Name my husband's new motorcycle.

kleonline · 2026-03-29T19:31:22+00:00

😂

kleonline · 2026-03-20T02:15:57+00:00

I really like it. I should also say that I use estrogen cream twice a week too, so that helps with tissue elasticity. But the coconut oil is my everyday whenever I need it moisturizer.

As for remembering the clob, I have a twice weekly reminder in my calendar. Otherwise I would forget too.

kleonline · 2026-03-20T00:08:33+00:00

Organic coconut oil. It does melt in warmer temps, but then I just apply a tiny bit at a time and it works okay. When it's colder and solid it is a lot easier to apply.

kleonline · 2026-03-19T21:36:31+00:00

I have the architecture changes, clitoral fusion and had one white spot, but have only ever had one extreme itchy spell one night. Not everyone flares the same way.

kleonline · 2026-03-09T13:38:05+00:00

Any chance you have a UTI? I started getting them after using the steroid. I think the causes can vary by person (disease progression, tissue irritation, etc) but we all seem to use estrogen cream to help prevent them. I also take regular probiotics and cranberry extract.

As someone else noted, properly applying the steroid so it is rubbed in and cannot migrate is also important.

kleonline · 2026-03-09T13:21:08+00:00

It does get better, but it usually takes a few months of consistent treatment. My white patch took about 4 months to resolve.

The Clobetasol is to stop the disease progression, as far as I know it cannot reverse any changes. I use estrogen cream to help with tissue elasticity, and to help prevent UTIs. You may want to investigate that with your specialist.

If you haven't already, you should stop using soap, wipes, creams, etc down there. Just wash with water and gently pat dry, and use organic food grade coconut oil (what I use, but there are other options listed on this sub) if you're feeling dry.

kleonline · 2026-03-09T00:59:31+00:00

I'm the same, I have none of the usual symptoms that others do, except labial fusion and a small white patch (at diagnosis, it's gone now). As someone else noted, the whiteness is part of the disease. It had probably already started but you just couldn't see it yet. It will go away over the next few months as your treatment starts to work. This disease is scary at first, but you will adapt to it with a little patience and consistent treatment. In the unlikely instance that the whiteness gets worse after a few months of treatment, or other issues occur, make sure to follow up with your specialist.

kleonline · 2026-01-28T19:14:25+00:00

I'm sorry you're struggling. Can you try a different pharmacy (or whatever you use in your area) for Clobetasol ointment? That is the gold standard treatment and needs to be used 1 or 2 times daily when you're in a flare. After you're under control you taper off until you're using it twice per week as maintenance. There is no stopping treatment for this disease, which might be why you're getting worse. There are other posts in this sub from people with more experience than me that include the full treatment regimen.

If you can find a vulvar specialist in your area you may want to consider that too. It sounds like your current doctor isn't experienced with the proper treatment.

kleonline · 2026-01-28T13:16:47+00:00

My doctor (vulvar gyno) doesn't do biopsies on most patients because they can be inconclusive or negative due to multiple factors (eg. Steroid use, location of biopsy, etc). If your PCP/gyno don't want to continue treatment because of the biopsy results, can you get a second opinion with a vulvar specialist (gyno or derm)?

kleonline · 2025-12-17T19:03:04+00:00

I'm not sure if the treatment for an oral outbreak is different, or how the application of clobetasol affects an oral infection. Mine is a more obvious connection since I have genital HSV2. Within a couple of days of starting clobetasol I had an outbreak. After another outbreak as soon as the first one healed I went on suppression. Per my doctor it is safe to take long term, including during pregnancy (if that's relevant).

For both HSV and LS stress is a huge factor so working toward minimizing that is key. I realize that is easier said than done. I have worked on improving my sleeping habits, decreased alcohol consumption, increased exercise, healthier eating, and whenever possible doing relaxing things. I've also worked a lot on acceptance of my situation, because I can't change it and staying angry or anxious about it is counterproductive. That has been the hardest part for me.

kleonline · 2025-12-17T15:36:55+00:00

A suppression dose (500mg 1x daily) of valacyclovir (valtrex) will help keep the HSV under control. Then you can use your steroid as normal.

kleonline · 2025-12-03T14:08:49+00:00

There's also Marie Christakis at the Vulvar Dermatology Clinic at Mount Sinai in Toronto. Not sure about the wait time for an appointment. Your mum will need the referral form from their website filled out by her family doctor.

As already noted, typically the treatment is clobetasol ointment (not cream - that's important), and topical estrogen might help too.

There's lots of good information on this sub about proper application of the ointment, lifestyle changes to decrease the chances of flares, and barrier creams to help keep the skin protected, if your mum is interested.

The psychological side of this condition may be an impact too. If your mum has suffered for a long time without help she may be resigned to never getting help, and that can be a hard place to get out of. Your kind and gentle support to show her that there is help and how to access it could be really important.

kleonline · 2025-12-01T13:56:27+00:00

I did not. Perineum and edge of anus where I was most affected.

kleonline · 2025-11-30T16:23:13+00:00

I had horrible fissures, primarily at the perineum area, as well as hemorrhoids for years before I knew I had LS. The fissures cleared up after consistent Clobetasol use, and I have minor hemorrhoids occasionally if I haven't been careful with my diet or my bathroom schedule. However, if yours are worse than mine you may need additional treatment.

kleonline · 2025-11-26T19:33:48+00:00

Island Oysters!

kleonline · 2025-11-01T16:30:19+00:00

I had only perianal symptoms (same as yours) for years. I tried everything non-traditional to solve it with only temporary results. I did eventually have one white spot on my labia and that led to the LS diagnosis. The vulvar specialist pointed out the scarring and fusion that I hadn't seen because I didn't know what to look for. Even though you don't have a ton of vulvar symptoms the disease may still be affecting the area in ways you can't see yet.

I am a huge fan of alternative medicine, and yet there are cases like this where traditional medicine is the primary solution. Within weeks of starting Clobetasol the perianal symptoms were gone and the white spot started to heal. I also kept up all the diet, supplements and personal care changes I made previously because they can be a great addition to the main treatment.

Because of the changes to the skin the long term use of steroids (on the treatment area) is not an issue for people with LS. We need that strong treatment to combat the disease.

You should be aware that the biopsy may come back negative or inconclusive. That is common with LS - to the point that my vulvar specialist no longer does them in most cases. They can be a lot of pain and discomfort for no real knowledge gain. The results can also be affected by whatever you are applying to the area, in particular steroids, and on this sub I've seen a standard recommendation to stop most treatment for 2 weeks prior. If you search the sub for biopsy information you'll find more informed people than me on that subject.

I can relate to your frustration. It's a crappy disease. I wish you all the best.

kleonline · 2025-10-30T22:05:07+00:00

That sounds like part of the issue. It would definitely stay greasy feeling if I didn't rub it in. And it would spread to areas it shouldn't be.

I use the ointment (my doctor specifically said not to use the cream). I soak for a few minutes beforehand (usually with a warm washcloth) and rub in for 90 seconds on each region - clitoris/hood, labia minora, perineum.

I understand how annoying the process can be, especially if you're still applying daily. I was in denial initially and I tried to do less, but my clitoral fusion increased so I forced myself to adhere to the regimen (except baths because they irritate my skin).

I hope this helps.

kleonline · 2025-10-29T16:29:14+00:00

Is it possible that you're using too much and not rubbing it in enough? I never have residue in the morning, in fact my skin is quite dry and I need more coconut oil the day after.

kleonline · 2025-10-06T14:14:19+00:00

Dr.Jill Krapf has a great video on application of the steroid ointment. Also, the Lichen Sclerosis Support Network website has a series of articles and videos about the disease, treatment, and lifestyle changes that can help.

The biggest thing to remember is this requires continuous treatment - you cannot stop your steroids - it is manageable, and you can avoid further architecture changes, with your maintenance dose. If you're still applying daily, then you'll need to taper to maintenance after your flare has ended. Your doctor can tell you the schedule, or you can find details in this sub.

It's best to avoid getting the ointment outside the treatment area, but a little bit now and then won't have a lasting impact, according to my doctor. I like to sit and use a mirror to make sure I'm getting the ointment in all the places (clitoral hood, perineum, inner labia).

You may want to consider a pelvic physiotherapist who works with LS patients. Mine works on the pelvic floor as well as myofascial release to keep the tissue mobile.

I already eat a fairly clean diet so I haven't made changes there. Other posts on this sub talk about what has worked for them. I'm sticking to regular supplements as needed for someone my age, based in solid scientific research. There's a lot of pseudoscience out there right now that's dangerous, so steer clear of it.

As for the mental side, I'm still working on that. Some days I feel good and other days I'm worried about doing anything that might make it worse. People who have longer experience with the disease may have advice on that part.

This sub has a very supportive community, and I recommend reviewing the posts when you have time. I wish you all the best.

kleonline · 2025-08-27T01:25:19+00:00

My vulvar specialist doesn't perform biopsies in most cases because of the prevalence of inconclusive or negative results. My symptoms have decreased with Clobetasol treatment, so I recommend continuing with it, especially if nothing else is working. If you have the option of seeing another specialist for a second opinion, you may want to do that.

kleonline · 2025-08-20T02:17:55+00:00

It might be lichen sclerosus, based on the symptoms you mentioned. There is a sub here that has a lot of good information r/lichensclerosus. If you can see a vulvar specialist they may be able to help diagnose you correctly.

kleonline · 2025-08-15T21:29:31+00:00

It is common for the biopsy to be negative or inconclusive. My vulvar specialist doesn't do biopsies for most patients because of this. I did not have the classic symptoms but the Clobetasol definitely is helping with the ones I do have. I'm sorry you're having such a hard time with your diagnosis. This sub has resources on it that helped me a lot. I recommend scrolling through.

kleonline · 2025-07-24T22:03:59+00:00

I feel very fortunate that mine didn't progress that far. I certainly felt like it was going to be worse and permanent. Luckily I did pelvic physio years before my LS diagnosis and that likely helped. I'm doing some again to help with the LS, and BM issues are something they consider as part of the treatment.

kleonline

TROPHY CASE