Help and advice please

Posted , 9 users are following.

i was diagnosed with LS some years ago and treated with steroid cream. Have had it on and off since but have had it now for over two weeks and it is so bad my skin has broken out in blisters and had some really large black blood blisters. It has spread down around my anus and is cracked and so sore when passing urine. Saw Dr this am but he was very matter of fact and just prescribed Betnovate and I had to insist that he looked at it. I am 60. I cannot wee without practically crying and now it is a real struggle to poo also..... Worried about vulval cancer. Had hysterectomy 18 yrs ago and don't have smear tests so help...... 

0 likes, 11 replies

11 Replies

  • Posted

    Oh dear, doctor not helful then. Lots of ladies here spray themselves with water before and after using the loo to stop anything getting on the skin. Others coat the skin with vasoline or similar. My doctor was nice but clueless so i went back and insisted on a referral to a gynacologist, as i also have had a hysterectomy. I would ask to see one just to put your mind at rest.
    • Posted

      This forum is so amazing. Thank you so much. I no longer feel like a freak and everyone is so helpful with their advice. 
  • Posted

    Please don't feel alone. You aren't. I haven't got any direct advice to offer, I haven't had a breakout as bad as yours.

    Many of us on this forum use Dermovate rather than Betnovate as it is stronger. Also ointment rather than cream, it works better. Check the past threads on this topic, there are many, many suggestions for easing discomfort. Bicarbonate of soda (weak) sprays and baths, coconut oil, emu oil, aloe vera, witch hazel. Many of us have had unhelpful doctors. I have just moved doctors after the one good one in my practice left (hope the new ones are ok).

    Personally I use three pinches of bicarbonate of soda in a small spray bottle after every toilet visit, dry well then put coconut oil on to soothe, or 99% pure Aloe Vera when really sore. I have just ordered Emu oil too as I ran out a while ago. I remember it was good and soothing.

    That's all for maintenance though. What about going to A&E or a hospital visit for a chance to see a different doctor? You should try to get a referral to a Vulval Dermatologist. There are a few about. You don't say where in the world you are. Maybe someone on this forum is near you and can suggest one.

    I would also suggest that you drink lots of water to dilute your wee and make poo softer like for a UTI.

    Good luck, it will get better.

    • Posted

      Thank you soooooo much...... I have learned more about LS today than I ever knew and it is just so great to hear what worked for you and I have just had my first Bicarbonate bath. I will call my doctor tomorrow and request a referral. Xx
  • Posted

    Hiya,

    Have you tried changing your diet? Try sugar/dairy/gluten free if not, and see if that helps. My LS is in remission because of it and I also take celedrin and MSM which are anti-inflammatories.  Good luck xxx

    • Posted

      how kind of you to reply to my cry for help. I am so grateful for the advice and to know that there are ways to help. X
  • Posted

    Rua, you definitely need to at least see a gynaecologist to get the right ointment.

    The holiday season brings added stress, often leading to sugar binges. This is stuff you can manage. Don't be thinking cancer. Just think manageable flareup.

    • Posted

      Thank you so much for your kind reply. I no longer feel alone and thinking about the sugar it makes such sense. I don't have a sweet tooth but yes the past few weeks I have had a glut of sugary foods. Will definitely stay off it now. I think the cancer worry was just that I did not know how to cope or what to expect but this forum is amazing. X
  • Posted

    Hi, sorry to hear you are in such discomfort.  When LS flares up badly  it is often due to your diet, or stress, so, for now, I would make a huge effort to stop eating anything with sugar in it. Take a bath, twice a day, with either salt water or bicarbonate of soda, both seem to soothe the skin.  Once out of the bath it is imperative that you are super dry before applying anything.  For rashes and cuts around the vagina  I use Desitin, a baby's nappy cream, because I have found it soothing and it works for me.  For cuts and white plaques in and on the vagina I use the steroid cream.  Every time you go to the bathroom you need to spray your Vjay with a mixture of water and salt, or water and a pinch of bicarbonate of soda, pat dry, then apply something like coconut oil, emu oil, or even vaseline, but don't overdue it, as I think too much has the opposite effect.  

    After 2 or 3  days, of using the Desitin around your bottom (less is more) switch to just using talcum powder in that area, the idea is that the cream initially soothes and heals, and then you want to be drying that area up completely, which means after every bathroom visit spraying, drying and talc-ing .  Be careful with the talcum powder you don't want to be putting loads of that on either, just enough to keep that area constantly dry, (I use a fine Yucca flour for this area, instead of talc, anything to keep the area dry)  So the routine is bathing, drying, creams and then moving onto talc.  You need to be looking at your undercarriage with a hand mirror a lot at this stage, to make sure it is super dry before applying anything.  I think you will see some results with this routine.

    • Posted

      What a kind and informative reply to my distressed post today. You have given me hope and I am willing to try just about anything for some relief. Have had a bicarbonate bath and also used the water spray. Will source the Desitin tomorrow and feel that all is not lost. Thank you so much. X
  • Posted

    just a quick note...I'd agree with all the posts here, but if you don't want to have a bath twice a day you can get a sitz bath which sits on the top of your loo, and just fill that with warm water. If weeing is super-painful then go into the sitz bath, so that the urine is diluted as you pee. Also Manuka honey can be very effective in healing blisters etc, apply at least half-an hour after your steroid before you go to bed. Are you hypothyroid? A lot of us here are, and it can lead to constipation which in turn leads to tearing. Eat lots of fibre so there's no straining. Also my dermatologist tpld me that thrush will always attack LS damaged skin so if you've been eating lots of sugars a few days of anti-thrush cream coulld help.

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