Not LS (this time): Genital eczema resistant to steroids (NSFW pics)
Posted , 7 users are following.
I was diagnosed with lichen sclerosus on my glans (biopsy) 7 months ago. Treated with halebetasol (steroid) and it is under control.
Recently, flares on the shaft. Biopsy says eczema. It is so severe that clobetasol or halebetasol can't curb the flare.
Derm diagnosed it as extreme eczema. Who would think that it could make your skin flare out of control so it is unrecognizable? Big thick waxy buildup and then blisters and bleeding. Biopsy also said eczema, not LS. Ugh. TWO diseases down there. Clobetasol/halebetasol did not cub the flare so he prescribed Epiceram (prescription emollient), Tacrolimus every day long term, and methotrexate - a powerful chemotherapy drug used to fight cancer in higher doses.
Anyone else have eczema this severe on their genitals?
0 likes, 10 replies
Vero84 jj2013B
Posted
Hi, I'm a woman but have LS too. I am currently looking into going to a chinese medicine practitioner as some people had really good results. They look at the body as a whole not just the symptoms. I think modern medicine doesn't have this figured out, all they do is trying to fight the symptoms. There was a lady here whose LS completely disappeared after herbal and nutritional treatment that addressed the underlying cause. I work with a nutritionist who also said eczema almost always is a cause of some gut/digestive problem as well as immune system issues. Maybe the same is true for LS. I am not sure how open you are to alternative treatments but at this point, when modern medicine still fails us, I am ready to try anything else.
I tried using Emuaid cream which really helped down there, maybe try that, lots of people has found relief and it's natural. It has antibacterial and antiinflammatory compounds and doesn't burn when I put it on. Keeping the area moisturized is always a good idea to prevent dry skin and bleeding. I hope you find something that works, and I recommend you see someone other than a regular doctor. Let us know how you get on xxx
beverly52803 Vero84
Posted
vero, I agree with the whole body concept, but I did go to see my acupuncturist and she did not suggest treating it with herbs other than for me to use yin oil along with the steroid the gyn had prescribed. Maybe there are other acupuncturists who would take it on, I don't know.
I also tried dietary restrictions along with more organic food and supplements but have seen no improvement.
Vero84 beverly52803
Posted
Hi Beverly! I think it has to be not only an acupuncturist but a chinese medicine expert. I have one near me who focuses on herbal medicine and specialises in gyneacological issues so I will see him once I'm a bit healed. Maybe it won't help but want to give it a go. I will let you know how I get on! x
beverly52803 Vero84
Posted
I did go to her at menopause when an overly enthusiastic & possibly unethical gyn oncologist said I needed a complete hysterectomy because of fibroids which weren't noticed previously. The acupuncturist had me make & drink a very nasty tasting tea every day for weeks. When I went back for an ultra sound the fibroids had shrunk in half and my doc said there was no longer anything to be concerned about. I think if the acupuncturist felt there was something she could do for the LS beyond the yin oil she would have suggested treatments.
But I have no doubt someone who has really mastered the art of Chinese herbs could do something for LS.
You are in the UK, correct?
Vero84 beverly52803
Posted
Yes, I got in touch with a practitioner who has treated people for LS. He said most of them responded well to the treatment but sometimes it takes a while to respond. Will see how it goes, I am willing to try anything x
beverly52803 Vero84
Posted
I don't blame you as I feel the same way.
ma11962 jj2013B
Edited
Ouch! That's looks painful!! I am a woman. I have LS on my genitals and used to get eczema elsewhere on my body (hands, face, trunk). I never saw a good response to steroids with my eczema, most steroid creams made it worst (the rash would spread), which stumped doctors. Years ago, I got a really bad case of it on my hands and saw an awesome dermatologist who gave me a triple cream of antibiotic, antifungal and steroid. It worked really well but I had to keep using it every day otherwise the rash would come back. I went back to her and she told me to use a thick coat of vaseline all over the area and stop all topical steroids and antibiotics. The rash went away after a day and never came back. I started using vaseline whenever I saw a dry or itchy patch anywhere on my body and haven't had anything that looks like eczema in 10 years. I got LS on my genitals last year and tried the vaseline but it doesn't work on my LS, I have to use clobetasol for that. I think Vaseline works when the things that causing the irritation is coming from the outside. I don't know if it would help you but it doesn't hurt to try. It's such a simple thing I can't believe I didn't think to try it myself instead of going to all those other doctors for my eczema. I'm considering laser and PRP for my LS now so that I will have to use steroids less often. It's so expensive though, I'm wondering if there is a simpler and cheaper alternative that I should be trying before going for the laser.
In general, I think people like us who get lots of rashes, sores, ulcers have a protective layer of our skin missing or disrupted so our immune system overreacts because the body is not protected. I also get canker sores in my mouth and now also genitals but I didn't get them biopsied. Cutting out stuff that disrupts the skin and mucous membrane barrier has helped me a lot. Detergents in soaps and shampoos, sodium lauryl sulfate in toothpastes, emulsifiers in lubes, emulsifiers in foods, NSAIDs all either cause issues for me or make them worst. You might want to look into your laundry detergent, underwear material, condoms, lubes, sexual partner's toothpaste ingredients, etc.
jj2013B ma11962
Posted
Thanks for helpful reply. You sound aggressive and I hope it is working for you.
Yes, I used Vaseline for what I now know is severe eczema but the last two flares were too much for it (as you can see from the pictures!). Steroid not very effective but Tacrolimus has been so far. With eczema, use Tacrolimus long term (otherwise, the eczema will come back even if the skin looks normal on the surface).
I am interested in seeing how the prescription emollient (Epiceram) does versus Vaseline. The only problem with Vaseline is it is so thick and can interfere with topical medicine unless you get it all off. Rubbing to get it off is not recommended with eczema caused by friction.
The last medicine, methotrexate, is a chemotherapy drug. It is hard core so I am a bit trepidatious about it but will see. It also means I will have to give up alcohol.
Guest jj2013B
Posted
Hi JJ,
Thinking about your situation, I wonder what your Vitamin A and D levels are? Have read that those of us who have eczema or psoriasis often have deficiencies in these 2 vitamins and auto-immune problems. If we got into this situation, we can get out of it. At this point, I'd bet you have major systemic stuff going on. As ma 11 says, have you gone through all of your products and searched for those that have these added chemicals? Changed diet? I am in the process of doing that now. Am getting rid of all the bad chemicals.
Let us know how you are doing.
biscuit
jj2013B
Posted
"have you gone through all of your products and searched for those that have these added chemicals?"
My first derm a year ago thought all my skin problems were irritant contact dermatitis (but it turns out LS on glans and dermatitis below). I went through EVERYTHING and ordered hypoallergenic laundry detergent, etc. It made no difference, sad to say.
I have been taking Vitamin D supplements for 3 months now. These eczema flares actually happened after I started them. That's odd.
I have Vitamin A in my regular daily supplement (100% I think).