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Fusion split open

Posted , 8 users are following.

beth51904
beth51904

Good morning! My hood was fused. I used several ideas from this group - stretching and borax. It worked!! However I have split open to the point of a ..... how to word this correctly.... my inner skin is now popping out! Its very raw as u can imagine. I was hoping it would form new skin and heal. Its been 6 mos. still just as raw, red, swollen. I know for SURE the skin unfussed - which is so exciting and gives me a sense of relief. However, I just dont know what to do now. I have not been to the gyno. American drs keep telling me i have herpes (had a biopsy- no mention of herpes however LS was mentioned). I have suffered with LS as far back as I can remember, always itchy. I'm currently 48. When I was in my 20s I was prescribed a clob but never told "why" I have always used it since.Because the last maybe 10 years the LS has become much worse, I luckily stumbled upon this blog. I have treated myself using this site and plan to continue. My main problem is I've had two recent bacterial infections. I don't need this getting infected. The area I'm referring to smaller than a pea just above the clitoris hood, with raw redness that extends out. Anything and everything burns the area. Sometimes when it is 'calmer' i can use clob or just cocnut oil to keep the area moisturized and about once a week it itches like stir crazy! Probably why it hasn't healed because as we all know wentend to "give in" to the itchy craziness.

0 likes, 19 replies

19 Replies

  • deb09833
    deb09833 beth51904

    Posted

    You do need to find a gyno that can check what is going on isn't something else. 

    I have had great success with bicarbonate/water and Salt/water spritz. Also use paw paw ointment every night and vitamin e capsule every morning cut it and smear all around area. I really think mixing it up seems to be working. After many years on clobesestol I was able to stop about 12 months ago and very occasionally use diprosone. Good luck 😊

    • cheryl33619
      cheryl33619 deb09833

      Posted

      I think once you get started on the club it is hard to get away from it it makes you dependent it is a drug I think you are doing the right thing now with your vitamin E and your other alternative medication
  • pat48434
    pat48434 beth51904

    Posted

    I was instructed by my gyno at the first sign to use Clob only sparingly..I believe it is a steroid which thins the skin.  I was told only to use it every other day, (a dab,) for two weeks.  I then got into this blog and noticed women recomending borax.   Itried that and it has worked so well the gyno was amazed and said unfortunatly we, doctors don't learn everything.  This gyno is in Florida and one of the finest I have ever seen.  I'm 80 years old.  Another interesting point to add. I also had Lichen Planos in my mouth, had a bio by an MD Dentist.  Since I use a retainer so I don't grind my teeth at night I clean this by soaking each day in backing soda.  Guess what, no more LP either.  Ger yourself a GOOD gyno girl and you will be fine..Sorry you have had to go through all this for so long.  I just gor lucky with good doctors.

     

    • cynthia40883
      cynthia40883 pat48434

      Posted

      Hi Pat, when you soak your retainer, do you leave the baking soda residue on it when you put back in your mouth?Is it a light mixture?I also want to try Borax. Where is a good place to buy, and how strong do you make the solution? I live in SW Florida, and if your gyno is in.This area, can you share name. I also feel that the Clob is thinning. Never tried it. For anyone who has raw areas or burning, try spraying with bottled spring water, BEFORE and AFTER urination. Thx.
    • pat48434
      pat48434 cynthia40883

      Posted

      I live in the St. Petersburg area, a little too far for an appointment I guess.  When I soak my retainer in the morning I just put a little dime size dot of baking soda and let it sit all day in the cup that came with the retainer.  You could use a glass with a little more baking soda in it.  The amount really isn't an issue.  I used a spray bottle with borax.  You can buy it at the grocery store in the detergent section, I put some hot water into the bottle and and the tip of a spoon full (NO LUMPS), then I shake till it dessolves, doing this several times there are no lumps and till it is all dissolved.  It will last for a week and won't settle if   I have unfused everything but am using this again because after all this time I just recovered from diverticulousis, ugh!.  I don't want any more LP starting again.  While I was on this treatment I also used a vasoline type gel in a blue bottle of "healing ointment," you can get it in CVS or any drugstore.  Look for the healing ointment,I use it as a barrier.  Hope it is successful for you as it has been for me.  By the way I had bio's done in the mouth and in the vagee.  Hee hee.

    • cynthia40883
      cynthia40883 pat48434

      Posted

      Thx. PAT, Do you put the retainer in your mouth.with baking soda on.it or rinse it off before you put it in mouth? The specialist, dermatologist, I was seeing was close to Orlando. That was a long trip to make. Does the Borax burn at all? Thank you again!
    • pat48434
      pat48434 cynthia40883

      Posted

      Hi Cynthia,  My dental MD is even th hours further than Orlando.  Sorry.  I rinse off the backing soda  off before placing it in my mouth.  I also put a bit on my toothpaste when I brush my teeth, gives a nich fresh mouth.  Never had Borax burn, if it does yu could be using a little too much.   I spray every trip to the bathroom but have very little mixed with hot water only to help with ease of mixing.  I don't spray it on hot.  It will last in the bottle for a week.  Good luck.  I just got over diverticulosis and am a little worried about getting the LS back so I'm spraying once again to get ahead, I hope.

       

  • cheryl33619
    cheryl33619 beth51904

    Posted

    I have heard from others that the club causes yeast infections I do not trust steroid cream at all I use other alternatives to stop itching and they always work like castor oil cold pressed from the health food store and lavender drops in it
  • beth51904
    beth51904

    Posted

    Well i went to the gyno. Took samples and tested me for everything under the sun including herpes which as indicated in my original pst other gynos told me I had. Everything was negative so we did a biopsey. I just learned its well differentiated squamous cell cancer of vulva. WTF! Im so scared. I just sit here crying and trying to absorb what is happening, the words i have heard....... i am just so scared.
    • ml66uk
      ml66uk beth51904

      Posted

      Thanks for the update, and I'm really glad you got to the gyno.  Sorry to hear it wasn't something less worrying, but vulval (or vulvar) cancer isn't as bad as it sounds.  It's obviously not something you'd want, but there are far worse things you can have.

      I'm no expert, but "well-differentiated" means less aggressive.

      These links may help:

      https://patient.info/health/vulval-cancer

      "Most vulval cancers can be cured. The outlook is good in women who have small cancers that have not spread."

      and this article is written for doctors:

      https://patient.info/doctor/vulval-cancer-and-vulval-intraepithelial-neoplasia

      I was going to recommend this group, but it looks like you already found it:

      https://patient.info/forums/discuss/browse/vulval-problems-1752

    • beth51904
      beth51904 ml66uk

      Posted

      Thank you for all the links!!!! I will read each one!!! I am a nervous wreck. Thank u again.
    • cynthia40883
      cynthia40883 beth51904

      Posted

      Hi Beth, My gyno told me cancer is easier to deal with because they simply remove it. Were youu diagnosed with LS? I hope your doctor explains everything thoroughly to you so that you don't have to try to figure this out on.your own..Please let us know what the plan is as you learn how they are going to deal.with this..

    • beth51904
      beth51904 cynthia40883

      Posted

      Yes, ive had LS since my very early 20s and prob before. I am 49 years old now. I stopped seeing my reg gyno vecause it became increasingly harder to get an appointment. Over the last 3 years the other gynos kept telling me it wasnt LS and appeared to be herpes (though it came back negative). I finally made. An appt with my old gyno whonre confirmed LS but also indicated things did not look very good. She re tested for everything HPV, ,herpes, took a pap etc. when everything was negative she took a biopsy. The slide is going for a second opinion and to be staged. This will take a week. I will then see a cancer dr for the next step. This all seems sureal. I had a "cut" above the clitoris for a good 10mos. This is where the bump formed. Everything looks lime the "normal" LS - raw, itchy, burn patchiness i have always gotten, especially with stress or over eating of sugar. This time it didnt go away/clear up at all. It didnt get worse over a 3 mis period. It didnt get better. I have nver been so scared in my whole life.

    • beth51904
      beth51904

      Posted

      I appologize for all the spelling errors!
    • cynthia40883
      cynthia40883 beth51904

      Posted

      So it looks like a bump, not the usual LS?Do you live in the U.S? Just wondering if you are being sent to a doctor who is used to doing surgery in that area. I will have to find a surgeon for the same area. My gyno has no idea who to send me to.I have a different problem, scar tissue growing over urethra. I live in Florida, not the best place for medical care..I will have to research and find my own doctor, probably. I can't believe you have been dealing with LS since your 20's. Have you been using clobetasol all of those years?

    • beth51904
      beth51904 cynthia40883

      Posted

      Yes, i have been on clob sunce my 20s - off and on as needed.

      The area above my clitoris looks swollen and ittitated. Very red and "raw". The labia is very red and raw with smaller blister like marks. Regarding the "bump" it feels more like thick skin. I could feel under the bump and it is hard. I really felt the "paper cut" unfussed and the area split open. Im in Illinois. The gyno told me once the slide is viewed and its staged, my next appointment will be with a dr who specializes in cancer. I know nothing more. I literally was told yesterday. I WILL be doing lots of research. Do you have vulvar cancer?

    • cynthia40883
      cynthia40883 beth51904

      Posted

      Not that I know of, but have this scar tissue over urethra and told last week.I would have to.have painful surgery, but no one knows where to send me for that. I am also having BLADDER problems, unexplained. All of this in.one week. I know how you feel.I just want to run away from.All.of this..Abdominal area swollen and tender. I have the raw areas around the vulva for 3 years, when diagnosed with LS..No biopsy, and never used clobetasol. So afraid it will burn or make worse. The Doctors I have dealt with seem.knowledgeable and annoyed.
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