Before when I've had an outbreak I've got rapidly better once using the steriod cream but this time I'm still sore and swollen after 8 days.The itching has improved but swelling still bad. How long does it normally take to get some real relief? Thanks in advance
Poor you. What cream are you using? I found clobetasol ointment not cream works best. If you have had a bad break out it may take longer to fully heal but you should see improvement quite quickly. Have you had a good look to make sure that all is well? If not it would be a good idea to check it out. The other thought is how often are you applying the ointment/cream. After a break out I will go back to a daily regime for a short time until it is under control. Then slowly reduce treatments back to twice a week.
I hope this helps you Good luck and heal well.
Thanks for your reply Chrisy. I've been applying the ointment twice a day but its made little or no difference. I'm swollen at the top of my thighs too. Think there's something else going on .... The GP had a good look a week or so and said its almost certainly LS and nothing else going on .... Just don't understand why I'm not responding to the steriod cream. I'm seeing a specialist on Friday so hope she'll be able to help. I did have a massive scratching attack in my sleep earlier this week so could still be suffering from the after effects of that ...
Oh Kate do try not to scratch - it is hard i know but fingernails are not always germ free - you may have invited a bug or two to party.
I have a technique that does work for me most of the time - I make myself believe when scratching / rubbing my arm or hand that my undercarriage is being relieved- may be rubbing the chin or cheek - anyway really but thin about the relief you get.
Try and cool the area down, spray attachment on the shower head perhaps - tepid then cool dont want to shock the area and often if it gets too cold the blood rushes back to the area making it nice and hot and itchy once more, dry off with a cool hairdryer go commando for the time being - skirts are a must if so! No creams or nice smellies. Do you have lumps in your groins? - if there is an infection in the area the lymph nodes will be hard and can be felt- just like when you have a sore throat and the nodes in tyour neck are swollen and uncomfortable
Depending on your age and sexual activity you may find the Bartolin gland is being annoying - it is just inside the opening to the vagina- again a hard uncomfortable lump - not associated with LS as a norm
Are you softening the area as Dr Goldstein suggests with a warm bath of at least 20 mins i think he said and then massage in the ointment for a minute and a half or 90 seconds, leave for a while then moisturiser, i use lashings of Diprobase which acts as a barrier to urine too. Keep the urine blood and faecal matter off the skin
I was told it may be up to six weeks for a flare up to be dampened by the steroid ointment, so patience and NO STRESS- Good Luck
Sue
ps Chrisy is right look to see what is happening a big shaving mirror and a good light needed
Typo - Anywhere not anyway
think
Thank you for your reply Suedm and for all your advice. Really makes me feel a bit better that I'm not alone. I am seeing a dermotologist this Friday - one who specializes in vulvars!! I hope that this will be fruitful. I have had a quick look down below but am a bit scared of what I will find or not find! Will report back if the consultant has anything interesting to say which also might help other members.
There are quite a lot of us sadly, so you are not alone. But just a thought, nothing is changed by knowing what is going on. Knowledge is power...always. So don't be afraid to look or to find out. If you know ' your enemy' there is more chance to overcome the problem, any problem.
Lucky you finding a vuval,expert there are not too many around I believe.
write down ALL your worries queries and issues so you can ask them when you visit. Try and memorise them , count the number and mentally tick them off as you ask, Medics don't like reams of paper and sometimes can get testy when confronted by huge lists If yours is friendly then even luckier you
best wishes
sue
I'll be interested to hear what the dermatologists thinks. The only time I've had that kind of swelling was with an abscess right over my clitoris. So, it was a bacterial infection, curable with antibiotics.
Hi Kate,
What you're describing sounds like what happened to me - the globetasol just didn't seem to cut it anymore. I'm on anti-biotics since a short week and the LS seems under control for now. I see anti-biotics as the last resource though. But I had the feeling that I was 'standing with my back against the wall'. Also, Kelly and Marey advised a concoction with turmeric, which probably was of help with the swelling. My bathroom visits are lengthy, but I am able to empty my blatter again. (may have improved because of the swelling going down)
Glad to hear that you are doing better, Hanny. --Suzanne
So glad the pee is flowing, Hanny! Are you back from your camping trip?
Up till yesterday I was reasonably okay. This morning ..... drip, drip. This afternoon I have a doctor's appointment again and we'll discuss placing a catheter. Anyone any thoughts on this 'stage of the game'? Or personal experiences?
Just realized that I've been prescribed Eumovate by my GP and not Dermovate (clobetasol) And I see that its much less potent than the Dermovate .... Maybe that is why I'm not responding. Hopefully the specialist will put me on the dermovate. I've been scarying my self @**!less today googling what can happen. I'm also not sure if I have lichen planus or lichen schelosus and not sure which is the worst to have. Am getting myself in a right tizz thinking I'll never be able to have sex again etc etc. Husband very supportive but some of the stories I've read .... Heartbreaking what this thing can do. Also scared of having a biopsy - makes my toes curl just thinking about it. Has anyone been treated by Cari Aplin in Bath (UK)? out there.
Kate DO NOT BE SCARED!
The chances are your problems are caused by you scratching and settng up a reaction. Ask for the Clobetsol telling the Gynae you understand the implications. IF you can screen print the slides from Dr G's talk print off the relevant slides and show them to the medic- there are the bullet point slides that are useful - dont forget to get ALL his qualifications and where he operates from
Going back to your symptoms.What happens when youscratch a bite/ sting? what happens if you DONT scratch a bite/ sting. If you are like me if if i scratch i swell up dramatically- if I manage to leave alone the bite is a small blister for a few days. so Kate Dont think the worst - think of other possibilities that are far more likely
L Planus can affect all areas of the body - mouths are really grim -no food or booze....painful teeth and gums..... so undercarriages are possbily not quite SO bad....?
Try a vibrator if penetration is a problem!
Thanks suedm. You are great support. BTW where do I find Dr G's talk ...Thx again!
Oh, so sorry Hanny! I wish you well with figuring this out with your doctor and getting some help. Cateters are not fun, but you have to pee! Please let us know what is happening for you when you can update us! --Suzanne
Alan the moderator has the actual link and I never can find how to offer it to others
try LS treatment, but in full all one word prefix dr goldstein no gaps
then the suffix full stop org
hope that gets thro
I keep the link in a text file on my desktop.
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
Well, that was a ray of hope snuffed out overnight. But I always think the best decisions are the ones that make themselves. You'll be our catheter pioneer. If you start a thread about it like 'Lichen Sclerosus catheter', other women at that stage will find it by Googling, I bet they're out there.
Thank you. You are a star, as ever, I am not as sensible as you... I will try and keep the link accessible, if I can