Newly diagnosed with Lichens Sclerosis

Hello! I was diagnosed with LS when I was 23. I'm 27 now, and wanted to share my success with laser therapy. When I first started experiencing symptoms at 24, I did a lot of research and tried the usual methods of borax, essential oil/castor oil blends, and the prescribed steroid treatments. Nothing was working to reduce my itching and pain. After about a year, I came across information about laser therapy. Specifically, the Mona Lisa Touch treatment. This machine was originally designed for post menopausal women to reinvigorate the vulva and vaginal opening to increase collagen, natural lubrication, and overall improve sex for older women. I am lucky enough to have a clinic 30 minutes from me that had the Mona Lisa Touch laser available, and they had been using it for LS patients. The Dr I saw prescribed me with 6 treatments, one every 6 weeks. I had the scarred areas lasered, and after only 4 treatments my pain had subsided significantly and the scarring had stopped spreading. My doctor reduced the price for LS patients. Mind you, it was still pricey at $250/treatment at the reduced rate. She did say she could recommend to my insurance to try to have them help pay for treatment, but I did not go this route as I had just turned 26 and was switching to my own insurance. Regardless, it was well worth the cost in my opinion.

It's been over 2 years since my last treatment, and I have not used any other medications or natural remedies for my LS since my last Mona Lisa Touch treatment. I'm still virtually pain and itch free. I do experience some slight pain with intercourse, mostly due to the swelling when aroused. I have also found that a silicone based lubricant helps immensely with penetration.

I hope sharing my experience and success with laser therapy will help someone else dealing with this horrible condition.

hi Becca, i am totally new to this site and i am beyond anxious. 10 days ago

I thought i had thrush so used a canesten pessary but it didnt completely clear. after speaking to pharmacist he suggest i went to Dr for something stronger. Saw a very young lady Dr on Thursday who examined me and bluntly told me "its not thrush, it LS". i said 'whats that, she handed me a leaflet and prescription and that was it, she couldnt wait to get me out of the room.

For the past few days i have been distraught, literally, looking on google. i did not have a good experience at the Drs and i feel totally alone, feel ive been given a death sentence. She gave me Dermovate twice a day for a week and then lower the dose.

I am an anxious person at the best of times but this has completely blown my mind as i seriously have a fear of cancer. please can you help with some advice as i really dont know what to do, im out of my mind with worry.

To be honest i dont look down there, dont appear to have any cuts, it was just itchy like i had thrush !

The itch has gone but dont know what to do next ??

Had my first flareup last year. Horrendous. I now have Clobesterol on hand and used it last summer for maybe less than a week and at a smaller dose and it did cure me. Defiinitely caused weird like cramping and bad depression. Can't handle it but it did cure me. Also the side effects are thinning etc (which is what it's supposed to be curing!) So I did use it just last week (maybe I flare up in summer but just for a day or so). Don't have to use it for weeks on end etc. Just don't. I also had found Emuaid which I use and am using right now the past couple days. At least it can't hurt me but not sure if it cures it exactly but its safe. Also I did a fairly radical lowering of oxalates. I cut out olives which was hard. I never eat spinach, etc but I have cheated quite a bit with chocolate this last month and maybe that did it. Go on a low oxalate diet (no olives, spinach, etc). It really helped me. I'm about 85% better but still bothered. If I have to, I'll take Clobesterol for a couple of days but I want to avoid it. I read again despite what doctors say you don't need to take it unless you're having a flareup. Thanks for this forum. It's a nightmare I don't like going it alone.

I was diagnosed about two weeks ago. Because of Covid-19 my doctor has been trying to advise me for nearly six months over the phone. He thought it was just vaginal dryness and thinning, but eventually he told me to come in to see the nurse and as soon as she examined me she told me I had Lichen Sclerosus - quite badly.

I've had months of sleepless itchy nights, really bumpy and red raw skin all over my undercarriage! They have prescribed me steroid cream but I don't feel it's doing much yet. As I'm at home I'm taking their advice and not wearing underwear and using emollient creams for washing.

I am thinking of trying Emuaid, but it's so expensive and I'm currently out of work. I'm so sore that just moving is painful. I have diabetes and I'm worried that if I can't get control of this that other complications will arise.

I know this is partly because I'm overweight and partly my age (50), but i'm confused by all the different advice out there. I just want something to heal my skin and reduce the discomfort. It's really getting me down and I'm struggling with everyday working life and parenting (I'm a single monther of two school age children).

Any advice would be much appreciated.

Kx

I too have been recently diagnosed after seeing a urogynacologist who said I had mild case. This is after suffering from cystitis pains since March, being treated over the phone with 2 weeks of antibiotics for an infection I did not have, pessaries to right a vulval ph balance, which did not work followed by more antibiotics which again did not work. I also was given steroid ointment which does not seem to help and regularly lubricate with olive oil. Apart from an occasional slight soreness my main problem is having almost constant and painful cystitis - not!

l have not seen any posts which mention this and am wondering if anyone else has experienced it

Propylene glycol is a preservative used in creams and ointments to preserve shelf life. I have tried every thing to manage LS and prevent exacerbations. Clobetasol is the "gold standard" per protocol Gyn and Derm specialists around the world. I see an MD who treats only vulva and perineal disorders. Office visit 9/10/2020....He was not aware that Trade Name Termovate in the USA was discontinued 4 years ago. More than 37 pharmacies manufacture generic clobetasol adding a minimum of 5 (10 options) inactive ingredients. All add propylene glycol. According to dermatologists the 3rd most common substance causing allergic skin reactions is propylene glycol. Each refill offers a different pharmacy source & thus a different LS response... to clobetasol. Clobetasol has a 3 month shelf life once blended with inactive carriers. Having talked with multiple pharmacists who dispense generics... not only are there 10 possible inactive ingredients the percentages vary in every production. Therefore, every LS patient treated with generic clobetasol has been using a prescription treatment that most of us are allergic to, and, it appears the clobetasol becomes inactive 3 months after activation. That suggests the clobetasol helps us not; the propylene glycol increases our pain, anatomical changes, and heals us not. Ladies we have been compromised! 3% will develop Squamous Cell Cancer... at 15 years that increases to 4-6%. SO yesterday I requested a prescription for a local compounded ointment using 0.05% clobetasol without PG knowing it must be refilled every 2 months. The "gold standard" has been a protocol... our charts document failure rate secondary to not following directions. I told MD yesterday... I have not been compromised by your protocol but by generic inconsistency. The problem is the generic form. It is inconsistent and laced with allergens. Each of your entries taken as one voice, mine added... MD's are prescribing but unaware of manufactured generic variations. I am an RN, 68 years old, patient advocate.

Dr Brooks resisted, however, office staff shared he always writes compounded clobetasol for women under 40. Go figure? So current trial (clobesterol compounded with mineral oil and aquaphor) Pharmacist at compounding pharmacy helpful... add OTC aquaphor for twice weekly maintenance. This does require small accurate measurements with some loss of ingredients. however, treatment for SCC would be far more $$$$.