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I have a question for you all. I had a flair up back in Jan, due to a yeast infection, that took quite a long time to get under control with clob. Things are now all healed, itching is gone and in general everything looks back to normal. My issue is this. During and after sex, my vulval area is super sensitive. it feels almost like friction burn (I am using lots of lube). This never happened before. I am not sure why this is happening, because there arent any cuts etc. When I had that flair up I had to use the clob 2x per day for 2 weeks, then tapered to 1x for 2-3 weeks, then every other, and now I am applying every 3rd day. Does this sound like it is more a reaction to too much steroids? or is this just what sex is like as LS progresses (even though things look fine). I have never been offered topical estrogen and am wondering if maybe that would help... Really hoping this will subside 😦
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I understand what you're describing. I had the friction type burning- like little cuts had been made during intercourse over the last few years since my diagnosis of LS. After a while, It put me off so I didn't want to do it as the discomfort/pain outweighed the enjoyment. Then recently when we tried again it was so painful we had to give up as penetration was way to painful (sorry if tmi). I've since been back to gp and re referred back to gynae. Appointment not til June though. Thinking I would like to try oestrogen but it's never been mentioned to me. I'm 45 and peri menopausal 😏
were you using the clobetasol when this was happening to you? This disease is so frustrating.. I am 30 and really hoping to find some solution. I have a dermatologist appointment next week where I will be asking about topical estrogen.
I haven't used Clob or any other creams in over a year. The clob healed me in the beginning but then it ended up being the cause of a vicious cycle of flare ups and yeast infections. So now I do baking soda soaks when my symptoms are acting up. The main way I keep my LS under control is through diet. When I have intercourse I have not had to use extra lubricant, just natural. If I have eaten something that is on my bad list and have intercourse, I will get tearing and friction burn. Usually if I do a baking soda soak after sex I heal right up. It is important to find what is causing your body to flare, that is the only way I have found normalcy and escape from medicines.
Also, keep in mind, it is not only diet that causes flares. I have noticed that when I get stressed or anxious that will cause me to flare as well. That's when I take me time and get my nerves in check. It is sad to say but sometimes it is a Godsend. Too many times I have neglected myself and this illness makes me take ME time! It has been so healing in so many ways.
I agree. As much as I hate this disease and wish none of us had it, I wonder if I will end up having a healthier life because I am determined to try to get it under control!
So right Starlight, definately stress and too much worrying about other people thats me. I notice flares during stress and indeed grief and anxiety caused mine, never had it before my Mam died. Hobbies and trying to tell ourselves we deserve me time helps. xx
In my opinion only being new to this for two years now, the more clob you use the worse it gets. You really need to be careful with the amount of steroid cream you use.
Try taking a break and use good old Vaseline.
I agree. for the past year I have only used the tiniest amount 2x per week and it worked great. Unfortunately that last flair up took quite a bit to get under control and stop that unbearable itch and the white patches from spreading.
Jessica, I don't know your age, but if you are menopausal your issue may be lack of estrogen. I eventually developed vaginal atrophy years after menopause. It was recommended that I use hormone cream for the AV over 3 years ago but as it wasn't causing any serious problems I chose to avoid hormones due to breast cancer in my immediate family. Unfortunately low estrogen may have been the reason that I developed LS which was diagnosed last spring. There seems to be no hard and fast cause of LS and both genders get it and at various stages of their lives. However, my gyn's theory was that my LS was due to lack of estrogen. I now use a very small amount of hormone cream nightly for the AV and a medium strength steroid ointment as needed for the LS.
I would discuss the possibilty of atrophy with your gyn. You don't want to be overusing the steroid when it may in fact be estrogen that you require.
Thank you so much for taking the time to respond. I am 30, my hormones are def a bit out of whack so I really wouldn't be surprised if this burning sensation may in fact be due to low estrogen. I have a dermatologist appointment next Monday and am really hoping that he is able to help. Before that last flair I had things quite under control and didn't have any of these uncomfortable feelings with sex. I am really trying to stay on top of things to slow LS progression, but this disease is tricky 😦
jessica, Not sure if at 30 your issue would be low estrogen, but a blood test can tell you your estrogen levels. Don't know if a dermatologist would be ordering that. Has your gyn never mentioned it? A visit to a dermatologist is a good idea though. You may have a more complicated skin issue going on. Good luck.
Hello Jessica, I am a male who has been dealing with LS for almost 8 years, I use Clob which I apply either every other, or every third day. For sexual purposes however, I need to apply more regularly - even twice a day on occasions. If you can, pre-empt activity and apply the Clob in the morning if sex is a possibility for later the same day can be beneficial.
There are two essentials I have learned from these Women's Health / LS Forums - i.) it is of minimal benefit merely applying Clob (or whatever steroid ointment suits your skin best) - as Starlight8 highlighted in a comprehensive list She posted - the skin HAS TO BE regularly stretched to maintain elasticity and suppleness. I do this when I apply the Clob by using gentle massage motions and by deliberate movement of the skin in different directions ..
ii.) I am now using a combination of things that I apply to all of my genital skin, I am now using liquid Coconut Oil, and a tip Nancy KB gave on mixing Aloe Vera Gel with Essential Turmeric Oil - I would try "Nancy's Mix" first. Get a clean airtight container and add 2 tablespoons of Aloe Vera Gel (you can get 99% pure) - start with a mix of two SMALL drops of the Essential Turmeric Oil - mix well together. You can apply this to your entire genital region using a light coating, and again use a massage and gentle stretch motion to apply it. You can step up the mix if you get no adverse reactions to using a 4 drop mix, then try this a few times - then a 6 drop mix. Obviously, stick with the mix that has the greater beneficial impact.
The smell of the two mixed together is wonderful, and in itself, can put you in the right frame of mind to face anything, in itself.
So for sex, I would try the Clob earlier that day - then try a light coat of the "Mix" or the Coconut Oil immediately prior if you can ......
Wee, wouldn't there be an issue of transference of the steroid to the other person if you were using it the same day of having sex? My doc says steroids are good for unhealthy skin but not for healthy skin.
I think the only person that could answer that question adequately is a biological chemist. Taking the opposite approach, one item I saw on this issue recently even suggested oral would be okay - but obviously, there has to be some element of risk here. So if you can separate the two activities by as many hours as possible - that would be the best approach, I think.
My suggestion would be Steroid applied early morning, then I have found either the Coconut Oil or the Aloe Vera Gel mixed with Turmeric Essential Oil immediately prior to activities is the best way to keep my genital skin as heathy as possible …..
As with everything in life, there is some element of risk - getting on an aeroplane, for example. A bit like this - if you don't want the risk of being knocked down by a bus, never cross a road. This would inevitably mean that you would live a vastly restricted life - where the presumed risk is vastly outweighed by the actual risk !
Yes, but in this case it would be the other person getting hit by your bus, no? Have you asked your doc about it? I imagine they would have an idea how long a steroid would be effective. I'm paranoid about the use of them in general but as I use a milder one maybe there's a bit more leeway.
When I was a kid we used to have our feet x-rayed at the shoe store to see how well the shoes fit (!) so we tend to learn of dangers after the fact.
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