How do you describe LS to others?

Women's health
1

I think one of the challenges when LS shows up in the genitals is how we decide whether we are going to talk about this with others and if we are what do we say and to whom? I am someone who has always been quite open about her sexuality and many aspects of my life and so those close to me know about this in some capacity however I don't talk to everyone about it. 

I have told people in my life about this diagnosis for a number of reasons. One, initially I was very upset and needed to talk to someone because talking is how I process. Two, I wanted the women in my family to know about it as I think my mother had it and  if there is a genetic connection, I don't want them to go through the misdiagnoses that I went through. Had I know this thing existed when I was in my twenties and my skin was splitting, well things would probably be very different now. 

Thirdly, on a broader level, I believe that LS isn't well known not only because it is isn't common, but because of the discomfort we have regarding talking about our genitals. We do ourselves no service in grinning and bearing it silently as women are wont to do on so many fronts in their lives. While it's not common place I suspect it is less rare than we think as there are many doctors who don't recognize it. Without raising awareness of it, it will not become a priority for funding or be on more doctor's radar.

My question to you, especially those of you who have have lived with your diagnosis for quite some time and who are open about it, how do you describe it to others? Do you have a favourite website that you use for those who want more information? 

2

The only person I talk to about this is my husband. I feel ok talking about it on the forum as it helps to  know others understand. It's not something I feel I need to share with others. If it was contagious of course I would but this is not so reading and posting on here and other forums has helped me to understand it and find a way to control mine.

3

I have told my mother and sister about it and a few girlfriends (one also had it!) and my best friend (a gay man). And my two sons in case they meet women who have it. I describe it quite graphically and especially explain that it makes me sort of allergic to sex, at least when I'm flared up.

The majority of us are past menopause, although I was one of the relatively rare ones who had it young and wasn't diagnosed till well past menopause. I experimented with full disclosure to a man I was connecting with online. The ratio of men to women over sixty makes it very competitive. It's pretty clear my fragility took me out of the running. We're a bit like a man who has to decide whether to lead with the fact that he's impotent. I would not do this again. I'd wait till I knew the guy well enought to figure out whether he'd be up to the challenge of very gentle infrequent lovemaking, then tell him. Guys who are in a rush to bed will find that 'coy' or 'playing hard to get'. Tough beans.

4

Hi ElleF   I think your post was very brave.  It is a big issue for people who suffer with LS.  That's why this forum is an immense outlet - particularly for people like me who do not discuss it openly with family or friends.  I Have a husband who while he is good, patient and understanding has absolutely no desire to know a single detail about LS. I feel it would act as a total dampener to our sex life. So I have to maintain the conspiracy of silence even with my nearest and dearest.  I also have two teenage daughters and have not discussed it with them either - not until it is conclusive that it is an inherited disorder.   I have to admit that one of the main reasons I don't want to talk about it is that if people are curious as to what it is I think they will go to Google images and see some truly horrific photos and then relate that to me. I think this is an interesting thread and would love to know what others think/feel on this very personal issue.

5

Just so you know men can get this as well... it is awful and can be disfiguring for both.

6

Hi ElleF, This is a difficult one, l have found even my best friends dont want me to talk to them about LS one friend listens but l dont think she grasps LS at all, but she does listen to me which is something even my daughter although caring does not understand. My best supporter has been my husband , he deseves a medal ! He has to sacrifice a lot for me . Nobody wants to talk about this l think its ranked with STD,s ...

therefore a taboo subject , sad but true.

7

I too have discussed this with friends and sometimes with some of my clients (I am self-employed).  The subject usually comes up because they notice my fingernails which have been destroyed by Lichen Planus.  The subject leads on to how I got LP - crossover from LS - and then, the big one,"what's LS?".  Once I have told them what LS is, the subject is really raised again!  I think most people find it embarrassing (I certainly do) but I do believe that the subject should be covered in women's magazines to make everyone more aware.  So many people think they have, and are treated for, thrush.

8

Sorry, that should have been "rarely" and not "really"!

9

Hi, I'm newly diagnosed but have been suffering for years, but after a bungled set of biopsies ending with me having to have two weeks off work instead of the one day as planned, everyone wanted to know what was wrong I said LS an auto immune disease as an answer and more details to some ladies but I did find it difficult to talk about as I feel it removed my femininity, I can't explain it well but admitting that sexualy your not right/broken/out of order is very hard, I'm 50 quite a loud outgoing person and I felt I would be judged in some odd way. I think it should be published much more as I've seen specialists for over 2 years purely trying to sort the pain during sex issue and every time got a pat on the head and told it was the beginning of the menopause it was a junior who found it in the end. Even the Gynecologist don't seam to know what they are looking for.

10

Hi Elle

Good topic, very important. I've told 2 friends who I trust, also because they've got their own circles of friends who don't know me - I've told them to tell every woman they know what sypmtoms to look out for, and that it's very important to get it diagnosed early. It won't be linked back to me as their friends don't know me, but hopefully a few more women will be aware.

I also spent an angry period marching into every pharmacy I passed with a female pharmacist and told them about it. Some (mostly the older ones) were all defensive and said they knew all about it (clearly didn't), and some of the younger ones were really receptive and quite shocked. Several said they'd go and look it up straight away. Given that most women will be buying thrush treatment several times for the itch, or lubrication for painful sex, I thought that would be a good starting point. I've stopped doing that now. In the end the negative response outweighed the positive and I got disheartened.

I contacted the Royal College of Pharmacists, found my local network and offered to do a CPD talk at a meeting - no response.

I contacted Woman's hour on Radio 4 and suggested they do a programme on it. Polite 'thank you,' nothing further.

I think LS is in the place where Breast Cancer, Cervical Cancer and Testicular Cancer were not so long ago, and now everyone talks about it with no embarrasasement at all. Look at the current campaign for prostate screening.

I said to those friends that I have an auto-immune condition, and that I'm in a pre-cancerous state. I know it's a bit of an exaggeration, but it allows them to link it with the above conditions which aren't embarrassing any more, rather than a new 'down there yucky akward type of thing.' I know it's not but It could stop a conversation dead couldn't it!

I have a daughter, I haven't said anything to her yet but will in a very general sort of way, along the lines of 'if you experience anything like... please do tell me because we have a condition in the family that very rarely can be passed down and is often misdiagnosed. It's really important to catch it early so I can tell you how to make sure it's recognised or ruled out.'

Hope that's helpful

Bridge

11

I meant that the various cancers aren't embarrasing any more, not LS - but it will get there I hope, given how many of us have it...

Morrell good idea to tell sons, many more understanding men are needed in the world! for all sorts of things. I'm sure yours are lovely.

Bridge

12

Thank you for posting this topic. It is so difficult. I have sometimes mentioned very briefly to friends and colleagues that I suffer from a disease affecting mucous membranes, which makes me extra sensitive down there. Since I occasionally have flares affecting my urethra with severe pain, this way of describing things has worked quite alright. But I have never mentioned the name LS, to anyone except to my mother who also has the disease but developed her symptoms after menopause. My LS started already in my early teens. I feel exactly as annabel01635 and I don´t want my friends to google and find these horror pictures. By the way, all skin diseases look terrible on photos. At the moment, I am not sexually active but if I find a new partner, I think I would stick to the explanation "sensitive mucosa which needs extra gentleness". At the same time, I am a bit ashamed not being honest to my environment. It is like carrying around a horrible secret and it is quite heavy. Another problem, is that I should probably talk to my 19- and 16-year old daughters. Since both my mother and I have it, my daughters might be at risk as well. But it is so difficult. I don´t want to scare them in such a senstive part of their lives. My oldest one, I think has had some sexual relationships and she seems fine. My youngest is struggling a bit with her sexual identity. In case she would get LS, it might actually be easier to only have relationships with women. But, she is a very sensitive girl that have suffer from depressive symptoms at the moment and I feel that it is not right to bring this topic up right now. I appreciate all advice and I am really glad that I have found this forum.

13

I haven't told anyone yet. It's part of what makes it so stressful for me. It's an isolating condition for me.

14

Hello ElleF,

This is such a good subject to broach on here.  Only recently when I visited my GP and I told him that I had joined this group and he seemed genuinely surprised to hear how prevalent it is. Which says it all I think, don't you? He is very kind and understanding but sometimes I feel he's at a loss as to how to help.

  I've suffered from LS I think, from a trauma accident that occurred when I was seven, but was only diagnosed 17 years ago, by a very clued-up gynaecologist, who recommended me to a dermatologist who specialised in vulva problems.  I thank goodness every day for that encounter.

 As to who, and how we should tell... I've now got to a point, after all those years and reaching the age of 65, where I think, 'You know what,as many people who know about this thing the better. There's far too much ignorance about these things and folk out there are suffering terribly and feeling desperate, and alone.  So I'm of the opinion that the more people know about it, they will be 'armed', so to speak should they unfortunately find themselves suffering symptoms.  So now even my 28 year old son and his new wife know what it is, also my 2 daughters, and even my friend who is an osteopath who treats me.  He actually treats me for M.E. which is another illness, that also suffered from not being spoken of for years because it carried a stigma of being called 'Yuppie flu', and other degrading names, and I did feel it was difficult to tell people that I had M.E. as well.

I think that the programme, 'Embarressing Bodies' which is shown on British TV. has helped tremendously with folk being not so embarressed to speak of these nasty illnesses as well.  I now tell folk who ask that I have M.E. and also  autoimmune skin conditions called Lichen sclerosus and Lichen planus. In fact when I was recently prescibed the Dermavate cream instead of ointment and had  occasion to visit the local pharmacist to get it changed, I even managed to tell him what it was and where. Yes, it was a male pharmacist! By the look on his face, he was well aware of what LS is!

Of course my husband has known all along and he is my rock, as is my older sister so I'm fortunate in having loving support around me.  However...the only one of those people who might have an idea of how it actually feels is my son who has developed Lichen planus in his mouth recently. So my favourite web-site is this forum, which is blinking brilliant!! 

Once again thankyou everyone for making me feel I can share my experiences with others who REALLY know what this illness is like.

15

ElleF - you have raised the ultimate conundrum. Damned if you do and damed if you don't.  Only my daughter knows of the diagnosis I had years ago but never talks about it and  so I don't either.  I did broach the subject about a month ago to a close  neighbour and friend who was a nurse for 40 years and she said she never heard of it.  She also did not ask any questions abou  it. I said I used a spray of water and baking soda after bathroom use and she immediately jumped in that that was not good because in the hospital they always used some other form of  (I will call it a chemical formation even though I know that is not right) for douches. I just said it is not a douche and dropped the subject. 

However I did mention it to my GP and she said good - it neutralizes. I am so not comfortable telling other people, and may not do so again. I did have a 15 year relationship with a man and had the ultimate sex and he never knew.  I do think that a healthy and continuous sex life keeps things in good working order.  I currently have no sex and 

16

let me finish....and probably won't again.  Woe is me! Yes I am glad we have each other but that is still not the answer.

17

x

18

Maybe you are right about the healthy sex life being good for us as my husband and I had a really great sex life for several years.  Looking back I know I had this condition at the time but found that it was worse during times when my husband was working away from home.  Good point...

I have had conversations about my condition with 5 friends, my daughter as I think my paternal Grandmother had this.  Two of my friends had the condition, one knew and one did not. I also spoke to about 20 women in a class I was attending about the condition.  No one had heard of it and most were shocked but were pleased I had found the courage to tell them about the condition. I know at lease one of them thought that it might be the answer to a condition she had suffered for a while and was going to investigate.  I was able to talk to her privately and offer advice.  

I have written to Women's hour, Loose women and another well known woman and have not received a reply from any of them apart from a generic reply.  Women's hour on the radio I later discovered did a programme on it some years ago.  I found that out by searching on the internet. 

Some men can be cured by having a circumcision.  Not all as it depends where they have it.  I do wonder if this condition spreads, and if so how?  It is only thought to be auto-immune there needs to be much more investigation on this subject.  If only to help those that follow us.  It would be lovely to find a cure or at least a treatment that prevents worsening of the condition.

Children can have it and if treated can be cured,  I wonder if the condition returns when they are older.  I don't think this point has ever been mentioned on here before and if anyone who had it as a child has been cured!! only to have it return later in life.  I definately had times in my life when it was in remission.  I think looking back I had it quite young and then it calmed down for most of my 30's and 40's,

I am at present worrying about my urethra closing as it is taking longer to empty my bladder.  I will be visiting the doctor again soon to investigate this.  Such a terrible condition we have to tolerate. 

19

Thank-you!  When I think about the things that I brought up over the past 25ish years with different doctors and heard "don't have so much sex", "I don't know why that's splitting, I'll do a swab for herpes even though it doesn't look like it", and "that discolouration is normal" and then factor in the pap smears I've had in the past few years where things were visually markedly not normal and the two different doctors were down there who said nothing, I feel that education needs to happen with women as well as doctors. I have moments where I want to start an awareness program of some sort and then other times when I don't want this condition to take over my life. It's already there every day, do I want to make it my entire life? 

20

Like Morell I'm rather graphic about my description. I don't go on at length but get right to the point - it's not life threatening but it's serious If I don't take care of myself. This is what could happen if I don't stay on top of it. Stress makes it worse and it will never be cured but can come and go in flare ups. I assume people don't really want to know much so I give them the go ahead to ask me more if they want to but I expect to never talk about it again. I usually don't give them the name so they can't look it up on the internet, but if they do press and learn the name I tell them not to look it up because the internet is full of worst case scenarios and I didn't sleep for a month after obsessively googling it.