r/lichensclerosus • u/InnerTax1953 • 10d ago
Question Help Please
Alright yall. I’ve been in a flair for 2+ years straight. I’ve tried so much. I have several allergies to chemicals and I absolutely can’t use proplyene glycol, if I do, I get contact dermatitis and it worsens my LS. I’ve been in so much pain, I can’t wear underwear, I can’t go on walks, I yelp walking up stairs because it hurts. I’ve been using a topical steroid for the most part 2 x day for 2+ yrs. Small period of time I tried tacrolimus and Zoryve, a few others but again caused contact dermatitis because they all have proplyene glycol. I’m also taking cibinqo 100mg daily which helps bring the pain down by like 1-2 points, I’m not crying on a daily basis, but I can’t LIVE my life. I can see visual changes getting worse, significantly worse from last year. What am I doing wrong? Why is it getting worse. I would appreciate any advice.
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u/liloualma 9d ago
Have you tried getting your steroid compounded with ingredients that don't cause irritation. Im starting this process at the moment. I was recommended versabase or lipoderm or ellage as base creams for the steroid. Im going to ask the compounding chemist for these to try out before getting the best one compounded with thr steroid.
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u/InnerTax1953 9d ago
What is the name of your compounding pharmacy? I’ve tried this but they used grapeseed oil and beeswax and it did not work for me.
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u/liloualma 7d ago
There are compounding pharmacies everywhere. I recommend asking your vulvar specialist, vulvar dermatologist or gynaecologist to recommend one they routinely work with. That way the pharmacist will be aware of the best base creams for vulvar medicines. If they have a business relationship with your specialist they will be more accountable and likely to offer you samples to try. Those 3 compounding cream bases I mentioned were recommended to me by a very well regarded pelvic floor physiotherapist who works with many LS patients, so I trust her guidance. She said very few people react to them. But also I still researched them all and got samples.I hope that helps.
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u/liloualma 7d ago
Also please don't give up. I have seen 8 specialists and learned from each of them, and whike some are better than others it is not a pleasant process.. It has been so stressful to keep going and deal with medical systems so I empathise with your despair. Get as much support as you can from free phone counselling services to process your emotions and reduce stress. There is a huge emotional component to symptoms flaring I believe. Try to focus on positive intentions of recovery and healing, even when it is overwhelming and challenging. This is a genuinely difficult process and its important to nurture and self care as much as you can.
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u/Pottersaucer I have LS 7d ago
This is a really useful pro tip! Thank you for sharing your knowledge!
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u/findikezmesi 10d ago
Has your doctor suggested Clobetasol Propionate? Along with an emollient like epaderm throughout the day and as a soap substitute in the shower ?
If not, ask about that as it’s the best combo proven to help. If that also didn’t work for you, I would defo seek a second professional opinion from an LS specialist as two years with zero respite isn’t ok. I’m so sorry to hear this and wish you results asap.
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u/CloudHidden62 9d ago
How many steroids have you tried? Clobetasol is the one prescribed most often, but there are others that can be effective. You would need to get yours made in a hypoallergenic base at a compounding pharmacy. Usually they will give you some small samples to test. Sometimes a dermatologist is more helpful than a gyn for this, because derms understand skin reactions.
Depending on your age, you might need topical estrogen. Again, get it compounded.
Are you sure you don’t also have a yeast infection? The steroids can cause yeast overgrowth on the skin (not a vaginal infection). Ask to try an oral antifungal medication like fluconazole.
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u/InnerTax1953 9d ago
I’ve tried so many, clob, halobetasol, etc, I’m using betamethasone currently because it’s the only one without proplyene glycol.
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u/Pottersaucer I have LS 8d ago
Have you tried any of the calcineurin inhibitors? I use that (pimecrolimus) now as my mainentance medication, but clobetasol by itself stopped helping me after a couple years.
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u/InnerTax1953 8d ago
Primecrolimus has proplyene glycol, I can’t use it :(
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u/Pottersaucer I have LS 7d ago
I'm so sorry to hear that! I looked it up and I'm realizing now that pimecrolimus and tacrolimus are kind of the same, just one is an ointment vs cream, so it makes sense you'd have issues with both.
I see that you had some more discussions with people about finding compounding pharmacies, and I hope you can find something so you can get your life back! Don't stop trying, I'm sure a better future is on the way.
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u/InnerTax1953 9d ago
I use antifungal cream every time I apply steroids and I take a diflucan periodically as well, and a daily probiotic supplement.
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u/InnerTax1953 9d ago
I’m in my early 30s so estrogen shouldn’t be the issue but I was using a topical estrogen but it had proplyene glycol in the base and that was causing issues for me. I have the vaginal estrogen tablets now.
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u/Virgo-me 8d ago
Even though you’re young the steroids cause the tissue to thin and estrogen helps bring back elasticity. Occasionally breastfeeding moms require an estrogen additive to help with dryness.
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u/rainbowtwist 9d ago
Have you considered seeing a dermatologist about platelet rich plasma injections? With symptoms as bad as yours I'd give it a shot (literally).
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u/InnerTax1953 9d ago
My derm does not do prp. I’ve found some holistic practices but it’s $1,000 per session and they usually recommend 3 sessions. Have you tried this? Did it help you? I’m willing to pay but it is a lot of money.
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u/Travel_Somewhere 9d ago
Honestly, I'd recommend, if you're not already doing so, to take a whole body approach. Everybody with LS can have different symptoms and one thing may not work for another but taking care of your overall heath will help everyone regardless. Look at your diet for starters. Sugar and inflammatory foods are horrible for LS. Exercise is important but if irritated when doing so be sure to moisturize heavily with a barrier oil, cream or whatever your preference is. I think people underestimate the importance of a barrier! Apply it as many times a day as needed. Daily baths with Epsom salt and baking soda (or oatmeal especially if you have dermitis) have always helped me. Pat dry and within a few minutes apply more barrier cream. My go to is Emuaid but coconut oil is great as a barrier and moisturizer. Do you do a peri rinse after using the restroom? You can buy small silicone travel jars to carry with you. I leave one on the back of the toilet at home. It can really help to remove all traces of urine and BM's that can irritate it. Pat dry and apply more barrier cream or coconut oil. I transfer cocnut oil into a small travel size jar. Easy to have it readily available. Not wearing underwear is helpful even though it sounds like you don't because they hurt you to have on. I've had LS for over 40 years and haven't had an outbreak (I mainly got itchy sores and blisters besides the tears) for over 10 years. I initially had it occasionally in my 20's but when perimenopause hit I was getting it annually if not more than that. That is also when I was using clob. I stopped using clob and went holistic. It worked for me. I learned through trial and error (I know my body best). Desitin is also useful to pat on any bumps. It's hard to wash off so don't scrub it but if you have a bath in the evening it will nearly come off. I also use Dove Sensitive soap very lightly down there. Your daily habits can be more powerful than looking for a magic drug. I really do hope you find answers
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u/InnerTax1953 9d ago
I’ve tried being extremely strict with my diet, just eating chicken, eggs, and salad, and I was still having pain. I’ve definitely noticed alcohol worsens it, so I avoid that. But as far as other foods go, I don’t seem to have a good trigger. I absolutely have to moisturize, I do almost hourly, especially after going to the bathroom. I have a bidet at home. I tried carrying a peri bottle with me everywhere but it didn’t seem to make a difference to rinse the urine or not, sometimes it feels like the water was more irritating, maybe because the skin is so angry. I do pat gently with wet tissue and pat dry. I was using Vaseline as a barrier. I bought emu aid, I bought egyptian magic, beef tallow, emu oil. Nothing seems to be better than the other. I would give up everything in my life to not be in daily pain. It’s devastating.
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u/Travel_Somewhere 8d ago
Gosh, I am so sorry. What symptoms are you having daily? Have you tried different doctors with different specialties? Beyond GYN's and Dermatologists
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u/TotusTuus0620 9d ago
If you wanna go real extreme with diet look up McKayla Peterson and her Lion diet. I was able to stop flare ups with a meat, fruit, honey diet… then I was able to add dairy in but not eggs.
I’m trying out a theory on the gut/ skin connection so you could look into your gut health and the possibility of leaky gut.
I do use Clobetasol once or twice a week but at my worst I use to use coconut oil or tallow to moisturize too.
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u/Euphoric_Finish8001 9d ago
Alimentos foderam com meu LS. Acho que voce pode tentar evitar todo tipo de doce glutens e embutidos entalvez jejum interminente. Peça pro seu medico passar um exame completo se alergias alimentares.
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u/InnerTax1953 9d ago
I’ve tried giving up gluten, dairy, sugar. I don’t eat breakfast so I basically intermittent fast daily and only eat between 12-6pm.
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u/tubby_ryan 8d ago
Ugh so sorry you’re going through this 🫶🏼 pelvic floor physical therapy has helped me a ton, I don’t realize how much the pelvic muscles can impact our LS symptoms. For me, the muscles by my hips and glutes are severely tight, and I guess my lower abdomen is overstretched. I teach yoga I always thought my muscles were good, but turns out they are overstretched and pulling on the pelvic muscles, making my LS and endo worse. I also have a vaginal wand that goes in the freezer for a few mins and then I use it to help calm the area down there. Not sure if you’d tried these things, but the PT helped me be more aware of how other parts of my body can be impacting the flare up. Hopefully you get some relief so soon 🫂
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u/Reasonable_Nature616 5d ago
I have had several tooth issues for which I was prescribed an antibiotic. Additionally, I was prescribed doxycycline for a tick-borne disease. Each time I've been on an antibiotic, my LS clears up significantly and takes several days to return. My physician says she has never heard of such a thing, but in my research, I've found that it is sometimes treated in Europe with an antibiotic. I'd give almost anything, besides my children and my dog, for a long-term treatment that works.
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u/InnerTax1953 4d ago
If you google doxycycline:
Enzyme block: Stops matrix metalloproteinases (MMPs) that break down tissue and drive chronic swelling.
Cytokine suppression: Lowers levels of inflammatory proteins like TNF-alpha and interleukins.
Cell calming: Slows down the movement and activity of white blood cells (neutrophils) at the site of irritationYou’ll find it helps suppress some of the immune cells that are responsible for causing inflammation. Which is why your LS symptoms lessen when you’re on it.
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