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Advice?

Posted , 7 users are following.

pp234
pp234

Hi Everyone,

I’m looking for a little advice - this has been an ongoing issue for me and I’m really starting to worry. Several doctors have mentioned LS to me but all say they can’t tell if it is because they’re not a specialist.

Basically, my vulva and anus have been really itchy for about two to three months now. The itching isn’t constant and seems to be mild at times and at other times it’s really bad, making me sore.

When I initially noticed the itching, I took a look below and noticed very little change. I went to an STD clinic and they tested for everything, swabs and blood tests taken and it came back all okay. Then I noticed that the skin around the opening to my vagina darkened and got little bumps on it. My perineum had also gone quite white. I went to the GP and she told me I needed to go back to the sexual health specialist because she was convinced they’d made a mistake and that they were warts. Admittedly, they do look a little warty, but when the skin is stretched, they’re actually quite spaced out and go down to pretty much nothing. Anyway, I went to a different sexual health clinic and the doctor looked specifically at the bumps and sprayed some stuff on them and said that she could 100% say they weren’t warts. I went back to my GP on and they gave me steroid creams and an emollient to use and told me to come back in two weeks because there were signs of irritation. They helped a little, but not massively so they’ve now referred me to a gynaecologist but the appointment isn’t until October and I don’t really know what I’m supposed to do in the meantime.

I guess I’m just looking to see if anyone has experienced anything similar to this? I feel like I’m not getting anywhere and when I’ve tried to find people with similar symptoms to mine (especially the bumps) but I can’t find many.

Sorry for the long-winded story!

0 likes, 10 replies

10 Replies

  • hannah19230
    hannah19230 pp234

    Posted

    Have you looked at pictures of LS? Does the whitening just look like normal skin? Or Shiny and like its starting to fuse/thin?

    I have no visible signs yet and still not a 100% diagnosis of LS myself, I'm seeing another doctor tomorrow - obviously hard to tell without seeing it. Do you know what the name of the cream was?

    I hope you find your answers! Maybe see a second Gyno or a Dermatologist as you wait for October!

    • pp234
      pp234 hannah19230

      Posted

      Hi Hannah,

      Yeah, it's a rather small patch and the skin appears to be quite shiny so I'm thinking it could be? The last GP I saw also mentioned she could see some quite pale patches near the entrance but I can't say I noticed to be honest.

      The cream is a Eumovate Ointment - the doctor told me its a moderate steroid but it only seemed to help a little!

      Hope you find your answers too! 😃

  • SnappyCat
    SnappyCat pp234

    Posted

    Can you try to get appt with a dermatologist? I'd ask on the phone if they are willing to treat LS - or vulvar skin issue (I've heard a few stories about derms who didn't want to treat. But, my experience is that they are more up to speed on this than is gyn.

    • pp234
      pp234 SnappyCat

      Posted

      The clinic I'm going to is a vuval clinic - so it covers both gyn and dermatology but I have to wait until October for an appointment - which seems like a long time to be in pain and discomfort for.

      Might be best trying to find a private dermatologist in the meantime, I guess!

      Thanks 😃

    • SnappyCat
      SnappyCat pp234

      Posted

      Here's what I would do.

      1. Did they tell you how often to use the steroid? I would expect them to have said either 1x or 2x a day for at least 2-3 weeks. Maybe backing off to 1x a day for the remainder of the time.
      2. Call and tell them that you have suspected LS, and your previous doc prescribed steroid. Tell them that you understand they may want to do a biopsy at the appt and ask how long would they like you to be off the steroid before your appointment. If they want to do a biopsy at that appointment you will need to have been off steroid for a few weeks at least.
      3. Meanwhile, try some soaking baths before you apply the night-time steroid. At least 20 minutes to soak...then apply the steroid...rub it in for 90 seconds.
      4. Try using some sort of oil for moisture/barrier during the day, after each toilet...olive oil, coconut oil, vitamin e oil, vaseline, or aloe vera gel (pure...no alcohol).
      5. Ditch sugar, gluten and alcohol to the max extent possible...it should help some.

      Deep breath...this will be ok. No need to panic.

    • Guest
      Guest SnappyCat

      Posted

      Sorry to intrude. On my thread someone said not to hold off steroids before a biopsy as the steroids are took into account??

      Everything is so confusing it seems, with no firm guidelines 😦

    • pp234
      pp234 SnappyCat

      Posted

      Thanks so much for your advice. I'll try all of this - willing to try anything that might help while I wait for my appointment!

    • Guest
      Guest Guest

      Posted

      I was told that by a gyno , that you only need to be off the steroid one week because the tests take that into account....

  • Guest
    Guest pp234

    Posted

    Hello pp234

    I am sorry you are suffering like this. If you are in the UK I would ring your hospital and ask if they have a cancellation before

    October to get you seen sooner . Also look up The Royal Free Hospital in London Gynaecology Dept then Vulval Clinic and ring them.

    They may/will ask for a GP referral if you can get one.

    I went there and received great help. I was told that a high percentage of their patients are referred from outside London.

    I have also received fantastic support from this site and follow lots of the great advice given to me here.

    Hope you get help very soon and start to feel well again . Positivity is essential

    • pp234
      pp234 Guest

      Posted

      Thanks for your suggestion, I'll definitely take a look as London isn't too difficult for me to get to!

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