Looking for some help and reassurance!

Posted , 7 users are following.

Hi, I have been having some issues down below for probably right months now, and had thought I was experiencing reoccurring thrush as I am a diabetic, however when nothing was clearing it I went to the Drs and she looked and diagnosed lichen schlorosis. To be honest she didn't explain much, and actually just have me the information page from this site.

I am on dermovate and have been advised to use it once a day for four weeks. Three weeks on and the labia and clitoris are much less itchy and sore, but I am still very sensitive and tear all the time, just when cleaning myself or wiping. Will this also improve with dermovate?

I am also very concerned as the entrance to my vagina and my urethra are still very red and inflamed and at times painful, dermovate is not improving this at all. Does anyone know why? Or have any suggestions?

I've been reading the forums for a while, so have been using a bicarbonate of soda spray, had some in the bath and I'm using an emollient cream to wash.

I'm utterly miserable about this as we've also been trying to conceive and I just feel it's a problem I don't need sad will it get better??

Thanks for reading

0 likes, 12 replies

12 Replies

  • Posted

    Sorry Fabala especially because you are young. I use Advantan fatty ointment and find that very good as well as Dermeze. You need a specialist even a special clinic that deals entirely,with this. I am very fortunate that I can attend one at the Mercy Hospital in Melbourne. I put no other substances down there except the water spray and I alsp have a bidet that I swear by. I do not use the drying part and it is very soothing and keeps the area clean and comfortable. I do not support the connection to diet although I try to eat well. I am diabetic and have Crohns as well. I manage to keep it all fairly happy and I am 70 years old and feel for you as I never had it at your age. I have had it for about 20 years. Hope you get some better help and support.
    • Posted

      Thanks for replying, I have another appointment on the 10th, so hopefully I can see if she recommends anything else and may mention some of the things I've read on here.

      It is very frustrating and I'm feeling very low. It's good to know others understand.

  • Posted

    Fabala, I was 22 when diagnosed and still had two babies. I'm 63 and was only diagnosed less than two years ago. Dermovate takes a long time to work, months, even a year or more. In our discussions here we've recently heard from one sufferer who used Dermovate too often – little dabs whenever she was itchy or sore. This is not how it's meant to be used. Use it exactly as prescribed – you'll taper off to two applications of a tiny dab only on the active LS area(s).

    The bad news for a couple trying to conceive is that sex irritates flared LS, as you have probably figured out. And stress is our worst enemy, so if you're trying to have a baby and worrying that it's not happening, that's hot helping your undercarriage.

    Three things definitely make it worse – soap and sugar a lot of sex. If you're watching your ovulation you can probably pinpoint the day.

    Do watch Dr. Goldstein's presentation – maybe with your husband, so he can understand.

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    Good news – some women find the hormones of pregnancy put LS into remission.

  • Posted

    Also, Fabala, use something like coconut oil or emu oil to moisturize.  When so sore, emu oil can be very soothing.  I apply this after bathroom rinsing every time. 
  • Posted

    It breaks my hurt when I learn of someone young developing this disease. On another forum a woman who has traveled world wide for relief uses the gauze and baking soda compresses and says they will heal you. She soaks strips in a baking soda & water mix, puts her legs way up and lays the strips across the affected area for 10 to 15 minutes at a time. I've not tried the baking soda route, although many here say that it is a great help. I use witch hazel in a spray bottle...it stings at first but does heal me up. I also use pure aloe vera gel for the itchiness and it stops it for me. I got the witch hazel idea from when I gave birth. I was given small pads soaked in it to put on my stitches to hasten healing.  I think you could try mixing some of the aloe vera gel and the witch hazel and make yourself some pads and try those...the aloe would probably calm the stinging of the witch hazel down a bit.  Many also use coconut oil for moisturing...there is a component in the coconut oil called berberine which studies have should is good at healing the skin. There is controversy on this site about the role of diet with this disease. A poor diet does not cause it, but going with an anti-inflamatory diet would improve your symptoms.  An alkaline body can fight off disease much more efficiently that an acidic body.  Keep reading these posts as many have different things that help them...and it's not always the same for everyone. Just keep trying things until you find what makes you most comfortable. A good wash for the area is a product called Cetaphil...very mild and non-irritating...I would highly recommend that you use it if you can find it.
    • Posted

      I loved your response to this girl. It made me feel better. Such a horrible disease we all share. I run around half naked most of the time. If am lucky my small apartment warrants it. I have a great husband. We haven't had intercourse in 8 years. I hope she is as lucky to have someone as I am. I will look for the wash, but I live in Canada. I think I know what it is and will go look here. Cetaphil. Something tells me it might sting though but we'll see. Thaks
    • Posted

      Hello,  Cetaphil should not sting. It's in a white bottle with blue label. Amazon carries it and they do ship internationally on many items...hopefully this qualifies. If you can't find it I will ship you some to try...FREE! It's on sale at our local Sam's Club this month and I would be happy to help a fellow sufferer out. It is soothing and temporarily stops the itching. If you have the itch...try the 99% aloe vera gel...it really helps me. I just make certain I'm very clean before I apply it. I know about the intimacy problems...my hubby is very understanding as well. Sure messes up your life. I know there is a method to send a private email on this site...so if you do not locate some...email me your address by that method and I will ship a bottle to you.
    • Posted

      Thank you so much. You're a very kind person. I live close the border so may be able to hop into SAMs sometime myself. I am so looking forward to it. I have been going crazy for weeks and after reading this site I through down the laptop and filled a little sitz bath with warm water and 1 cup of baking soda and sat down. This is the first day in weeks I have felt NOTHING!!! I didn't want to get to cocky so I lighted massaged in a pea drop of the Estrogen cream gently over the area and feel so good. I am always to sparing on the estrogen cream as I have a 7cm fibroid and am afraid the Estrogen will make it grow bigger as that's what they feed on. My Gyno said once your in menopause these usually shrink but mine isn't and I bet that's why. But I can't even imagine having surgery down there to remove something like that. How to us women with LS ever have any type of surgery. The thought is frightening. Thanks for all your help. So fat just a touch of Clob, a thin layer of Estrogen and the baking soda should cut it for now I hope. I use a bit of Vaseline or Emu just to keep moist and soft in between.
    • Posted

      If you use the natural progesterin cream along with the estrogen that may help.  I use the natural...I purchase both online as the stuff my doctor prescribes has an additive that I'm so allergic to that it causes both a major flare and a yeast infection.  He's tried a couple different brands and both have the same terrible results. Yes, I was thinking a sitz bath would be a great idea.  The aloe is helping me right now...but the sitz bath would likely be more healing...will try that this weekend...many are talking about how well the baking soda works.
    • Posted

      Well, it's been 7 hours since the baking soda sitz and still feeling very comfortable. Hubby and I went out for dinner, I was feeling so good but when I came home around 7 i just smeared a bit of Vaseline over everything and still really comfy. Not sure if I should do anything before bed, but maybe a bit of emu oil for the night. No chemicals. But it's so nice to have no pain. I forgot all about baking soda until I came on here. I will go bulb barn and get a huge bag. Also, I notice after I take antibiotics like I did for Strep this Winter I end up later with a huge flare up. I think that's what happened. Have you heard anything on this? My daughter in law gave me the little blue sitz bath she got from the hospital after her baby was born. Maybe you can get one there or a hospital supply place. I love it so much. Perfect amount of water then I sit and read. the soda or salts don't dilute to much like I. A bath and it really keeps everything nice and clean. Thanks for the natural tip. Not sure why my doctors aren't suggesting the progesterone cream to me ever. I hear about this cream so much. Good Luck Renee
    • Posted

      Try Caprylic Acid for yeast overgrowth.  It's in coconut oil and it inhibits the growth of yeast.  Glad the baking soda is helping you. Taking a whole bath with it before bed tonight...the lichen on my legs is really bad right now and is driving me crazy.
  • Posted

    Sorry...I'm not sure how heart turned into hurt in the first sentance...and how...do take care.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.