Posted , 7 users are following.
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!
0 likes, 35 replies
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Nancy_K_B mic22234
Posted
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.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963
ALSO here is how I figured out what was needed and why - really helps i think...
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
mic22234 Nancy_K_B
Posted
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!
Nancy_K_B mic22234
Posted
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
Guest Nancy_K_B
Posted
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?
mic22234 Guest
Posted
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.
mic22234
Posted
Gluten would cause absorbtion issues. B12 deficency is also autoimmune, but mine in more folate B9 related
Nancy_K_B Guest
Posted
Ah just saw this Biscuit... that is Mic who says she knows she has a Vit B deficiency.
But personally for me, I discovered it many years ago by just living and learning. Graduate school was the kicker - the time on architecture drafting board and over nighters and stress of wanting to do well... if I forgot my super B complex for a few weeks, oh geesh... depression, irritability....
Nancy_K_B Guest
Posted
about immediately fixing the vitamin deficiencies! - ya got it -
that is exactly WHY I keep harping on here, and have for 15 months, about paying attention and selling your house if that is what it takes to afford your vitamins ....
who the heck wants any of those other 150 known autoimmune diseases. LS may be annoying - it isn't gonna put us in wheel chairs or dead etc... etc
emmy2018 Nancy_K_B
Posted
hi Nancy, did you test to see what you were deficient in vitamin wise first or do you just take vitamins to ensure you wont be defiicent in anything across the board? before i had LS i thought i might be deficient in b vitamins as they are linked to cycle length or so i had seen online when i was trying to get pregnant. i stopped taking them (i think i was taking b6 and b12) once i had my kids but reading this has got me thinking xx
Nancy_K_B emmy2018
Posted
HI there dear Emmy,
Ah good question. I take them all with confidence BECAUSE I first studied up on all the cofactors to each supplement I found out about, and then Part 2 was to find out the proper RATIOS that science has discovered for each of those. As long as I keep the ratio relationship between the critical ones mostly on target then there is no reason to worry about "too much" of this or that.
ans that is the list I've posted for everyone here. I've finally come to the conclusion that we don't need to be able to afford a FM Doc - the internet and my 3 months has found I think a really good baseline. I'd love other to add to the knowledge base.
See? These are all MICRO nutrients. We Americans, on the standard American diet, "poison" ourselves with sugar and salt way more than any vitamin will ever do so.
OH! but about your intuition about the B vitamins for you; ANY women of child bearing age who is taking BIRTH CONTROL PILLS needs to add Vitamin B6 and a couple others that science knows perfectly well are stolen from us. IT is in the literature as fa back as I was a young woman (I'm73) WHY this is not mentioned strongly by every doc and nurse beats me. well yes we do know. the science may be there, but the students aren't taught the science of nutrition in med school. Do look up about that more to find the others I've forgotten.
emmy2018 mic22234
Posted
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
Wee_Dugie emmy2018
Posted
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.
mic22234 emmy2018
Posted
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.
emmy2018 mic22234
Posted
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
mic22234 emmy2018
Posted
Thank you, I will!