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LS under control but now vulvadinia!!

Posted , 8 users are following.

LaineyBoo
LaineyBoo

Just returned from my specialist. I've been seeing him every 3 months and he's now happy to put me back to being seen every 6 months. Almost nearly 3 years it would appear I've finally got a handle on this condition, no open lesions for the first time in over 3 years. Was a long hard road but perseverance helped, along with advice on this forum. Only negative was 4 months ago I was also diagnosed with vulvadinia. Been looking up some info, best I can find is its chronic pain condition - my gynie has now referred me onto a pain specialist - just wondered if anyone else has experienced this from LS ? Thanks x

2 likes, 17 replies

17 Replies

  • Guest
    Guest LaineyBoo

    Posted

    I have only just been diagnosed so I am not sure on the vulvadinia.  People on here are so helpful.  Would you mind sharing your story on how you had managed it for so long now please ? Thank you and I wish you well X 
    • LaineyBoo
      LaineyBoo Guest

      Posted

      I havnt really managed it if truth be told, it's been trail and error. In the 2 years I've tried the following :

      What am doing :

      🔹Small amount every 3-4 days of clobetasol

      🔹when flare up immediate

      application (that evening) with clobetasol

      🔹Daily wash with dermol500

      🔹1 a month - hot bath with dermol

      bath

      🔹Light coloured underwear

      🔹Loose fitting clothes

      🔹No bottoms at bed time

      🔹gluten free diet

      🔹Stopped smoking

      🔹Stopped drinking

      🔹Joined this support forum

      That's just the start, there's endless advice n tips I've taken from this forum that I didn't write down - I hope u get urs under control soon

  • Jessicat
    Jessicat LaineyBoo

    Posted

    Hi what are you symptoms with the vulvodydinia as I thought I might have had that alongside the Ls, my dermatologist suggested I might have it, but I haven't had any biopsies done 
  • samantha1970
    samantha1970 LaineyBoo

    Posted

    Hi, yes my dermatologist says I also have vulvodynia alongside LS - I think mine is provoked as it seems to crop up more after sex or exercise. The dermatologist gave me lidocaine for it which works on numbing the pain. 

    What did the doctor say was the cause of yours?

    Samantha

    • Guest
      Guest samantha1970

      Posted

      Hi I looked on the website and it says there can be a pain like needles.  I wonder if I have this too as this is one of the symptoms I suffer with.  Do you have a discharge with it too ? 
    • samantha1970
      samantha1970 Guest

      Posted

      Hi Lisa, sometimes, but not much. What has the doctor prescribed for you?
  • catts123
    catts123 LaineyBoo

    Posted

    Hi laineyboo

    ive been told by my dermo that i have ls even though 2 biopsies didnt confirm they only showed up as chronic inflamation and i have no white skin.im using the dermovate but i still have burning near the entrance of my vagina.the dermo thinks its vulvodynia.ive been takin lyrica and amitriptyline but im still the same so ive been referred to a pain specialist as well and im hoping she can help.i really hope u get some relief from this..xx

  • LaineyBoo
    LaineyBoo

    Posted

    I got 3 vulva biopsies done in April, under local - it was agonising. I felt everything from the numbing injections to them punching the biopsies out, and the doctor reassured me had had given me as much anaesthetic as he could. The recovery was horrendous also, the pain was unmanageable. I was crying in pain for days.

    Since, I've had a constant dull throbbing pain, and sporadic pins and needles. When I go to toilet and wipe it's a more intense pain and then when my bowels move it's pretty bad. I work in an office, I can be randomly sitting at my desk n there is a shooting pain in the area that can often reduce me to tears.

    The gynie prescribed me 300mg per night of gabapentin. It was supposed to stop the signals between the nerve endings in the area and my brain. I didn't feel any benefit, was on them for 6 weeks and all the did was make me drowsy which lasted through to next day. In view of that, the gynie said that it was chronic pain and referred me on, which is where I am currently - awaiting my referral so I can get the right pain relief as I am currently going through 1-2 boxes of paracetamol AND ibrupofen a week which is not great either

    • alison54950
      alison54950 LaineyBoo

      Posted

      I feel your pain, I have not really had a confirmed diagnosis. I believe I have vulvodynia! I've tried every cream, ointments, lotions and potions! I have had amytriptiline and gabapentin but could not tolerate side effects. I wash with hydro mol and try to keep moisturised with coconut oil. I am in agony! I feel so raw, sitting and walking can be unbearable. I read a description recently which summed it up perfectly. If you imagined someone twisting your sunburnt arm, this is the pain! Exactly. Any ideas gratefully received.
    • LaineyBoo
      LaineyBoo alison54950

      Posted

      "If you imagined someone twisting your sunburnt arm, this is the pain!"

      Absolutely spot on, this sums it up to a tee

    • catts123
      catts123 LaineyBoo

      Posted

      I totally agree that is a perfect description for the pain sad
    • alison54950
      alison54950 catts123

      Posted

      Have any of you had any relief with anything? I'm at the end of my tether this week! I'm going to a vulva specialist on the 1st Dec. I so hope it's not a wasted journey. I was initially given steroids for LS, I've only had pain no itch!
    • catts123
      catts123 alison54950

      Posted

      Hiya

      i dont have any itch either only the burning pain.the first time i was put on amitriptyline i had relief for about 2wks but then it just came back so my dose was upped a few times with no relief.ive taken lyrica and neurontin as well and no relief.im back on amitriptyline and lyrica together and again no relief.im hoping the pain specialist can help.i really hope that u find some help when u go to the vulva clinic and if u do please let us know..xx

    • alison54950
      alison54950 catts123

      Posted

      It's the side effects from all these meds that are hard to cope with plus the extreme discomfort in the vulva! I will certainly pass on anything that is suggested at my appointment. I just hope this might disappear as quick as it arrived.
    • samantha1970
      samantha1970 LaineyBoo

      Posted

      I had 3 vulva biopsies last December and I know your agony! The needle was the worst bit for me and yes I felt it all too! 😳. When I had mine the three areas biopsies included the left labia minora , fouchette and a perianal area towards my leg (this I now know was where urine drips and this I'm sure affected the skin in that perianal area). Interestingly the area I was complaining about did not show up on the vulvoscopy! Which is the right labia minora. The results came back as LS on left labia and chronic inflammation in other places.

      after using dermavate (clob) and being downgraded to Betnovate, plus the bicarbonate soda rinses and coconut oil I vary with the level of itch /pain for LS.

      But for me the continued pain in right labia area was still bothering me and this is when the vulva dermatologist said it was vulvodynia. They gave me lidocaine which you have to use 3x a day for 6 months to turn off the nerve endings. That was in June.

      Ive subsequently looked/learnt/researched a little more and I think mine may be linked to 1) dairy intake 2) provoked by sex and exercise.

      I'm testing it out at the minute my theories.

      interestingly enough I was I'm with my gynaecologist on Monday and I mentioned it to her and I said the area appears to be close to the batholin gland. The looked and prodded the gland a little and I was then in pain for a day or two after. She said the gland was not infected and no cyst there.

      On Tuesday my other dermatologist did the fractional laser treatment (like the Mona Lisa Touch) and then PRP (they didn't inject the PRP but it was as though they fill in the holes from the laser with the PRP). I'm not allowed to exercise or have sex for 7-10 days. I'll see how things are after. But for me I'm thinking it's all related at the moment to the batholin gland. 

    • LaineyBoo
      LaineyBoo samantha1970

      Posted

      Thanks for your reply, it was very interesting. I've developed a lump and it was confirm on Tuesday its a batholith cyst - it's sore but not too bad. My gynie said it was small and to be monitored at the moment
    • samantha1970
      samantha1970 LaineyBoo

      Posted

      Hi, do you think this is what is reacting causing the pain for the vulvodynia diagnosis? Is it from roughly the same location?

      I have to wait another week or so before testing my theory on this one due to the laser. 

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