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Newly diagnosed with LS- any info appreciated!

Posted , 10 users are following.

karen23320
karen23320

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. 

1 like, 26 replies

26 Replies

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  • ellen61061
    ellen61061 karen23320

    Posted

    Listen to me. Sit bath every other day with Cetaphil. Cotton panties. No panties at night. Order v-magic until it arrives use pure vitamin E ( puncture a capsule) after every pee. Sqirt a water bottle during pee. This should hold you over comfortably.

    • karen23320
      karen23320 ellen61061

      Posted

      Thank you Ellen! I had bought seamless panties, but wrong material, some kind of strtchy synthetic! Went back to my white cotton granny pants even though they hv that annoying seam right across my clit! Stupid thing must have been designed by a man! Will try Vitamin E, thx! 
    • ellen61061
      ellen61061

      Posted

      Hanes has an all cotton bikini with no seam. Fyi
    • karen23320
      karen23320 ellen61061

      Posted

      Thank you Ellen! Why that seam  is right THERE, I will never understand! Looking on Amazon gir Hanes no seams cotton panties right now! 😁

  • alistar
    alistar karen23320

    Posted

    Oh my goodness Karen, I am so sorry you've had to go through all that! And as I'm sure you've read, stress doens't help LS sad It's probably the one trigger everyone experiences. You're definitely doing some of the right things, using fragrance free products, get some soft cotton panties, moisturize big time, all of people get triggered by sugar/alcohol, some have an underlying thyroid issue. I started a thread 2 years ago titled An Experiment with Borax and have had tremendous success, as have so many others. Go and have a read, but I would suggest waiting until things have calmed in the area before trying the treatment. Regardless, read as much as you can on this site, I feel like this is where you'll find some solid information as you're reading the experiences of hundreds of women/men that are suffering and coping with this awful disease.

    • karen23320
      karen23320 alistar

      Posted

      Thank you! It helps to know I am not suffering alone and I appreciate all of the advice! 
  • flower2power
    flower2power karen23320

    Posted

    Hi Karen

    I feel your pain as does everyone on this site.  You are not alone!  I wish I found this community initially but it took me 3 years.

    First - find a different doctor!!! Or get the office to get in touch with the doc and get a prescription ASAP!!!

    Your condition is very very serious!!!!  You should have a prescription for Clobatasol yesterday!   I know this first hand - I wasn't using the clobatasol, was under a crazy amount of stress, and my LS got so bad.  I finally got to the specialist and he said "I wish you found me sooner". I had biopsies taken - and the results were "fortunately" pre-cancer.  Two weeks ago I had a partial (about 50%)  laser vulvectomy.  Talk about a mind f#*k.  And do not look up vulva cancer or look at the photos on line because it will not help.  If you can find a vulva specialist that would be very helpful.. and depending on your biopsy you may need to.  A lot of basic gyno's don't know much about LS.  that was the problem I had - one doc diagnosed it, then I moved and the next doc didn't know much about it but renewed my prescription.  Then I moved again to near a big city and was able to find a specialist.  I had a serious flare up kinda like yours and it took another month to get into the vulva specialist.  A month is a LOOOOOONG time when dealing with something so serious and painful.

    Origin - there's info out there that say it could be genetic.  My mom has vitiligo and it has been related to that.  another post on this site mentioned a connection to sexual abuse - which would fit me also.  The metaphysical is very real to me.  I did see a medical intuitive to help clear past abuse, curses, and other stuff.  Kinda wuwu, but at this point I'm up to trying just about anything.  I've definitely looked deep into my own stuff and realized I've got to love myself and my vulva and take care of me.  It's actually been a very therapeutic empowering process.

    Peeing-  Have a little spray bottle with a mix of saline solution, baking soda, hydrogen peroxide next to the toilet and  after you pee spray yourself.

    Steroid Clobatasol - $80 for a little tube and worth it.  It is the only thing that will definitely keep the LS in check.  I made the mistake of not using it regularly.  According to my vulva specialist it has to be used at the very least 1x per week.  I agree with one of the replies here - at this point given your flare up 2x per day for awhile then you can reduce.  Supposedly when the steroid ointment is used in the vulva area it doesn't have the same side affects as other areas.

    Shower 2x a day - yes!  A very gentle creamy natural cleanser works best for me.  some cleansers will burn to tears. 

    Sitz bath - yes.  epson salt, baking soda mix

    I've used a frozen gel pack for relief from the heat.

    Laundry - be conscious about what you use for detergent - borax, and a sensitive skin detergent.  Do NOT use dryer cloths - they have fiberglass in them.

    Skirts and no panties helps A LOT.

    My specialist told me those sores that your doc thought were herpes are a sort of vaginal canker sore - like the ones you get in your mouth if you eat too much acid.  Those things hurt sooooooooooo bad!  My guess is that the LS gives those vaginal canker sores an opportunity to exist.  I'll be thinking about it though to see if there're relation to something I've eaten or stress or something I wear or...  ???   

    I don't think I'll ever ride a bike again.  That's how this flare up started.  Sex does not help and can hurt and even make it worse.

    Food - from my research here on this site - Sugar is the worse, then dairy.  

    Topicals - emu oil, aquaphor, and coconut oil have been mentioned mostly but only as a relief.

    After my intense flare up I followed the 2x a day with clobatasol, post the morning and night time showers. I have a magnifying mirror I'd check myself out in each time. I sprayed with my mix after peeing, did a sit bath a couple times a week - I would have done more but I don't have a tub and I got a kiddie pool from Target and sat in that.  smile. I don't eat candy, or drink wine or alcohol.  I eat very paleo-ish - no carbs because carbs are sugar.  

    Sunshine - so this may seem kinda too hippy for some - but I sun my flower!  yup - sit outside with my coffee and take 15 minutes to let the sunshine in.  I think it helps.  Along the lines of red light therapy.  

    My next step is to try hormone therapy, appointment on July 5.  Perhaps an imbalance is part of the issue.  

    O-shot:  I decided against the O-shot - which is using your own plasma, spun, and then shot back into your vulva.  I can see how it could work given the growing use of this treatment on other body parts, including face.  But my research on the O-shot specifically shed some weird light on the inventor that I don't feel good about.  Though I will be looking into other options in the plasma world.

    As for my vulvectomy - my flower is healing well.  Dr appointment next week.  Sure it wasn't fun, but at least it was just laser surgery and not more.  I'm not sure if the LS will flare up in the burned off areas.  My poor little clitoris - but at least I still have one!  

    It's gonna take diligent effort holistically to get through this.  And yes, it's a bummer - but you have to take care of yourself now big time!!!!  Don't worry about down the road just take it day by day.  Continue to check in with this group to see if you can find some good advice that resonates with your style. But don't over do it - it can be just too much.  Reduce your stress, and live your life.  This isn't who you are,  it's just an opportunity to take care of you!  You are on a healing path for most likely more than just the physical.  in good health!

    • karen23320
      karen23320 flower2power

      Posted

      Wow! Thank you for all of that good information! I read several medical journal articles about the use of Platelet Plasma Rich injections and the use of  Focused Ultrasound, all sounds so hit  or miss! So you teally think I should call my Dr  office and demand a script for Clobatasol? I was trying to heal it homeopathically with the Emumaid and moisture barrier ( Vit A, D , E) cream. I am 2000 miles away from home, on vacation ( non- refundable plane tix) and will be gone a month. I am teying to use this time to relax, de- stress and focus on me! Got the cotton panties, and hv been wearing alot of skirts, dresses.  I drink very dry red wines ( my only crutch on vacation, and only two glasses- not everyday) , but hv given up carbs, sugar and eating low- oxylate foods to see if it helps?  I so appreciate everyone taking their time to share their experiences and knowledge!  And I am outside soaking up the sunshine and practicing meditation/ relaxation to lower my stress while here. 

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