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Smelly!

Posted , 29 users are following.

AJ
AJ

I have recently been diagnosed after several years of thinking it was all menopause-related (and my GP plying me with antibiotics and trying to cure thrush), so am greatly relieved as well as saddened by the diagnosis. I have avidly read all the other posts - very helpful, many thanks. I find that Dermovate (been using it about 2 months now) is a life saver - glad to know my sex life isn't completely over yet! Thankfully I have an understanding husband. I am now using Aloe Vera gel in between, also Epaderm ointment and Oilatum in the bath and as a soap (which stings a bit).

The thing I am finding most difficult is the SMELL! The gynaecologist said it was normal. I also find my urine smells as well.

I was very heartened to read of the person who has been using Dermovate for ten years. Am trying to keep positive.

Best wishes.

2 likes, 31 replies

31 Replies

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  • ay
    ay

    Edited

    Hi

    I have also recently been diagnosed with LS, after a year plus of being treated for Thrush and undergoing tests for bacterial infections and STI's.

    I have also been avidly reading the posts for any help sufferers can offer.

    I have been using Dermovate for 3 months - but not sure it is helping.

    I was particularly interested in your post as no-one else seems to mention the smell. I too am concious that I smell and never feel really clean.....this seems to have gone worse since starting the Dermovate. I also have very strong smelling urine - never heard this mentioned either.

    Wishing you the best with your treatment.

  • Tasha_e
    Tasha_e

    Posted

    Hi.

    I'm 18 and have just been diagnosed with lichen sclerosis.

    I'm obviously really gutted and worried as I've heard that it can get so bad that you can't have sex or children.

    At the moment I fortunately only have mild symptoms (thinning and paling of the skin and slight fusion) but it is not causing me any pain. Does anyone know whether if i continue to use Betnovate (the steroid cream I have been prescribed), whether the symptons will stay the same or if they could worsen?

    I also have noticed the smell, I thought it might just be the Betnovate but now I have seen that other people have experienced this too I'm thinking that maybe it is just another symptom of LS.

    • dorothy6674
      dorothy6674 Tasha_e

      Posted

      it's not the medication. just another symptom. I wash with Aveeno with oatmeal helps with the itch.and tea tree is very cooling and helps with smell but nor completely.

  • Guest
    Guest

    Posted

    I am just wondering if I have that? I have no sex drive whatsoever, not that I want one anyway, but my blue veins show through my very white skin? I am very sensitive when anyone touches me...want to scream..out loud?

    I went into a shop, and a guy asked is that a blue vein or a bruise? I answerpfff! Who cares?

  • Guest
    Guest

    Edited

    Mine does not smell, I have already gone thru menopause so not much lubricant being produced down there. For odor and itch relieve, add 4 to 5 Tablespoon of baking soda in your lukewarm bath water and soak for 10 minutes. You can do this 2 or 3 times a day.or try a bit of baking soda in a sitz bath. Got this tip from a site for vulvar pain and itching.
  • Guest
    Guest

    Posted

    Further to the baking soda comment, it is a natural deodarizer so is safe to use for itch and smell.
  • AJ
    AJ

    Edited

    Thanks for that I will try it. Am already having baths with salt in and thanks to a tip from someone on this forum have stopped using soap or shower gel of any kind, which is helping.

    Should have realised about the baking soda - I use it to deodorise my fridge!

  • susan03981
    susan03981 AJ

    Edited

    HI Everyone, just joined as im so relieved that some one has posted about being smelly and a strong urine smell. ,had this for many years but only noticed smell perhaps end of last year, at least i know im not on my own although you always feel alone

    • sue77230
      sue77230 mrsl81907

      Posted

      Make sure to dilute with water as straight it can ruin the enamel on your teeth

  • mandy01484
    mandy01484 AJ

    Edited

    Hello ladies. I'm 55 years old and now in menopause (where did the time go!). As of this morning I've been diagnosed with Lichen Sclerosus and I'm pretty devastated. Approximately 7 - 8 months ago I noticed a very strong and pungent odour (like a smelly wet dog). I thought it was perhaps a yeast infection, bacterial vaginosis, or thrush. I tried treating it as such with no success. Gynocologist was not helpful at all and fluffed me off saying there was nothing further she could help me with. Because of the pandemic and everyone in lockdown, I couldn't reach my family practitioner nor a nurse admistrator. Fast forward, and I am dealing with unbearable itching and tenderness. It was a ì pharmacist who recently told me about Lichen Sclerosus as I was looking for a cream to relieve my symptoms. I did lots of research afterward and fit the bill including the lesions on my skin which I thought was ring worm. I was very distraught to notice the rapid change in my anotomy and the ensuing atrophy that has resulted - this is the hardest part for me, because I feel like my womanhood has been taken away from me. The condition was not caught early enough and was advanced. And I blame myself for not persisting with seeking treatment/diagnosis, but I didn't know what it was). Suffice it say that I went to a walk-in medical clinic (one that was actually seeing patients during lockdown) and will be refered to a vulva clinic in 1 - 2 weeks where treamtent can occur and verification for any pre-cancerous cells. Hopefully by then I will have some visible anotomy left. Right now though I am numb, in shock, and fearful. Prayers of love and light to all of you for sharing your time and stories which has allowed me to share mine.

    • mary26972
      mary26972 mandy01484

      Edited

      I am 75. Went all around the doctors until finally diagnoses with LS. Steroid cream helps but I have found my GP really does not know very much about the condition. It is trial and error. Because of Covid everything is done mainly over tge phone. It is a very good job I am old and widowed as my sex life would be nil.

    • sue77230
      sue77230 mandy01484

      Posted

      I had HPV cancer in my vulva and anus. YOur gyno can spot this using a vinegar wash to the peri area. THen she biopsied the areas. surgery took care of this. THen a year later I had a strong smell of parmesian cheese. went to the gyno fearing the worse and sure enough she found another spot and did a biopsy. TO my relief it came back LS and I have just started on COlbetasol. GOod luck to all.

    • Yvette1965
      Yvette1965 mandy01484

      Posted

      Hi Mandy likewise, I'm also mortified by my rapidly disappearing clitoris and the prospect of this condition worsening. I'm in disbelief at the lack of knowledge and understanding, by health care professionals about the mental impact this diagnosis can have on sufferers.

      Is anyone aware of any research being carried out in the cause, treatment or cure for this condition? I'm concerned due to 'location' of this condition being potentially embarrassing that LS probably goes under discussed & grossly under represented in research grant applications? is anyone aware of any medical leaders out there fighting our corner ?

  • shirl18526
    shirl18526 AJ

    Edited

    I too have LS. by the time it was diagnosed I had severe scarring and skin overgrowth. I'm experiencing the smell also. I use dermovate also. I'm so self conscious about the smell. I bathe sometimes 3 times a day bc I worry about the smell. my urine smells horrible as well. any suggestions??

    • christine21nov
      christine21nov shirl18526

      Posted

      Hi

      I was diagnosed 2 years ago and I'm on clobaderm which quite literally saved my life ( and my nether regions!!) I have only just started to suffer with the awful smell and smelly urine. I literally had a shower and could smell myself 5 minutes after getting out! I really need to know if this is normal? I'm sending heartfelt hugs to all fellow sufferers.

      Thankyou x

    • Jewel4209
      Jewel4209 shirl18526

      Posted

      Hey I just wanted to share with you what I have researched and the success I have had in two weeks. I posted on here 11 days ago beside myself with worry and just over it all. Since then I have done some research into food and if it can make a difference. Apparently you have to stay away from foods high in Oxalate. I have googled all of this and downloaded an app to my phone which tells me all foods to stay away from. Sadly the worst is cocoa which means no more chocolate. I had a binge the week before I was at my worst with chocolate and hot chocolate drinks. Potatoes is also one of the worst. Sitting down for long periods of time also aggravates it and I work in admin so I sit all day.

      In the past 11 days I have purchased a stand up desk so no more sitting and not eaten any chocolate, potatoes, coffee or oranges (or anything on my app that is high in oxalate. Not using any soap down there just water and using non perfumed wash powder.

      I have had no itching at all and have only noticed a slight smell at the end of the day. I am no longer using the steroid cream prescribed. I have also purchased Colloidal Oatmeal for baths but I have yet to try this.

      I just thought I would share as it nobody else has mentioned diet in here but I totally believe it is helping 100%

      Good luck ladies x

    • TECKlA29
      TECKlA29 Jewel4209

      Posted

      i was diagnosed last week i have been on the clobasteral cream for 6 days the burning is bearable . i have looked up about the diet and started about 5 days ago feeling a little better . My clitoris is hooded does anyone else have this problem and will it get better?

    • mrsl81907
      mrsl81907 Jewel4209

      Edited

      the smell gets worse...and then the urine starts to smell awful. See my replies...basically apple cider vinegar. to drink not to put on!

    • mrsl81907
      mrsl81907 christine21nov

      Edited

      yes and it gets worse. I couldnt stand the smelly urine...gets embarrassing in Ladies loos! yuk. Apple Cider Vinegar 2 tablespoons a day in water. I really hope you come back and see my replies. Nighties rather than pyjamas too. Good Luck!

    • mrsl81907
      mrsl81907 shirl18526

      Edited

      yes I'm banging on about it here because that smelly urine is so vile. Take 2 tablespoons of apple cider vinegar in a little water every day. For me the smell went after three days. It is brilliant.

    • Peaches99
      Peaches99 mrsl81907

      Posted

      mrsl81907

      I cannot endorse this suggestion enough! After using the ACV and water once i noticed a difference... I am now three days in and i feel like a new person. Absolute magic! I seriously cant thank you enough for "banging on"!

    • colleen22074
      colleen22074 mrsl81907

      Posted

      I put a few drops in the bathing/bidet water as well as recommended by my medical herbalist

    • sue77230
      sue77230 shirl18526

      Posted

      I found if i drink a lot of water it dilutes the urine and the smell is much better. HOwever there is multiple trips to the bathroom.

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