Please help!

Hi Lila01988

I recommend making an appointment with your OB-GYN. They will do an exam, and then if they suspect LS will prescribe you a steroid cream. The cream you should use as they direct, then they will have you come back in to see how the cream worked for you. 

They can answer all of your questions and teach you about LS.

Good luck! I was recently diagnosed and it was scary, and the information on the internet isn't as good as talking with a real live doctor

Hi Lila01988

Don't panic, stressing won't help you. Are you in the UK? If so, search google for  BSSVD and you will find a list of all specialist clinics in the UK. I am about to have a private appointment with a Consultant who specialises in vulval skin conditions. I am currently being treated by my GP who has a special interest in Gynae things and her view is that it doesn't matter whether you see a Gynae or Dermatology specialist, as long as someone is keeping an eye on you. 

The first thing I noticed was those little bumps, sometime later I got the itching but it was never where the little bumps were, always higher up, on the Mons pubis area and around the outside edges of all the hairy bits, not on the labia.

I think the thing you need to hear is that the condition can be easily treated. It may be that you are one of the people who can be treated and it doesn't come back, as can happen in young girls apparently. If you look at the British Skin Foundation website there is an article there which is very helpful. 

Seems like you have found it early, let your Dr get it under control and then go from there. 

I AM NOT MEDICALLY TRAINED AND THE FOLLOWING IS BASED UPON MY READING AND RESEARCH OF ISSUES AROUND LS.  I was asked a while ago to take part in a survey about Lichen Sclerosus research topics. They wanted to know what LS sufferers wanted more information about. I recently had an update and it seems that there are a lot of people who want the issue of hormones and how they interact/impact LS looked at. One of the other main issue that patients want further input on, is regarding the necessity to continue with steroid treatment after the treatment has been successful, i.e. periodic use of steroids to keep it at bay.

So, the current hypothesis is that it is an auto-immune issue as people with other AI issues, particularly thyroid issues, represent a large percentage of diagnosed cases. However, I think that when they conduct more research, they will find that the link is hormonal ( thyroid hormone is impacted by imbalance in other hormones). 

There is a lack of research in this area because the drug companies have the whole situation tied up regarding thyroid disease and patients are in a straight jacket regarding treatment and progress in management of the issue through a proper understanding of what is going on with the rest of the hormonal system and environmental sources of hormone disrupters. Maybe the research done into LS will help thyroid patients in the long run, we can only hope :-) 

This is the information that it is important for you to hear: you can help yourself to keep your hormones in good order by ensuring you minimise the environmental hormones you are exposed to. This is a serious issue and something that everyone should be concerned about, especially people who MAY have a condition that MAY be impacted by hormones.

This is the definition: " Environmental hormones, which are called endocrine disruptors or hormonemimics in scientific terminology, is a generic term for chemical substances that enter the body and mimic hormones, thus disrupting the functions of hormones naturally secreted by the body".

From Wikipedia "Environmental hormones are chemical compounds that resembles endocrine hormones. They may be either of natural origin, such as phytoestrogens, or of synthetic origin. These compounds are able to activate the same endocrine receptors as their natural counterparts and can thus disrupt hormonal activity. The synthetic ones are the main problem because we cannot easily control our exposure".

IMPORTANT : From the US, National Institute of Environmental Health Sciences "Endocrine disruptors may be found in many everyday products– including plastic bottles, metal food cans, detergents, flame retardants, food, toys, cosmetics, and pesticides. The NIEHS supports studies to determine whether exposure to endocrine disruptors may result in human health effects including lowered fertility and an increased incidence of endometriosis and some cancers. Research shows that endocrine disruptors may pose the greatest risk during prenatal and early postnatal development when organ and neural systems are forming."

Of course, treatments can only be based on results of reliable research and the link between LS and hormone disruption is still to be looked into. 

Loads of things to take on-board for a young person, such as yourself but based on the high profile of hormone issues among LS sufferers and what we know about environmental hormone disruptors, I wanted to give you some ideas that you can do your own research around. 

If you come across anything of interest in your research please post it on here to help keep us all up to date.

Very best wishes.