Posted , 95 users are following.
I was recently diagnosed and it was pretty bad. I thought that I had a yeast infection but it turned out to be this. Prescribed a strong steroid cream and been using for a week now. So far, it only makes my vulva inflamed and still have itching and pain with urination.
I dont like the idea of having to take steroids long term and I am looking for a more natural treatment ! Help !
4 likes, 73 replies
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angela16948 Becca86047
Posted
I feel your pain, I have been suffering from this for over a year now, was only diagnosed by a Gyno in January this year. I started with clob which was very harsh and didn't make anything feel any better and then I went to a Dermatologist and she has prescribed me Triamcinolon 0.1% and Tacrolimus 0.1%. I apply one on the morning and one at night...been on these over 3 weeks and still not any better. I did try the NutraBlast Boric Acid suppository at night and it gave me temporary relief but not long lasting. In desperation, I have spent long hours searching and I found Tulip Treatment by Coyle Institute in Pensacola, FL. It sounds promising but don't know if it is covered by insurance or the cost...I have reached out to them and currently waiting for a response. I'll revisit this post when I find out more info and let you know. I am willing to do almost anything at this point as this is very painful, uncomfortable and not to mention what it is doing to my marriage.
Good luck and fingers crossed that this Tulip Treatment turns out to be what they claim it to be.
amirek1 Becca86047
Posted
Has anyone used McKesson Perineal and Skin Cleanser to prevent flare-ups of vulvar lichen sclerosus? I'm to the point that if I stop using the steroid ointment, lichen flares up again. I don't want to have to keep using the ointment all the time, everything I've read suggests that one should use a pH-balanced cleanser. The McKesson cleanser doesn't even require rinsing. I thought I'd buy some and try it directly on the affected areas, and if that still doesn't do the trick, I'd use it all over, as a body wash (since I'm guessing anything else I use all over is still going to find its way into my private parts when I'm showering?). I found the McKesson cleanser while searching for pH-balanced cleansers. While I didn't see any mention of using it for vulvar lichen sclerosus, it is intended for use on the perineum, so I figure it's safe to use on the vulva. A gallon of this cleanser is less than $20 with free shipping on Amazon, I figure it will last a long time. Thoughts?
jen52731 Becca86047
Posted
I was originally diagnosed in January 2020, although I had severe itching accompanied by patches of white skin and lesions for several months prior to that. After seeing three medical providers, including a sexual medicine nurse and a gynecologist, I was prescribed estradiol and clobetasol, both for use everyday for a month. My symptoms slowly improved and I cut back on the medications over time. Then at about month nine or ten, the symptoms came back with a vengence even though I kept increasing my dosages every week. Now, after several months of worsening itching and pain, my providers are referring me to two other doctors, including a dermatologist. And as an additional side affect, I am experiencing sexual dysfunction my sexual medicine nurse has attributed to the LS. Has anyone else experienced this as well, or could it be connected more with the depression associated with the ongoing struggle with the LS?
Thanks in advance for your replies.
lacey2323 jen52731
Posted
Jen, so sorry to hear about your struggles!
I am also beginning down the road of sexual dysfunction and feels pretty bleak. I don't know anything about depression being a factor per say, but the general consensus is that stress is a major trigger.
My diagnosis was all of the same things, though steroid use seemed to do the trick for several years. Now its seriously lacking.
Biggest piece of advice, READ AS MUCH AS YOU CAN FROM OTHER WOMEN AND TRY THEIR RECOMMENDATIONS. Specifically LS- which most doctors don't know much about- most women seem to have found alternative treatments and routines to be much more successful for long term care. I'm not your doctor, so I cant say to stop any meds, but using less steroids and more baking soda/emuaid/oils has done a lot for me.
One big thing women are saying helps is cutting out sugar, which honestly, I suck at.
Sending love your way!
Wanda79 Becca86047
Posted
I have not been diagnosed yet, but after reading all these blogs i am 100% that i have it. I made an appointment with a GYN specializing in this but she doesn't have availability until October. So i have been self medicating the best that i can. I just ordered Emuaid hopefully it works. I also started documenting my flair ups. So far i have been having a flair up once a month in only one area. I have changed my soaps i don't know how many times. Any suggestions on soaps that i should use or just no soap at all. I find it very hard not to not use soap i feel like i am not clean enough. LOL. I drink a lot of wine do you think this also contributes to flair ups. As far as the coconut oil should this be put in the morning and throughout the day? If anyone can comment on this I would greatly appreciate it.
This has just taken over my entire life. From the clothes I wear to the food I eat to my relationship.