Is CLob safe? your experience

Dear moderator, I second that. You are clearly bias because multiple people have posted about emu x and emu aid and NO ONE removes those. Ever. How about Mona Lisa touch? Why do you never remove that? What about all the many other brand names that people post and you don’t remove those? Note: I am copying and saving this message. Not fair! I think it’s criminal that the moderators feel they can hand pick who’s post they remove simply because they mention a brand that is there to help others. I also am appalled that you take down every post about an amazing product that I won’t name, and that has helped many THAT WAS CREATED BY A YOUNG WOMAN WITH CHRONIC LS. Shame shame and let’s see if you remove this one too - ridiculous 

Maybe it's like cops giving out traffic tickets. They have to meet a quota of "blocked messages". I can't think of any other explanation as it is clear 75% of posts would be blocked if including a product name meant you couldn't post.

Blast, I'd love to know the name of that product, how annoying!!!!! Maybe you can describe ebay its called and we can try to figure it out 😂

Ha, not ebay, *what*

Just to let you know that I have raised this issue with the Moderator - they need to get their act in order, as there must be numerous other Health Conditions on this site where sufferers would ONLY gain benefit from knowing the Brand name and so on of the item that can provide them with great benefit.

We can only see what happens ......

You can always Personal Message individuals - but the whole idea of this (as with ALL forums on this web site) forum is for as many LS sufferers to learn about what precisely others have tried and has provided REAL benefit for them ......

not sure if I got that right so how do I pm you??

found it, but of course, its in america and im in the uk!!

Go to my name and look for a way to write me- not sure but it’s been done before. 

It's OK, I found it. I've emailed them and asked if they can ship to the UK.

Hilarious 👌I think I have it and thank you 😘

Well, if it's the oil you're referring to it has been mentioned before because that's how I found out about it. I communicated by email with the woman who developed the formula and ordered it. Maybe it was another thread(?) There are so many threads with so many people posting it gets confusing. Anyway, I even started a new topic on "using essential oils for LS". A couple of people responded, but now I can't find the thread as there are pages and pages on LS.

I did order the oil and it burned me a LOT. Someone said to be sure to mix it before applying. I sent a message to the company asking what oil I should dilute it with but never heard back. So I tried applying coconut oil first, then just a tiny, tiny bit of the oil. Did that for 1 1/2 weeks then stopped because the skin was feeling sore and hadn't before. BTW I had asked my gyn about it first and she felt the tea tree oil component was probably too strong to use. Something was, because now that I have stopped using it I feel fine. I went back to my twice a week of a tiny amount of steroid.

The oil is  restore by lifeworks skin essentials. I think in another post I mistakenly called it lifeway. Again I learned about it from someone's post, so that got through. I personally can not recommend it though. Wasted another twenty eight dollars. Maybe it's more appropriate for severe cases.

Hi all,

Re moderation - no posts have been deleted by any users in this thread. Posts will get sent for moderation when brands etc are mentioned. This is because we have so many users/spammers trying to use the forums to advertise these products. If posts are not "advertorial" they will get approved as happened in this discussion.

If you don't want to wait for posts to be approved you can use the Private Message service to exchange details. Click the envelope next to the relevant user's name.

All users agreed to the T&Cs when they registered for the forums so trying to get round moderation will just result in the posts getting deleted as will name calling and action taken if users repeatedly do this.

I don't know specifics of some of the things being discussed here but it sounds like some of the posts being referred to are "miracle cure" type products. This sounds very much like what I said above - spammers trying to sell products.

If anyone has any issues with this please do not take discussions off topic but feel free to send me a PM.

Regards,

Alan

Wow, a Moderator has spoken.  We must have achieved something by this, at least.

In all seriousness, unless you have been struggling to come to terms with a Condition such as Lichen Sclerosus you would not probably understand the lengths some sufferers are driven to to try and find relief, and an overall betterment of the condition, and the specific symptomology that goes with it.

This condition is INDIVIDUAL to each sufferer!  That means, what works for one person could even cause a worsening of symptoms for another person.

Sufferers are 'stuck' in the situation where, should they approach their regular Doctor, Gynecologist, Dermatologist, Urologist - and so on, often, these professionals do not have the knowledge to deal with the presenting symptomology, nor provide an accurate diagnosis - so following consultation with what most sufferers would regard as 'an appropriate medical professional' they are left completely bereft of information of what they need to do to i.) get relief from, what is often extreme symptoms; and, ii.) put in place a regime of treatment that will hopefully lead to a "cure" for the condition (the Lichen Sclerosus) that they have.

THIS is why users of this forum are basically saying "but have you tried this (followed by the product details, hopefully!) as I have used it and it seemed to work wonders for me?" - time and time again.

PLEASE understand, I probably have had my condition present since late childhood / early adolescence and I am now 63 years of age.  The ONLY thing the medical profession can offer me is a potent steroidal ointment - that even, some sufferers on here would certainly not choose, or want to use because of its potency.

While, yet others on here assert that by controlling what they eat, AND by finding the right balance of Vitamin and Mineral supplements they are completely able to manage their Lichen Sclerosus without the need for topical steroids.

Again however, it is finding this RIGHT BALANCE that is the problematical, because as I say, each sufferer is individual - yes you can implement the same dietary regime, but, the appropriate Vitamin and Mineral supplement balance needs to be found by each individual that best suits them.

Then there are those who still need to achieve a dermatological balance, of applying the right things in the right manner that will give them relief and remission of their actual skin symptomology.

Personally, in the 8 plus years that I have had my condition diagnosed by the medical profession I have yet to find an alternative means to controlling the presenting symptoms that I have.  Do I continue with a potentially damaging potent steroid, or do I continue to try different suggestions that are made right here, in this, "Women's health / Lichen Sclerosus" forum?  What would you do?!

Thus, please understand if we cannot name Brand Names and give Product Descriptions this individual task of finding the right balance remains impossibly difficult.

A solution to this needs to be found, suggesting people are promoting products and services may be commonplace on other forums on this site (and even occasionally here) - but, if we have no information all we have is a continuation of our symptoms, and our desire for improvement and a lessening of our symptomology just does not happen.  We are stuck in a "No Win" scenario, rather than a potential "Win Win!" ......

 

Hi Beverly, not being able to find a particular forum is really annoying on here, especially if you started it yourself.  So there are several ways round this:

 > copy the web address of the page itself - yes, that is the often long https//patient.info ...... one and either email it to yourself, or

 > if you have a laptop computer or a PC / Mac create a little Text file with the page address in it - and as long as you have a filing naming system where you can locate stuff straight away, simply create a folder - such as ' My LS Forums ' / ' My LS PI Responses ' and so on .....

Brilliantly put!

 

Thats interesting Beverly, I emailed the company to ask if they ship to the UK.....no response....but I wonder if its a waist of my money as well.  I have tried so many things, the last being the aloe vera with tumeric oil and ouch, it burned sooooo badly.  Im not sure the essential oil route is best for me.  I am sticking to my mix of borax mixed with yes oil based cream which sooths the itch and stops the soreness.

It sad because we are so desperate for something, anything to work and make it just go away!

Dee can you PM me with the info thanks.....

I must be stupid because I still cannot see an envelope next to your name anywhere to send you a pm....theres no envelope next to your name when I click on your name and go to your profile....what am I doing wrong?????

please hel, I must be so stupid because I cant see an envelope next to the persons name i want to send a pm to even when I click on their name and go to their profile, what am I doing wrong? Thanks

so sorry about the typos!!

maybe if you pm me I can reply?

dee, scroll back until you see a message with the person's name you want to contact that HAS the little envelope. I see one on the message linda sent you asking for a PM. Not all messages have it. I was confused by this initially as well. I don't find ANY sites, blogs etc easy to figure out as they are all different. 

Alan,

Wee Dugee could not have expressed more eloquently. I'm not sure if you actually read every message, but if you do I think it becomes quite obvious that the amount of posts trying to sell a product (as opposed to recommending one a person has used) is miniscule. It doesn't take much to discern between the two.

Over a three+ year period I received one PM from a woman who had devised a product and was selling it. As it happens the product was for a problem I didn't have, but she did. The thread had veered from the original one so I simply responded telling her so and I didn't hear from her again. No harm done. If I had had the problem I may have had interest and been helped by it. Who knows?

This is not to say I want to read through tons of posts with people trying to push products, but really, it just doesn't seem to be happening. Maybe your presence keeps it from happening, but when I see you blocking messages with common brands mentioned (or even a new one) it really seems counterproductive and very frustrating for those of us with health problems that the medical professionals are perplexed by.

I recently read of a new product on this site, discussed it with my dr, sent for it and found it to be possibly more harmful than helpful to me, not that it may not work for others. I posted that info as I think that's pretty important info to share. 

Please let us communicate more freely. We are a fairly desperate group.

Thanks,

WD, thanks. Someone PM'd me about a discussion she had started and I had the same problem. I kept trying and I am embarrassed to say I can't remember how I finally found my own! I am TERRIBLE at technology. My brain just does not work that way, I guess.

Did that, looked for an envelope on my phone and on my COMPUTER next to anyone's name ... Not an envelope in sight! What's that all about then, maybe there's different rules for us in the UK??

This site emanates from the UK. You need to ask for technical advice. I am the LAST person to help with that. Sorry. 

It says "contact us" at the bottom of the page. Start there, I guess.

If someone PMs you, do you get a message that says it's a PM? I just went back over all your posts on this thread to try to PM you, but none of yours has the envelope. That is weird. Could you have some sort of security program that is blocking it?

Dear Moderator- let me assure you that the vast majority of users on here are just scared people who are desperate for information to understand what is happening to their bodies. I am happy to pass on what has worked for me and any research that I hv done. I seek no monetary gain for sharing products, I do use brand names because I believe in the quality and purity of the products I have personally used. An organic pantyliner has no chemicals, no plastic and nothing to aggravate already sensitive skin. A paper-based dryer sheet has mo fiberglass that will irritate tears and open sores, etc. 

I do not believe there are any “miraculous cures”, I am skeptical of the oil mix everyone is all excited about, supposedly from a “ past LS sufferer”, and think desperate people will grasp onto anything. 

I am currently in remission and will be happy to share what I have done and products I have  used and have no alterior motives. I do get frustrated when you stall answers to moderate them, but I do understand why. 

What is the name of the dryer sheets?

Just to clarify a few points raised:

As I stated we have to send brand names to moderation due to users trying to use the forums for advertising purposes. Brands that get sent for mod are ones that have in the past been the subject of such activity. This group is a particular target for these type of users but you may not have noticed because of the very fact we use moderation to try and prevent users receiving lots of notifications for what is basically spam. If users are posting these genuinely they will get approved so will appear on site, usually the next working day if not the same day depending on when posted. If you want to let someone know sooner use the PM service while the post is waiting for moderation. 

deethebee - you are not seeing the envelope next to users' names because you have disabled Private Messaging. You can switch it back on by going here https://patient.info/forums/me/settings and ticking the box "Enable private messaging".

Beverly - if you click on your own name you will be taken here https://patient.info/forums/me - this page lists your forum history including groups joined, all replies etc. If you want to find a discussion you started - in the Discussions section on the page above is a link to https://patient.info/forums/me/discussions which lists all of your discussions started and any further ones you may be following.

You can also click on other users names to see their history if they have chosen to show it via settings. For example when I click on your name I see https://patient.info/forums/profiles/beverly52803-343664 which displays as below (click to enlarge). There is also a link on this page to send a Private Message.

Regards,

Alan

 

Alan,

Thank you for getting me through the weeds. I was able to find it. Now if I can remember it next time will be the test!

All sorted now. I changed my messages in my settings, simple when you know how!!