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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
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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
🔹Light coloured underwear
🔹Loose fitting clothes
🔹No bottoms at bed time
🔹gluten free diet
🔹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
What did the doctor say was the cause of yours?
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
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
Absolutely spot on, this sums it up to a tee
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
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.
I have to wait another week or so before testing my theory on this one due to the laser.
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