhile it just becomes like putting moisturiser on your body or skin, you don't really think much of it after awhile but good management of this disease is the key.

Give intercourse a rest if you can, the disease is 'not' contagious but better to give it a rest until everything gets under control.

LS can affect both the vaginal area and perineum (anal area), you should get checked or biopsied in both areas to know what your dealing with.

I am in Australia and my LS has been controlled very successfully with Diprosone OV Ointment (not creme) now applied twice a week front and rear.  It is a real pain the ass, but you just have to do it.  The most important thing is to have a skin specialist or treating doctor SHOW YOU with a mirror where you need to apply the ointment, you only usually treat the area where the disease is.  Many sufferers on the LS Yahoo group use Clob, you may find many women use an abundance of different cremes.  Its best to also be guided by your treating doctor but you should see only someone who has alot of knowledge of this disease, if your treating doctor does not have alot of knowledge about it, then its time to move on to another specialist who is very familiar with it.

When cleansing/washing areas etc only buy the natural products like Dermaveen wash or Cethaphil Wash or soap etc which are dermatological tested (for the skin) and contain NO perfumes or other irritants.  Don't buy just any soap or body wash because they will irritate it further.

People who have good management and treatment plan go on to live a normal life but you need to keep the treatment going as there are currently NO drugs to send it into remission indefinately and yes it is an autoimmune disease where the body for some reason or another attack healthy tissue.

If you have any painful intercourse, this needs to be addressed to find cause.  Dilators help most sufferers with LS as with all the fusing going on, it also shrinks making it extremely difficult for penetration, but regular dilator exercises help with this.

Great job that you persisted with doctor visits and didn't give up, hope above has been helpful, is important to find someone also that you feel comfortable with.

Best regards

 

4

Thanks sooo much for all you have said... it brings me some hope that I can mange this condition... I will.. I have LS.. But LS WONT HAVE ME!!! I am glad that my gyn caught out my diasese pretty quickly but I will see if I have any special clinic in my area dedicated to LS.. I live in the south of USA... just in case if someone reading this would be able to guide me toward a great clinic...

Thanks again

5

Yes please share! I never even knew that this existed. If there was more awareness about this disease I probably wouldn't have spent years feeling like I was crazy because I had pain during sex. 

Thanks for your comments!

6

Thanks for these great tips! I didn't even think about using different soap. This was very helpful. 

7

Jessica, as I may have said to you elsewhere, I think I started to have LS symptoms when I was 22. After that I used to beg off sex whenever I had 'the crack' – a tear in my perineum. I never mentioned this to my gynaecologists or the dermatologists I went to for psoriasis. I just thought it was yeast and an incidence of psoriasis. But I never used the relatively mild corticosteroid creams I was given for psoriasis, because doctors said it would thin the skin around my eyes and genitalia. Fortunately I seem to have a slow-moving type of LS that didn't really fuse me till after menopause.

I'm happy that you've got an early diagnosis and that you're on top of all the good things we can do for LS. And I hope you're blabbing to other women.

8

Jessica, so good that your LS was diagnosed early.  Thinking back, I think that my LS is 'older' than at first thought.  But in those days there was no internet to search and find out.  So one struggled on.

Only a year ago it was diagnosed officially and then treatment started.  Much too late and fusing had become vicious and fast.  Treatment could not keep up anymore and a surgical procedure had to follow.  

You have the right attitude.  Count your blessings that you can treat this well in time.  Chances are that you will march on symptom free, just making sure all is well maintained.  

What I've learned is exactly that:  Early detection is of the utmost importance to keep it under control.  Check out also other ways to keep auto immune disease at bay.  There is a lot of new knowledge out there that might be beneficial to you. 

9

Looking back I think I have had LS for years, but it was not aggresive, and hardly bothered me at all, I would get odd spots down below, that kind of thing. It switched gears when I was diagnosed with another auto immune disorder Ulcerative Colitis, and then all hell broke loose!! 

 

10

Hi Jessica, I'm Isabel I'm currently 18 years old and I was diagnosed with LC around age 8. It took about a year of hospital visits and a ton of medical opinions before they finally realized I had LC and was not being sexually abused at home. I suffer scarring, burning, and itching. I was told it would go away after I hit puberty but that didn't happen. Now my "flare ups" happen less frequently but are more intense no matter what ointments I use. Your writing caught my eye because I have always been told I probably will not be able to have kids and intercourse was always going to be slightly painful. Having kids was never a huge priority to me but I've been dating someone for awhile now and we've been talking about our future and I'm just worried I won't be able to provide the type of life he wants. Are there any helpful tips you might have on intercouse and making it a bit less painful? Thanks for your time!

11

HI, Im 24 and recently diagnosed with LS. Safe to say I was really angry and sad with the lifelong reality of this disease. It came on suddenly and aggressively, lucky my local gp is a dermatologist and a quick biopsy confirmed it. Ive had a couple topical steroids and while the insane itching has become managable everything else is still bothersome on a daily basis. Im still learning the ins and outs and im looking at borax and bicarb options. I asked my dermo about effects of diet and he shrugged it off. Good luck and just know your not alone in this and that it does get better. 

12

Hi i see that this post is old but i have just been told that i have got LS And to be honest i am really worried about it. what could get worse how to stop it cancer risk im only 27. i also worry about fusing and my sex life mainly for my husband its not fair that he should habe to live with this too. how patient can a man be. if anyone can let me know how they arr doing now id be really greatful!

13

I'm 19 and have LS I had never even heard of it I till my diagnosis and similarly to you it was treated as chronic thrush by several Docters before one picked up it could LS. I would love for there to be more i donation out there for you get women to understand and deal with this condition! If you ever want any help in getting anything like that started message me!

14

im so glad you wrote about this!  i'm also young and think my symptoms are of those for LS and havent seen anything for young women beeing im 19.

15

Hi Isobel,

I've had LS since I was 15, I'm 25 now and I still have flare ups fairly regularly.

However, unless fusing gets to the point that penetration is impossible/constantly too painful, there's no reason you shouldn't be able to have children. It doesn't interfere with your reproductive system itself, just the vulvic area.

So, if you're having sex, you can still get pregnant same as anyone else. The only thing I've been warned about, is that with LS tearing during childbirth is more extensive, and the healing process takes longer.

As far as pain during sex goes, it varies. When I'm all healed up, I have no issues at all. When I'm having a flare up, it's a terrible idea. Even if it's not to painful at the time, sex will make the fissures larger and they take longer to heal.

I also find I can't have sex as frequently as others, as I find if I don't leave at least a few days between - even if I'm healed at the time - the friction itself will cause tearing.

So in short, yes you can have kids, and you can have sex, you just need to keep an eye on your healing and how your body reacts. Plus ointment, ointment is a life saver! If I lose my Dermovate, it's always a panic!

16

I'm glad I found this today! 

I'm 26 and have had almost a year of going back and forth to doctors about the same problem. Always being told it was thrush and having multiple of the same swabs done. I moved house and changed doctors and on my first visit they have said they believe my problem to be LS. I've been given benevate rd cream to use twice a day for two weeks and have been told that should sort it out. I was told to have a look online for more info on LS and so far it's just panicked me. Cancer?! Disease!? Menopause?! I have spent the night worrying whether I can have kids now - I'm probably....hopefully... overreacting but I'm a worrier. 

Something that I have experienced and believe could be related is that last year I spent the whole year being randomly sick. I had massive stomach pains and was really really ill. I was on multiple antibiotics, had ultrasounds, Various blood tests and still to this day have no answers as to what it was. When the stomach problems finished the "thrush" problems started and was put down to the antibiotics. I'm going to ask my doctors to do some tests on my immune system and hopefully find out if I have some sort of underlying condition. 

I also have to add I suffer with depression and anxiety and although I'm not obese I'm not skinny either and I wonder if I had looked after myself mentally and physically more if I would have avoided this condition, defiantly a kick up the butt to look after myself more. 

Not sure if this comment will have helped anyone but thought I'd say thanks for this thread and share my experience so far.

X

17

Hi Sarah, can I just stay, please stop blaming yourself for an auto-immune condition. Your Dr. needs to get on and check you for an under-active thyroid, right away, along with your immune system checks. Are you thinking you may have other auto-immune disorders? .As you may have read, thyroid issues are common in people with LS. If you are hypo-thyroid it is common to feel fed-up; your once healthful body isn't doing what you want and it is concerning. And heck, LS, the weirdest blooming thing I have come across. All of us sufferers know how you are feeling about this condition. You can post on here or healthunlocked anytime and your fellow humans will do what they can to support you.

Thrush can be caused by anti-biotics but I have to say, I thought thrush gave you a discharge and I never had a discharge with my LS, just a terrible itching.

I am newly diagnosed myself and poeple seem to be saying that you need to be referred to a dermatologist or someone who specialises in vulval conditions. Our GP's do not have the specialist knowledge it seems. For instance, if you look online, the standard treatment is for 4 weeks using Clobetasol, a much stronger treatment than betamethasone valerate, followed by weekly treatment, for ever. My GP prescribed betamethasone, for 4 weeks and she advised me to avoid all soaps. I now wash with aqueous cream which i have always found very gentle when i used it for my excema. 

Seems our pee can irritate the skin too and there is some advice on the British Association of Dermatologists site to use a cream that acts as a barrier/moisturiser to help protect the skin from the pee. I think that washing with aqueous cream leaves a bit of a barrier behind on the skin.

I wasn't told I should go back to see how things are going but knowing what I now know, I want to be inspected to see if it has gone away. The itching has stopped but does that mean that the underlying structural changes that LS cause have stopped progressing? Who knows? 

When you get your thyroid tested, make sure you get the results from your Dr including the ranges, even if you are told the results are normal. Then post the results on healthunlocked, thyroid uk forum, the folk on there are very helpful. 

Chin up <3

18

Thanks for your reply :-)

I'll try but it's very hard not to try and find a reason why.

I will certainly request further tests, I have already had blood tests when I had my stomach problem, where they told me all was normal. 

Majority of the time there was no discharge for me either. 

At the moment my condition seems to be mild so maybe the treatment I've been given won't be as aggressive at this stage. I've been told if it doesn't get better then I will be referred to a dermatologist. So far the cream seems to be working well and it's only been a few days now. 

I have been using a shower gel called oilatum, which tbh is greasy, expensive, doesn't last long and doesn't exactly give the nice relaxing feel shower gels usually do!  I've also had to use natural tampons etc as the ones I have always use now irritate me. It's very frustrating and I miss using products I used to be able to!

I will definitely look into the forum and hopefully get some useful results from the tests. 

Thankyou :-)

<3 

19

Hi all, 

Thank you for sharing so much information, it is helpful to take it all in. I am 27 and was diagnosed with LS last year- I am sure I have had it for many years but had no idea what I had was abnormal. Last year at visit to a new GYN the Dr. recognized it quickly and after a biopsy she diagnosed me. However, when she diagnosed me it was over the phone and confusing. She gave me the steroid cream to us when I was irritated, but I did not have a good understanding of the disease or my options so for the past year I have not done any treatments.

The past few months I have had extreme discomfort with itching and pain. I was worried it was a yeast infection and went to the doctor because of the pain. I saw a different dr at my office this time and she talked with me about my LS. Now I fully understand what is going on but have so many more questions.

I currently have a crack that is very painful when I pee and I am trying to figure out what I can do to help with the affects. Any insight you all have or good questions I should talk to my doctor about would be helpful. I have read a lot about natural remedies like coconut oil, turmeric, and vitamin D and I am willing to try anything!

I am just starting this journey and feel foolish that I did not pay attention when I was diagnosed and am now dealing with more issues because of it and hope to get it under control.

20

Hi Marg, I know its hard to think straight when you are in pain but you could try peeing in water to dilute it, perhaps in a shower or sitz bath ( sits on top of toilet) or bidet. You could hold something over the sore area so the pee doesn't get on it, wear a plastic glove if you feel the need.  For moisturising, try coconut oil or olive oil and as a barrier, if you can get it, aqeous cream is very gentle but make sure you don't use so much stuff that your prescribed medication can't be absorbed. Best wishes.