Now been diagnosed 3mnths but suffering for a year now .
I have changed my diet gluten free.
Sugar free, no alcohol, zinc,vit D,B.
I use Derma 500 lotion to wash ( been my saviour)
Spray with bicarb and once per week at the most twice bicarb baths. As i found bathing everyday was too much.
I use Betnovate ointment still twice per day and yes i use petroleum jelly as everything else I have tried makes me sore.
As i am now living in Spain finding it hard to find alternatives although looking online for beeswax.
But itch and white patches initial diagnosis only on clitorus ,I find to my horror after lots of redness and blistering now along inner labia. Does this ever get better if you go into remission ? As I am reading a flare up lasts three to six months and i feel mine has gone on longer 😥
Before I was diagnosed by my doctor, I had no idea what was going on down there so I started using olive oil and tea tree oil together applying nightly. I stopped taking baths and went to warm showers. Within a week I felt 100 percent better. I was given club but I rarely use that. I started using castor oil mixed with lavendar and have not had any problems in 3 months. I am a vegetarian so I haven't changed my diet whatsoever. I still enjoy a diet soda daily and have one cup of coffee in the morning with sweetener. Last week I added a teaspoon of coconut oil to the castor and lavendar mixture. I'm quite pleased with the results. I hope you find comfort soon!
When in"over did" things I got folliculitis..feels like blister pain..we need to keep a ph balance and to much cleansing is harsh on the skin already compromised by the steroid. I had an antibiotic ointment for the blisters. Gone in 3 days and my doc said I was using to much of everything. Olive oil or vitamin E for now.
Susan- I had a white bump next yo my clitoris and ignored it. I had pain in my clit and ignored it, i had a “ raw feeling” and teied to ignore it. By the time I got to Dr two months later my inner labia were covered in ulcerated sores, my outer laboa itched like crazy and I cried whenever I peed. I hv been un homeopathic Eumaid Maxx for 12 days and no itching, no burning, no pain and I haven’t looked yet, but my finger doesn’t feel the ulcers anymore. It is made up of several different oils and herbs. I ordered more, plus a regular Eumaid and their cleansing bar- on Amazon or Eumaid. Com. Good luck!
No when i visited gynae he was also very matter of fact and no follow ups at all in the Uk.
I am just starting my own business over here so awaiting my cards to register with a Doctor . But also nervous of the language barrier here😬Not an easy subject and as we are all aware not many Doctors understand it 🤦🏻♀️
I am interested to know your recipe for the olive oil / tea tree oil and I am also wondering if it was beneficial...
I do cold pressed organic castor oil but I haven't tried adding any lavender. I would be interested in your recipe for that as well. I use a borax spritz with lavender in a spray bottle it works very well as a nice fragrant cleanser, very soothing! As a rule I use it to stay fresh and clean after toileting and just before bedtime.
Sorry you have so many issues. I am so thankful after almost 15 years with LS that I haven’t had a flare in over a year. I use only Estrace cream and gyn oncology doctor changed me to fluocinolone (Synalar) so NO MORE CLOBETASOL. I also have a solution that I spray in the shower and after toilet use, no soap or other solutions worked for me, then I blot only with white flannel (cut up from a yeard of flannel). The LS spray has been a lifesaver as has no longer using Clob which I’m convinced gave me flare ups. Jan Vaughn, 78 years young and thankful.
I also used the Eumaid MAXX for a couple years but still had flares. Now with the switch to Synalar and no more Clob plus using only my DIY LS Spray I haven’t had a flare in well over a year. I’ve had LS for close to 15 years (since 2004) so have fought this stuff that long. My protocol now keeps me flare free.
My LS spray:
Witch hazel 8 oz.
3 drops of tea tree oil
5 drops of Vitamin E oil
5 drops of lavender essential oil
Capful of castor oil (I use at least 1.5 capfuls)
Optional: After spraying after toilet use and shower, apply 1/8 tsp of 100% aloe vera gel
Blot with white flannel only, not towel. I purchased a yard or so of white flannel, laundered and cut up in small washcloth size pieces.
This spray has been a blessing for me. I keep one spray bottle near the toilet, the other in the shower, I never ever use anything else in my vulva area period.
Thanks for all the great info. I am a little leery of the lavendar oil because it is part of the ragweed family and I am allergic to ragweed. Can I ask if you work? I am reading all these protocols and people with spray bottles and wonder how they can do all these and still maintain normal life? I work 4 jobs, drive 600-800 miles a week, constantly in client’s homes ( some bathrooms I WOULD NOT use! ), conducting group therapy ( can’t just leave abruptly) or teaching in HS ( can’t just walk out during a lesson), or performing on stage.... does it all get easier when you are not in a flare- up?
I have very small Tupperware containers I use to mix everything up and store it for about a week. I use organic castor oil 2 teaspoons and a cap of lavendar oil. As I said I added coconut oil last week, about a teaspoon and mix it all up! I apply with a cotten ball only in the morning and last thing in the evening. And yes no flare and it completely takes the itch away immediately! I am so thankful to have tried this and I am symptom free. I actually went two days last week without applying in the morning. I take a multivitamin for age 50 plus..im 55, I take a b-complex supplement and flaxseed oil capsule daily. That's pretty much my regimine.
I've never used the clobetasol... I'm in the USA and the clob is extremely expensive. I am blessed to have a wonderful lady doctor who really tries to work with me since I am uninsured. I use Triamcinolone from time to time during flare ups. I also have the Estrace cream which I use topically. I have to be careful with the hormone cream because I have had to have breast surgery in the past. I certainly will talk with her on my next visit about Synalar! I love reading everyone's stories and seeing what has helped and worked. I've got some great information on this forum and I know I'm not alone! Thanks to each of you brave hearts... Never give up, never surrender!!!
I pray we all hv remission soon! I’m 14 days in and going crazy ( luckily am on vacation and can focus on ME for a few weeks!) People hv been writing in who hv had it for decades! 😬😬
hey sonya! Very cool, I like your idea of combining olive oil and tea tree oil together and applying nightly. Do you apply with a dropper using your finger or do you use a cotton swab? Can you give me an idea of how many drops (like from a dropper) you use of the tea tree vs oil?
Re castor and coconut oil with lavender oil, what about that proportion? And you apply it the same way?
Do you just alternate using the tea tree/olive oil combo and the castor/coconut/lavender oil once each daily at different times of the day?
Do you just feel relief from the itching or has it helped reduce the fusing or the whiteness?