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NEED support right now!

Posted , 7 users are following.

robin59275
robin59275

I started having vaginal and anal itch between 4 and 5 years ago after the birth of my first child. This itch came and went for about a year until I finally mentioned it to my doctor, without doing a pelvic exam, he prescribed me Nystatin cream as a 2 week regimen and the itching subsided For a month or 2. I then mentioned this itch returning and he recommended me to repeat the same thing again. It was at this time I started googling vaginal itch and I kept coming up with Lichen sclerosus so I mentioned this again to my doctor and he told me no, it wasn’t LS because that requires little white spots, which I did not have at the time that could be seen. After that I just learned to live with the itching  that would come and go over the next few years. In 2015  I had my second child and the symptoms basically went away during pregnancy and soon there after, at some point during postpartum after having my second child the itching began again, but really no other symptoms and it came and went so I didn’t mention it to my doctor because I just figured I was an itchy woman down there . The itch came and went until I got pregnant with my 3rd child in 2016. I can’t recall if the itch subsided during pregnancy because at that point this had came and went for a few years and it became my “normal”.

About 6-7 months into my pregnancy I decided to look at my vaginal area one day after a shower and noticed 2 white quarter sized spots between my butt cheeks. I  embarrassingly showed my husband the spots and we both thought it had to do with pregnancy hormones because when I am pregnant my skin color changes drastically, therefore I never mentioned this to my doctor. In July 2017 I had my third child vaginally and nobody ever mentioned it looking out of the ordinary. 5 to 6 months later  the itching returned and it wasn’t until this past Tuesday I woke up and felt a sore between my butt cheeks so I bent over in the mirror and to my horror discovered those 2 white spots had about quadrupled in size and I now had a small open wound on the inside of one cheek. After further inspection everything is very white down there and the edges look red and inflamed. I also noticed a discharge from the anal area and a pretty strong odor as well. I have been googling this condition nonstop for 6 days and have self diagnosed myself with LS. I see my doctor tomorrow afternoon about everything. I feel so embarrassed because how did I not noticed everything changing down there? I feel stupid but really I can’t see the anal area without a mirror and how often do people really look at their actual butthole?  I know I sure didn’t often!!!

I just really need support and encouragement right now!!!!!!!!! PLEASE!!

2 likes, 18 replies

18 Replies

  • Nancy_K_B
    Nancy_K_B robin59275

    Posted

    HI Robin!  I think all of us have stories of how long - in retrospect for many of us - it took before we were actually diagnosed. 

    SO, you might want to print off my list of Nutritional Support for Autoimmune Diseases that make the difference - take it to your doctor tomorrow if you can... be prepared to educate them, politely.  I too googled for 6 days straight without much sleep... and then it took another 2 to 3 MONTHs of reading every link I could to create a workable Protocol... that by the way end of being useful for any autoimmune disease.  It should be easy ot find since someone just posted a reply to it  the last hour or so.    Other's have posted on the topicals that an be used as well for pain relief.  

    • robin59275
      robin59275 Nancy_K_B

      Posted

      THANK YOU so much for your reply! Is this open wound I’m experiencing common with this disease? It’s like a circle laceration is what it looks like ? 
  • jeri24294
    jeri24294 robin59275

    Posted

    OMG Robin it is past time to see a gyne or different doctor!  I keep my LS under control with Clobestol ( as needed) and a spray bottle with a borax solution.  This is such a good forum of caring folks.  Please let us know how you're doing.

    • robin59275
      robin59275 jeri24294

      Posted

      Thank you for replying! I trust my doctor to look at this initially then I’m guessing he will refer me elsewhere for future care for it. Thats my guess... I’m so nervous to even go in about this. But In hindsight I think I ignored many symptoms and I should have had myself seen before this sad
    • robin59275
      robin59275 jeri24294

      Posted

      How often do you have to use the clonetasol? And also, what does the borax do??
    • jeri24294
      jeri24294 robin59275

      Posted

      At first you will apply the Clobetasol (or whatever your doctor prescribes) as directed.  I use it now only if I notice redness or soreness...and sparingly.  The borax solution is a mystery to me...all I know is that it works.  Dissolve approx. 1/4 cup in 16 oz of water.  Use the spray after shower or using the bathroom.  Some use a moisturizer too.  The borax solution may neutralize the area.  I don't really know, but do know that I have managed to keep my LS under control...knock on wood!  Good luck to you!

  • ClareB43
    ClareB43 robin59275

    Posted

    Hi,

    I was misdiagnosed for 30 years by numerous GP’s and nurses so please make sure you are referred to a dermatologist or gynaecologist and they do a biopsy.

    Good luck 

    Clare 

    • robin59275
      robin59275 ClareB43

      Posted

      Yeah I imagine my doctor will refer me to a dermatologist. I’m 30 years old so i hve a long road ahead with this 
    • ClareB43
      ClareB43 robin59275

      Posted

      I have had LS since a child but was only diagnosed at 43years old which was 2 years ago. 
    • robin59275
      robin59275 ClareB43

      Posted

      I’m fairly certain I’ve had this since childhood as well. I remember feeling a dull pain in my vulva and also I’ve always cracked and bled with bowel movements as long as I can remember. It’s crazy to me no doctor ever noticed this !
    • jeri24294
      jeri24294 robin59275

      Posted

      Robin, I've had constipation troubles my whole life too, and have finally gotten relief with 400 mg of magnesium daily.  (I'm in my 70's) I'm sorry you've had this awful affliction since childhood.  So many doctors just aren't tuned in to our problems.  Keeping you in my thoughts to feel better soon.

    • robin59275
      robin59275 jeri24294

      Posted

      I will look into the magnesium, thank you! Have you had LS symptoms your whole life too? 
    • jeri24294
      jeri24294 robin59275

      Posted

      About 4 years.  My regular doctor saw the rash w/white patches on my bottom and sent me to a Gynecologist who said it was LS...he later did a biopsy to confirm.  
    • brigitte_27336
      brigitte_27336 ClareB43

      Posted

      Hi girls , same for me im sure i have this since childhood. it started looking like eczema i was 9... lived my life with apparently eczema  but now im sure it was LS....
  • Guppy007
    Guppy007 robin59275

    Posted

    Hi there, I wouldn't beat yourself up about not knowing you had LS..that's why you went to the doctors in the first place and they are the ones that misdiagnosed you for so many years.

    I would go to a Vulva clinic if you have one near you as you have been messed around enough and they will have seen LS before.  Many doctors and specialist don't actually have a clue regarding LS and so it is important at this stage that you see someone who can give you a  diagnosis.  Some women prefer to have a biopsy but personally I don't think thats always necessary as the long list of symtpoms that come with LS and the white plaques of skin are classic signs of LS..a good doctor that knows his stuff should be able to give you a visual diagnosis.

    With regard to the open wound that you have on the inside of your butt, I have found baby cream like Desitin applied thinly does the job nicely and the steroid cream (Clobestol) is good for clearing up the white plaques of skin but is too strong IMHO for open sores like you describe.

    Let us know how you get on at the doctor's.

    • robin59275
      robin59275 Guppy007

      Posted

      THANK You So much for your reply, I will try the baby rash cream for sure and are the open sores are normal? And also the white patches will go away with treatment? I find so much conflicting info on the web… I do see my doctor in about an hour though and my nerves are through the roof
    • Nancy_K_B
      Nancy_K_B robin59275

      Posted

      Robin - ask your doctor to test your vitamin D levels. The autoimmune research I've seen indicates that we need upward of 60 -80 ng/dl to be in healthy repair mode.  Many docotrs do not know this data and might only say well anything over 25 or 30 is okay - nope it won't cure anything. 

      OH, nad I had lots of open sores for a month but got right on it with the vitamin d and it cofators internally. and I also found castor oil with some liquid vitamin E added to it has beenthe msot soothing and healing. I've used som A&D cream (somewhat similar to Desitin) and it's nice too. Many women have mentioned changing up the topicals which I agree seems to be the case for me too. good luck breathe!   

    • Guppy007
      Guppy007 robin59275

      Posted

      Hi Robin, yes, the open sores are normal for LS, and unfortunately, there is a long list of symptoms that come with LS and sores fall into that list.  Some people get blisters/red spots/rashes/bruising/tiny little cuts (like paper cuts) and so on.  Once you have read and become informed on LS it will seem less daunting but at first its a terrible shock.  With regard to the white patches, most women will find that they go away with treatment.

      Remember that once you get on top of things you could be symptom-free, and some women go into remission for months and even years.

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