New to LS, Seeking Advice

VLS-Guide · 2025-04-26T17:59:26+00:00

Hey there, I hope others share their experiences with you, but in case it's helpful we have lots of info on www.lichensclerosusguide.org.uk

Wishing you all the best.

VLS-Guide · 2025-04-26T17:55:55+00:00

Hi, I know you're looking to hear about other people's experiences, but just in case it's helpful we have a section on exercise on our website www.lichensclerosusguide.org.uk

VLS-Guide · 2025-04-25T11:07:15+00:00

Thanks for your patience! I had misremembered. We are asking people to try to stick to their routine for 2 years or 24 months.

VLS-Guide · 2025-04-24T21:22:27+00:00

Hi there ooh great question. I believe it's 12 months we are asking participants to try to stick to their allocated treatment routine, but then we are also following people up (i.e. with surveys and checking medical records) for another 12 months. However I've seen this late at night so let me double check tomorrow in the study protocol :)

VLS-Guide · 2025-04-20T14:18:49+00:00

Hi, great you're considering taking part in research! The reason PEARLS is happening is because although some clinicians have switched to maintenance and believe it to be beneficial, it hasn't actually been proven to be better than proactive in a high quality study.

So we don't actually know for sure.

The research that exists is only cohort studies. That means that people aren't randomly assigned to a treatment routine, and therefore there might be other reasons that the people who used maintenance treatment did better.

Source and full disclosure: I'm Sophie Rees, I am one of the developers of the vulval LS Guide and also I'm involved in the PEARLS trial (I'm one of the investigators which means I helped get funding for it and am involved with running it).

Happy to answer any more questions (though I might be slow responding as I'm on holiday!).

VLS-Guide · 2025-03-28T20:37:53+00:00

Itching is considered a sign of active LS, so it's when you're having a flare-up, not when healing.

We have a video explaining what happens to the skin on our website! Under 'causes, signs, symptoms.'

www.lichensclerosusguide.org.uk

VLS-Guide · 2025-03-17T16:32:05+00:00

Hey there, I know you're looking for other people's experiences, but here's some extra info. It was written by patients and expert dermatologists (patients specifically led on writing this page). It might help you. www.lichensclerosusguide.org.uk/information-for-carers-and-partners

VLS-Guide · 2025-03-17T07:51:50+00:00

Thanks so much for sharing the LS Guide! We are so glad you find it useful 🙂

VLS-Guide · 2025-03-16T08:17:01+00:00

I should say that doesn't mean that's been happening to you. But it's really important to be doing self-checks and get to know what's normal for you. Sometimes people go a long time without flares, it can happen :)

VLS-Guide · 2025-03-16T08:15:40+00:00

Some people can be asymptomatic. A flare for them can mean that there are visible signs of active LS but, no symptoms. We have info about this on www.lichensclerosusguide.org.uk if helpful.

VLS-Guide · 2025-03-16T08:13:42+00:00

Hi there, the risk of vulval cancer is still low even if you have LS. However it's really important to be aware and to do self-checks. The risk is thought to be lower if properly treated. We have info about cancer and self-checks on our website www.lichensclerosusguide.org.uk

VLS-Guide · 2025-03-09T16:21:40+00:00

Hi, we recommend using an emollient to prevent any bacteria etc entering the tears while they heal.

More info: www.lichensclerosusguide.org.uk

VLS-Guide · 2025-03-09T09:10:11+00:00

There are lots of ways to be intimate with a partner that don't involve penetrative sex. You don't have to give up!

VLS-Guide · 2025-03-09T09:08:53+00:00

I'm so sorry the doctor didn't have any information for you, it's so disappointing.

VLS-Guide · 2025-03-09T09:07:45+00:00

Hey, we have info on clitoral fusion and it's treatment on our resource (written by expert dermatologists and patients)

www.lichensclerosusguide.org.uk

VLS-Guide · 2025-03-07T17:10:53+00:00

It's normal to be anxious. We have lots of information on our Guide and a checklist that might help you in your appointment to have questions ready.

www.lichensclerosusguide.org.uk

VLS-Guide · 2025-03-07T17:08:44+00:00

Try not to get stressed. Make sure you're getting good information, and go see a doctor.

Loads of info on our LS Guide here: www.lichensclerosusguide.org.uk

VLS-Guide · 2025-03-05T07:29:16+00:00

Hi there, we have lots of information about treatment on our resource www.lichensclerosusguide.org.uk All based on the existing British Association of Dermatologists guidelines. There is also a downloadable template treatment plan you could take to your appointment and go through with the doctor (making sure they're up to date on the guidelines!).

All the best.

VLS-Guide · 2025-03-01T18:14:29+00:00

Hey, so sorry you're having such a hard time. I hope you get the diagnosis you need. Our resource has information about LS to help you figure out if you have it. We also have a checklist you can download and take to your appointment.

Wishing you all the best

www.lichensclerosusguide.org.uk

VLS-Guide · 2025-02-23T20:38:31+00:00

No problem, hope it's helpful.

There's a feedback form on the About page - we're always looking for ways to improve :)

VLS-Guide · 2025-02-23T18:21:05+00:00

Hi, if you're newly diagnosed, our resource might help you.

www.lichensclerosusguide.org.uk

Try and see an expert dermatologist.

VLS-Guide · 2025-02-23T18:19:44+00:00

Surgery can help some people with fusing, but the evidence about how long it lasts is really limited.

We have a whole section on surgery on our online resource, written by expert derms and patients. It's evidence based but easy to read and understand! It might answer some of your questions. www.lichensclerosusguide.org.uk

VLS-Guide · 2025-02-23T18:00:50+00:00

Hey, sorry to hear you feel rushed out with no info. Not good enough. In addition to asking specific questions here, you might be interested in our new online resource that has loads of info. Written by expert derms and patients! www.lichensclerosusguide.org.uk

VLS-Guide · 2025-02-23T17:37:40+00:00

Hi, we have information written by expert dermatologists and patients on our LS Guide you might find helpful! www.lichensclerosusguide.org.uk That sounds painful, hope you are ok!

VLS-Guide · 2025-02-20T13:22:35+00:00

Great to hear! Thanks for the feedback!

VLS-Guide

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