Lichen Sclerosus :: Fusing Labia - Coconut Oil / Baking Soda Helped
Jun 9, 2015
I have suffered for 33 years with this disease. I am 76 yrs old. LS is an autoimmune disease and a health person told me for a true autoimmune
problem is that you had to have 3. I have arthritis, Ls and thyroid. Jus over a year ago I had to have the thyroid removed (cancer) . That is okay now. But listen to this, The unbearable constant burning itch has all but disappeared. There is still some very mild discomfort around the anus. The fusing was so complete that I lost the clitorus first and than the labia minora and the labia majora was starting to disappear. But with the regular use of coconut oil and spraying after bathroom use with water and baking soda I now have rather normal looking labia and normal colour. i was white, gray, purple and bumps. Only the clitorus has not been uncovered but sensation is still there. I am just very slightly white at the entrance to the vagina both front and back. I wish i had Known about these treatments years ago.
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When I was diagnosed last month I had fusing toward the back of my labia minora to my labia majora. When looking today the fusing is getting worse and I almost have no labia minora. I am very upset tonight. Will it ever unfuse or is it gone forever? Freaking out!!!!
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I have now seen a proper specialist for first time. She advises two week break from clob while we zap a yeast/fungal infection with an oral treatment called itraconazole. [And then 6 weeks of daily clob.] I didn't ask her whether it was ok to still use coconut oil or similar and have this slight worry that it might somehow feed the infection!?!? But don't want to forego the comfort unnecessarily.
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I have been diagnosed with LS in February this year, although looking back now with more information at hand, I have been suffering from this for nearly five years, but had always been misdiagnosed. I cannot begin to mention all the vaginal creams and tablets that I have been prescribed.. all to no avail until the biopsies were done. I am now using Dermovate and was using it only when needed, until I watched Dr Goldstein's webinar a few days ago. I picked the link up from this forum. Since then I use it everyday, after soaking for 15 minutes in warm water and then rubbing in the ointment for 90 seconds. In May of this year I was also diagnosed with Lichen Planus. I follow the same procedure with the LP but I do not seem to have as much success here. Patches still coming out all over especially in groin, thighs right down to knees, underarms, under the girl, arms etc. Is there anyone who is using something other that Dermovate for LP and with what success rate? I see on this forum that numerous mention is made of coconut oil, witch hazel and aloe vera gel. I have managed to get hold of coconut oil and 97% aloe vera gel. Is the 97% good enough? In what form does the witch hazel come... is it an essential oil? I have looked around but have not found manuka honey yet. Does anyone in RSA know where I can find this? Then lastly, how do I use the above.. do I mix them all together and put on (how many times a day?) and what is it for? Does it help the itch, scarring, LS itself??? Quite new to this so not sure how to use these.
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I'm not sure if anyone else experiences this? I tend to find something will work for me down there, then it does not. For example: coconut oil has been quite soothing in the past, lately it just irritates me no end.
I tried Olive Oil but it wasn't that great. The Doctor prescribed Sylk vaginal moisturizer and that can either be Okay or not.
Has anyone else got other 'comforters' for LS? Mine gets sore and stingy as opposed to itchy.
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I suffer from VLS and OLP.
After washing morning and night I use pure aloe vera gel on my vulva which may sting a little but really soothes. After half hour I use aqueous cream to moisturise.
When I have sore burning tongue or mouth ulcers I use pure aloe vera gel in my mouth. It really heals.
What about the emotional aspect associated with this disease. I find I suffer from lowered feelings as I feel unable to cope with the physical pain and daily maintenance. I have great difficulty accepting that my own body is attacking itself and I have no control over it.
I have great difficulty trying to sleep and am obsessed with the condition as the raw pain never eases and I know it will never get better. My dermatologist suggested anti-depressants but I disagree as my lowered feelings are caused by the presence of the disease and there is no cure for this. I read "the power of now" which helps me to live in the moment.
I would call on the women/men who have had this condition for numerous years to post and give those newly diagnosed some hope that there will be life after tomorrow.
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I am 33 years old and have just been diagnosed with LS. I also have been diagnosed with vitiligo. I really have no symptoms other than loss of color and a little bit of fusing of my minora to majora. The doctor prescribed me Clobetasol to use twice a day and then he said we will monitor it and eventually use it twice a week. Since I have not experienced pain with sex and my opening is good he told me to continue having sex. I have really read nothing but horror stories online. The doctor made it out like I will use this cream and it should control the LS. I know this a life long diagnosis and there is no cure. My question is...will my LS progress even with treatment? Plus, what is a flare up?
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When I received my diagnosis a month or so ago, I spent a lot of time reading this forum and learned an overwhelming amount of information. One post that stood out was someone who had managed to somewhat reverse their fusion with a baking soda spray treatment. I can't find that post, or remember what thread it was posted on, and I'm hoping someone can point me in the right direction. If there is anyone else who has managed to reverse their fusion.
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just been reading some of your comments and diet was mentioned, I try to have a healthy diet , don't eat a lot of spicy foods, I always buy fresh veg and only eat fruit like bananas that don't have much acid in. I must admit to having a sweet tooth and do like sweets and I have noticed more flare ups if I have lots of sugary foods. Try to keep my sweetie intake to a minimum which is hard because I think if you suffer from LS you need the occasional treat to cheer you up.. Maybe my fairly bland diet is helping to keep the LS stable
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My Mother suffers from Lichen Planus, which I know is not exactly the same as Lichen Sclerosus. She has recently found urinating really painful. She has today found a convenient way to make things a bit easier. She fills a sports drinks bottle with warm water, and squirts this against herself when she urinates. It is soothing and also cleanses the area each time. hope this may help some people?
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I was diagnosed last year. I also had an early menopause as a teenager so we are looking into IVF to have a baby. I am struggling to find info on how LS affects pregnancy and birth if we are successful? Also thinking that the steroid cream can't be good for pregnancy?
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I have questions about the clitoris being buried. My first LS breakout was about 7 months ago. Have had a couple less severe ones since. I've gotten tremendous relief and healing with the hydrogen peroxide/saline spray, and Caprylic MCT oil (derived from coconut oil) Didn't even know what the heck it was until I found this forum. Have not been to doctor but will make an appt. Noticing as I examine myself that area that my clitoris may be "disappearing" behind folds. I've been reading on this forum and wonder: does the steroid cream reverse the fusion a bit? Enough to free it again?
I had a friend who had a procedure to "free" her clitoris -- not an LS sufferer, but her architecture was such that it was covered up & couldn't climax with her husband all their married years. She finally did some research and found a doctor who specializes in this, and he said "you're 100% covered up". With a minor procedure, she is now normal down there and able to be satisfied with her partner.
I was just wondering if the steroid cream or perhaps this procedure could restore my clitoral area as well. It's been such a short time and my sex life was very satisfying just months ago! I'm 53, btw.
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I'm going to have a biopsy done in few weeks time. I was advised by the dermatologist to get some metope (sp?) gel and apply it 1/2 hour before the procedure. However, I look at the instructions and you have to put an air tight covering over the area once you've applied the gel - something like cling film I think. But how will that work on my fanjo?
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have any ladies had the CO2 fractional laser for LS? The reason I ask is that my dermatologist has finally given me the name of the laser they have suggested for my treatment as I'm struggling with the steroids/HPV warts cycle. They have suggested having the CO2 fractional laser followed a couple of hours later by PRP treatment. The dermatologist said they see the best results with ladies who have this combination on the same day.
over this last week my left labia minor has disappeared 😟 Completely and I have struggled to keep the itch at bay. Although the white patches have diminished. in the last week I had to use the Betnovate but after a day the itch/pain was so bad and not subsiding, that I used the dermovate, this I think was the only thing that helped with the itch eventually. But as I struggle to use these creams I have to be very careful as they induce warts.
Hence the doctor has suggested I undertake the CO2 laser and PRP combination next week.
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Does that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
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Was diagnosed a few weeks back and steroid cream helped loads but tonight I have what can only be described as a tightness to my clit ( sorry tmi) almost like it's being pulled back ...
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I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.
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I feel such a failure. I'm a trained nurse I give other people advice all the time yet I cannot help myself...let alone others. This is so difficult. I thought I was healthy. I eat well and have a positive disposition...well I used to. Will I ever be the same again?
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I wish that was so,but in the world i have been it,men want sex,you all have boyfriend commintments,i bet there isnt 1 person on this site that has had this terrible deisease was single and then found a loving man that was understanding.not likely!!!!.i have problems just like anyone else,but i cant think of what could be worse then this,oh wait yes i can,not ever being able to live in a place of my own,some man wrecked that for the rest of my life.i have about 3 problems in this life that will never ever go away,1 of them being this stupid disease.the other 2 can never be fixed either,but this one is the worst of the worst.why do we have this?i just dont get it.negetive or not,i know i am single for rest of my life.you all have men i'm sure of it.or there is just a few of us that are on here that is single,i wonder if the ones that are single feel they will be single forever.there just has to be some answer to this.they have a so called cure now for hep c took years.well i will be long gone when they can fix this one.i wish i could be postive some how but really how?
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So I saw my PCP yesterday. Hadn't been able to get in to her for two years. She was great at listening to me. Finally after 10 years with LS she is referring me to a gyn at the hospital.
I want to ask for an estrogen cream. So my question to you all is what do you use on your vulva and do you have it compounded in something. If so what is it compounded with.
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Hello, I am a 48 year old woman who was diagnosed with LS four months ago, having been suffering with increasing symptoms for over a year. I started menopause early, aged 43 and as a result of a routine blood test for this also discovered that I have an underactive thyroid so take levothyroxine daily. I've been managing the LS reasonably successfully in terms of daily comfort and sex life but as you can tell from the title of this post, I am an equestrian and this is where my real problem lies at the moment. I have two horses and until several months ago rode at least 6 times a week. As my symptoms were progressing and before diagnosis I tried everything to relieve the pain - vaseline, feminine pads, gel filled saddle savers etc. If I space my rides and only go for a light hack I'm fairly ok, but any serious riding and I'm wrecked afterwards. I have just purchased some cycling shorts with what was described as a 'perineal relief' pad in the gusset area - hoping I could put these on just before riding and take them off again if they help. I have also gone so far as talking to a saddler (male, so that was fairly embarrassing) about the possibility of using a gel pad with a hole in the middle on top of my saddle. He is having a think, but there are lots of ergonomic issues with balancing on top of a horse which also have to be considered. Does anyone else here manage to ride (or even cycle) successfully using remedial padding or accessories of any description or am I facing a life without horses?
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