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Hi, I am 19 years old and have been living with this condition for over a year before I was finally given steroid creams for this condition in May of this year. I do not have a specialist appointment until June 2019, and I am worried about more fusing occurring in the mean time. Is there a way to stop the fusing occurring on the inside, or do only dilators help with that? I have switched to a paleo diet, as I find gluten and sugar to be my main triggers for flare ups. Unfortunately, I haven't really had any peaceful moments during these few months, and could not go more than maybe 4 days without applying the steroid creams. I would really appreciate some suggestions for other moisturizers I should use maybe instead of always reaching for the steroid cream to alleviate the intense itching. Any other tips would be very appreciated. It is hard being piled with work in a difficult program in university, and having to deal with trying to tame this condition at the same time.
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This does NOT have to take over your life!
Good luck to you!
I wish I could give you some tips, but I'm in the same boat as you. I have fusing and itch. Is there any way you can get an appt. sooner? June is too far away! There must be a way you can see somebody else sooner. I have a few doc appts. lined up to see what will work for me. I currently use clobetasol and estrogen (I'm 53). Clobetasol used to work for me, but then when I hit menopause I got the itch and fusing even with clobetasol. My gyno doesn't know anything else to help with fusing or itch. She said maybe I could try CO2 lazer or light therapy. I recommend you join some LS facebook groups. Besides this group, there is also available help in those groups too. Many ladies give tips on help with fusing and itch. I just want to wait and see what the doc suggests. Lisa
One more thing...the docs I'm going to see will be UCLA specialists in LS. I want to wait for their suggestions. I'm very sensitive to many things.
Hi, I'm older than you but was finally diagnosed five years ago after years of being fobbed off by doctors (a common story among us older ones here - but thankfully appearing to become less so), by which time I was in a pretty bad state. Since then I've tried all sorts of things and have found a routine that suits me, I can forget that I have LS most of the time now and just fit everything into the way I live now. You will get to that point too, and this forum is a fantastic support and source of ideas. It's great that you've been diagnosed (though obviously it would be better not to have it), so now you know what you're dealing with and can concentrate on making yourself feel better.
Firstly read the thread 'An Experiment with Borax.' Many of us, myself included have found relief by using a dilute spray after every toilet visit. I can only speak for myself, but for me the itching stopped immediately and it halted the progression totally. I rarely use steroid now, maybe for a week once or twice a year. Some people find the borax too strong, but have been helped by a solution of baking soda/bicarbonate of soda (are you in the UK or USA? things have different names). I can't use bicarbonate, but the borax has been a lifesaver.
It's important to remember that different people suit different things. Whenever anyone posts something they've found helpful, I try it, but if it doesn't suit I move on. LS needs change as it 'gets used to' things. So find maybe three things that suit you and rotate them. For moisturisers, many people use coconut oil, I did for a while and then it started to make me sore. Now I use avocado or extra virgin olive oil, just the normal culinary ones, the best quality I can afford, and I put essential oils in. At the moment I'm experimenting with chamomile matricaria, frankincense, turmeric and palmarosa. I alternate with an over the counter eczema product called Epaderm ointment and a homeopathic remedy called Madelaine's cream (available online). I use medicinal manuka honey after I dilate as I often get little tears. I've used Emu oil, aloe vera gel and all sorts of things from the doctor, but, in time, this is the routine that suits me.
I'm always better on holiday which demonstrates to me that stress is a big factor. It's easy to get stressed when you are sore and itchy, so get on top of the condition and don't be too hard on yourself.
Food-wise I have really limited sugar, not cut out as we grow fruit and I love my home made jams so I have a small scrape for breakfast and that's my sugar load for the day. I have made all our own bread for years now as my son had a what allergy when he was young - now I make 24 hour sourdoughs and we are all fine on that. I firmly believe that many people who think they are sensitive to gluten are actually reacting to the rubbish that's in commercial bread. Try to eat good quality sourdough from an artisan baker and see if that suits you. Maybe have a chat with the baker and see what they might suggest. Most of our commercial breads are shockingly unnatural and have a paragraph of ingredients in, things we really shouldn't be eating. They are also accelerated and the flour doesn't have time to do its chemical processes which change the composition of the flour to more easily digestible substances - by fermentation basically. I eat a very minimal amount of processed food and mostly cook from scratch. Soups are quick and filling, you can make one to last a few days and keep adding to it - the old-fashioned stockpot. I also firmly believe that you have to enjoy life as well and, for me, that means enjoying food. Also I have a busy family who would rebel if I introduced any restricted diet - (and I'm not cooking twice, I'm too busy) so I can't focus on making my diet perfect; I just go as good as I can and don't stress over it. I might just be lucky and less sensitive than others to food, I don't know. I reckon that less stress will outweigh the glitches in my diet!
You will find your balance, I hope this gives you a place to start. Read the forums (forii?), see what people are trying and work outwards from there.
I recently went on vacation and it actually made everything a lot worse. I couldn’t even walk without having to scratch every second. I am not sure why, but I am assuming the heat might have played a part.
I have also found a lot of joy with starting to eat an auto-immune Paleo diet, and I just cook for myself instead of eating what my family has for dinner. The first month I felt a lot better, and got down to using the steroids maybe twice a week, but for some reason this flare up will not go away. I have thought about not drinking coffee, but as a student that just sounds like the end of the world and I do not want to make myself more miserable.
Thank you for all your help.
I'm 18 and it's likely I've had this condition for most of my life, only having found out 5 months ago. It is still active at the moment and I have had fusing too and am still looking for a way to stop or reverse this. I have cut down on nearly all gluten and sugar and cheese. I have been using baking soda rinses and baths which seems to relieve itching. I am now using a mixture of coconut oil and frankinscence oil to moisturise and am going to try emuaid. I have not had much relief with the steroid cream after using it for a few months so I use it once a week. After just sitting my school exams this summer I too am now starting a difficult course at university and understand how hard it is to deal with this at the same time. I hope you find something that works for you. Liv
It feels nice to know that I am not the only young woman going through this. Have you asked a doctor about the fusing? I haven’t been able to get a specialist appointment because everything is full, so I will not know anything about how to stop fusing until next year.
I hope things get better for you as well, good luck with university.
The fusing is unfortunate but the doctor has said on the bright side I have at least caught it now and can stop it from getting worse. Apparently the strong steroid cream (clob) will prevent further fusing. That's not so good about the appointment, but my doctor also said that to prevent it getting worse it is just as (if not, more) important to keep the area moisturised with an emollient - this is probably more easy to find. I was given dermol lotion although I am currently using coconut oil because I think it will be more beneficial.
I am changing doctors to another who suspects clob is too strong and has given me hydromol ointment as a moisturiser which I use occasionally.
I know I will be living with this condition for a long time so am also taking different approaches with homeopathy, the diet changes and taking supplements: multivitamins, probiotics, starflower oil to reduce inflammation and beta-glucan capsules (an immune system modulator). I have noticed improvements to my overall health with these and can only hope they will help with this condition.
Welcome to the group. I’ve joined a Facebook page also Healing with Borax that is helping me. I’ve just started sitz baths with baking soda (1/3 cup) & 1/2 teaspoon of borax (easy to find in laundry soap aisle). It seemed to get worse for the first week or so but that doesn’t happen to everyone- and I kept with it, I had to cut down the amount of borax as I’m so sensitive to everything, 1/2 teaspoon seems just right for me, you have to find what works for you, everyone is different.
I always use a peri bottle of water & a pinch of baking soda after every bathroom trip.
I keep constantly moisturized with emu oil or Emuaid. Some use other things, I’ve tried them all. These work best for me.
Stress is THE biggest trigger, so look into stress reduction- meditation, yoga, deep breathing... and I know it’s hard to not freak out especially with fusing, but you seriously have to keep the stress down.
Best to you, you have support and lots of info here. xoxo
Best to you!!!
Do you use both the borax water and moisturizer after the bathroom? I just started using the borax today, and it hasn’t helped yet. I assume it might take some time
I just realized yesterday that heat and sweat really affect that area for me. I'm trying to eat less sugar because that isn't hard for me to do, but I haven't really noticed sugar being a trigger for me. Yesterday the heat and sweat was an obvious trigger.
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