Diagnosed with LS 2 days ago. So afraid. So depressed. Any info is greatly appreciated.

I watched the entire first half on LS. I paused and came back here when she got to the Thrush. I was quite impressed by her study. She actually put to rest a couple of my worries. I truly appreciate you telling me about it. Thank you

The biggest thing to be aware of is that it's kind of like playing whack-a-mole with a blindfold...there are all kinds of complicating things...I thought I was having a flare, but it turned out to be a UTI, I thought I was having recurring flares and it was an external yeast reaction to the steroid (doc gave me a cream and all is well). I tried borax, but get itchy from it...so now I'm on boron supplements. Turns out vaseline can promote the yeast, while coconut oil is a natural anti-yeast. Olive Oil makes me itch...and on it goes...You just have to see what works. But YOU WILL be fine...

Thank you. I am seeing that. Because, with the atrophy my GYN has me using estrogen cream every night until my next appt. So, this Estrace (sp) cream comes out during the day and it burns like fire. Now, yesterday, I thought I felt "some" better. Today? Nope! Back to square 1. I can see this is going to be a game of cat and mouse.

I am sorry things have been so frustrating for you, as well. I bought some Coconut Oil today. Another forum suggested V A&D ointment,so I bought that. BIG nono . Burned like raging, hot lava. Definite Whack-a-mole.

Thanks so much for sharing this video, SnappyCat. So much I wish knew here 1.5 years ago when I first realized something. oh my. Here in the U.S. clobesetol is not covered by insurance.. so if we can't afford the steep price tag... there goes my "architecture'... oh god if I had even known that simple over the counter hydrocortizone might have saved the architecture...

This video makes me even more convinced that we should we working with dermatologists, not gynecologists... I think I'll ask for an appointment...golly was Dr. Fischer really right about not thinking anything is amiss if we are out of pain... argh... but she is hopeful so that is good.

Nancy, I was prescribed Clobesetol cream and I live in the US , and my insurance covered it. I am so sorry yours doesn't. I feel I'd rob Peter to pay Paul the pharma to get some if they hadn't. I am so sorry.

You know, IFLN, come to think of it, that was a year ago and since then I have changed insurance... I should ask again - thanks for the thought.

Nancy, my BC/BS covers clobetasol. I paid $11 for it in April. Under Tufts the mid strength steroid was $17.

However, the estradiol under Tufts was $350...so I had it compounded for $80.

Now with BC/BS it's $33 .

You really need to get some advice with health insurance unless this is a southern state issue. Do senior centers or local hospitals have health insurance counselors to help you find the best coverage?

Hanny - I'm going to try your method!

Honestly, I would do ANYTHING to regain my former self. I will ear low carb, no gluten, no sugar, you name it, nothing is too much to ask. I took a screen shot of your reply. Am going to start adjusting accordingly to see if these things help. TY, TY .

Hyperthyoid . I do not have nigricans,(i had to just look up what it was) actually, I have only two very small white areas that my GYN was concerned over. Right now EVERYTHING seems to burn. EVERYTHING seems to hurt and EVERYTHING seems out of control. Nothing seems to elevate the pressure, spreading my legs? Maybe.. a little. GyN says pressure isn't associated with LS... but here , I see some say it is. It is all SO confusing to me. super sad face

I believe a bout of antibiotics, then script yeast infection medication... started this. What I DONT get is, I have lived essentially symptom free until then,; first week of june. How can that be possible? For it to have just came on with no warning...

It is all very confusing, for sure. Sometimes something seems to work for me, other times when using the same cream or treatment, it burns. Sometimes the burning goes for days, regardless of what I use. I understand the pressure. I get that too - sometimes feels like a massive ache in the whole area. I know it's depressing - I feel it too when a day goes badly. But when that happens, get on this forum and ask for ideas or support. I do that and there is always someone with a new suggestion - and sometimes it works! I realise it's not perfect but there are a lot of ladies (and men) on here who can help and support you when you feel low.

Dear I feel,

Have you considered trying buttermilk? Whenever I take antibiotics, I always accompany them with 2 oz of buttermilk in the am and 2 oz in the pm to restore the healthy bacterial balance in the gut and elsewhere. I h ave not read where pressure was associated with LS but there is one older lady here who has a lot of pressure.

Have had 3 gyn docs tell me pain like you mention and (I have) is not associated with LS but I think they are wrong. Hyperthyroid CAN definitely be autoimmune which could be the reason for your symptoms. In reading the medical journals, somewhere between 15 and 60% of people who have LS also have thyroid anti-bodies. My doc just ran the test but my results are not in yet. Now 15 to 60 is a huge range but of all those who have LS, more have antibodies than do not. I just started taking collagen peptides because, at the same time I noticed the white spots, the skin on my hands immediately wrinkled. I mean they were with in days of each other. We all lose collagen as we age and LS has some of the same epidermal issues associated with aging so I'm thinking it can't hurt to take extra collagen. Hang In. biscuit

I wonder if some of the symptoms I’m having aren’t the atrophy and not the LS.? I have so many health issues, so many previous surgeries And so much scar tissue it’s hard for my doctors to pinpoint what the actual cause of the pressure and pain is. I think, the definitive answer for me is that it must be the LS because it didn’t come on until the LS came on… So i’m praying if the Cortizone’s and hormone therapy works it will let up too.

I like the idea of the collagen; it definitely cannot hurt. The last time I had my thyroid checked my T4 and TSH were normal but I have been having all the symptoms of an inflamed thyroid so I’ve been thinking for the LS even came on, my thyroid was whacky again.

thank you so much for all the tips and the support I literally can’t put into words how much it means to have found this site .

I hope that I too can take on this attitude of learning to live with Ls in a happirr way. I just feel like I’m caught underneath of a black cloud right now and it’s never going to Lift. that’s the support that everyone here on this site has shown me is literally worth it’s weight in gold…

HI again, Feeling lost Now, smiles. So a few years ago my integrative medicine doc - a cardiologist - told me that most other doctors don't call for the test called TPO at the same time as the TSH and T4. He was furious with his own colleagues as he was describing it to me. I forget the acronym but it means the test to find out if a person has thyroid antibodies. no DUH!

I shared last year that when i finally asked him about feeling low, he immediately ordered that. What was sad is that I had been asking previous docs about my energy level for 15 YEARS and the thyroid test always came back "normal"... so you know the drill - they send you home with no help at all. (male docs oblivious to women).

OH my Gosh how much better I felt once The TPO test confirmed I have antibodies - jeesh. anyway... keep on keeping on, ask for this test... smiles.

i am going to ask my PCA to run those tests you mentioned. Because, exactly how I knew something was not right "down below" even tho they kept saying it was.... I feel the exact same of my thyroid. I NEED answers. While I see at least one other besides me say the feel the pressure, I know its not a symptom of LS . Not to mention I have zero itching or the other "tell tale" signs of LS. I am sure my GYN did diagnosis those white spots correctly but I truly feel something is out of whack, elsewhere and causing this pressure and weird "something in there" pain. Thank yiu SO much, Nancy! Every detail you beautiful ladies give me is one step closer to feeling better.

"DOWN BELOW" Is called the vaginal area, clitoris, labia, and the vagina. Ask your doctor if he thinks you might have LS, and if he is not sure, ask him about a biopsy. If he is reluctant to investigate further, I would suggest you find another doctor!

ifeellost - I too have that pressure feeling intermittently on one side, oddly the side that is less fused. At first i thought it was the seam of my trousers digging in. I also have a 'buzz' but no itching now and no white patches. Gynae diagnosed by examining me, I have never had a biopsy. I am going to request thyroid check - I am in UK. Seems alll our symptoms differ a little. One thing is for sure, we all despair about getting this awful disease. But somehow you learn to live with it. This forum is a wonderful support and way to offload the burden.

Yes, thank you, Jackie. I do know all the proper terms for my female reproductive system. My choice of words vary, at times, some days I say "lady bits". It is what I am most comfortable saying. Also, I already got the diagnosis of LS from my GYN. Just not a biopsy, however, lots on this site are saying the biopsy isnt a sure-fire diagnostic, either. So, I will ask GYN what he thinks at my next APPT. Thank you so much for replying and your ongoing support.

You're right about the support. So many wonderful people have reached out to me and offered not only their encouragement but also so many helpful tips and info I wouldn't have come by if I hadn't joined.

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And, I think my pressure is a bit different than what others, including you, are describing. Mine is more of a fullness inside my entire Vaginal area and the feeling as if there is something actually inside of my Vagina. Which seems quite odd considering LS is supposed to effect the Vulva area, mostly. I am going to have a test run soon to see if my Bladder has fallen.

Thank you so much for replying and being so supportive.

You must be referring to my msg. I have not read of anyone in the forum that has been diagnosed with acanthosis niricgans and Lichen Sclerosus. I would love to hear from anyone that has been diagnosed. The niricgans came first, from my clit to my anus is black, and then came the itching and the lichen's. I had never heard of either one of the disorders. I know that both carry a cancer risk, both together is scary to me. Biopsy should be back in a week.

Aona - Hi! and thanks for sharing your experience. We sure need to add that one to a women Research group or whatever. I noticed a few weeks ago that my inner thighs up near my crotch has turned a sort of smooth discolored purplish... I don't think that sounds like what you've been diagnosed with. but the thought of more skin issues made me go look up the AN.

Have you seen that it is associated with prediabetes?

I then went and did my usual: I entered NUTRITIONAL DEFICIENCY prediabetes....

**** Ya' all want to know what i found? ****

****1. a vitamin D deficiency is associated with a 5X greater risk of diabetes .

And we now know that LS is an autoimmune disease ALSO associated with Vitamin D deficiency.... SO..... Doubly more reason to get serious about Vitamin D3, magnesium, K2, and it's other cofactors for the rest of our lives...

Aona, I hope this makes you feel a bit better and not to worry about that small chance of cancer IF you choose to be serious about keeping up with vit D supplementation.... we can't get lazy I don't think.... we live in CAVES afterall... grin.

Hi Ifeellostnow.

Definitely ask for those tests. I had been getting 'normal' thyroid results back for at least 7 years, before my latest doctor tied a couple of other symptoms in ( including LS) and ran the anti- body test. It came back very high, but like Nancy K B, I had a feeling of relief that at last a reason had been found to explain some of the symptoms.

Hang in there and keep sharing back. You're not on your own. 🙂

Sarb,

You can check your thyroid by putting a thermometer under your armpit before you get out of bed. If the reading is not close to the normal (assume you have celsius) then you can pretty well figure yours is at least low normal, but likely too low for your body to run at optimal levels. The question is why is it not working at optimal levels.....Right there, I suspect, is your answer to this whole mess. biscuit

Am waiting for my antibody test result next week plus antinuclear antibody and sedimentation rate (auto-immune tests). Will post when come in. If yours were really high, what was the range of the test? Are you in the US?

Aona, What are you doing for help? Clobetasol? Estradiol?

Will keep you in my prayers and well wishes.

biscuit

Thanks Eggbiscuit, I will do that when i am back from holiday. As i undestand it, you can have medication for any thyroid problem but that still doesn't address auto-immunity which cannot be treated. Am I correct? I am taking all the supplements Nancy advised and am aware of the importance of vit D.

Sarb,

Yes, there is a "hypothyroidism Type II." It is discussed at length by a Dr. Mark Starr. His research maintains that even if you have adequate blood levels of T4 and T3, if the hormone is not getting into cells, you will still be hypothyroid. Nancy suggested taking 20,000 IUs of Vit D but right now I am nearly out and am taking 6,000 IUs to bring my level up over 50.

best, biscuit

Hmm. Institute of Medicine says 4,000 IU is upper limit. Side effects of too much sound quite unpleasant. I'm taking only 1,000 of D3. Suppose I could double that. I do get sun, so that must account for something.

I based many of my supplements on what the author of Health Hoax (suffered a near total immune system collapse) said he was taking, but not at the same IU levels. Am pretty much going with RDA.

I think the obvious question here is has anyone's LS gone into full remission after taking these dosages of supplements? Frances (the HH author) claims he has healed himself, but I liken his lifestyle to living in a bubble as he has to avoid so much due to sensitivities.

My Traditional Medicine MD advises 2000 IU per day which has been working ok for me with no side effects. I will ask him next time I see him if I should increase the amount.

I'm in the UK. I don't know the exact range of the test, but my doctor told me a 'normal' reading was around 35 and mine was 500.

Beverly - I agree 6000 Vit D sounds excessive. I am taking 1000.

Eggbiscuit - not sure I understand this but will take it up with my doctor. If diagnosed with hypothyroidism and given treatment for it, does that help halt LS or (as I suspect) make no difference at all?

Kat was that a thyroid problem test? And did you have symptoms? If so what were they? I am in UK too and am going to ask for thyroid test.

I'm not clear on what you're referring to. Reading of what exactly? Thyroid antibodies? And which test was it...the TSH or the others mentioned?

Kat, was this test with the reading of 500 a thyroid antibody test, an ANA test or a Sedimentation rate test?

biscuit

In cases where the person's level is below 30, there can be major effects across organ systems. My endocrine specialist (confirmed by several other docs afterward) put me on 50,000 units a day for 7 days, then 5,000 IU a day thereafter for a month. After that month my level rose to 42 (from 22). I felt no ill effects from the high 50,000 IU days but did feel better by the end of that 5 week period.

biscuit

I am glad to hear you felt better and as you explain, your levels were clearly very low hence needing such high levels of D. I just think that some of us might think we should take these high levels without having tests first, which could be foolish.

Hi Sarb,

I learned awhile ago that if you take a vitamin in a tablet you are absorbing 10-30%; 30-70% if in a capsule and likely 70 or more if in liquid form.

Also, many of us take a multivitamin (with D); a calcium supplement (with D) ; fish oil (maybe D) ; a Vitamin A & D softgel and so if we take a D tablet of 5,000 IUs, we absorb a little of it plus a little of the other D in other preparations. Then, if we go outside we can make 10,000 units in a matter of 20 minutes if sufficient skin is exposed. Use of sunscreen will prevent skin from producing D. I think the increased sunscreen use over the last 30 or so years coincides with the drop in Vit D. Then, too, we spend more time inside on devices than we used to. Bottom line: a lot of the D we take gets dumped right down the "turlet," as Archie used to say. biscuit

Please clarify . The level of what? Vit E in your blood? Which thyroid test?

HI Beverly - we have been talking about the TPO thyroid test for antibodies to our own thyroids. If you ask you doctor simply to test your thyroid most all of them will do the TSH and T4 test and nver think about the TPO.

BUT it is precisely the TPO test that anyone with an autoimmne disease of any kind might want to have evaluated. So, bue sure to say you want the ANTIBODIES thyroid test.

Earlier today, Biscuit was giving the result of her Vitamin D test in which her D level was in the low 20s and apparently she got it up to 42 from taking 50,000iu per her doctors instructions. From my reading up, and in consultation my cardiologist/integrative MD... who by the way once he discovered the value of vitamin D has vastly reduced the number of heart surgeries he has to perform! o, anyway, he is ahppy to say that D (along with it CO-FACTORS folks) is helpful and SAFE (along with it's cofactors) up to 90ng/dl...

hope this helps.

"Terlet"....as Ed Norton on the Honeymooner's used to say! Lol.

"TPO" stands for thyroid peroxidase and is the test for antibodies. The $64,000 question is why would thyroid antibodies cause a genital skin problem? Am on the hunt for that.

Meanwhile, I found this short piece. Am going to search for the journal in which it is located. It is only 20 people but sounds interesting.

"In the paper, published in the Journal of Investigative Dermatology, researchers exposed 20 volunteers to a light resembling solar radiation to induce a sunburn on a small patch of skin. They then gave the "burn victims" large doses of vitamin D and followed up with participants one, two and three days (and a week) later to measure skin redness and thickness. The researchers found that vitamin D decreased inflammation, redness and swelling, compared with taking a placebo, and this effect increased in proportion to how much was consumed. D also appears to increase the activity of a gene called arginase-1, which is involved in tissue repair and healing. Taking 50,000 international units of vitamin D—125 times the recommended daily allowance—led to a significant reduction in redness and swelling, compared with the placebo. Those who took 100,000 IU had even less swelling, and those who took 200,000 IU had the greatest reduction in inflammation."

HOW ABOUT THAT????

Ah... fantastic find, Biscuit. GRIn - so NOW you'll safely go back to taking 50,000 iu of Vitamin D3 to get yourself out of pain, right?

a... and read up on my article pathway into and out of autoimmune... and improve if you find out more.. in which I had found a reference to needing vitamin A at equivalent dose to balance each other out of any deleterious effects.

OH and dear LS friends - don't forget your magnesium (highly individual doses per person) . I had to increase my magnesium to stay out of constipation territory and spasms in my toes the other day. It's constant vigilance... smiles.

I have your stuff and a book on autoimmune. I want to digest the Vit D article and post it and then what I think happened today to me.

Yes, magnesium and sufficient water helps. We are all unique electro-chemical factories.

Hi. Yes it was a Thyroid test and yes I had symptoms.

My TSH levels came back borderline, as they have done for years. The antibody test was TPO, where that level is classed as aggressive apparently.

This came about from a visit to a new doctor about what I now know is LS. She spotted my Vitiligo too and decided to run the antibody test. I'm so glad she did.

Everything she told me is supported in an article I'm reading along with my own theory that my autoimmunity may well have been triggered by a chronic virus.

Please understand that I am new to all this too.

There is a minefield of information out there which I am reading through very slowly, with the help of ladies posts on here who are much more knowledgeable. But I would definitely encourage you to push for the antibody test. For some reason a lot of doctors seem to avoid doing it, when it could answer questions a lot earlier. Good luck. Let us know how you get on. x

Kat, I called my GP's office but was told no GP would order an antibody test. Had to be a specialist. My gyn who diagnosed me with LS seems very quiet re thyroid anything. Besides which she is no longer part of the gyn group so I have to wait for her to resurface. I have been on a search for a functional medicine dr, but that is worse than finding Nemo. Many dead ends. My gyn had given me a name but he is no longer accepting new patients, not to mention he doesn't take insurance, charges $650 for 1st appt then $250 a month to be his patient. Concierge medicine. This is all far more difficult than it should be, IMO.

Hi Beverly52. I'm sorry to hear you're not having much luck with this. I am in the UK, so I go through a different system. Therefore I wouldn't know what to advise for the best. I don't know if Nancy or Eggbiscuit can suggest anything? I find it odd that a specialist would have to order an antibody test it there's enough information to suggest it could be the issue. That said, it's taken 7 years and a lot of banging my head against a wall, for it to be tested with me. All I would say, is keep trying. Maybe list everything that supports your case to give you as much leverage as possible. It's crazy the hoops we have to jump through,.....and if we get frustrated by it they put it down to mood swings, pmt, menopause, etc! 🥴

Kat - I am in UK and intend to ask for a thyroid test at my next GP appointment just to make sure I have no issues there (I have no symptoms, but I recall my mother taking thyroxine). However I presume this just confirms we have auto immune problems which we already know. How does it help with dealing with LS? Apologies if I am missing a point here. So confused at times!

Hi Sarb73328.

It is all very confusing and I am still learning myself. I am currently reading articles by Dr Izobella Wentz which are very interesting.

My understanding is..... Hypothyroidism can be caused by Autoimmune disorder, as can many other ailments, Vitiligo and LS included (although LS still doesn't appear to be officially confirmed as Autoimmune, studies do seem to be pointing that way more recently).

The Thyroid antibody test won't confirm Autoimmune Disorder as I understand, but will confirm if your Thyroid is being attacked. A lot of women who suffer from LS also experience Thyroid disorders. It doesn't help LS per se, but rather ties common ailments and symptoms together. If you have other things, aswell as your LS going on, this could be why. You would still need to find something which helps treat your LS individually, but there are also things you can try which may help other symptoms, hence the talk about vitamins, supplements, etc. on here.

I hope that sums it up very basically for you. I'm sure the other ladies will correct me if I have interpreted any if this incorrectly.

As I've said in a previous post, my solution is tackling in baby steps. Whichever issue is causing you the most problem first, and as this is an LS headed topic I'm guessing it's that. Steroid creams seem to be the initial go to. Cutting down sugar, another. I'm still waiting to hit on something that's having any major effect. I'm trying different soaps and basics like that for now and will keep you posted. I have to wait until October for a gynae appointment, so any advice in the meantime is greatly appreciated. 🙏

Thanks Kat. This is pretty much the way I see it too. I will ask for thyroid test in case there is anything weong there - I am surprised docs don't do it as routine when you have been diagnosed with LS. Steroid still the only weapon against LS and I have a careful regime of moisturising and vitamin taking. Good luck with your next appt with gynae.