How do you cope when you're out and about?
Posted , 7 users are following.
I don't have LS, but do have vulval lichen planus. I've found such a lot of helpful information on this forum that I hope you don't mind me asking a question.
I have a routine at home when I go to the loo. I use a water spray after weeing, dry, then use an emollient. For the first time in ages I'm going to be out this weekend and wonder how others manage when not at home. I'd be grateful for any tips.
0 likes, 13 replies
sue162 Cheetah
Posted
Hi Cheetah,
I remember you, did the gp think you had LS and how they've told you it's L P instead! I've probably missed updates from you.
i don't do the spraying touch wood I don't have to but one thing I do is carry spare pants in hand bag and change them when out and about or away as I do suffer incontinence a bit, used to wear pads but have been a year without them as they told me to stop wearing them x
Cheetah sue162
Posted
Hi Sue. Yes, that's right. The GP was convinced it was LS, but the biopsy came back as 'chronic inflammation'. I was then told to just use Dermovate when I was itchy. Not very happy about this, so saw another GP and asked to see a Dermatologist. She said the first biopsy result was 'rubbish' and arranged for me to have another biopsy and this showed LP. So, I feel that I've got a proper diagnosis now - after two years - and am now under the Dermatologist, who is a vulval specialist. What about yourself? The last time I spoke to you you hadn't got a diagnosis either. Have things improved since then?
I've stopped wearing pant liners, too, and am managing OK, but I do find that urine makes the whole area sting, which is why I've been spraying water, then using emollient after I've been to the loo. x
sue162 Cheetah
Posted
I'll message you later, I typed a long reply and the b.....y internet went off. X
kathryn07219 Cheetah
Posted
Hi Cheetah. This isn't specifically a reply to the "out and about" query but I am sure it will help nonetheless. I recently picked up a tip on this forum which is most certainly working for me (after 4 years of itching due to LS rather than LP). Virgin castor oil - bliss. Somebody posted a recipe to make up a bottle of 4 tablespoons of the organic virgin castor oil with 1 drop of lemon grass essence oil and 2 drops of lavender essence oil. I ordered the oils plus a dropper bottle but the oils arrived immediately and I am still waiting for the dropper bottle. So, in the meantime, and as I was suffering horrendous itching, I just gently applied a drop of the castor oil, rubbing it gently all over the vulva. It has been marvellous and I have not had any itching recently. The castor oil is very thick and so doesn't drip and is extremely easy to apply and doesn't wash off quickly when wet. It may be that you could decant some into a small plastic bottle (eye drop bottle?) to carry with you. It is most definitely worth trying.
Cheetah kathryn07219
Posted
That sounds really interesting, Kathryn, thank you. I'm not sure if you're in the UK, but can you tell me where you bought all the supplies from?
kathryn07219 Cheetah
Posted
sue162 Cheetah
Posted
It's a good job you were able to have a biopsy with someone else. I wonder what the dr thinks who adamantly said you had LS in the first place and is wrong. It's good you have met someone who is willing to help you a lot of that is personality based I think in getting to the bottom of problems. What do you use to treat LP is it a steroid still or will it go on it's own? Mine came back inflammation and they left it at that. Wouldn't even entertain keeping a yearly check on me so I go to the GUM clinic every six months for her to check things are ok. I find them lovely there. My white is now pink but I did wonder if I had LP as well and still don't know what they tested in the lab when they biopsied. I am still red not as sore since dermovate, YES moisturiser and no pants in bed or liners. Someone has stolen my mega comfy bike seat, I can't believe it they pinch everything that seat really helped me as well. Hope you continue getting better and I'll keep reading your posts x
Cheetah sue162
Posted
Hi again, Sue. I actually saw the GP last week and mentioned that I'd had a diagnosis. He didn't say anything - maybe he'd forgotten he'd thought it was LS! LP is just treated the same as LS, i.e. Dermovate and lots of emollient and I'm following a regime given to me by the Dermatologist. Apparently, LP can go on its own, but when it's in an area like the vulva it tends to be more persistent. I know I've had symptoms for at least two years, so I'm not expecting it to go overnight! To be honest, I think it will be a case of managing it in the future. It has improved from earlier in the year, but there are two areas of inflammation that have been there from the beginning and they haven't really changed.
Pleased that you've got somebody good to keep an eye on things for you. It makes all the difference. I still don't think it's good that they haven't been able to give you a positive diagnosis, though.
How awful that you've had your comfy bike seat pinched. I hope you can get another one. Take care of yourself and message me any time. x
Larelli56 Cheetah
Posted
Sorry to hear about all the problems you are having. I have LS and need to find a good bike seat, what make was yours? Now that winter is about to start not sure how I am going to cope with no pants and a skirt.
sue162 Larelli56
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sue162
Posted
Gillian1956 Cheetah
Posted
Hi can you tell me your symptoms of LP I've had two biopsys done and the first was rubbish the dematolagist did another which she said was not very good sample but she said it was LS but I'm doubtful it's LS I get very sore and red and some itching but not to much I don't have white patches but I get splits near the vagina opening and there is some shrinkage
ElleF Cheetah
Posted
Regarding out and about. I always have a small (trail size) container of emu oil in my purse. I tried other emmolients, but I find emu oil the most soothing and non staining of clothing. The bottle I have is convenient and doesn't leak. I had problems with oils leaking or messy applications when not at home. I used to carry about a small spray bottle when things were bad. It means having to be organized and ensuring you either have a spray bottle that doesn't leak stored in a plastic container or fill it up each time before and then pour out afterwards.