Lichen Sclerosus :: Daily Discomfort Relief - My Experience
Nov 6, 2015
I noticed a few ladies with clitoris irritation or excessive sensitivity there sometimes. I had this too, but also had daily nonstop irritation in the labia minora area (or where the labia minora should be). The whole area for me down there was either red or white, no nice pale pink supple flexible tissue. I'd been doing the baking soda baths and the spritz after urination followed by coconut oil and using the club after the bath, taking care to rub it in. I also cut all sugar, gluten, dairy, and alcohol from my diet. I was initially quite strict with no sugar at all for a month, then had one serving of berries only daily for two months, and now have either some fruit or a very small amount of raw organic honey daily.
When I got my period, the irritation ramped up. I have since learned that is because of the pH of blood, even one drop of blood on that skin can send it into a frenzy because it was so irritated and raw.
I saw my GP a half-dozen times at least while waiting to get into a gyne. I have to say I am not impressed with my gyne, who I have seen for 2 visits (all of 5 minutes each visit) and all she had to say was that it wasn't a big deal and just use the clobetasol, and lots of it, and come back in a year. By this point the LS had spread to the anal area and I was having tearing, pain, and fresh blood with every elimination. In short, I was not well. I tried acupuncture and a Traditional Chinese Medicine doctor. He was very well recommended and actually is an MD as well, but he never examined the area and we couldn't really communicate fluently.
I continue to see my GP and gyne (when she'll see me), and I continue to use clobetasol daily (since June 2015). I am in no way suggesting that anyone abandon the clobetasol or steroid ointment. But I have to say, what has made a huge difference in my health is going to a naturopath.
She has recommended dietary restrictions and some vitamin supplements, but also introduced me to a product I haven't seen discussed here: ozonated olive oil. Of course, there are different brands and whatnot, and as with anything it seems there are some better than others (something to do with how the ozone is put into the oil and then how the product is stored). It should be refrigerated. It melts on your fingers like coconut oil.
It is apparently a powerful epithelial skin healer. I say apparently because I am no scientist. I read that on the Internet and heard it from my naturopath. It is a strong anti fungal, and I actually thought of using it on the vulva when I was getting the excessive clitoris sensitivity because of something I had read on this site about how fungal infections can live in the clitoral hood skin. Anyways, I gave it a try and I must say, it BURNED. I won't lie. Like when you are holding your hands too close to the flame and want to back up. But it dulls after ten minutes, and I put it on then went to bed, and I was able to sleep, it didn't wake me up in the night. No pain by the morning. It burned the next night too, but every day less and after four days it didn't burn at all.
I keep at it once daily and I have zero daily irritation now. It doesn't even feel like anything is wrong down there. I still have fusing of the labia minora, but I can start to see the outline of a raised edge underneath the skin. The white is more off white than stark white and the red is now pale pink. The skin is stretchable without pain. No bleeding on elimination. Of course, the diet and supplements and clob must all play a part. It's just a suggestion if anyone is interested - just look up ozonated Olive oil and make your own decision. I think it made a big impact on my sanity and emotional capability to handle LS, by relieving some pain.
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I have some symptoms that don't seem to come up on here so I'm not sure if they are uncommon LS symptoms or something else. I'd like to do some research but am not sure where to turn. I believe self education is important but there is that balance between exhaustive reading of everything and walking away from the research to try have some time where this disorder isn't consuming all my time and energy, because as you know, we aren't supposed to get stressed out. I want to put this out to this amazing group to see if you can send me in a direction to help narrow down my research instead of spending hours trying to sort through everything out there. The doctors only have what I tell the to go on and what they see and I'm getting some answers that are inconclusive. To be fair I am early in my treatment and have another referral to see in about a month so we simply may not be there.
I am recently diagnosed and now am quite sure that I have had this all my adult life. I thought I was well educated on sexual health matters, which is why I was surprised (and angry) at this diagnosis this late. Generally it showed up as splitting in my 20's to which I was told "don't have such active sex" and then would go away for years at a time. When I started perimenopause in full force (47-50) is when symptoms started. I had itching and a tingling in my vulva. I get oral cold sores and the tingling I feel on my vulva is similar to tingling that signals a cold sore is on its way. Generally the itching wasn't terrible, instead annoying. I had an irritation (tingling) focused on my clitoris which made me feel like I was permanently aroused. Diagnosis: "it's hormones" and "you've left a sexless partnership you are simply rediscovering sex". (A lot of truth to the latter!) I had a few years of high sexual activity while things were atrophying. I'm now postmenopausal at 51.
My labia minora were always small and now are non existent. I believe my clitoris is disappearing. Not being covered over, simply shrinking. Atrophying. Where other LS patients have skin growth that closes over their vaginal opening I cannot see how that would happen to me. My labia majora seem to be receding. I have recently been given estrogen which may restore some plump and perhaps this receding I see is simply 'deflated' labia. I'm not too worked up about this. What is there, is what I've got.
Since starting the steroid cream, my skin is returning to normal appearance. I had finally calmed my mind down from my initial reaction and worry that my clitoris would melt away overnight. Then last weekend, I attempted to have intercourse which flared everything up. For the first time I had plaques. It was terrible burning, papercut like splits on my clitoris. I believe it's calming down so quickly because of the information I've learned and implemented from this forum. Thank-you all!
The other issue I have is a strange feeling in my pelvis. It's not cramping, but rather like an irritation. From what I know of lichens sclerosus this makes no sense (but I don't know everything!) I have gotten it in my mind that it is the irritation that I feel on my vulva when things are active, simply inside my pelvis. I have recently had a pelvic ultrasound which I believe was normal. I've since fired the doctor who sent me there (for many reasons but not the ultrasound) and my new doc is getting the results so hopefully soon I will know something.
I also have self diagnosed lichens planus inside my mouth. I'm attempting to get a diagnosis on this.
So my questions to you are:
- atrophy. Is this something that is separate from lichens sclerosus or something that just not a lot of people get? Treatment tips specific to atrophy?
- the pelvic tingling. Anyone else have this? Thoughts on what to research?
And thanks again for all your contributions and the things I've picked up from you.
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Lichen Sclerosus :: bladder infections and antibiotics .... share your stories here
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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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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 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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Last week I had a biopsy and 3 days later it was confirmed I have Lichen Sclerosis. I had never heard of it until now,and I still feel as though I know nothing about it apart from the horror stories that I keep reading about on the internet. I feel so alone as I don't feel as though I can talk to anyone about it (apart from my husband, who is poorly with Multiple Myeloma so I really don't want to add to his worries) I know there is no cure, but is a normal life possible? will I always feel as though I am sitting on needles?
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I've just been given diagnosis of lichen sclerosus and been told to use dermovate. I feel a change in clitoral area, does the use of steroid improve skin around this area? I still have great discomfort with burning and stinging!
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Gluten free homemade bread in the bread maker great idea. But I really don't miss it now. I have got used to soup without bread and I only have to remember the bloating feeling I get and it puts off any urges which may occur. I eat handfuls of mixed seeds so getting my ration of those. I wish I could find a cookery book for LS sufferers. Maybe someone should write one.
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