Just diagnosed with LS and ob/gun gave me a steroid cream to use twice daily for one month then once daily for another month.
Ever since I started the burning is now continuous rather than being intermittent. My urethra is so sore. I feel like I have to pee all the time.
I'm just wondering whether it's normal to feel some discomfort once commencing treatment? And how long to see improvement?
Any feedback would be appreciated 
Sorry to hear you've joined the club, but glad you found this excellent forum. Lots of women experience burning from the ointment at first. It's possible you'e using too large a glob. Only the size of a small pea – for me that's divided into three tiny bits, back entrance, perineum and front. You aren't applying the cream to your urethra, are you? Its flesh may or may not be flared up with LS.
Most of us start googling all sorts of worst-case-scenarios once we have a diagnosis, which is really upsetting and adds to our stress load. This is the number one worst thing for LS. We've really come to a consensus on here that stress is the biggie. Sugar is a close second – not that you have to worry about every molecule you eat, but you can improve very quickly by cutting out the big sweet treats that stress drives us to eat. The ultra-potent steroid cream/ointment we're all prescribed works very gradually – I didn't really notice an improvement for six months and now at 18 months it's really causing me no discomfort at all. It's there and I get short-lived, shallow flares when I've been upset about something.
A lot of us have taken up Hanny's practice of rinsing with or soaking in water ans a bit of baking soda (bicarbonate). One third of a cup in a bath, a pinch or so in a spray bottle of water and a tablespoon in a basin. Very soothing and healing – really good for your burning. Let your meds soak in for a couple of hours first, though.
Do whatever you can possibly manage to create a barrier between your sore skin and urine. Research has suggested that urine is the reason few men get LS and they're the uncircumcised. Plain old Vaseline works fine – it's oily and thick. If you rinse with baking soda water after each bathroom visit, blot dry and re-apply the goop, it should really help. Some of us use fancier oily balms like organic coconut oil (it has the consistency of shortening) an there's a lot of hype about emu oil, lots of us have tried that.
Of course, wear cotton underwear and never wear tight, non-breathing pants. No soap on your undercarriage at all, ever. So if you have a baking soda bath, don't soap up the rest of your body. Showers are best for cleaning. I use plain water down there, with baking soda – I squat over a basin in the tub. If you want to try something more extreme you could buy a sitz bath so you can sit in warm baking soda water without filling the bathtub.
Do watch Dr. Goldstein's presentation. It's a complete education in LS in less than an hour. The last section is about a clinical trial he's doing around Washington DC, so it doesn't apply to most of us.
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
Hope this helps. You'll probably hear from a number of us regulars. Do stick around as you adjust to this diagnosis.
Hi there,
I cant use the cream, it actually makes things worse for me, makes me feel bruised and sore. I have got relief from changing my diet - (nearly) no sugar, dairy or gluten. I also take celadrin which is an anti inflammatory type med which you can buy on internet/health shop. I also use bleach free toilet paper, dont wash down there with soap just lukewarm water and double rinse all my clothes (knickers, leggings tights etc) in the washing machine. Obviously use a fragrance free soap powder and no fabric conditioner. Really hope this helps, but everyone is different so you have to try different stuff to find out what works for you. Good luck. You aren't alone xx
Hi dani I was diagnosed in July last year. I had the same problem as you.. When I started using the steroid ointment (dermovate ) I my vulva became inflamed and the soreness was worse. So I went to my GP who told me to stop treatment for a few days and just treat the inflammation with nappy cream (drapolene) then try steroid again but use it sparingly just on the areas that need it.. I use a mirror for this.
try not to rub it on the inside as LS doesn't affect you internally. That way you shouldn't get it on your urethra.. I didn't have any problems after that.
However everyone is different so don't hesitate to go back to your doctor if you are still suffering as you may need an alternative treatment.
I also only wash the area with water or dermol 500 lotion as perfumed soaps dry and irritate.
I hope this helps, good luck x
I think you need to copy this to save writing it out again Morrell!
Hi dani
Welcome to the forum. I agree with everything Morrell has said especially baking (bi carb) and water sprays. Has made a huge difference for me. Initially steroid would burn but would settle down after 5-10 minutes. Some of the ladies here have had reactions to the cream. So if it is not settling down go back to doc and check. You may also have something else going on with urethra burning. Try drinking lots of water but I would get that looked at too. Just to eliminate any other issues. Good luck x
i wouldnt think that is normal it should be settling so i would contact him and let him what is going on. i had to try a few different creams before i got the right one i use a brand called Diprasone . try some amolin nappy cream or simalar this gets me through a flare up
hi danni this is my nd message to you my dermatolist told me to put my cream on at night use a warm not hot wet cloth satintypad whatever and dont rub in cream put wet pad on area and sit for -minutes or longer if you can to allow the moisture help absorb the cream i also use a gel steroide called diprasone it aslo comes in a cream but he said gel is better its like a vasaline base so it stcks and abosorbs better after a week i felt heaps better. he also said No very hot baths which for me was a killer because when i come home from work the first thing i do is relax in a hot bath . no soap or perfume bath was or though ifound radox lavennder one thats ok dont what to smell .lol. i hope this helps i only joined this group a week or so ago too and it has helped me heaps thanks everyone
Hi Dani,
Often people find they are irritated by the medium in which the steroid is delivered rather than the steroid itself. It's worth while seeing if you have the same level of discomfort with a cream versus an ointment, and a generic brand rather than a named brand such as Dermovate. Most people here find the ointment best, while my skin won't tolerate the ointment but I'm comfortable with the cream. You could try putting a tiny blob of vaseline round the urethra to protect that area before you apply the steroid to the affected areas. keep trying and you'll find a combination that will suit you. It's really worth while persisting with the steroid, it seems to be the best way of controlling the condition.
Thanks so much for the quick responses. So many good ideas here.
The skin around my urethra is affected as well, it has gone white so my dr recommends trying to apply the steroid cream on that area as well. I'm managing to apply around the pee hole itself. Not easy! It requires more patience but might be worthwhile. I would like to try and persist with the steroid. As someone mentioned it is the best treatment to control this. And will try to incorporate some lifestyle changes as some of you have mentioned example regarding diet and certain products to soothe the area.
I already suffer from health anxiety so when I was diagnosed with this I was in a complete panic. Now I'm thinking what if the steroid doesn't work, then what? It might turn to cancer etc etc. Such a horrible feeling. But it helps having forums like this for support and to bounce ideas off each other.
As long as you see your doctor regularly you needn't worry about cancer. Being checked for VIN twice a year prevents surprises.
The term Vulvar intraepithelial neoplasia (VIN) refers to particular changes that can occur in the skin that covers the vulva. VIN is not cancer, and in some women it disappears without treatment. If the changes become more severe, there is a chance that cancer might develop after many years, and so it is referred to as a precancerous condition.
And even then it's squamous cell carcinoma – my sister ignored vulvar itching for years and ended up having surgery to remove a swath of her vulva. Twenty years ago no further proble. And she's a smoker.
So, the last thing I worry about is cancer. I just want to be able to pee if I get to be ninety.
Hi Christine, That idea of sitting on a wet sanitary pad is really good idea for softening the area. Incontinence pads have a protective layer that would stop you getting too wet. I might give that a try in the day time if I feel the need for a treatment. I use a sitz bath at the moment but that is not always convenient. Particularly if away from home on holiday.
Thanks Morell for the comforting reply. I have been on the steroid cream for a week now. I'm expecting to see and feel results already - that's probably too soon right? I still have some soreness and mild burning - to varying degrees throughout the day.
How long does it usually take for the white patches to fade? I have some smooth patches but also some that feel slightly rough and thickened. I have heard 2-3 months up to 6+ months. I guess it depends? I have been absolute basket case since being diagnosed. I spend so much time in front of the mirror everyday looking to see if there are any new white patches. The more I stare the more I see. All this stress probably isn't helping my situation either.
Claire - you mentioned that you can't use the cream. Did you switch to the oinment or are just relying on diet/other methods to keep things under control?
Pauline - I've been told to use it sparingly. I guess I always fear i'm not putting enough. I think I may apply too much sometimes which then causes even more discomfort.
Dani, I worried I wasn't using enough, but then I read we use 30 to 60 grams in a year. I used a 50 gram tube in my first year, so I knew I was fine. Better to err on the side of too sparing with topical steroids.
I'm just now at 18 months really feeling it's doing its work. It's slow, so that's why managing our own emotional state and avoiding too much sugar become so important in the interim.
Rather than looking/worrying so much, you'll feel more 'in control' if you give yourself a bicarb water rinse (a pinch of baking soda in a small squirt bottle of water) after each time on the toilet, pat dry and re-apply your oily balm. That really should help the soreness.
My LS manifests in three or four styles just like yours. Thick and bumpy at the front, white and prone to tearing in the middle and red and burning around the back.
Try and regulate what you eat so you're neither constipated nor having really runny poo. Both make our perianal area worse.