Lichen Sclerosus :: Terrible Pain All Over Vulva Area
Jun 27, 2015
I've been in really agonising pain for 12 weeks now. At first I thought it was an infected tear so was prescribed Amoxicillin which did help with the soreness of the skin, but it was the dreadful aching all over the vulva area that just continued.Three visits to dermatologist during that time and I eventually ended up in A&E I was in so much pain I could barely walk.I was examined thoroughly by a Gynaecologist Registrar The upshot of that A&E visit and the 3 Dermatologist visits resulted in them deciding it was Vulvodynia, and I've been prescribed 15mg Amitriptyline and to gradually introduce 300mg Gabapentin daily. Co-codamol 4 times daily and Oramorph when needed. Presently I'm up to 200mg Gabapentin and 15 mg Amitriptyline but it doesn't seem to help much yet. Does anyone know how long it can take to help with the pain? I've been on 10 mg Amitriptyline for 16 years and it's always helped but not this time. I'm at the end of my tether and spending most of the time in the house because it's so agonising and really difficult to walk about. Does anyone have any ideas how long these medications can take to kick-in?
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In a bid to get fitter, I bought a mountain bike, since I did used to love cycling. I guess I did not think it through and realized so, once I sat on the very hard seat.
Any tips for people who are cycling currently with vulva issues? I have seen some saddles with what I can only call 'slits' in, which seems like a good solution, since the pressure on the vulva area would be less?
I also read that wicking away material is good and I to measure one's sitting bones. (Not an easy task).
So, question. Any other ladies managing to cycle with LS on the vulva? I also suffer vestibulitis, vulvodynia. However, not to be thwarted (!) I am happy to look at a new saddle. It would appear one with a cushy part for the sitting bones and a slit for the vulva to relieve pressure is the way to go? Any tips, any experiences, that may help would be much appreciated. Or, names of seats (that are not too expensive if possible).
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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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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'm 46 and have been diagnosed with LS for approx 8 months. Can't seem to get it under control and despite using hydro mol, and both steroid creams I find I am now in a worse state than I have been for sometime. In tears every time I go to the loo from pain both front and back. Can't use the steroids as I now have raw skin and it stings. Been recently on antibiotics and wondering whether this has had a worse effect although reading about this does not seem to cause a problem. I have scarring and the piece of skin between both areas in now extremely sensitive. Been to see doc and dermatologist but never seems to co inside with a bad outbreak. Haven't had sex for months now which is also depressing as worried about husbands need a even though he is very supportive. Just can't seem to speak to anyone who understands. I've also got vitiligo apparently this can be linked or is seen to be linked to LS as an immuno problem but nothing else. Can anyone help with any suggestions for relief?
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I have been dating my boyfriend for over a year and we both lost our virginity to each other and neither of us, have cheated. However, one month ago, I noticed a line of bumps from my vaginal opening to the lips. They're really small and they worried me a lot at first. However, being with only one man, I figured it couldn't be anything transmitted sexually. But, recently, it's been burning when I go to bathroom, or even when I'm just sitting down. I'm just worried that it's something I can't get rid of. My boyfriend did have a wart on his hand, and I'm just scared it could have transmitted from that?
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My clitoris and inner and outer surrounding area has been itching crazily since past 2 days. The itch started with my periods. I have never experienced such a thing before. Also, had trimmed down there just the night before.
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I had eczema on my perineal area & was cleared up with cortisone cream, now it is red & burns like fire. I also have a lot of itching along with it. I was thinking maybe the cortisone was too strong & did this. Has anyone else had this problem & what could i do about it? It is driving me crazy.
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I am 16. Female. Never done anything sexual so i am 100% sure this is not a std or anything of the sorts. SO, i started to shave young (pubic hairs..bikini line, vaginal area) at 12 or 13. And ever nice i started i would get these in grown hairs. I am half black - so i guess i am prone to that (curly hair growing inwards). But now almost my entirety of my inner thighs are covered with these dark marks and scars. And too many ingrown hairs. I am too embarrassed to go swimming, I never wear shorts because you can see them. Also I have these sick pimples down there... Waxing - - the scars are still there! When i was younger - i was dumb enough to pick at them and.. well it is just getting worse over the years. !
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I have been going through a second flare up and dermovate is not working. Now been given protopic as not responding to steroid creams. I need advise on the itching which is literally driving me mad and the lack of sleep is interfering with my work now any advise on creams, diets etc!
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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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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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