Apologises for the hair. I think my LS is flairing up & most of my labia is fused. can anyone tell me how bad this is comparatively. I’m 39 and was diagnosed 3 years ago. I’m worried its progressing too rapidly.
i I havent tried baking soda, as im worried it will be an irritant & borax is out if the question as im UK based. Please help!
Please for god’s sake don’t apologize for what god/the universe gave you. beautiful protective hair! I’m 73 and don’t understand this totally weird UNholistic concept of shaving your womanhood off. geesh.
Honey, baking soda is alkaline and not an irritant at all. Very soothing. I’m in the U.S. and I Do use borax as well.. but really baking soda does the same thing, just not quite as alkaline on the pH scale as borax.
I put a handful or two in my bath.
This is not a “bad” condition at the moment. The bottom line is how do you FEEL? are those pinkish bits tender/sore? Be sure to read up on all the autoimmune supplements that will help in reducing the the red the pain etc. I"m about to post a new version, but here is what i gathered about 15 months ago wheN i first realized about this LS.
ALSO here is how I figured out what was needed and why - really helps i think…
Thank you so much. i currently have a vitamin B deficency & suspect gluten intolerance, plus a family history of autoimmune disease. So it makes sense that the LS has progressed. Im not ichy or sore like i was when going through diagnosis, so i hadnt noticed it had progressed recently. Bit of a shock & its hard to know how your progress compares, as everones body is different!
have you been using steroid cream?
i am 32 and this doesnt look dis-similar to mine except mine has been the same now since diagnosis and isnt getting worse ans the white patches have reduced and improved, i feel like i am in remission as its not flaring up at the moment and has been stable for over 6 months due to steroid treatment and maintenance of one a week application
Emmy, I have been using Clobetasol for 8 years plus now and I regulate both diet and vitamin and mineral supplements to.
What I would say is don’t forget the role of steroids such as clobetasol is to keep the skin as healthy as possible, and particularly for you Ladies, to prevent as far as possible, fusing.
What I would suggest is if you are only applying the steroid on a once a week basis this is too long to maintain the skin as being the best balance possible. I have found that I can miss applying for between 2 and 3 days at the most before I get flaring back again.
I would hate you to be a number of months down the line and you find you were not doing as well as you thought, as this seems to be quite common of women in this Forum.
My suggestion would be to apply every 5, or even every 4 days to be on the safe side.
I use a steroid once a week and have had no issues, so also thought i was in remission. I have been under stress & not eating well. I dont check very often but did this week and noticed I have less architecture.
5 years ago I had quite large labia minora, it took 2 years for a diagnosis & I lost a lot of architecture in that time. I suppose i’m worried that i felt no symptoms & have little labia left & how it may progress.
i am going to increase my steroids and see if i can get it back in remission. Thank you for replying & reasuring.
yeah i would go back to your doctor and get them to suggest if you need to increase your steroid use. i use mine once a week but i definitely havn’t lost anymore architecture ans mine looks better if anything. i check each week xx
Mic - I am in UK and you can get Borax online. I get mine on Amazon or Ebay and its cheap. Make sure you get Borax Sodium Tetraborate. Mine came from a company called Pure and More. In my opinion its well worth using as it softens the skin and soothes. Obviously keep up the steroid though. I am no doctor but your LS doesn’t look bad to me.
oh gosh Mic, it sure is a bit of a shock, just like you, once the pain was gone I haven’t been looking down there … and Wee Dugie is so correct; us women do tend to not look very often and then we discover all heck has broken loose.. argh.
Anyhow, hope you Do get time to read my write ups. You’ll discover that I had read from one doctor that if we get one autoimmune disease that we have a statistical chance of getting up to 7, SEVEN other autoimmune diseases. THAT is why I’ve really put it hard to my 34 year old daughter who had thyroid cancer and had it removed, that she HAS to keep vigilant. To max up the known supplements that build a strong immune system… argh.. but it’s hard getting a 20-30- something to believe that they aren’t invincible; and that it is SO much easier to build taking vitamin pills into your routine than to solve for another autoimmune disease far more disabling later. Good luck hope your family is well
Hi Mic,
Hey, no worries on the hair… Hair is protective and hair-based skin is way different than non-hair skin.
You can’t get borax in the UK? Wonder why? It’s sold here in the US as a laundry detergent booster (there’s no detergent in it). It did not help me but I really didn’t give it much of a chance. Do you have pain? Take a cup of water (about 190 milliliters) and put a teaspoon (don’t know what that is in the UK) of baking soda in the water. Stir until dissolved. That’s a weak solution and I really doubt it will hurt. Likely won’t feel anything.
This issue with LS is that the condition takes years to make itself known. What took years to show up does not go away in a month. It was hard for me to accept that s whatever I’ve had is generally gone in a month anyway.
What skin moisturizer are you using? If none, start with coconut oil. Organic if you can get it but buy the regular if nothing else available. Best wishes, biscuit
It is true that if we have one autoimmune problem we are statistically likely to get another. That does not mean we WILL get another. You immediately need to fix the vitamin deficiencies. How did you know you had a B deficiency? D I understand. B deficiency is rare because we eat a lot of meat and grains. I wonder if you have an absorption problem?
Eggbiscuit - Borax is banned in UK because it is deemed carcinogenic!! There’s an irony! I told my GP I was using it and she didn’t disapprove, telling me it was what was put in baths in hospitals for mums after childbirth to aid healing.
TOTALLY cool report from your GP, Sarb! thanks
Sarb,
Wow! Carcinogenic?? I will have to look that up. Thus far I have not seen any reports of that in the medical journals. Sounds like some drug company does n’t want people treating themselves? Thanks for the info…
Eggbiscuit. As I understand it, borax is used in a children’s 'goo ’ (stretchy play dough stuff) and found to be causing problems (I dont know what exactly).
i got very tired, forgetful, irritable, kept rolling on my ankle & ending up on the floor because id get numbness in my hands & feet etc… dr did blood tests and it cane back as that. Prescribed vitamins & now taking wellwoman on top. There are gluten issues in my family & I suspect im develoing, but ive naturally reduced gluten without realising. im now upping my gluten to get tested. I regularly forget to eat in the evenings as im not hungry, (solo parent, full time job, trying to get my profession quals up - never enough time). Bit of a wake up cal l, so trying to start looking after myself better.
Gluten would cause absorbtion issues. B12 deficency is also autoimmune, but mine in more folate B9 related
Thank you so much everyone for replying. It helps so much connecting with others who understand and are going through something similar. I’m going to go back and see if I cannget a referal to the specialist again & really focus in looking after myself & incorporating coping methods from here. Thank you!
Thank you, I will!
I use hydromol to wash and an intestive to mositurise, I also ise an emoilent as a barrier cream when needed.