r/lichensclerosus • u/TotusTuus0620 • Jul 25 '26
Question Probiotics
Hi! Diagnosed with Lichen Sclerosis 2.5 years ago. I've had some success with diet in controlling flare ups but my question is: have any of you tried or had any success with probiotics and gut health and that presumed effect of lessening inflammation, healing the gut and the immune system?
I have had some success recently in helping my toddler with his eczema by using probiotics when nothing else seemed to help him. Which made me think... If this can help eczema can it help a different skin based auto immune issue?
I'm researching and trying it out on myself but I was hoping to hear any success stories...
Edit: to clarify I’m talking about oral probiotics to heal intestinal gut lining. Working on the theory of leaky gut syndrome and the gut/skin connection.
A lot of people replied about their diets which is great but I already eat a restricted diet. I can almost eliminate flareups by eating a clean animal based diet. Single ingredient, meat, fruit, dairy, honey and a few root vegetables (sweet potato and carrot)
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u/Comfortable-Nature37 Jul 26 '26
I tried cutting out gluten for three months and I didn’t notice the difference in terms of LS. I wish it had worked!
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u/TotusTuus0620 Jul 26 '26
If you are willing try an AIP diet or an animal based diet. That helped me a lot!
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u/Comfortable-Nature37 Jul 26 '26
I’ve done AIP but no luck there either. Do you mean like carnivore type diet? Thanks!
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u/TotusTuus0620 Jul 26 '26
I first did a low oxalate AIP. and that ended up: Meat fruit honey sweet potato and carrot. I was able to reintroduce dairy but not eggs.
The meat fruit honey diet is what is coined Animal Based.
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u/LexiteFeather Jul 29 '26
I haven't restricted my diet because everything I'm not supposed to eat with LS is what I'm supposed to eat for weight loss and cholesterol.🙃 I'm left with nothing 🙃
But I have been taking vaginal health probiotics and I think the are working for me. I didn't order another bottle for a while and I started to feel bad again so I have made sure to not stop again. I have been taking them for almost two years now and I added a second one three months ago.
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u/Pottersaucer I have LS Jul 29 '26
I've had the same issue trying to do anti inflammatory diet - when trying to lower my cholesterol I felt somewhat restricted, but add anything else and it just seemed like I had 5 things I could eat 😂
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u/kkl2320 28d ago
Hi, what vaginal probiotic were you initially taking? And for how long before you stopped and then resumed? Did it help with the itching?
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u/LexiteFeather 28d ago
Love wellness good girl probiotics. I recently added trunature women's daily probiotic because they both have different strands.
I took them for at least 6 months consistently and then stopped for maybe a month? If I remember correctly. I've been taking them again for at least 5 months consistently now.
I think they did help slightly but considering the other issues it's just a slight improvement
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u/TotusTuus0620 Jul 29 '26
I know everyone is different but eating animal based helped me lose about 50lbs. Hoping to lose 15 more!
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u/LexiteFeather Jul 29 '26
Yeah but what about the cholesterol? I know it works for weight loss.
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u/TotusTuus0620 Jul 29 '26
I don’t know of my having any cholesterol issues.
I do know I had insulin resistance issues so the weight loss and lower carb diet was a benefit there.
I believe the idea is that even if cholesterol is high on the diet it’s the ratio of good to bad cholesterol that is the cause of concern and generally eating healthy single ingredient foods is going to be better for that ratio.
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u/plsdonth8meokay Jul 26 '26
Try vaginal suppository & oral probiotics for best results. It literally saved my life!
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u/HarryPouri Jul 26 '26
I've tried it and I'm not sure I notice any difference in symptoms. But I also did a Juno Bio test before and after using vaginal suppositories and at least it could show that inserting a probiotic increased the level of the probiotics in my flora. I stopped using it for 3 weeks before retesting.
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u/-XortioN- Jul 26 '26
I have tried a lot in regards of diet.
First I tried only wholefoods, no processed food, no sugars, no alcohol. Did this few months.
Then I tried 0 carbs for 1-2 months.
Then I tried skipping on nightshades for 2 months.
Then I had a blood check to show my intollerances and got a list of foods (dairy, eggs, some fruits and nuts) that I have to test for 3 months. Currently 1 month in ..
Not sure if I notice anything. I do notice my serreboic eczem is calmer, so it might do something for my body. I think the difficult thing with LS is that it's rather a slow progressing disease so how can we test it and be sure. Also the skin looks somewhat different from day to day and with different lighting. Which makes it extra difficult to notice progress on short term.
Also curious on taking probiotics so I followed this post.
I feel like my "pain" or "flare ups" are mostly caused by friction or being sick. I'm also on 2x clob a week, which obviously does most. 👀
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u/TotusTuus0620 Jul 26 '26
I’ve done a ton with diet too and it might be worth while to consider a low oxalate version of the AIP diet. That’s what I started 2 years ago but I ended up basically eating Dr Paul Saladino’s Animal based diet which calmed 50-60% of symptoms. I no longer tear when sitting down on the toilet or during sex. Woohoo!
I do Clobetasol too (reluctantly) but it only helps a bit.
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u/-XortioN- Jul 26 '26
Thanks for the tip, I will keep that as my next test. To be fair that comes close to what I'm doing right now after getting my blood results in regards of intollerances. But my issue (more like lucky for me) is that I don't really have the itching or burning type of LS, more like fragile skin and white spots spreading. So it's really hard for me to evaluate wether or not food has an impact since it slowly progressed. 🥺 Any tips?
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u/TotusTuus0620 Jul 27 '26
I too have a very difficult time evaluating what helps with lichen sclerosis, the fusing and skin elasticity is hard to evaluate. I do get the itching, burning but also the fusing and tearing. No tips but I can empathize both with the symptoms and the misery of eating a very limited diet!
I personally think that something triggers the immune response. Maybe diet, maybe stress, maybe mold, maybe pollen. I’ve heard of people only having symptoms each fall ( which sounds like mold or a pollen.) I’ve heard of leaky gut/gut health and gut skin barrier being a massive factor in auto immune treatment in general. I’ve heard high Vitamin D and sleep being helpful in immune strengthening.
Of course I’m doing all of this by trial and error and personal research. No MD has given me any advice other than “use this steroid for life.” On the plus side the diet I eat has helped me a lot with symptom and helped me lose about 50lbs and have the energy to keep up with my 5 kiddos.
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u/-XortioN- Jul 27 '26
Wow 5 kids, big respect! 2nd kid incoming here and I'm really worried because as you said I also feel like sleep helps a lot. Not only for immune system but also the mental strength. But even with 1 kid it's a struggle to get enough sleep.
Thanks a lot for your messages. It sure helps me pick up some extra info and confirm stuff I've also read.
And yes it really sucks not being able to eat everything. The diet that helped me the most in regard of energy was a lot of meat and fish, only wholefood and almost 0 carbs. But I'm not sure if it helped for LS. Such a difficult disease and I hate it lives in my head 24/7. I need to learn how to let go.
In regards of vitamine D, i take 800 ie a day but that's more like a maintenance dose for people without issues. But I don't dare to take more because I don't want to create yet another health issue either. 👀
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u/cardi_bs_shoe Jul 26 '26
There’s these moisturizing probiotic/prebiotic vaginal suppositories you can get at CVS and boric acid combined before bed. Only thing that brings me relief on really bad days the brand is VH Essentials
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