New to LS - start here

Hi Janet, I hope I can hep you relax a bit, since stress/anxiety is a huge factor in LS. Looking at those horror photos is unnecessarily upsetting. LS comes in levels and versions – most of the scariest photos are of the most aggressive kind when it's been negelcted forever. Unlike most of those patients, you've got your diagnosis and meds. Now your job is to learn all you can about what you can do to make the treatment more effective. It's all here on this site. Do watch Dr. Goldstein's presentation (maybe with your husband) so you're well-informed. The link to it is at the top of this discussion.

I assume your Dr. is a gynaecologist or a dermatologist. Some GPs prescribe cream that's too mild. 30 g. in two weeks doesn't sound like Clobetasol or any of the other 'ultra-potent' topical steroids. My 50 g. tube lasts a whole year. Do NOT slather lots on. More is not better. You'll understand more after you spend the hour to watch the presentation. The meds work very slowly over months. They're forever. I had a flareup and a bit of fusing around menopause, but I had a fine sex life till my next bad flare at 61. I was celibate for seven years of that, which might have helped me last longer. The friction and fluids of sex are irritating to flared-up vulva.

Your other question – will it spread. It shouldn't if you take good care of your undercarriage, lower your sugar intake and manage your emotions maybe with some kind of mindfulness practice.

This discussion is for our histories, so please introduce yourself into some of the discussions below this. We are all excellent support to one another and we've really been discovering a lot of things that help – more quickly than the steroid ointment, but certainly not instead of it.

Glad you came her and I hope you'll be feeling better mentally and physically real soon.

Thanks that info helps a lot. I still need time to come to terms with this.    didnt realise was stress related as well.  We are trying to move house and it fell through recently so very stressed at the moment. Need a massage! ;

There you go, proof. Massage sounds like a great plan.

I POSTED MY STORY EARLIER ON THIS SITE. I AM ALSO LOOKING FOR ANSWERS.. SCARED TO DEATH 

Jane, read the post "an experiment with Borax" on this site! Stress makes LS worse and there is much help, device and successful testimony will bless you and encourage you!. My itching, burning, pain and stinging left when I started with the Borax! God bless you

Jane, I am 25 years old. I recently have obtained a diagnosis of LS after 10 or so years of dealing with this incredibly exhausting condition. Here is my story and why you should seek out help.

I only ever talked to my mom and, since being together, my husband about the problem. In middle school I began having fissures up my butt crack -12-13 years old. Went to my family physician about it (after months of crying to myself and later mom) and he told me to take stool softener that it looked like maybe I didn't have enough fiber in my diet. I have always been healthy: plenty of exercise, good diet most of the time (live in the south so fried comfort foods call my name on rainy days).

Eventually, what I had then spread to my vagina - in and around it. What I was experiencing was completely embarrasssing to me. Incessant itching(particularly at night), my skin was purplish, tears in and around vagina, scaly skin. I couldn't exercise without it becoming inflamed because I would sweat and OMG I thought I would just die. I couldn't have intercourse without pain during/afterwards-became damaging to my marriage. Washing with any kind of soap would hurt. Peeing when there was any kind of crack would be intolerable.

It all became progressively worse within the past year. I began to spend hours upon hours of research on the internet looking for home remedies. I tried tea tree oil and I'm not a professional at these things so I ended up burning my skin, which you can imagine was even more painful than what I was dealing with already. I used sensitive skin lotion before bed which helped the symptoms for maybe a week. I slept with socks on my hands. I tried vagisal cream, Monistat cream, summers eve wipes. All of which only subdued the symptoms.

Finally, when seeing the nurse practitioner for something completely different, I laid all of my issues out on the table. I had never seen this lady before in my life so that probably helped me out a little psychologically. I knew I could do it alone anymore. I couldn't stay up on the bed researching or calling my mom to tell her that I think I had LS once a month every month and then do nothing about it because of embarrassment. I hung up my pride and told her and I am so glad that I did. It was not easy-I cried and later after I received the referral to a gynecologist, I cried to him about it and told him what inthough it was. This was in October.

I was inspected and he said it wasn't as bad as he thought it was going to be-which really didn't make me feel any better. He said he definitely thought it was Lichen Sclerosis and gave me Clobetasol to put on twice a day for two weeks. I put it on that night and the next day I swear I could tell a difference. It's now mid December and I went for a check up in mid November. The gynecologist said that I still had a little bit of irritation and would need to continue 2 more weeks and then I would only need to use the cream occasionally. It was at that moment when I learned that lichen sclerosis is only supposed to be a flare up! 😱 I had been suffering for months straight for several years!!! Why hadn't I gone to the doctor sooner?

No more itching, no more purple scaly skin, no more tears, no more pain and even better than the extinction of all of this is that I no longer have worry or feel ashamed about myself. This past year was awful and the other 9 years or so have been so difficult and I could really kick myself for waiting so long to try and get some specialized medical help. It was so easy to do. That being said, please don't be ashamed or afraid; get the medical help you need and deserve- it will bring you so much peace.

Hi Gnote,

Yeast and LS often seem to go hand-in-hand. If you have visible bits of white yeast, then you do need to do the treatment. Use the gentler version, the 6 day tube of cream rather than the one-day suppository 'bomb', which is way too harsh for us. It seems to me in my case that the sore red skin of a yeast infection triggers a flareup of LS and any friction starts the yeast up. If you haven't already cut way back on your sugar intake, it would be good to try. It helped me in a matter of days. The red area around my anus calmed right down within days of stopping coffee and most sugar. LS can be red and burning much like yeast, so you need to see at least bits of white goo before you decide. 

The steroid ointment takes months to work and it's a long-tern treatment. But in this forum you'll hear about plenty of supplementary things we can do to improve or situations.

Glad you found us. This discussion was originally pinned to the top by our moderator as a place to write our histories and a place for links to good info for the newly diagnosed. The rest of the discussions below this one ("New to LS – Start here" ), are in descending order of most recent activity. You'll find everyone very helpful, supportive and full of experiences and tips.

Thanks for the feedback. It's no wonder my doctor saw the LS when I went in for the yeast infection. I looked at myself closer today and saw the discoloration of white. I'm pretty sure my discomfort right now is the LS. But I do want to see my gyn soon. I'm getting paranoid of skin fusing together. I was reading about a woman with a severe case. I sure hope mine doesn't get that bad. I'm 45. I think that is somewhat younger than expected. Although you sure started young. I guess there could be worse conditions we could have. 

If you're 45 it's quite usual, actually. Most women get LS in association with menopause. If you use a magnifying mirror every day, you should be able to stay on top of the fusing. A couple of members here have had it happen incredibly fast. The horribly classic thing that happened to me at age 60 was the quick final bit of fusing of the two inner labia over my clitoris, leaving a tiny opening for bacteria to enter, which caused a huge painful cyst. But that was what got me to the gynae who finally saw my LS for what it was. Now I'm doing finger stretches of my hardening introitus in the warm baths before my twice a week applications of Dermovate. I feel I'm preventing the kind of atrophy that leads to not being able to pee. The meds don't absolutely prevent disfiguration (except in younger women who are diagnosed promptly), but they do prevent sores and lesions, tears – those are conditions we want to avoid so cancer doesn't sneak up on us.

I am seeing my gynecologist in a couple days. I'll ask more questions about keeping this under control. I'm confused about how often to apply the ointment. I also seem to be getting very sensitive to soap. I get so itchy after taking a shower. I didn't use the soap down there tonight and felt better but some itch.   

That at really scares me to hear that fusing can happen so fast. I assume when I get a tearing-type sensation that I may have experienced somos form of fusing.

Hi Gnote.  If I used soap I was forever itchy and uncomfortable.  I now use acqouse cream and that seems to help

Regards shazmill

Shazmill's so right, Gnote. Soap is no good for us. I went undiagnosed for decades and used to suds up daily, thinking 'cleanliness' would help. These days I put a basin in the bath tub and a tablespoon of baking soda in warm water. I crouch over it and have a good bidet before bed. Much better than splashing at the sink over a bath mat.