Hi everyone Im having a flare up and getting really paranoid that i have herpes rather than LS. I have been diagnosed with LS but had no biopsy. Ive also had STD tests before with results coming back normal. Triggered by my partner saying he had a small cut on penis. Weve been together three years so this could be sheer coincidence. I think those suffering with LS know how challenging it can be mentally. Ive been awake since 4am cant sleep just feeling dreadful. FYI booked myself in at the STD clinic for peace of mind. Attatached photos does it look like LS? Is it worth me getting a biopsy? Hate how my vulva has changed over time feel like a freak :( :(
Wont let me upload pics from my phone but have small tears on vulva :(
Pic1
Sorry to about your flare up , I have extensive Ls all over my body and anus . I have been had biopsy which confirmed but to be fair the dermatologist new right away what it was . I didn't find that the steroids that i was prescribed (every one available ) Helped me much . I have been put on HRT to combat the sweats which has definitely helped with the itching at night. I have also been experimenting with diet Changes, sugar and alcohol , wheat . I have now been on Acitretin a Retinoid drug which is normally used to treat psoriasis and occasionally LS . I have been on it for 3 wks so fingers crossed as this drug has nasty side effect ,but so far are bearable ..... This is a very little understood condition my Dermatologist words . which is very distressing to us sufferers . Keep strong honey and explore all the alternatives .
Thankyou im glad youre getting some relief!
I don't think anyone knows the causes of autoimmune diseases. Diet may help, but in order to confirm it you would have to change your diet independent of using drugs and most people who are suffering are not going to do that. The medical field will not study diet as there are no drugs involved. A conundrum. How long have you had LS? Where on your body did you first experience it? Not many people who have been posting here have it all over their bodies. It seems those that do are younger and most of us older women have it genitally after menopause. Hope the new med gives you relief.
car, I don't think there would be any connection between a small cut on your partner's penis and his having herpes. That would be sore bumps, not cuts. Although women with LS also report getting bumps, but LS, as you know, is not contagious. Why not just let his cut heal and have a little sex break till it does? Have read it's possible to have herpes without any breakouts, but in your case there are no symptoms from the sound of it. Good luck.
Hi car, if you have been diagnosed with LS it is highly probable that you have LS.
The symptoms to look for are:-
tiny 'paper' like cuts on and around the vagina blisters sores red rashes bruised areas white plaques of skin itching
I had a visual diagnosis and have never felt the need to put myself through a biopsy which often upsets an area that is already sensitive. However, some women prefer to have a biopsy done for a firm diagnosis which might be what you need for peace of mind. Your photo didn't show up.
Hi My LS first appeared under my breast ,which was treated as a fungal infection . I also thought that i had Piles which i now know was LS. It then appeared all over my back and between my legs and small patches on my stomach . Yes i agree regarding the Diet . I spoke to my Dermatologist who dismissed any relation to Dietary triggers ... I am hopeful that the Retenoid will work but reading others experiences are no always helpful . Dispite the dreadful side effects i am willing to stick with it for the up to six months recommended.. Yes my symptoms only appeared at peri menopause .Thanks for your advise
All the symptoms you mention are what i have. I think i just struggle dealing with it even after all this time. It has been the holidays so i wonder if thats played a part. Would it be worth getting intolerance test maybe to see if it could link triggers?
hi really sorry you are having a flare up. whilst your symptoms are bad i think you need to get to your StD clinic and tell them your concerns. they can swab the cuts to test for herpes. small cuts are a symptom of both herpes and LS so you really need a biospy to be sure. personally i think you are feeling anxiety about your diagnosis which is why i recommend getting a biopsy/swabbed for herpes, i had exactly the same anxiety before i had my bioppsy to confirm what i had. i used to spend every night googling std symptoms or vulval cancer, neither of which is a pleasant search! because not knowing exactly what you have is stressful, especially during a flare up you think what the hell is wrong with me, and we all know stress and anxiety is a trigger for LS. when your lady bits hurt its literally all you can think about! since i had a biopsy to confirm a lot of that anxiety has lifted and i can concentrate on managing the condition. i went to a private dermatologist soecialising in vulval health and auto immune disorders as i couldnt wait for the nhs to work out what was wrong with me! your std clinic should easily be able to swab the cuts whilst they are active and this will at least give you peace of mind in terms of the herpes. what is your current treatment for the LS? xxxx
Thankyou for your reply. Im booked in but couldnt get an appointment as soon as id hope. I have also been through the vulval cancer paranoia i think this condition is as much mental as it is physical. I turned my back on steroids some time ago i have gone from coconut oil and dealing with it to finding emuaid on here. Using max and normal. Also seeing a chinese doctor who believes the condition is weak immune system. I was also considering going private. But then i wondered if they'd just prescribe steroids again. :
did the steroids not work for you? they have helped me loads but i go back for my 3 month review this month with the consultant. was there something in particular you didnt like about the steroids? because i believe there are a few options to try. going private was the best thing i ever did.
i do 100% agree that it has a massive affect mentally. i think having a final diagnosis helped me with that. is there a reason you havnt had a biopsy? the biopsy also checked for abnormal cells cus there was some concern over VIN for me initially but luckily that came back normal.
when you have a flare up i would try and get into your GP (i have a female health GP who can do swabs) or a walk in GuM clinic cus they really need to see it when its active. i hope you get some answers but in the mean time try and relax and dont keep googling lol xxx
I just dont feel the steroids ever worked for me. But i saw so many different dermatologists by the time i got to one at a hospital he had said some of the creams id had werent suitable at all. Id tried to reuse one of the creams during a past breakout but just felt uncomfortable. The last dermatologist reccomended i didnt get a biopsy as it may cause uncomfort. However i did find him very blase about the whole thing. J think i am going to ring my gp and ask to be referred to another hospital!
do you know any of the names of the steroids?
i would ask to be seen by someone else, go in armed with all the steroids you have tried and your ongoing issues and ask for a biopsy. that way you gain some clarity that you are treating the right issue. failing that i would go to a private dermatologist specialising in vulval skin. i went to one in london and it was a clinic in harley street so probably the most expensive consultation of my life but the best thing i ever did!
I dont know off the top of my head but i suspect its info the gp could get up ive had that many! Im thinking of keeping a diary to note if theres any patterns in break outs and food etc I was looking at specialists i think im going to ask for another referral and in the mean time keep seeing my Chinese doctor. Wish me luck!
Absolutely keep a diary. It's impossible to remember the specifics without one. And keep seeing your Chinese doctor. They have a view of the body as a whole that is thousands of years old. Not like western medicine that is hundreds and treats only parts. I've been cured by acupuncture of things western medicine could do nothing for after many years of treatment.
Hi car, I have been an LS sufferer for almost 8 years, I followed the forum here as best I can for almost a year. Just to briefly say, the only way to confirm the presence of LS is to have the Biopsy otherwise the people treating you are merely dealing with suspected LS, there is a huge difference - particularly if it is actually something else you have. I do really sympathise with what you are going through - so get the peace of mind of knowing what it is you are dealing with. Some other brief tips: when you shower make sure your thoroughly rinse all cleansers such as soap and shower gel and suchlike from your vulval region. Only wash the vulval and anal area with the mildest of dermatologically safe soaps AND find a natural plant extract to moisten the skin of vulval region. Try normal Olive Oil, Coconut Oil, or Aloe Vera Gel. Try each for around 3 weeks and find which one suits your skin type most. Good Luck ......
Have you had a biopsy to confirm LS?
No two dermatologists have diagnosed me from looking. One reccomended i dont get a biopsy as it isnt necessary. However i feel that i need one to just put my mind at ease and again try and fight this horrible condition!