I've been diagnosed with LS and am scared!!

Sorry to hear you have been diagnosed with LS as you are young and they say there is no cure but it is treatable so you are itch free most of the time using steroid cream and a moisture ointment such as Hydramol . I haven't read on here of anyone who has been diagnosed with cancer so keep calm and enjoy life we only have one .

Hi Shauna,

Almost gave up trying to get into this program to reply.  The program somehow doesn't always allow me to participate.  

I'm so sorry to learn that you are suffering LS at such a young age.  Looking back I think that I have been suffering this auto immune disease for much longer than finally diagnosed.  At first it's very overwhelming, to say the least.  Fear of things turning into cancer is valid.  Reading about all these people's experiences via this support group, however, may help to understand that it is mostly the fusing and flair-ups we try to cope with. 

To keep a close eye on things 'down there' I keep taking photographs on self timer regularly, enlarge the picture to have a close look on what is happening. It gives me peace of mind to see that things are at least not getting worse or that all still looks the same.  For me, meanwhile 63, I think the diagnoses came very late.  (There's a doctor in Vancouver who promotes early diagnoses, raising much needed awareness with doctors.)  

One of the things I'm using is CMO cream.  It has helped with some defusing, but for me to say "I'm cured" will take forever.  I imagine that for someone your age it may have a good chance to defuse completely. Although much care will forever be necessary to keep LS at bay.  CMO works as long as you use it. 

Hang in there, read all the material you can find on LS on this site.  Tred carefully, use gentle methods that will do no further harm. 

Hanny.

        

 

Hi Shauna,

when was your LS a confirmed diagnosis?  I have read that the chances of reversing the course of this disease is much more likely in a young person such as yourself.  If you have any anxiety issues, this can make things worse and addressing this via Mindfulness Training or some other suitable counselling therapy might help.  We all have other issues in life which impact on our health and your best course is to address this, whilst trusting that the communication between your doctor/consultant is good.  If you don't feel you can ask questions or don't understand the answers, that can make life difficult and tbh not every GP understands this condition - find one who does if this is a problem.  

Keep asking questions on this forum and there will be a whole range of answers and certainly a lot of support.  Keep yourslef (or get) fit and if there is any weight problem, I would try and deal with that via a group who will be supportive.  Eat sensibly.

All the very best - keep seeing the medics who communicate properly and they will keep an eye on you regarding precancerous stuff. The truth is that it is a RARE occurence, but one worth monitoring by professionals so you don't have to worry.  Anxiety and the bad diet due to comfort eating, lack of excercise, lack of social contact and someone to talk to about this are our worst enemies.

All the very best, much love

Margaret

Hello Shauna, you will have seen how supportive this site is to fellow "LS ers" Not one so far has mentioned cancer being diagnosed. It is rare to happen - but it is said 4% may have changes that can lead to a malignancy hence the need to see what your normal anatony  looks like and take any changes seriously. However it is wise to use the steroid creams to prevent the scarring from getting worse, NOT to worry, as that causes more damage to the body. Many on this site have had the condition for years  without malignant changes occurring. There is a therapy that uses stem cells that appears to have good results, you are young enough to sound out your gynaecologist  to see whether they would suggest this option for you on the NHS. Why not check it out on the web and see whether you have a good case to put forward to the medic? Take care and worry not- the chances are it will never happen

Good luck Sue

Hi Shauna

I have been diagnosed for about 4 years now and things are pretty much under control.  I go to for yearly check-up with a gynacological oncologist and so far so good - he says that nearly all of the cancer which arises from LS occurs in people who have very long-standing untreated and very damaged skin and that the changes seemed to be triggered by the constant tearing and opening again found in these cases. He says its very rare in cases which are undergoing treatment.

Hope that puts your mind at rest a bit.

My consultant told me that it can happen but i sure they will keep a close eye on you and check for any changes

Hi Shauna, I hope these replies are helping you. Margaret is so right. I've had LS since I was a colicky infant and wasn't diagnosed till age 61. I've also had psoriasis, which my gynae confirms is 'related'. I recall seeing a dermatologist when my hands were like pine cones, age 24. She asked me how my marriage was and I was insulted. Unfortunately, she had hit the nail on the head, but I didn't begin to manage my anger for another twenty years. But, your generation is much more self-aware, as I know from my two grown kids.

Regarding cancer, as long as we go for our twice-yearly checkups, we're unlikely to even develop VIN without it being caught. That's what happens before squamous cell carcinoma. You're in good hands, so don't waste stress on cancer. If you look at any diet suggestions online that have to do with leaky gut, and in moderation try to keep that in mind, you should be able to turn it around and have many years of good sex and babies if you want.

I spent many years in a bad marriage, drinking too much and eating too much sugar and chocolate. I believe that's why I have the scarring and and fusing I have. But I stay calm and eat healthy, so I feel it's within my power to prevent much future damage.

Hi Shauna,

Ls is scary for us all but we all have to learn to live with it.  Go for the checkups you are offered so that you can be checked on a regular basis.  Use the treatment you are offered.  Treat with Dermovate as prescribed whenever you feel sore or dry.  Use plenty of hydramol or Epaderm or whatever you are prescribed and keep very clean to keep things healthy as poss.  As time goes on you will relax and feel less scared.  Just don't frighten yourself more.  If you see any frightening images, as I am sure you will look for them, just remember this, they are the ones who didn't have treatment early on as you have.  You will be preventing those occurances.  I have had this years and I manage it very well now.  I wish I had known when I was much younger.  I think I had this as a very young woman. I have damage that I am sure would not have occurred had I treated this sooner.  Cancer is very rare indeed but you are checked frequently in case.  Instead of feeling unlucky to have this something you cannot change, try feeling lucky that you have discovered it so young and you can hopefully prevent the developement of cancer.  Have your glass half full.  Good luck.

Shauna, Sorry to hear about your diagnosis yes initially it is overwhelmingly so frightening. I hope you close friends or relatives that you can get support and loving kindness from.

like you I was freaked out when a biopsy confirmed I had LS. Try to relax even though in the face of this diagnosis it is hard to do. I'm only saying this because  I'm much older and have suspected something was wrong for many years. At first I was told I had sensitive skin and then contact dermatitis. My first itchy flair up started when I

was 53. I went to  a Gyn who told me it was post menopausal dry skin. She prescribed Premarin for vaginal dryness and olive oil for the outside.  Two years later a different Gyn examined me  and  told me that wasn't post menopausal dryness. She prescribed clobetasol for 14 and a follow up visit. At the follow up visit she told me everything looks great just use the clobetasol as needed when you  get the itching. Obviously, her treatment instructions were wrong. Three months is the usual treatment with slowly lower the dosage and with monthly doctor follow up visits to see how you are doing. Two years later I had a flair up.  I believe it  happened because the enormous amount of stress I was experiencing at work and  caring for my  elderly parents. I was finally diagnosed after I pushed a dermatologist for a biopsy. The doctors, my Gyn and dermatologist had to learn to agree on what was the best treatment for me. When the diagnosis of LS finally sunk in,  I became depressed and extremely anxious. I stopped eating because the anxiety was so overwhelming that I would gag at the thought of food.  I cried and wailed like wounded animal (why me?) then I quickly garnered all my closes friends for support.  I read all the chats support groups and I found a website that help me calm down and not go down that dark "Cancer" road. "The  Radiant Life Design," it does not specifically address LS but addresses Vulvodynia and Chronic Pelvic Pain. What  I found useful from this website was  that she addresses ways to manage the pain and accept what your experiencing in positive and supportive way.  Yes...you are  young but this can be managed. I've gotten wonderful support from this site. Read all you can about it. Some stuff out there  is very negative and not helpful.  I am glad you found this site because  most of women and men seem very supportive and have a good attitude about managing LS.  You're not alone!! My thoughts  are with you .