Newly diagnosed with LS- any info appreciated!

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i All- I am newly diagnosed with LS a week ago and have been voraciously reading everything I can on it. My doctor is away for the next 6 weeks and left  ( nurse called to tell me diagnosis over the phone! ) with no prescription, no treatment discussion and I feel like I am on my own to handle this! It is so nice to know that I am not alone! I am 47 yrs. old, still get my period every 28 days and everything was fine up until 3 months ago.  I have had a lot pain after urination, skin very irritated- chalked it up to the middle- aged “ squirts” we women get after three kids and lifting heavy things, excess coughing or sneezing and just thought it was something I had to “ put up with”.  My clitoris has been hyper- sensitive, swollen and irritated, so  I bought panties with no seams because they touched in just the wrong place. After we had sex in late March ( no pain during except in clitoris during oral- sorry for being so descriptive), I had terrible burning pain for the next two weeks, coupled with my period, everything just felt raw.  After a few weeks it seemed to calm down and after mentioning to my husband that I was a lttle dry, and needed more forplay, we had sex again. No pain during, but I could not come and had terrible burning and pain again for weeks afterward. Made appt. with Gyno and she said it looked like Herpes and asked if hubby had a cold during oral sex?  Her cotton tipped swabs hurt like hell! Tested for everything including Herpes, Syphilis, etc. all negative. I’m not in the habit of looking “ down there”- raised strict Catholic, husband my only partner, I had to see “ what was going on down there”. Used a hand mirror and saw that interior Vulva was all white, several ulcerated “ lesions”, clitoris was swollen 2-3 times its size and looked split, bump down near vaginal opening, lesion on perenium- what a mess! Thought maybe I was allergic to scented tampons, so I bought organic corton tampons and panty liners. Seemed to calm down a bit and I was feeling hopeful. Got period again and was so inflamed and dry I couldn’t use the tampons! Burned like gasoline when I peed and pain made me want to throw up! Went back to Gyno for a follow up and she said it was worse than before! Might be vulvular cancer- Scheduled biopsy for  the NEXT DAY- now I’m freaking out! Took 6 biopsy samples, vulva like swiss cheese, so painful! Results came back 6 days later and I’ve been on my own since. Nothing from my Dr. So you guys are my source of info! I ordered emuaid cream after reading about it and it has helped with itching and pain, also statted on a low oxylate doet that is supposed to help. I noticed the pain was worse after wheat bread, peanut butter, lemonade, etc. I have been using a moisture barrier control ( soothe and cool) after every trip to the bathroom and that seems to help. Still in terrible pain in clitoral area. Am worried about all the  things I have read about  steroid creams thinning the skin so much and leading to more tears, etc. Your thoughts? Also ordered another homeopathic cream from Perrins, I ‘m desperate and will try anything! Next Dr.  appt July 24!!! Is my sex life gone for good? Any thoughts/ info/ comments appreciated. 

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  • Posted

    Hi Karen,  So sorry for all you are going through.  This is a great site and am so glad to know I'm not alone, but we are alone as far as determining what course of action to take.  Everyone seems to be trying a lot of the advice on this forum and seeing what works best for them. Great advice though. Doctors really don't know what to do with this strange skin condition.  I'm using castor oil to stay moist, but I still get horrid itches and then resort to Clobestol sparingly.  I'm also trying acupuncture (my last session tomrrow) and taking some herbal pills.  I'm not seeing any real improvement, but I'm trying everything humanly possible. I'm  72 and think I lost my boyfriend last year because sex was pretty much impossible. I hope your husband continues to be patient.  Right now my landscape down there is not looking good, scarring and white patches.  I'm at a loss right know as to what to try next. But we do have to pay attention because things can change rapidly. This is not catching but can be hereditary.  Good luck!

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    • Posted

      I have two daughters, 19 and 22 and they hv never seen me like this- in so much pain! I hope for their sake it is NOT hereditary. Husband and I have been together since I was 16, dated 6 years, been married 25, only sexual partner and I don’t want our sex life to end! I just hv to get this under control, good luck to you as we navigate this path. 
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    • Posted

      Thanks Karen,  Congratulations on your long marriage.  I hope you don't alarm your girls now.  i am not going to say anything to my son.  I pray he doesn't get it. He inherited asthma from me.  Ugh.

      Had acupuncture today.  Just don't know if it is helping.  I'll continue with the herbs and try other suggestions found here.  GOod luck to you.  Chat soon.

       

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    • Posted

      Hi Susan- In this day and age they are more savvy with technology than I am. I tried to give them as little info as possible, but they went on the Internet and researched it all themselves. My 19 yr old is the one who read about it being hereditary! I told them I am trying everything I can and mot to worry.  I do want to mention that tge homeopathic Emuaid Max cream I got in the mail has taken care of 95% of the itching and burning and I have peed pain free for two days now! I am applying it 2-3 times a day and am using a vitamin based moisture barrier everytime I use the bathroom.  I hv also cut out wheat, sugar, Red wine ☹️, and foods high in oxalates. I hope the acupuncture treatment  helped you today. 
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  • Posted

    Hi Karen

    The best advice I can offer is to start taking vitamin D3 I take one tablet a day and that seems to help a lot with keeping the itchiness down. Also try taking a baking soda bath. Use about a fourth cup of baking soda in warm water making sure that the baking soda is dissolved before getting in and sitting it there for about 15 to 30 minutes, if you can move the water around so that you affected area gets saturated by it. When you get out pat the area dry don't rub it. And make sure that you get all the access water. I found that with me if I leave it damp I feel like there is more friction and it causes more of that burning.

    I hope this helps!!!

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    • Posted

      Thank you for your advice! I hv found some relief with the baking soda bath- of course the article says 15 min 3-4 x a day, I work 4 jobs, who can bathe 4 x a day! I will continue taking my Vitamin D3- started supplements since taking Nexium for Reflux weakens your bones. If it helps the itch I will surely continue! Thanks! 
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    • Posted

      I use the kind of baking soda that is used for baking not the laundry detergent. I don't know if it is as effective as borax or not. I have not tried that.

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    • Posted

      I kinda figured the baking soda one for baking.  Haven't tried it yet.  Borax I'm concerned about even though some are getting relief.

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  • Posted

    I feel your pain it sounds like the same symptoms I have had. Why not call the Dr office. She probably has a partner or someone to cover for her. They can prescribe a steroid cream to make you feel so much better. (Expensive but worth it) You have been diagnosed and should not have to live with this pain. Med is called Clob on this forum. 
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    • Posted

      Hi Martha- Stubborn me had to leave on my vacation right after diagnosis ( non - refundable plane tix), so I am no where near my Dr. Office. I am wary of the steroid creams as many people hv posted that it thins their skin ( discolor I cpuld care less about) and it tears more easily. The Eumaid homeopathic has been helping ( DAY 5) and I’m hoping to continue this route. Has  anyone tried the homeopathic creams with success ( Eumaid and Perrins?)
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    • Posted

      Hi Karen, I've had LS for more than 20 years. I have tried everything, I have Clob, but rarely use it. I had a major flare up recently, I'm still recovering, my skin was bruised purple, and cracked with white patches, crazy itchy, I was a mess. I'm having luck with Emuaidmax, I've been using it regularly, and just ordered the regular Emuaid, their Customer Service said I'd be better off with their regular version, so I ordered that. I also have been using Perrins, creme complete. I have the other two brands, but like the creme complete. I get best results switching then out, I us Emuaid for several days, then switch to Perrins.. I just started using Borax yesterday, I've been reading a lot in this forum about Borax, and many have had great results so I ordered some on Amazon. I just started, mixture with water and put it on morning/night with saturated cotton ball. I'm hoping to remove some fusing I'm experiencing.

      I hope you get some relief it's not easy. I'm just grateful it's Summer and I can wear dresses without underwear. Pants are bugging me right now... I with you the best of luck with this, hopefully you'll get relief soon!!

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    • Posted

      Tracey, thanks so much for replying! I hv been using the Eummax for 7 days and itching is at a 2, pain is at a 1. I too ordeted the Perrins but haven’t tried it yet. I am going to order Eumaid regular as well as the maxx seems really strong and I have started healing. I also ordered alm natural organic cotton pantyliners and Seventh Generation Free and Clear drywr sheets- paper baded, no fiberglass. Considering 11 days ago itching was a 10 and pain was a 12, I am pretty happy with the results so far. I would like to avpid clob if I can considering all the negative side effects I hv read about. Thanks for being there! 😁

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  • Posted

    Hi Karen, Reading stuff posted by women with LS on this site should help you if you go look at some of the many old threads.

    Right now though you need the steroid cream to enable you to get some relief, I am surprised that you were not given any as it sounds like your in a horrible flare up.  The steroid cream is really the only thing that will help restore your clitoris back to how it was and you need it like yesterday!  Ring up and demand it. 

    Once you have it you will need to use it twice a day on your clit until you start to notice a lessening of symtpoms, then use it once a day, then alternate days and so on.  I'm guessing after about a month you should be a lot better and you then can make the decision on whether to use the steroid cream weekly for maintenace...not everyone does that, its a personal choice.  The white plaques should hopefully disapear as well.  The steroid cream is the thing to use for problems with the clitoris and the white plaques of skin.

    For the lesions/cuts/sores you describe I would use a different cream, like a babycream, like Desition, as I have found the steroid cream to be too strong for them.  It is important to bathe twice a day while you have all this going on and then dry yourself using a hair dryer on a cold setting before apply the two different creams.  Try not to wear tight pants/clothes for a while.

    Having sex while you are in such discomfort will only make things much worse, and so its best avoided.  Try to get hold of a Sitz bath as that makes things easier.

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    • Posted

      Hi Guppy! Thx for your reply. With regard to these sterpid cream wveryone is talking about- do you wear something on your finger to protect the skin on it? They say to only put it on the sores, not healthy skin- I hv been doing it by feel, not really looking at that mess. At this point I only have the Eumaid and a Moisture Barrier Control to use- good news is I went a full day with little to no pain upon peeing! Any thoughts on the low- oxylate diet? And avoiding sugar? Did you try these, did they help? 
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    • Posted

      Hi Karen, you only need to wash your hands after using the cream but it is worth using a hand mirror to apply the cream otherwise you end up with it everywhere. 

      just read that you're on holiday and drinking red wine.  I feel horrible saying this especially as you are on vacation but I think you need to stop the red wine for a few days. Red wine is like poison for me, it contains sulfites, salicylates and histamine. Now, I know I am probably an exception to the rule, being super sensitive (I have MCS with multiple food intolerances) but I know that many other women have reported on this site from having flare-ups after drinking wine.  Can you drink something else like vodka or gin as they are purer I think!!   

      Strange as it may seem the red wine could be aggravating everything.  Why not cut it out for a few days and see what happens.

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    • Posted

      Omg! I certainly will cut out the red wine! I thought it was okay since they are very dry reds and hv very little residual sugar. I am downing about a gallon water a day to make my pee less acidic, so will just rely on that for now.  Thanks for the heads- up! 
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