How do you describe LS to others?
Posted , 14 users are following.
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?
0 likes, 20 replies
auburn2000 ElleF
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Morrell1951 ElleF
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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.
auburn2000 Morrell1951
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Chrisy auburn2000
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annabel01635 ElleF
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winifred02134 ElleF
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therefore a taboo subject , sad but true.
kathryn07219 ElleF
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kathryn07219
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debbiesettle ElleF
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Bridge_of_Sighs ElleF
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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
ElleF Bridge_of_Sighs
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Bridge_of_Sighs ElleF
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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
UlliS ElleF
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sparker1 ElleF
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Yvonne72736 ElleF
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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.