Been using steriod cream for over a week and swelling has not gone down.

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

think

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

Trying a catheter with the good guidance of a nurse, first one was too big, a smaller/thinner one could go into the pinhole that's now left, but could not go any further because the pin hole does not line up with the urethra.  Surgery will be the only option.  But I don't know what that will look like yet.  Another doctor appointment to go.  On the advise of the specialist -  meanwhile use Premarin to make the skin more flexible.  (conservative thought, but what option is left?)  I'll do that for now.  

Now that this option has been unsuccessful, I'll say what my sister always tells my mother who has intersticial cystitis and would love a permanent catheter (or a bag!). My sister's a registered nurse and reminds us that any hardware that penetrates the body is a pathway for bacteria.

All my snooping on the internet since my diagnosis indicates that your situation often requires surgery. They generally say this in the context of discouraging the idea of surgery for sexual purposes – they seem to agree that the only good reason to do surgery is if urination has become impossible.

So, again, the decision has made itself – nothing to second-guess.

We're here for you.

And Morrell - my questioning was already the same.  (pin hole probably not lined up) But then again, I'm not a trained nurse or anything, so they may know more than I do.  At least that was my reasoning prior to the visit to the clinic. Kid you not - the nurse didn't know what LS was.  So have done my best to inform them.  There was also a nurse in training - I grabbed my chances and told her all I could tell at that moment.  And encouraged her to study the subject some more.  However, they did their utmost, doing the best they could.  I'm not talking them down.  Just telling you that there is a lot of educating to do regarding LS.  

Thanks for all your support, everybody.