Hi I've been diagnosed with LS never knew I had it although I always had the itch nd thought it was thrush.I was shocked when my doctor told me I had it..she never explained what it was..I had to Google it myself.When I examined myself half of my labia is missing nd some fused..I dont suffer bad with the itch just tightness so I'm using olive oil nd bread soda baths..I'm constantly now examaning myself in the mirror nd recently noticed a raised soft bump/spot inside my vagina nd worried wat this could be..would anyone have something similar would love to get some feedback ...thanks
when i was diagnosed my doctor sent to my gyno. She took a biopsy and that is when iI was diagnosed with LS. Please ask questions when you go to your doctor. Im surprised your doctor didnt tell you more.
is the bump you have is it white thats how mine started itvwas white bumps all over my vagina and i went on this site to learn what to do with ls. they put me on clobe steroid but it helped for awhile and then it didnt help at all. they told me to set in borax laundry soap which i only use 1/2 teaspoon because i have a sitz bath i use and i also use 1/2 teaspoon of baking soda. iuse mine in very warm water and sat for 15 minutes . the warm water really helps with the itching. ?But now i have the ls on my skin and i go to the derma tologist every 2 months for blood test. just try the warm water to see how you do.
Hi Fiona, please ask to see a gynaecologist who specialises in LS. I struggled with it for years before seeing the right doctor. You should give up using normal soaps/shower gels for a start - I am on repeat prescriptions for steroid ointment, Epaderm cream (it helps the dryness) and DERMOIL 200 shower gels. i was also give dilators several years ago. I couldn't use the dilators - because by then it was too painful to have intercourse. HOWEVER, three years ago i had surgery to open everything up - which was great - it worked. It's important to manage the condition. I live in Scotland, where are you? Ashley Jo
I also thought I had thrush for years and was shocked when I found out what it was, especially that there was no cure. I was referred by my Women's Health GP to a specialist in LS and put on a strong dose of steriod ointment to get it under control, gradually reducing the dosage to a low dose to use on a regular basis. She wisely told me not to go on the internet and look at the pictures as that would increase my stress levels which I know definitely affects the conditions severity. It is possible to get LS to a manageable state but it is coming to terms that there is no cure at this point. The key for me was to not resist the current recommended treatment. It has not been easy but it is a simple process to follow if you work with a supportive practitioner.
I have no idea why but in the US we have no gels or emollients available to bathe with the way you have in the UK. My gyn told me NO soap, just water which is not satisfactory IMO. She gave me a dermatologist's handout reiterating the advice. I discussed it with the pharmacist who searched and said there was nothing available.
PS. There is a medical book written specifically to educate clinicians called The Vulva - A Practical Guide For Clinicians by Gay Fischer and Jennifer Bradford by Cambridge University Press that includes LS so if you can't find a specialist this can support them with recognition and management not only for you but other women patients. In general there is a lack of understanding of this part of the body by society in general so educating ourselves and our medical health practitioners is key.
Hi Jo I'm from Ireland ,I dont use any kind of scented soaps.My doctor told me to use betnovate cream every night but dont like using it all the time,so I dint know if the betnovate is to help with the itch but thank God I dont suffer with that or if it's to stop my skin from fusing.I do have the burning feeling nd a discharge but my swab test came back clear.Im going to make an appointment to see my gp this week just to get everything checked out.
Hi Brenda it's more the same colour as my skin ,its a soft raised spot I'm goin to get it checked during the week just to be sure...
I think we can order the "dermoil" or "dermovate" or Oil of Britain or whatever from companies on the net. Just two day ago I saw an ad for a peptide cream from a German company. I didn't order it because I saw it had methylparaben and I've read nasty things about all parabens. You can buy lidocaine gel and of course the KY type of lubricant.Just looked up Epaderm but cannot see ingredients. Available on Ebay for $8 and $16 different types and sizes. Label says "No fragrances, No preservatives." Amazon says it's "soft paraffin, liquid paraffin and wax." Says "no active ingredients" Doubt it's much different than vaseline. It is the No 1 ointment in the UK. Neutrogena makes a "Dermoil" but it says can't use near groin. That Let's us out right there. Maybe the UK version is different. ....And now a Word from our Sponsor....
If I was in a remote area and had only one doctor available to see I might consider bringing them a book, but medical doctors have computers just like we do. How can it be that they aren't encountering conditions they are not familiar with and are not doing searches to find out what the problem might be?? It is frightening to think they need patients to bring them books. Are they so closed minded that they think they have seen and know everything? There would be an awful lot of misdiagnosing going on if that's the case. Over the years I've had GPs refer to books in their office and do computer searches while I was there; I was impressed that they were humble enough to admit they didn't know.
I want something to wash with. Have tried washing with coconut oil, but I'd say it isn't up to the task. Ashley mentioned a Dermoil 200 shower gel. Would rather not have to order from UK. I don't understand why we have nothing in the US. I did ask a pharmacist last year to look up another product someone from the UK had mentioned and she said there was nothing available like that here.
Hi Fiona, i think its really important to seem a specialist - and i have been told i will always have to use steroid ointment - and to ise it every day when i have a flare up. i hope you get on well at your appointment. best wishes, Ashley Jo
I am in UK and have been using Epaderm and Zeroderm (same thing) to wash with for several years and it is very good. It is soft paraffin based, but easy to use and very soothing. I don't rinse it off completely as it is moisturing too. It is not like vaseline. I also have Cetraben prescribed by dermatologist which is similar: an emollient to wash with and an ointment to apply after going to loo.
I also think that steroid ointment application is imperative to keep LS under control.
suzanne, which level of steroid are you using and how often? I have never had a flare up, only a slow spread of the white (so minor I couldn't see it) accompanied by a buzzing feeling despite using the meds as directed by a gyn very familiar with LS. The buzzing finally stopped just before I saw a dermatologist (instead the gyn who was no longer available). The derm put me on Tacrolimus five days, twice a day then two days of clobetasol for two days...forever. Added to this I was using hormone cream twice a week. It was just too much so I'm trying to figure out what a low dosage of all of it is, including the steroid. I've gone back to the medium strength Triamcinalone rather than the clob to give my skin a rest. I have an appt to see the gyn (who finally reappeared) in May. Till then I am trying to figure out an effective protocol that works but isn't damaging.
Beverly, Have you tried olive oil soap or Castille soap? That's what I've been using and it works well. I see Sarb, here below, suggests Epaderm. Haven't seen that in any health food store so likely have to order it. You can buy olive or castille soap at many nice grocery stores (even without an app, hah hah) or at places like Trader Jo's or Whole Foods.
I have used olive oil soap in my life pre-LS but not since. It may have had more than olive oil in it though. Not sure if I have seen it since. Also used goat milk soap in the past. Last week I saw a castille soap but I think it was peppermint. No Trader Joe's or Whole Foods here. Will have to look further.
Epaderm comes in a tub, I just scoop out a dollop to use like soap in vulva and vagina area. It's not expensive and a large tub lasts a good few months. It is for sale in chemists and supermarkets in the UK. I wouldn't use anything else now.
I am in the US, and my doctor highly recommends using Vanicream Gentle Body Wash. Supposedly CVS and Walgreens carries it, but i ordered mine on Amazon. https://www.amazon.com/Vanicream-Sensitive-Dermatologist-Fragrance-Paraben/dp/B07FKQGN7F
Sarb, would you say it is more effective than using coconut oil as a cleanser? I'm wondering if there is a US equivalent to Epaderm. To have it sent from the UK seems so foolishly wasteful. Is anyone out there using a similar product in the US? ?