34, just been diagnosed with LS, looking for reassurance

You are in the right place now. You will get lots of support and some helpful tips. Don't panic you can keep this under control, you may have flare ups but if you read these posts you will get lots of advice. Do follow your Drs advice and when you have worked through the treatment you then might like to try one or two of the suggestions such as coconut oil and baking soda rinses.

Good luck but try not to worry, many people find that stress makes things worse.

Hi Bonnie.  I am not as young As you.....I am 52.  I was diagnosed last month and been using clobetasol for a month 2x/day.  I did the same thing and googled as well and it’s pretty scary on what I read and saw.  The first week I cried and felt sorry for myself but it did get better.  Of course I still worry but not as much.  My LS symptoms were not too bad.  Had some rawness and itching, but went away with steroid within the first week.  Get the odd  prickly feeing now.  I just had my one month check up and the gynae said it was responding very well to the steroids and has dropped my usage to 5 days only and 2days nothing. If all goes well in the next 2months I will drop again.I was so concerned about the labia fusing and disappearing.  I think my labia has shrunk a bit but is still very much normal looking.  I make sure I have sitz baths every day and bathe in Epsom salts in the tub once or twice a week.  I also use lots of virgin coconut oil and emu oil as a moisturizer.  Keep things moisturized, it’s important to keep it soft and supple.  I have also changed my diet somewhat.  Cut out sugar in my coffee, try to eat less bread, pasta, rice (starches) and cut out sweets.  I also am building up my immune system by taking a good multi vitamin, immune boosting supplement, liver rescue supplements (they say liver has lots to do with this disease) and I take a good pre and probiotic.  Hopefully these have helped cause I feel pretty normal.  Do as much research as possible to understand what’s going on, as drs don’t always know.  Join the LS Facebook group, it has helped me tremendously.  

Take Time for yourself when you are upset and realize you are not alone even though it is scary.  Enjoy the days and your kids.  Stress supposedly is a big factor that can cause flares.

I hope this has helped you somewhat to ease your mind.  Keep strong.  Let me know how you are doing with all of it.

joanne, canada

 

Hi there, don't panic, it's really not that bad, although it seems like it when you first get your diagnosis.  Your Doc is right and wrong in that the internet can be helpful (like this site) but it can frighten you with horrible pics of LS. 

The steroid cream should get rid of the white plaques of skin which I'm guessing you have.  The steroid cream is good to use on and in the vagina but for cuts/bruises/rashes around the vagina its best to try something less strong, like Desitin baby cream.  After using the bathroom many of us spray our Vjay with a little water mixed with salt/bicarb of soda to ensure that there is no urine left there to cause itching or irritation.  Its also important to use an oil like coconut oil/emu oil, any oil that you are comfortable with before bed as that will stop any fusing occurring. 

Many women find going gluten-free lessen their symptoms, but we are all different.  Sugar though is definitely a trigger without question and so you will need to be careful with that.

Once you get your LS under control from the cream you might like to look at alternatives.  Many women swear by using Borax.  Go to the seach at the top and look for 'experiment with Borax' it's a long thread so you might want to make some notes.

You can ask anything on here, nothing is too much info.  

Hi Bonnie I was diagnosed with LS at 30 but I'd had it for years before it was finally recognised. It can be terrifying, there are so many horror stories online. I'm 43 now and I have to say that it's not stopped me doing whatever I want to do. I horseride a couple of times a week, I wear skinny jeans and have a lovely active sex life! It has taken a bit of trial and error to get the LS under control but it can be done. I use dermovate ointment twice a day for two weeks if I feel a flare up coming as instructed by my gynaecologist but other than that I don't use the steroid. I wash with Dermovate which I get on prescription and use Surcare washing liquid for my clothes. Keep anything perfumed well away from your bits! A good bland moisturiser is essential. Everyone has their favourite but I use Paladin. Bamboo underwear is a godsend as it let's your skin breath and I don't wear any synthetic fibres on my lower half. Cotton or bamboo all the way! Its not the best thing to be diagnosed with but LS certainly doesn't have to be the end of the world. I hope this helps a bit.

Hello Bonnie, I was diagnosed a couple of weeks ago. I am 57. The internet can be a blessing and a curse. A blessing, because it helped me to find this very supportive group. But before I found this forum, I saw all kinds of crazy things on the internet. Also, I am an African American, so the white spots that others have, I don't. However, my genital area has lost it's color. Think of Michael Jackson and how his skin was once dark, but changed over time. I don't have severe itching or any tearing, right now, but use the Clob as prescribed as well as coconut oil or Emu oil for a moisturizer. I..was...devastated when I was first diagnosed, but I do have a great support system, in my siblings; at least those whom I have told. I am also seeing a counselor, as well. I constantly pray for acceptance of my condition abd the will tobcontinue to take care of me. Good luck to you and God Bless.

Angela from the U.S.

correction, Bonnie. Diagnosed almost over a month ago. I guess I'm losing track of time

Thank you all for your replies. Did any of you find lumps just in your vagina when you were applying the cream? That’s just happened to me this afternoon. They are super painful, quite red. I’m now even more freaked out, I’ve clearly upset something as they’ve been uncomfortable for 2 hours since I found them. 

The big ‘C’ word is all that i can think about now :’-(

Dear Bonnie,

Try not to worry too much...it won't make it better.  Use the steroid cream as prescribed.  And I also recommend using the Borax solution as a spray after shower.  See the threads on this, it has helped many of us.  Some use a moisturizer cream, there is info on that too.  Some stay away from sugar.  I personally don't think that makes a difference in my situation anyway.  Good luck to you and let us know how you're doing.

I think I started with LS in anal area as a teenager. 

Then prob on labia majora in my 30's. Diagnosed about 3 years ago after a VERY bad flareup with itching that was just so extreme. 

 I find the condition irritating but relatively easy to manage. I sometimes get weary of the care. (Moisturizing with emuaid, emu oil, Jojoba oil, olive oil etc.   Being diligent with cleanliness.. rinsing after sweating etc. Steroids have helped me a lot. 

Initially I freaked out and was a mess.  I googled... huge mistake!  Someone told me those pictures are of neglected cases of old women. I don't look like that down there. My white patches have turned to a healthy pink. 

Apparently my anal area does have the crinkled parchment paper look ??   I've had it there for years and years off and on. I'm now 47 and I've learned to live with it. We can usually have sex without too much trouble. Sometimes my clitoris is sensitive and irritated and we need to do adjustments. Steroid often settles that after a few days. 

Read the threads on borax. I bath in borax regularly. 

This forum has a wealth of info and has made a HUGE difference in the management of my LS.  

Read through the threads. I learned far more on here than from my gyno.