In total, 202 posts spanning a six-year period were analysed. This included 9 pages of text with over 9500 words. Five key themes emerged, exploring problems with obtaining a diagnosis, rationalisation and validation of women’s experience, self-management of the condition, seeking advice and guidance, and the social repercussions of the disease.
Theme 1: Problems obtaining a diagnosis
Many women experienced a delay in diagnosis. Often this was a consequence of misdiagnosis with women repeatedly being given treatment for vaginal thrush.
It took about 3 years of going back and forth to GP who at the time said it was thrush and I was wasting her time, it got quite heated at times because I knew it wasn't thrush so took myself off to hospital who took biopsy and came back as LS.
I was diagnosed about 2 years ago, but like most had been suffering way before then and being told I had thrush numerous times.
I have continued to have a healthy sexual life with my husband of 15 years, but in recent years sex was painful often and this was why I aggressively pursued a diagnosis beyond thrush.
Women attributed delays in diagnosis and misdiagnosis to primary care professionals’ lack of knowledge and experience.
I am happy to have a diagnosis at last but to be honest I left the surgery feeling really p***ed off! For some reason it really annoyed me that the Dr diagnosed me and developed a medical management plan so god damn easily!! I must have seen some shockingly c*** Dr's before as this one has seen and treated LS & HS before, seems to know what to do about it - why oh why couldn’t I have met this Dr all those years ago?????
In addition to a lack of knowledge and experience, women also felt that health professionals were dismissive of their symptoms, did not listen to their concerns and had labelled them as “time-wasters”. This can result in reluctance to present to Health Professionals.
I was diagnosed in Sept 2010 after months and months of doctors not knowing what the problem was, mistreating it or just dismissing it
I remember when I first got an itchy patch, about 4 years ago, and the female doctor I saw at the time was really brusque and put it down to the "itch-scratch cycle"!! She said that if I didn't scratch it then it wouldn't be itchy...but of course there was an itch there in the first place that I had to scratch That really knocked my confidence and I guess that's why I've not sought another opinion since.
Other women found it difficult to communicate their symptoms and experienced anxiety and embarrassment related to seeking healthcare advice. This resulted in a reluctance to seek a medical opinion and contributed to a delay in diagnosis.
I really, really need to make a doc appointment...but my doc is lovely and normal and it's almost like we chat like old friends whenever I see her for me or my children....cannot bear the thought of her having to examine me. Crazy, I know.
I cannot believe I have stumbled upon this thread...I have been suffering silently from all of the symptoms mentioned for years, and have been too embarrassed to see my GP.
Women expressed a mixture of emotions upon receiving a diagnosis. While some expressed relief at being given an explanation for their symptoms, others expressed frustration over the time they had spent suffering without explanation.
I cried when she made the diagnosis, sheer relief to be honest. All that time I felt like I was over-reacting. I have steroid cream but need to use it rarely now. That gynaecologist changed my life, I will always be thankful, and I recommend seeing one if a doctor isn't any help.
As a teenager, I went to my GP for an annual exam and I had a biopsy. Once it was confirmed it wasn’t cancer, she referred me to a Gynaecologist and he was the first to diagnose it and even showed me a description in his medical book. I was so relieved!
Theme 2: Rationalisation and validation of their experience
Women sought to understand why they had developed the disease. Having an understanding of what causes LS allowed these women to align this with their health beliefs, to make sense of their experiences, and sometimes to receive vindication from a sense of blame for their symptoms.
I am really into looking at the cause for it, although I know that they cannot be really specific of the cause. Some say its linked with an autoimmune disorder, hormonal, etc. etc., I do know that for many months I have been feeling so exhausted??
I was diagnosed with LS a few months ago and I have to admit I felt dirty at first. I don't sleep around and had only about five sexual partners so it came as a bit of a shock. Reading more about it it doesn't seem to be anything to do with my lifestyle but just one of those things.
Some women expressed reassurance in knowing why they had been getting symptoms. They now had an explanation to validate and explain their experiences.
I know this is a slight resurrection of a thread but I'm recently diagnosed too. I've avoided sex for years as it was uncomfortable, now I know why!!!
I am 38 (to the person who asked) and I remember itching myself until I bled when I was in the pubertal stages. It all makes sense now.
Other women shared their symptoms with other forums members in an attempt to corroborate their experience. It seems that through commonality with other women they are able to check that their own experience aligns with that of fellow sufferers.
I have got a couple of sores that are really, really itchy, especially at night, and I scratch so much they bleed Although at first the scratching is kind of nice as it's such a relief, if that makes sense?!?
How does all your LS manifest? Mine was an itchy, hot sore fanny with lots of little white pimples (which I thought were milia) and thickened areas, this is the first symptomatic flare and I do appear to have lost some of my labia minora
Theme 3: Seeking control over their condition
One of the most common threads of discussion focused on attempts to identify triggers for an episode of LS. This awareness allows women to avoid suspected causes. This may reduce their flares and allow them to gain control over their condition.
How does this condition really make you feel? Have you found any triggers?
Some things that set off my LS off are lots of sex, heavy periods and hot when I'm not wearing cotton knickers. Also I was advised to stop shaving for a while when the LS was really bad. I find the method of hair removal difficult, as shaving really irritates the area but leaving it hairy is irritating too!! Waxing,,,NO! Luckily its the weather for going commando with a skirt on at home, so having a bit of air circulating is rather pleasant and very refreshing.
I put on Replens three times weekly using an applicator and if I have sex I use 'Yes' lubrication. This holiday I've purchased shorts a size bigger to be more comfortable and give me more freedom and the thong underpants were thrown out months ago. Big Pants! Don't despair and make little changes. I've transitioned from being devastated to accepting that, as awful and life changing as Lichen Sclerosis is, it doesn't define me.
Knowledge is a key asset that allows women to understand their condition and gain some control. Women used various tools to research their condition, including using the forums.
I repeatedly went to the GP and was treated for thrush over and over even though I said I didn't think I had thrush. I did an Internet search of my symptoms and found lichen sclerosus. I told my GP, he laughed and said it wouldn't be LS. I asked for a referral to a specialist. As soon as I was examined by the specialist they asked me how long I had had lichen sclerosus! I had suffered for 18 months!
After years of problems due to Lichen Sclerosus, i.e. itching, splitting skin, adhesions and fusing, I had had enough. So, just over a year ago after doing some research on the internet, I found an article on www.lichensclerosus.net I went to my GP with the article and asked her to prescribe Estradiol cream, I got Estriol cream which isn't as effective but after only a couple of applications I could feel the difference.
Over half the discussions on the forum related to self-management of LS. There was evidence of women self-managing their condition through discussions with their medical team, such as requests for medication, seeking referral and planning follow-up schedules. This entailed taking an active and assertive patient role in their relationship with General Practitioners.
I have in last 2 weeks noticed another lump and considering this thread I will go to GP to have a chat. I really don’t think they would refer me to [named hospital] if I have no symptoms, sadly I think they have never heard nor seen this before so prefer to just fob me off. Think if I collect some info together and take that with me it might help as to be fair to GP's if they not trained in this area or have any experience with these symptoms then they not going to know much about it.
The link I popped on higher up, suggests a hormone cream, this is supposed to heal damaged tissue. So I might nip to my GP and discuss with her about it.
I am going to ask my GP about regular reviews though as I am concerned that was never offered to me.
I am waiting to speak to GP so I can be referred to a vulval clinic, as I don't want my GP to manage it - as they have no idea really.
Theme 4: Sharing and seeking advice and guidance
Forum members valued each other’s opinion and knowledge. Women utilised the lived experience of fellow contributors to answer the questions healthcare professionals did not have the answers to. Some women expressed a lack of confidence in their healthcare professionals and sought advice from the fellow sufferers.
Please tell me what you mean by "clear up"? Does it go away or is the skin ruined never to recover? Doctors say "maybe" and "don't know".
Was prescribed the Dermovate ointment but I struggle to find out about the quantity to apply and best time in the day to apply?
I have an appointment to have a biopsy in May, we are meant to be going on holiday with friends a week later, has any one had this biopsy done? Is it painful, would I be in pain after the biopsy, I am so worried, my husband said I should cancel the holiday straight away, get this sorted first, I would really like to hear from anyone who can advise me
Once it's under control, do we see our own GPs for regular check ups? I have not much confidence in my GPs as they are not too familiar with LS, can I insist on regular check ups with the dermatologist?
A large proportion of forum members sought advice on possible therapies and women were keen to share the results of different regimes they had tried. This was related to both alternative therapies and prescription medications. Many women had tried multiple different therapies.
I try allsorts, aqueous cream can keep area soothed when not a big flare up.
Sanitary products make it worse, but are necessary. Sex can be painful, but lube is helpful. I reckon it has a link with gluten, sugar etc for me. I cannot eat a lot of bread products and when I went on a low gluten diet my symptoms were better.
Am going to try Evening Primrose Oil supplements and Omega 3 (cannot remember site I saw this advice) and to cut down on sugar and gluten in my diet.
Essentially, I have been seeing a homeopathic practitioner, and so far I feel 98% improved! Also, I find applying Emu oil is a complete life saver. I rarely itch, I don’t have any sores or pale bits. I keep it handy all the time and put some on if I feel the LS is causing irritation. I must say I am so thrilled. I will make an appointment with my GP and let her know. I have not needed to apply Steroid creams for about 2 months.
I was given steroid cream which I didn't find too bad... The best treatment I have is an over the counter cream call Eurax. It's for skin itching really helped me. You can buy in any pharmacy or supermarket.
There was evidence that women utilised the advice given by others.
Your remedies are amazing! Could teach my doc a thing or two! I just tried whatever random thing the GP prescribed, only the steroid cream has helped.
Theme 5: Social repercussions
Lichen Sclerosus predominantly affects women’s vulva. Discussing issues related to genitalia with family or friends is difficult for some women due to socio-cultural barriers. Women reported having nobody to turn to for advice or support and find it hard to raise the subject. The forum was valued as a place to express their concerns.
My mother has it. She's nearly 70 years old. She's not the sort to talk about her lady bits even with her daughter. It took ages to get her local doctors to take her seriously.
Any advice about approaching this sensitive subject with doc greatly appreciated please. This is really getting me down and can't talk about it with anyone
It's nice to have others to chat to about it, it's hardly a subject to bring up at the school gates or among friends, and I don't have any close female relatives I could talk to about it.
A predominant symptom of LS is severe pruritis. Women on the forums frequently experience a desire to itch. Women report that this can be embarrassing and socially inconvenient.
I stand tall in my battle for a pleasant looking lady garden, and one that I don’t feel like I need to scratch discretely whilst out and about. Therefore friends when you see someone walking like she is a bit cool, but without the Ipod, it just might be that she is having issues with her nether regions.
It's been so uncomfortable and hopefully after reading this post I can try other remedies too - I suffer with constant itching, it's awful.. and at times embarrassing!
Another consequence of LS is that it can lead to painful sexual intercourse. Women reported that this impacts upon their sexual interactions and subsequently can lead to relationship breakdown.
It has been difficult trying to explain to my husband "it’s not that I don't fancy you or I have gone off sex, its just that it hurts too much" I have since got him to read loads of LS forums and now he understands! Basically, get your hubby to read other peoples comments about LS, it might just help.
When I was diagnosed I felt very alone and upset.( I do not now have a partner as one reason he left was due, he said, to us having ceased to have sex as the tearing etc was painful)
Once women are diagnosed with LS, some will wish to discuss their experiences with other people. LS is relatively unheard of and most people will not know someone with the same diagnosis. Additionally, the intimate nature of the disease may prevent women from discussing their experiences. Online forums may the only place for women to discuss their concerns with other women with LS.
I know my reply to you is a little late, but I have only just come across this site and find it very helpful and reassuring I'm not the only one suffering from LS.
I am so relieved to find this site and read all your posts to realise I am not alone in this, I have suffered with LS for 3 years now and it is really affecting me emotionally.
Language used to reference genitalia
Although not a theme in itself, it is worth noting the colloquial language used by the women to reference the female genitalia. Few forum members use the term vagina, vulva, labia or genitalia despite the anonymity conveyed by the forum.
I still love you, even though you've got leprosy of the tuppence.
I stand tall in my fight for a pleasant looking lady garden
I've just read through the thread and no one else has mentioned this, but (TMI) some of my lady bits have almost disappeared
Well, I had blood tests last Thur and went to the docs today to drop my pants and flash my bits!
Did anyone see Embarrasing Bodies last night? They were discussing Foof problems & mentioned LS.
It's definitely LS, my fanny looks like it's seen a ghost