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Hi all 2nd post here. Apologies in advance. In my previous I told you guys how some Drs have said I had LS and one Dermatologist has said it’s vulval eczema my GP who I trusted had sided with the dermatologist and decided I am paranoid regarding how the dermatologist actually treated me (he weren’t even there) I have recently found out despite the biopsy results having not come back yet has put on my records that I have vulval eczema surely they can’t do that until my biopsy results come back? Dr G is saying that well it must be eczema as she would know what she’s talking about, this is the woman who was supposed to take a photo of the area for comparison she didn’t do this. This is the woman who said I was too young for LS, and who said I should be greatful she thinks it’s eczema as “LS is a serious condition you know” 4 Drs I have seen thought it was LS. I am changing Drs but I am waiting on biopsy results first as they can be hard to chase. Drs are annoyed that I won’t acept eczema as my diagnosis but the LS signs are clear as day. Please help guys I am becoming more angry and distressed I am beginning to be made to feel it’s all in my head.
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I received a portal message saying “ your biopsy results are in, there is no sign of cancer, congratulations, hope to see you soon”. So I called and said “ okay, what do I hv?” And a NURSE attempted to read the report to me over the phone! When she got to LS and no follow- up notes, no prescription and no help, I knew I was on my own!
Finally seeing Dr to go over report this Friday - 5 weeks later! This site saved me!
Get results and get going!
That kind of behaviour from the Drs is unacceptable! Poor you. The dermatologist obviously has no clue. It is not uncommon with LS among young women and also children can be affected. LS can be difficult and frustrating but I would nevertheless not call it serious. It is not a life threatening disease. With that said I hope your do not have LS but rather something less chronic. However, if it is LS, you will learn to cope with support from a real dr. Hopefully, you'll find the help that you need. Concerning biopsies, I wonder whether one always can trust those? I clearly have har LS since the age of 13 with shrinking and destroyed architecture, scar tissue, white skin etc. Anyway, my only biopsy years ago only showed unspecific inflammation. Strange. My docs still believed in LS though. All the best to you Gemma!
best of luck.
Did you get a biopsy ? You need to do so and stop stressing until the results are back . I don’t that mean I am jut saying that worrying what it is or is not is not helpful. Get and exact diagnosis and then and only then can you and the divtors treat your condition. You areNOt too young to have LS . It may be unusual but I’m 54 and wa diagnosis via biopsy at 22. But I had it for many years and was misdiagnosed and mistreated for years prior to the diagnosis. d for your doctors - believe me I’ve suffered and a can tell you so many doctors have so
Little knowledge or experience with Ls. I read every piece of research and was the first person in the whole USA to participate in the clinical trial for platket rich plasma . I’m one of the first 15 - the very first. Ive spoken with dr Andrew Goldstein when I participated in the trial - he was impressed how much I know . He is the countries leading expert and I jokingly say I’m the second leading expert he went to led school but I have it. Get a precise diagnosis na then figure out the treatment . Don’t let them bully you into a diagnosis. Biopsy hurts but it is bearable and needed. I wish to add I’m treatment resistant to clobatesol and any topical ointments . I’ve had extensiv skin allergy testing done I think for either of the conditions you mention it would be wise to have that done by a dermatologist as solans things may irritate either condition further. I’ve also recently went on an auto immune diet and had food allergy testing done. I am allergic to so many things and yes it’s so hard but ivehad lesions that wouldn’t heal for 6 -8 months and I’m allergic to topical anti biotic ointments so I was desperate to find help. The platket rich plasmahelped )you can read about dr Andrew Goldstein study) but it only lasted about 1 to 1. 1/2-ndky symptoms came back much worse , probably due to my age . I hope I helped.
Dear Gemma - now breathe it all out, again.. breathe and let it all go.
My feeling is what you are angry about is that as a woman, our culture is still so misogynistic and we grow up to be polite etc that we don't call men on it when we hear/see it. You've already got things under control girl, you've done the biopsy you KNOW in your heart that your symptoms match LS. NOw just TRUST your own knowing and move on to one of the doctors who DOES know that this is what you are dealing with.
We don't have to be angry with the people who don't know yet, we just don't want to stress our own systems. I know you know this... falling into anger only hurts ourselves.. keep that immune system strong.
What we don't know yet, is whether any of your new docs know how to TREAT it any better than others, right? Is one of them a functional medicine doctor or naturopath? that is what you'll need... or just start reading up here. we've got lots of things that help.
I hate to keep bringing up the nutritional aspects that I researched and made a list of. I really am not coming from ego girls - it's just that I"ve been bound and determined to understand the WHY and FIX it from that point of view. So no matter how long it takes you to get to a new doctor, Gemma, you still are going to have to take your own health into your own hands. And that mean nutritional supplements that most doctors don't know diddly about. I'll leave it up to you to decide if you want to go the steroid route, I didn't so I don't speak from that aspect. But even if you DO want to try that route, you still will be left with needing to bring your body back into homeostatis (balance) and that means topping up your nutritional status.
I agree with Gemma there is a huge nutritional component to this. I’ve been to a functional medicine doctor who put me on the auto immune diet , ordered food allergy testing and put me on supplements.
Gemma do you follow the auto immune diet protocol?
HI Marci... nancy here. Glad to hear you were abel to get to a functional medicine doctor - it certianly makes a big difference.
I do follow a mostly autoimmune diet protocol, but I do have oatmeal for breakfast. and don't eat as much meat as it assumes.
HEy in the way of gettign to know what functional medical people know will you please give us a list of WHICH vitamins and mineral etc that your doc suggested? THANKS!
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