Reversal of shrinkage/fusing?

susan, I think doctors all treat it differently because the patients all have different responses to the meds we try. Maybe this is the nature of autoimmune disease? I wonder how many studies are being done. Maybe docs are on their own to figure it out because there are no proven cures or meds to slow down the disease. It isn't very encouraging, that's for sure. I'm hoping my gyn was correct when stating that mine was due to lack of estrogen (indicated by the AV, I assume, as no blood test was ordered). In that case I am hoping using the hormone cream will arrest the progress of the LS.

Yes please PM link😘

Write out the link but leave a gap in the words, or write out the "dot" and see if that works. We may have to speak in code somwme way.

You are the 6th person so far wanting it. How ridiculous is it that the moderator blocked it? People should complain to Patient.com. about helpful links being blocked.

In order to send a private message in the future look next to the person's name. You will see a little envelope icon. Click on that.

http://www.caredownthere.com.au/

Hi Beverly, I know the Moderator automatically censoring external links is a pain in the proverbial but this is also for our own protection where the appropriateness of stuff on other web sites cannot be presumed or verified.

However, there are ways and means of navigating round this.  If you have seen many of Nancy KB's posts she uses extensive external links for those posts - so she must have gotten the dispensation to do this.

One simple way of contacting the moderators is to write a simple message then post it as a normal message.  Then, click on the "Report this" red text in the bottom left corner.  Put in what it is you are trying to achieve that you think might be blocked and (eventually) someone will get back to you.

* My Tip for any external links is to draw attention to where you want people to link to and why in the normal text of your message, then, place the http address at the bottom of your message with one blank line in between {as in the case of your last message post on here}

The moderator contacted me once years back about not allowing discussions about healthcare coverage. Too controversial (?)

tracey, thanks so much for posting this. 

I'm amazed to hear you could use a steroid for so long. I recently had a reaction after just a couple of months. Skin turned bright red and burned. Am waiting to hear if the doc thinks I should try again after not using for a couple of weeks.

Someone has posted that olive oil works for her. When I told the doc about it she said it would soothe but not heal. I tried it, but it didn't do much for me re moisturizing. Wonder if these other ingredients would have the ability to heal skin.

Please let us know how you make out!

Tracey I fear you are right  - nothing seems to help with the fusing although when I first started using steroid it did seem to infuse a small area. I have been swabbing with borax regularly as this seems to soothe the area, but have not seen any improvement in the fusing. No one has actually said it can be 'undone' apart from with surgery which really worries me. 

HI Beverly I think that all the freaks and potions we use help to soothe, but don't repair. I also don't agree with some ladies that moisturizing stops the fusing. I am diligent about moisturizing and have continues to fuse. No one has suggested that fusing can be reversed by anything other than surgery and that is so depresing. Having said that when I first started using steroid I believe some of my fusing unfused. Lately my steroid has made my skin very red too, but not sore. I have stopped it again and just keep on with my oestrogen and moisturizers and borax swabs. I am hoping that my last flare where everything started to shrink and fuse has slowed now - it seems to have done. I cannot say what caused that flare - it might have been a short period of stress, but that wasn't severe. I think all our potions help to soothe but none of them will repair what has already changed. I use borax as a swab, coconut oil, castor oil mixed with lavender oil, emu aid, emu oil, calendula nappy cream, aloe Vera gel!! Plus oestrogen cream 3 times a week.  Going back to GP next week. If olive oil no good for you, have you found anything else to use? 

'Creams' not 'freaks'!!!!

No, I haven't used anything else except my usual coconut chilled oil. Assumed I would hear from my doctor's office by now. Maybe one has to be giving birth to be on the top of the call back list. I think I may try that restore oil blend by lifeworks that tracie mentioned. The woman who came up the combination of ingredients has LS and could no longer use steroids. She claims she is reversing the fusing and her doctor is impressed with the results.

In the meantime I also have to figure out how to treat the amorphous infection. Probiotics did nothing. May have to go another round of Flagyl, but can't even do that till doc responds. I really think all docs should be available by email. Calling gets you nowhere. 

Beverly - I think I will try Tracy's Lifeworks too. Anything is worth trying! What is your amorphous infection? I agree doctors should be on email contact. LS strikes so randomly, it would be great to have a quick connection with a doctor. Are you in UK? There is a months delay in getting to see my doctor - a lot can deteriorate in that time. Feel for you.