I need advice!

Hi there Winnie58, I have just read your posting and it brought back memories for me. I blamed my husband, I thought I was allergic to his sperm as I was always worse after intercouse. LS is worse when stress is present and I don't know anyone who hasn't been stressed moving house. The problem with LS is we may not have all the same symptoms, I didn't have white patches like others ,or the paper cuts you have. My tissues would swell ,be bright red and be on fire. I had problems for years and I had never heard of LS. I lost count of the different docs who looked at me and armed with a different pessary or cream hoped this one would make the difference. I went to the hospital with an entirely different problem ( my womb ) and the gyne asked me if I was having any other problems. He refered me to a vulva clinic. Does your nearest hospital have a vulva clinic?

Don't be fobbed off, if you have LS you won't get relief until you get the right help for you. If you haven't got LS at least you can move on and find out what is upsetting you. Good luck I hope you find your answers. P.s I did find I was allergic to my lubricant!

Thanks so much for your reply. I have now called an LS helpline I found online and asked if they could recommend a good doctor, which they did immediately. She's a vulval dermatologist so I guess if anyone can diagnose it, it will be her! She apparently has a lot of experience in diagnosing and treating LS so if anyone else on here would like her details I'd be happy to pass them on once I've seen her. Thought it was going to be a nightmare of referrals etc to get an appointment but with one phone call I'm seeing her in 2 weeks :D

One thing you said did make me question whether I have it, which was that I wouldn't get relief without treatment. The odd thing with whatever I have is that I do get relief, probably more than I get symptoms. I seem to get 'flare ups' for anything between 3 days and 2 weeks but in between these times I have no symptoms whatsoever and feel completely normal. Also, the first episode I had went from having nothing at all to excruciating pain in less than 24 hours, lasted a week and then disappeared as quickly as it arrived with no treatment. Has anyone had anything like this? My doctor is adamant that it's an allergy but unless I'm allergic to water, I don't contact anything else, I use KY jelly but have had episodes when I've been away from my partner.

Whatever this is, LS or not, it's rubbish and my absolute sympathies go out to people who have been suffering for years, I've had it on and off for 5 months and I've more than had enough!

Hi Winnie58, So pleased you have an appointment with a vulva dermatologist , I had a vulva biopsy to verify it was LS. I was about 33 when I started to have problems, I would wear trousers all the time and slowly I started to prefer skirts. I too didn't have problems all the time, I thought it was thrush . I noticed after a period it would flare up, or a stressful time (like packing up for a holiday with two children and then the long car journey ). Slowly over time the flare ups got more frequent. I gave up going to the doctors ,I thought I had a mental problem as all swobs came back negative. You are so lucky to be so informed! I was 58 when I had my biopsy. I have a great gyne, he has given me my life back . I have a wonderful husband with whom I can now have pain free intercourse with and very little after effects. Keep a diary and note down everything, you may be able to stave off a flare up if you can see a common denominator. If you don't have LS and I hope you don't you may need this information. Just to say it was KY I can't use. I use Astroglide Gel it is very thick , it has to be the GEL no other in the range. Keep us ladies posted on how you get on. All the best.

Thank you so much again for your advice, can't believe how long you had to wait to get a diagnosis! Really pleased to hear you have a good doctor now and that you have it under control. My biggest fear since I've been reading up on this is the effect it can have on sex-life and relationships, being 25 and in a fairly new relationship I certainly don't want it to be over just yet! There are so many horror stories but I guess those who have it well under control don't share. Nice to hear from someone who is coping

I have asked a dermatologist for a biopsy and he did agree that it would help with diagnosis but because I don't have an obvious area of 'different' looking skin or really any inflammation, he would just be blindly taking bits of skin and hoping for the best. To be fair to him, he said he'd do it if I wanted it but that he could quite easily get a false negative by taking it from the wrong site and the pain would be for nothing.

One thing he did suggest was that certain oils like almond oil and emu oil can really help, have you heard of this? Think I might try it in the meantime before I see the vulval specialist as I don't have anything to lose. They're reluctant to prescribe steroid creams until they've investigated further because if the skin is thin for a different reason, steroid creams could make it worse. At least they are listening now, reading up and going in with s bit of knowledge has helped me to get taken seriously and seems to have stopped them fobbing me off! They've done some patch tests this week to check I don't have any allergies to any of the creams they may later prescribe which is very sensible of them! The fact that my back is strapped up with patches to the point I can't bend is certainly distracting from the other pain at least!!!

So pleased the doctors are doing tests on you, although you are uncomfortable it will be worth it. Going back to your symptoms, tearing and itching ok, but where abouts is the pain. Also have you had children or any op down there. There are lots of things I avoid ,sitting on leather or plastic seats, tights, nylon underwear, indulging on chocolate and alcohol, not drinking enough water,baths, soap or gel, limited sex, swimming pools and the big one stress. Sorry I keep changing the subjects its as I think of them. Now for oils, go onto a site comfyskin they are dedicated to LS and you will find alsorts and more. I have tried most ,almond in the bath and emu oil straight on the skin. Both gave me a degree of comfort, I would say we are all different, only try one product for a while, mixing them you will not know which one helps.

No children (but certainly want some in the next few years!) and no ops. When I said pain, I meant more 'sore', kind of a raw feeling. The thing that's odd is that my symptoms certainly don't coincide with anything I can notice. I went on holiday about a month ago and ended up doing everything that should be bad (swimming a lot, sweating a lot, lots of sex, drinking wine) and had NO symptoms at all, in fact I felt completely normal and was for a month after. I thought if anything was going to flare things up it was that, but nothing. Then out of the blue (a month on) had sex as normal, nothing rough, plently of lube and I was covered in tears again but no itching and no pain other than a bit of stinging. To be honest I haven't had any itching for a long time, I got it before I got the tearing and it's almost like one symptom has replaced the other. The tears take about 3 days to heal but then I'm fine again. It mostly seems like the skin there, although visibly normal, is just too thin but never has been until the last few months. I was looking up reasons for why skin would become thin and came across LS in my search which is why I asked about non-classic symptoms as no other conditions list tearing as a symptom. I'm going to give the oils a go and see if they return a bit of moisture and stretch to the skin.

The only other reason my skin would be thin was suggested by my housemate but when I mentioned it to the doctor she just laughed and said it was silly. My housemate pointed out that I am quite obsessive about washing and she's right, I shower a lot for a long time and our shower head is, well, powerful. Although I use only water, no soap, it is a jet of water. This shower is new, as I said I moved house just before I got symptoms. She reckoned, repeated washing with powerful water could be enough to cause skin damage like when your hands get dry from over-washing. I'm not convinced as I don't have symptoms all the time which I thought I would if that was the case but I'm cutting out the over-washing as well in the hope it helps.

As for what I've read about what causes other women's flare-ups, I don't seem to get problems from sitting a lot, wearing trousers, I go to the gym in very tight trousers a lot and if anything exercise makes me feel better. Diet and stress (which go together for me) definitely coincide with problems but my problems are mainly induced by any poking around down there ie. sex. I've looked a lot into vulvodynia but nowhere have I come across tearing in the symptoms.

It's so good to be able to talk to someone about this, I've tried with a couple of close friends but the faces they pulled suggested it was too much sharing! LS or not, it's good to know there are people that understand the symptoms!

Short on time, did you have the problem befor you moved house.?will blog tomorrow.

No, nothing. Never had a problem before in my life. Started about a month after I moved in and went from nothing to extreme in 24 hours, certainly not a slow developing problem!

It would be wonderful if you haven't got LS, you are definately not running a normal course. When I go on holiday my LS is definately quieter and more comfortable. I put it down to lazy days. Thinking of you and moving house with a powerful shower. I live in a hard water area, also we were one of the first to have floride in our water. It might be worth a bit of investigation. You may have come from lovely soft water, its worth a go especially when you said on holiday you were fine and doing all the wrong things! good hunting.