ok ladies, this is what is happening to me at this time, i started itchin last nite and i did a epson salt with coconut oil bath and then put on emuaid max for the nite. got up with no itching but super nervous to see the Gyn, this is another one , cause i wanted a second opinion , i told her i was not using the Clob the other Dr. prescribed since i wanted to see another Dr. she looked and checked me and said i was better then the last time and to use Clob, ONLY when i had itching ,and then to stop, to use vaginal cream like Replense and Estriodal once a week or twice a week, and to lubricate with Crisco or with Coconut oil. i told her i was watching what i eat . no sugars and Gluten and she SAID THAT DIETS DIDNT HAVE NOTHING TO DO WITH LS!!!! to eat what i wanted...I really dont believe that cause i have been doing without sugar and gluten and i am so doing better, i put on EUMAID MAX AND ALSO THE ALOE/TURMERIC OIL AND NOW I WILL ALSO USE OLIVIE OIL IN BETWEEN AND I FEEL ALOT BETTER.. I HAVE BEEN SOAKIN IN THE EPSON/COCONUT FOR ABOUT 20 MIN EVERY OTHER NITE.. THIS IS MY REPORT FOR YOU ALL AND I AM FEELING ALOT BETTER AFTER ALMOST HAVIN A HEART ATTACK ON ALL THIS MESS.. JANIE
Sorry Janie- I have to disagree with the Dr. Unless they have LS themselves and hv experienced what we gi through, they Have NO IDEA! I believe that sugar, and gluten def. affect us, the proof is in the itch!
Maybe print her off Nancy KB research fir tge Dr and bring to your next appointment?
3i started using a tsp of soda in my water and it's really helped the itching was using Epsom salt in my water but I wasn't feeling better at all.
Happy you are finding what is working for your body. Every time you notice itching I would make a habit of writing down what you ate that day and the day before. This can help you pinpoint what else you could be eating that is triggering your LS. Some people are also triggered by milk, nuts, or tomato. What you may notice might surprise you. Also, have you tried soaking in baking soda? I love Epsom salt but I noticed it can be drying. When I soak in baking soda it makes my skin so soft and it helps heal any fissures really quickly. Good luck!
My doctor said the same thing, that diets had nothing to do with it. I agree with you and the other ladies it has everything to do with it. I was a sugar addict i would know, no sugar and im having less issues down there. Glad you are feeling better, this is a constant struggle for balance.
HI Janie, It seems that doctors don't agree with the research that Nancy has tirelessly explored for all of us here. I think it all boils down to experimentation. I have pretty much but not totally, eliminated wheat and sugar. Not big on sugar anyway, but I need my juices. I now use the Clob when there is insane itching and I mix it with the Emuaid, which has been great. I am also using baking soda and warm water soaks with wash cloth on my parts rather than soaking in the tub. It has made a difference, but I still have fusing and am pretty much losing my inner labia. I don't know how much more I am going to lose. I'm wondering how bad it can get. It is always a toss up on whether to use every night Emuaid or aloe vera and tumeric. Both are good. I thought if there is no itch, then the LS won't eat up my lady parts, but I see it gets eaten up anyway. Ugh.
Wow Susan, I am sorry that you are experiencing fusion and loss of inner labia. Being that I am not used to "looking down there ", I am finding it difficult to see . I guess i need to find a lighted hand mirror or something. Lol...
So is it really true that even if not in a flare or itching episode, the LS still continues to progress?
That is super scary. Mine is small white patches on the inner most labia.
This is weird because when I went to my GYN, i was not really having itching. Now that I started the Clob, it seems to make the itching worse and not even where the white patches are ! I am having crazy itching on the outside of labia on the sides ! I can feel a lesion or something on one side. UGH.. this is crazy.
I am going to try the wash cloth soak since I read that bath soaks are not beneficial for LS. Prior to this diagnosis, I took a bath almost every day !
Hi Becca, maybe stop the steroid cream for two or three days and see what happens...not everyone reacts well to the steriod cream. Maybe you are one of the people that can only use it in emergencies. The sore/cuts you have can be treated with something like Desitin cream which isnt quite as strong.
Hi Janie, the doctors dont have LS and so they dont really know.
THATS RIGHT Guppy, they don't and she just made it that it was no big deal, so i am going to keep using the aloe/turmeric oil and the emuaid max.. also watch what i eat. but i feel a little better emotionally cause before i couldn't sleep , wake up so worried that what was gonna happen to my life, felt very depressed . i just pray and try and keep this mess calm down. janie
Hi Susan, I too have lost my inner one,and didn't even know since i never had check before, that really freaked me out, I am not eatin any bread at all , everything with a fork and water only, grilled chicken, salads no nuts, but i am eating eggs almost every morning and sometimes bacon...I am using my Emuaid Max everyday and do the aloe/turmeric oil too and spritz with water and baking soda after every tinkle....so far so good , sometimes i do have some itchin like last nite. it might have been my worries about going to see the gyn. thank you all so much and Nancy help me so much with the aloe mix..that really helped me..janie
Thank you Alesa, and it is a constant struggle for sure..hope you are doing good too..janie
Starlight , yes i am writing everything i have been eating and that really helps...i have been spraying with the baking soda but i will try soaking with it.. i have been soaking with the Epson salt with coconut oil and that also helps ..look for the bag that already has the coconut oil with the Epson salt.. it feels cool janie
Brenda , i also use the aloe gel and turmeric oil that Nancy talked about here and it helped me alot, you should try it. i hope you are feeling good ..janie
Karen, yes i am with you, I will and she might throw me out of her office..haha..i am gonna see in a few months money wise and try and go with a vulva specalist.. dont have the funds right now, only medicare...thanks Karen for being here for all of us..all of you WONDERFUL LADIES ARE GREAT AND I FEEL CONFORT THAT YOU UNDERSTAND SINCE NO ONE ELSE DOES...janie
Hi Susan/ladies,
I haven’t had itch for months (knock wood) but that’s how it all started and I had no clue... My fusing is fierce and worries me, too. Right side gone, left almost gone, and also top area is covered now as well. I have been rotating products. I use baking soda water after every bathroom use- and emu oil and aloe with turmeric (sometimes plain aloe) plus a daily dab of steroid cream (betamethasone) <clob is so harsh for me>. I’m hoping to get Emuaid but for now it’s not in my budget.
I am finding bowel movements are becoming painful now 😢 The architecture has completely changed in less than 5 months front to back! And no matter what I do it keeps on.... When will the madness stop!
One thing I’ve been doing the last couple days is practicing calmness no matter what. I pray and meditate as well but stress is my biggest trigger. Plus it’s dragging me so far down it gets hard to cope. No! I say! It’s helping.
Blessings and hugs to all of you.
Something else that you all may consider is stop using toilet paper. when I used toilet paper my anus would become inflamed, my butt crack would crack and I would get fissures on my vagina. I now use a bidet that I bought off of Amazon for under $40 and dry off after using a towel. I don't have those issues anymore. Toilet paper has been bleached and treated with chemicals and every time you use the restroom you're exposing your sensitive areas to those chemicals. Some people just rinse off with a cup of water but I find that the bidet gets me sparkling clean after a BM, I will never go back to toilet paper!
Thank you for sharing. I'm wondering what a vulva specialist would be able to do for any of us with LS. How would their treatment plans be besides surgery, biopsys and laser. It's hard to stay calm when we see parts of ourselves disappear. It is very stressful.
I know I’m new to this horrible disease but can’t the doctor cut out the white patches or laser it or something ?
I don't know if that would remedy the situation. Sounds drastic, but who knows, it might be an option. I don 't think you cut LS away. It's from within. it's an autoimmune issue. I just want to know how far it can fuse.