The information day on Saturday, 18 June was very successful. Later I hope to post a report on the day. This page is now open for comments from those who attended the day.
Grateful thanks goes to our speakers, who gave their time up at a weekend to come and talk to us. Thanks goes to everyone who supported the day and to my LS ‘soldiers’ who manned the reception, registered the guests, ran the raffle and supported and uplifted me through out the day and before. The raffle made £150. Thank you everyone who donated a raffle prize. Fabia.
Hi Fabia….Congratulations on a really great day..I am just sorry I could not make it in the end health matters and travel just would not allow..The people who went from our site have come back with loads of really helpful information to pass on……Thanks again for your constant commitment…
Take care Malxxx
Thank you Marilyn. They were top notch speakers, some of the best, so all the information was well researched. I was sorry not to be able to meet you. I hope the talk has finally laid to rest the myth about applying a pea sized amount of steroid. It is not possible to generalise about the size needed as some women have bigger areas to cover than others! Many were shocked when the slide of the finger tip unit was shown but it is common practice with a lot of UK dermatologists and gets good results.
Hi Thanks for a really educational day. I really enjoyed meeting other sufferers. Sorry I didn’t get a chance to speak to you Fabia, you were so busy, but thanks for getting me in at short notice.
Let’s hope these type of days can be arranged in the future.
Janet
The Information Day exceeded my expectations. To be in a room with specialists who were able to hear our concerns and answer questions was so refreshing. Meeting others with LS made me feel comfortable to discuss the condition openly and frankly. It was definitely worth travelling to. Thank you to everyone involved with the arrangements
Its a shame that the finger picture was not sent out to all hospitals as a guideline, and literature that patients could read, then many would all have known earlier and not been apprehensive about steroid use and their skin thinning through over use… We need good guidelines that we can read and hospitals can give out..This just doesnt happen….
The sad thing for me is that the finger tip unit information was on the old site that I took down recently! I can always put it back up later on. I don’t think anyone ever believed a lot of the information I had on the site and preferred to go for ‘alternatives’ – giving information has always been challenging!
Excellent.
Many thanks to you Fabia and all helpers and speakers for this important day of useful, current information, presented in an easy to understand fashion in a relaxed and friendly environment. It was also very helpful to speak to others with LS and ask questions of the speakers. The day was very timely for me, about to have a Fentons. It equipped me with the facts to make an informed choice – and ablle to explain why a Zplasty will be better.
And, to top all that I won a bottle of champagne.
Cheers everyone !
A fantastic day. Very interesting , really helpful to meet so many like minded people that can share their thoughts and feelings about this horrible condition. It would be so helpful if ALL the professionals that are dealing with LS LP etc ie derms and gynaes could get together to say the same thing though, as at the moment the day highlighted that we are all being given conflicting advise from our drs as to how to treat, how much, how long for, when to be seen etc etc. this is obviously very confusing to us and it’s only with the help of tried and tested users with the condition, and speaking on forums as to what works for others, which is sometimes different to what our drs have said, that we’ve been able to get our symptoms under control. This day reiterated the fact that these forums have been a god send to many whose drs have told them conflicting adviice from what was said on the 18th. As was said, even the medical profession are learning from this condition as they go So these days are essential for spreading the ‘word’ about this condition and
Hopefully there will be more of them I just want to thank everyone concerned for making the day
possible. I just wish that the profs all lived in my neck of the woods! I was really excited with the stem cell or ‘fat exchange’ that’s been so successful in Italy, hope it sons takes off in the uk.
thank you, THANKYOU THANKYOU.
Well done everyone.
Fiirst of all, many thanks to Fabia and her helpers – the day meant so much to everyone and it was clear that there has been an enormous sense of frustration about the confliciting advice women are given. Even the Netherlands website we were given on the day warns about over-using steroid creams!
In the past I have been wary about the amount I used and after a biopsy for cancer (thankfully negative!) showed no evidence of ‘live’ LS, I discontinued usage. This was a big mistake and I am now back on the regime of one month daily use, one month alternate days etc. Six weeks in, there is a significant improvement.
Fabia, is there is anything I can do in the future to help the cause, please do not hesitate to get in touch. Thanks again.
The information day was fantastic,I Thought the information about the amount of steroid to use helpful,so nice to meet people like me with LS, and I won a bottle of white wine,thank you to Fabia and all the speakers and all who helped
Many Thanks
Great day lot of useful information,it was so nice to meet people with LS also the amount of steroid to use was very helpful
thankyou Fabia speakers and helpers
hi there i have just found out there is a suport group for LS iv had the condition for about 6 years but didnt no i had it till about 2 years ago i would like to no more about it and help i can get nothing seems to be helping just keep going to the hospital hope someone can help thanks
Most of the helpful information there is can be found using the link to ‘the basics’ page. You could also discuss the problem of not getting as much help as you would like to have with your GP and perhaps think about asking for a second opinion or a treatment review.
Like lots of others on this site I was so pleased to find you You tend to feel you are alone searching the internet for information I was diaognise with l.s 6 months ago after a biopsy was perform but only after 6 visits to my GP insisting that all the creams she was giving me over a period of 2 years weren’t working! Have been using the derma. cream and washing with aquas cream. I have another appointment with the gynocologist in two months but my clitoris seems to have disappeared. Help please.
This is the first time I have visited LS support group – I did not know there was such a group. I also note that within the above comments there are none from males! I am sure there are some out there but just keeping quiet though I do understand that it is mostly females that are affected by this horrible disease. I suffered for years and had several biopsies taken before I had 2 ‘ cut off my penis and then rebuilt a new head – a man’s worst nightmare perhaps! However, if there are any men reading this with their toes curling, it is not the end of the world and though an absolute last resort for sure, it is better than suffering this disease and the long term possiblities of cancer. Before having this done it was also hard on my wife who remained very supportive throughout. I contiue to have a wonderful sexual relationship with my wife and in my mind I am sorted, even though my penis is 2′ shorter and have a loss of sensitivity, and sometimes sex does not quite work out, I am perfectly happy. This is a worse case senario and your porblems may not be as bad and may respond possitively to treatment.
This is my first time on you site, and it is such a great resource to have.
I have had this horrible condition for about 20 years, diagnosed about 10 years ago. I had no idea what it was until I was a doctor in my IVF clinic advised that I get it checked out. My own Gynecologist at the time never even mentioned it to me. So I went to my GP who sent me to a specialist, I had a biopsy done which came back positive for cancer and had a radical vulvectomy done a matter of weeks later. That was nearly 9 years ago now. Since then I have struggled to keep the skin right but with very little success. I have tried every lotion & potion going, I try to avoid steroid cream but sometimes you just have to use it. I have had many biopsies done over the years and then last year one came back positive for cancer again. This time I had radiotherapy, which was not the most pleasant experience of my life as you can imagine. But the staff & doctors are wonderful and I have a lot to be thankful for. Just last week however, I got the results of another biopsy which is showing some anomalies, so am waiting to hear what is going to happen next. Fingers crossed for good news.
Thank you for the site, as I say its wonderful to have a forum to talk to people who actually know what you are talking about for a change. Sorry I missed you information day but I will watch out for any more you may do in the future and would love to attend. I wish you all the best with getting the site up and running again.
Hi I’ve just been diagnosed with LS and my partner is having a problem with it and refuses to have a sexual relationship. Is this common and how do i convince him that its not a problem. Any advice would be appreciated thanks x