Lichen Sclerosis and Thyroid problems

Hi LS sufferer

So sorry you had a bad time with your GP and the blood test

It seems that you need to exaggerate your symptoms to get noticed nowadays and of course they are always looking to cut costs. But still, at least you will have one, however belated

and there will hopefully be one less thing to worry about for you. People swear by Estrogen and Testosterone cream in America, but altho GPs here will sometimes allow Estrogen, there's no way they'll prescribe Testosterone. I would strangle the lot of them but - heyho - we need them!

Take care

Annie

Hi Tracey

I too am really depressed today, I have been following the routine to a letter, the 2 raw patches are no better, in fact no change at all, and this morning, well hit me with a double decker bus, I now have a very red collection of spots, is the best I can describe it as, up at the top near the clitoris, .the first time ever that, that area has been effected. Haven't used new ointments, haven't eaten any of the forbidden foods, in fact I have hardly eaten anything. I am at a lost as to why this has started now, .....if only there were a slight improvement, at least it would give me some hope.....and still no word of an appointment at a Vulva clinic...so rock bottom today, I can only hope tomorrow is better........

Lorna xx

Hi LS sufferer

So sorry you had a bad time with your GP and the blood test

It seems that you need to exaggerate your symptoms to get noticed nowadays and of course they are always looking to cut costs. But still, at least you will have one, however belated

and there will hopefully be one less thing to worry about for you. People swear by Estrogen and Testosterone cream in America, but altho GPs here will sometimes allow Estrogen, there's no way they'll prescribe Testosterone. I would strangle the lot of them but - heyho - we need them!

Take care

Annie

Hi Lorna

You sound very stressed. Could that be the problem?

Are you using steroid cream? A good soak in Epsom salt bath is good and make sure you get rid of any traces of urine after a pee. So sorry you feel bad. But it will get better, promise!

Annie

Cheers for that Annie, Yes I am stressed, in the midst of selling my house, I am using Dermovate and I do make sure that I "wash" every time after a pee. I just cannot rise above it today, I have put a smidged of Dermovate on all "bits" and can only hope tomorrow is better, I was only diagnosed approx a month ago, so I guess I am still trying to come to terms with it....

Thanks for caring...it helps

Lorna xx

Hi Lorna 65 and LS Sufferer

I'm so sorry you're feeling down. It's rubbish isn't it? not only do you feel sore and miserable you then have to convince an unsympathetic doctor. Been there too. Lots of us have. You'd think they should know a little bit about LS but so many of us have been palmed off as Herpes/Eczema/hypochondriac. We're all there with you sending good wishes and support.

My doctor also didn't want to give me blood tests. They came back negative and I could hear the 'I told you so' in her voice, but who cares, at least I'm not thinking 'what if...?' any more

She also wanted to manage my LS herself and I had to insist that I saw a specialist who gave me completely different advice. To be fair my GP was following the clinical guidelines to the letter, she even gave me a copy, it's just that they were wrong. If it's any comfort once you've had your appointment and are in the system it's out of you GP's hands and you see specialists instead.

Apparently there are health implications with oestrogen/testosterone. I read that we don't use it for a reason but can't remember exactly what. Just felt that I wasn't sure I'd want to do it anyway after reading that. Dramatically increased cancer risk possibly - something on that level. Please don't take my word for it 100%, just trying to remember what I'd seen.

In Italy there is a stem cell treatment that seems to have good results for anyone with a spare few thousand. There is a discussion on the Comfyskin site with someone who had it.

Lorna if you've got spots and sore patches that won't clear up you really need to see a specialist sooner rather than later. Is your GP any good? can you hurry up the appointment with the specialist? Or at least get a GP appointment to check it soon. you must be feeling so uncomfortable, do insist that your GP speeds things up for you.

I hope all of you feel better soon, it's like living with waves isn't it? up and down all the time.

Here's hoping for an 'up' soon for all of you

Sighs

I will check that website thnx for giving details. I can just type out the content of the advice sheet the Vulval Dermatologist gave me. Should have time to post it on here tonight. Personally I find Oilatum Gel better than aqueous cream. But I use it last before getting out of shower because it makes the surface of shower very very slippery. As ive stated before, after a few days use of epaderm after each wee....I get a bit sore. Should I perhaos just apply it morning and night? Anyway now I have this new emollin spray I think I will just stick with that but waiting for my gp to add it to my repeat subscription. Ive also had to be insistent with my gp. But if mine had refused to do basic tests which could help find a possible contributing cause or eliminate it as a contributory factor I would complain to the practice manager. Many years ago I insisted my gp refer me to a specialist about something my gp was trying to treat for about a year. One appointment with consultant and she found cause and it was cured with one 7 day course of tablets! Yet for a whole year gp was only treating symptoms. It seems we have to be very proactive with our health issues as far as many gps r concerned. One amongst many reasons must be the fact that they have so much work to do. My gp works very very long hours and also does minor surgery and some out of hours work at the local hospital. Im sure he never sleeps! Tigger.

Hi Ladies. I haven't contributed to the discussions for a while but I've been following them and finding them so helpful. Just knowing that the things I'm thinking/feeling/putting up with are being felt and understood by you all is sustaining and comforting. I know that sounds awful but I know you all know what I'm saying is that it helps me to feel less alone. So important as you can feel so alone at times, so thankyou all for just being there.

Hope you are all ok. Hang in there, 'cos we'll beat it all together eh?

Curlytop xx

Morning Girls,

I hope you had a good weekend, mine was quite busy but for all the right reasons so quite enjoyable, but......I'm paying for it today, poor diet, food on the go, wholemeal bread, etc, etc .....= Aaaaargh!!!

My back passage where all my really bad scar tissue is has ripped to shreds, so lot's & lot's of Tea tree oil today, Thank goodness I work on my own, the office smells like a "tart's boudoir". Sort of "Enter at your own Risk" today due to the strong smell of the oil, I know it's not un-pleasant but could be to people who aren't used to it.

Hi Lorna

Have you managed to try a little tea tree oil on the raw patches?? you say about very red spots, I have lot's but around my back passage, they seem to be getting a bit bigger but luckily they aren't sore, sitting at work for 11 hours probably doesn't help, especially in my horrid company issue work wear trousers .

All around my clitoris is whiter than white & can still be quite itchy, but I find the Emu oil helps to soothe & keep the itching at bay, wouldn't hurt to try tea tree oil,....But don't make my mistake, dilute it with a drop or 2 of water, I put it on neat, it was o.k it didn't burn or anything horrid happen, but it was a strange tingly sensation not uncomfortable but it did help massively. I know you are waiting for your appointment at the clinic, I've got my date at the end of September, I thin we were diagnosed around the same sort of time, If you haven't heard by the end of this week I would call your Doctor & get her/him to "G" them up a bit.

Hi Bridge, thanks for your thought's & best wishes, it really does get us "newbies" through the day, knowing that tomorrow will be a bit better & that we will cope. I did read the article about Stem cell treatment, it certainly does sound promising, but the dreaded BUT....the cost, about £5,000. If it were guaranteed to work, I would get a loan & go for it, sadly I don't think any of us are lucky enough to have that kind of money "stashed" under the mattress are we !!

However I am feeling more positive today, even tho' i'm suffering due to my own stupidity, but i'll learn from my "Oooowie" mistake to stick to a good diet & not to race around like a raging weirdo on the back of my partners new motorbike etc, etc, It really has been a good kick up the backside for me & a wake up call & made me realise that I can't cheat myself with a quick & easy sandwich for lunch, or an extra coffee when I fancy it. But i'm determined to have a good day come hell or high water.

Thinking of you all girl's, odd thought.... I wonder where we all live, we could organise a Christmas LS function for the LS dis-functional gang get together. Blimey the menu would be rubbish hahaha xx

Hi ladies,

Just come back from Tuscany, where it was blazing hot. I spent a lot of time inside the apartment, as my skin goes to pieces in the sun! First few days I went on a rigid diet and the LS was pretty non-existent, but just one glass of wine and nightmare city all over again! Anyway, I am worried about LS sufferer (only just read all the messages, as I didn't have wifi over there in Italy). I know so well how you must be feeling. I got treated like a hypochondriac at my last surgery, who never knew I had LS. It is bad enough to suffer with this ghastly disease, more so when it is not recognised and you are treated like a waste of time. Please hang in there, as I know things will get better for you and eventually they will understand what you are going through. I have a super doctor now, really sympathetic and specialises in skin!! Perhaps if you pestered a little bit, they might put forward your appontment???

Hi Lorna, sorry about the spots. The steroid cream should help, but it will probably take some time for them to go. Do you see a dermatologist? They are so much more understanding about what we are going through. Good luck and hope there is an improvement soon for you.

I like the idea of all getting together. Surely we could arrange something to suit everyone. I live in Hertfordshire. What about all you others?

Horses

Hi all I hope you're all doing OK. Things have been a bit better for me-the initial shock has given way to 'let's see how we can cope.' Not sure how things will progress but at least we're functioning better day to day. I've just received my Femmax set through the post-wish me luck ladies...! I'm in the South Wales area BTW x

Hi DLB

Good luck with your Femmax set - if we get enough people together, perhaps we should head for London and meet up there?

Horses

Morning Girl's,

Glad to hear that we are all "plodding" along & managing to cope. I've learnt my lesson in stupidity & am back to eating a sensible diet & my one cup of morning coffee, (should know better at 46).

Sorry to sound so ignorant girls, but what is a "Femmax Kit", because I haven't been to a specialist yet i'm still a bit "green round the gills". Can someone explain what it is & what it's for.

I know they say a little knowledge can be dangerous, but I feel if I know some basic's I won't feel completely useless & stupid when I go to the clinic next month. It's nice to have an idea what they are talking about & I won't sit there with a completely blank expression on my face (hahaha).

I live near Oxford, Sound's a little odd, but I would love to meet up with you all, just to say a MASSIVE thank you to all of you for your help & support & getting me through everyday. The knowledge I have gained because of your experiences has been incredible & I don't think I could have coped anywhere near as well without that knowledge. Thanks Girl's, Trace xx

Hi Trace,

I don't know what a Femmax Kit is either!! I am definitely intrigued!

Oxford isn't too far from where I live. So far we have Herts. South Wales and now Oxford. Let us see if there are some more and we could all arrange to meet.

I am, however, off to Italy with my daughter's family at the end of next week and will be away for nearly a month. I hate being cut off from you all, as there is no wifi. I did manage to go to an hotel one day, but I don't have transport either, so have to rely on someone driving me there.

I couldn't have survived without all the useful hints and help I have received from all the people on this site, so thank you one and all.

Wen

Hello ladies - sorry about the mystery!

It's a set of dilators - it actually mentions LS on the instructions - that made me feel better as it's otherwise such an anonymous condition. They're to try and help with the atrophy. Not sure if they'll help but will keep you posted.

Hope you all have a great weekend x

Emis Moderator comment: I have had to remove the specific link as we do not publish links to selling sites. Users can Google Femmax dilators UK to find this or if they want the specific link please use the message service to ask for it.

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