Lichen Sclerosus - Where to start?
Posted , 6 users are following.
There is a lot of information out there is cyberland so felt to post this with a referral to the LS section of the Australian and New Zealand Vulvovaginal Society's website under Patient Information.The UK also has the British Association for Dermatologists with a great page with good i formation and treatment including a link patient support organisation for LS.
I was fortunate enough to be referred to a Women's Health clinic that gave me this information and I followed their recommended course of treatment. My doctor also recommended I not search the internet particularly for picture because you cannot compare yourself to others and to simply focus of getting the skin condition under control and then onto a management plan. This was great advice which is why I am passing it on. The early LS is treated the better!
I was diagosed with LS in 2015 and my complementary health practitioner was also on board with this treatment so I had a lot of support to not fight the currently best known treatment plan and have been able to manage this autoimmune condition so much so there has been little to no deterioration of the skin since diagnosis. The hardsest thing to come to terms with was this condition is for life and can it can bring up a lot of emotion and anxiety so speaking to others with this condition helped me immensely. I am happy to speak to anyone who wants to reach out anytime if you are feeling alone with this because in my experience not even therapists get what you are going through.
The difficult part for me has been to stay on the treatment plan and so have had to address the long term disregard I have had for this part of my body ie. not paying attention to the genital l area unless there is pain and sometimes even putting up with the pain. I have found it interesting to note that I can take care of other parts of my body, making sure I treat the delicate parts of my face and hands for example but ignore the vulva, the "down there" region. So yes, there is a way to treat this condition, get it under control, manage it and lead a relative normal life but I understand this has not been the same for everyone and it is sad to read the affect LS has had on so many and God knows how many out there are battling with this relatively unknown condition alone.
The first step is to find a medical practitioner who specialises in vulval conditions to get a diagnosis (see the website referred to above) and then following the treatment plan including avoiding irritating substances (including food choices) and having an open and honest conversation with your sexual partner to support the condition when having sex or having to obstain and possible alternatives for connection while getting it under control.
Unfortunately for me I did not have a supportive sexual partner so our relationship has ended but then that was a reflection of the relationship in general. I most certainly haven't given up on sexual intimacy, there simply has to be a more deeper level of care required so I don't see that as a bad thing ... and penetration isn't everything in love making and intimacy between two people! There is more to explore and discover with this condition and I appreciate this forum to be able to express as such. We all need to be doing this. As my women's health GP said, women don't talk about this part of their body, even with their best and closest friend so there is a lot of secrecy kept hidden and a lot of women experiencing deterioration of their vulva's unnecessarily.
If your gyn or GP needs help with more information there is a great resource for them from Cambridge University Press called The Vulva - A Practical Handbook for Clinicians written to support accurate diagnosis so treatment can be effective and within reach of clinicians everywhere. Sometimes our clinicians need to be pointed in the right direction by their patients so if you don't have easy access to a vulval specialist that knows this stuff get your doctor on to this book and the websites referred to above.
All power to you dear LS friends,
Suzanne x
2 likes, 3 replies
beverly52803 suzanne25846
Posted
Thank you for posting this, suzanne. I think I read the pertinent parts in both the UK and NZ/Australian literature but saw no mention of prescribing Tacrolimus which seems to be popular now with dermatologists in the US. Perhaps that step is taken only if LS does not respond well enough to the steroid.
Also, is there any mention in Australia (I assume that is where you are) of laser treatment, Platelet Rich Plasma injections or the drug naltrexone as treatment options?
suzanne25846 beverly52803
Posted
I am in Australia and aware of laser therapy for Vaginal Atrophy which has been reported to help LS but not aware as yet of the other two treatment options. There are many options for additional support of the LS but the foundation for me has always been getting it under control with steriod cream and the management on a very low dose which has meant little or no deterioration since diagnosis.
suzie37971 suzanne25846
Posted
Thank you for that information . I truly agree with everything you have said , as being diagnosed two years ago now by a gynae in uk .
Although like many sadly i struggled at first , emotional, diet and worst of all trying everything that people recommended . Instead of sticking to what i had been advised . Also moving to Spain and lots of stress i felt my LS was out of control . But went back to the start and continued with what worked on me . As LS is a very individual condition and not everything works for everybody and as i have found some harsher things like T tree burn and cause blistering . For me gentle is best and i have kept my architecture also . May i also very much agree with Suzanne not to scare yourself to death with pictures as we are all very different .