I am 38 & live in Cape Town, South Africa. I had 3 1/2 years of fertility and now have 2 beautiful boys who are 5 1/2 & 4 1/2...so my 'lower half' and I have been on quite a bumpy (painful & invasive) road for the last 9 years...
I was diagnosed with LS about a year ago (by my dermatologist after a year of misdiagnosis by my gynaecologist...as thrush). I think that this subject really needs to be made more available to South Africans as there is no literature on it here and our gynaecologists don't seem to know much about it or how to diagnose it.
Quite a lot of skin damage was done before the correct diagnosis so by the time I started using the dermovate I was already in quite a substantial amount of pain (redness, itching, painful sex, painful passing stools etc). There has been some discolouration of the skin and the texture seems to be different (sorry so graphic).
My Mom and sister are very supportive but clueless so it would be great to chat to those who are experiencing the same things as me. Please advise of products to ease pain...especially which soaps and lubricants to use.
My husband also knows but he is in denial...where I have been for the last year!
Thanks for reading...Leah (not my real name, sorry)
Sorry to hear you have LS. I am 18 and was recently diagnosed too. I have been given dermovate to use 2x daily for a month, 1x daily for a month and then every other day for a month. So far I think the dermovate is really helping with the relief of symptoms.
I would recommend dilators highly to help with stretching your vagina if you are feeling pain during sex as this can be from narrowing of the vagina due to scarring. With frequent use of dilators, the pain lessens quickly.
I have been told a lot that coconut oil is good for healing the skin and reducing fusion, you can buy this from a grocery store. I think you should try this if you haven't already. I do not think everyone has fusion and if you use the right treatment and treat your downstairs well then you should not really (hopefully)
Also, I have heard a lot that changes in diet can help reduce symptoms. Lots of people find cutting out sugar to help. It might be worth going to do the doctors and finding out which foods you are allergic to, cutting down on them may help
Some people use aloe vera and find having warm baths and using powder relieves symptoms.
I have been told not to use soaps at all or shower gels. There is an aqueous cream I was given and I think most of us use that for cleaning.
This is quite a lot of info and I personally have not done it all but am just regurgetating what I have read/been told!
You may also want to look into your estrogen levels.
There is a webinar on the forum, I haven't even seen it yet as I was diagnosed a few days ago and have been doing lots of revision for my exams so haven't had time! But I will definitely watch it soon. Maybe if you get your husband to watch it with you he will be more understanding
It's sad how there is not much information on LS. It seems everything on the internet is just the same info worded differently and just says to use the steroid ointment.
go commando - being in SA you may be rather warm- but do wear long skirts!
LOOK at the area regularly
take photos - on a camera not a phone
screen print the webinar by Dr Goldstein- there are several slides which need to be studied and i preinted them off for my gps in the UK - so it isnt only in SA that medics are unaware
Dont use nice smellies in the bath or put them anywhere near the undercarriage!
keep moisturised aqueous ointment is good
keep the body fluids off the skin - use a barrier cream
some find spraying with a pinch of soda bicabonate in 100 ml of water after a trip to the loo helps and a handful in a bath
be really careful withyour hygiene - remove all old ointments before applying more
Dab not wipe
Dont worry about being graphic - sharing info is very helpful to those who read these threads - but may not write -
keep your stress levels as low as you can - or manage it by taking up exercise having fun and laughing!
In time things will improve but it takes patience
changes in hormone levels and stress are 2 basic ingredients of LS
look at your diet - keep sugar levels low - keep a food and mood diary and see when things improve/ worsen
Not only in South Africa are doctors misinformed. They are all over the world. I think that because this is mainly a woman's disease, though some men get it, no one seems to know the difference between UTI, Bladder infections, thrush infections, etc. etc. etc. Maybe if more men had this, there would be more research dollars put into it. (Terrible of me to think this way. lol)
The thing I have to report about my LS is that it flares every now and then. I am not quite sure why. Sometimes, I think it is stress related, but then, I was on vacation and having a great time, when I got hit with a flare-up and it practically ruined the rest of my vacation, summer and into Fall. Since then (2008) I have had 3 really bad flare-uos. It's gone from genital area to whole body. This past winter was the worst time of my life.
I avoid soap, use body wash for babies..... Cool and short showers. I am using Clobetasol ointment and Dovonox. I avoid rubbing my skin with a towel, but rather, just pat myself dry, then apply a moisturizer. Have to be careful with them, some ingredients irritate me.
Everything that you mentioned above, I have experienced. Sex is now out of the question because of fusing. Just a horrible disease. All I can tell you is to keep lubricating the area. Clobetasol can only be used sparingly for two weeks, then I have to reduce the number of applications until I am healed. Probably a month.
The info given is good. My doctor also said not to use bleach or fabric softner on my undergarments or towels that might have to touch me there. I rely on coconut oil to protect skin after bathing. If using Clob wait to use the coconut oil for an hour or so after medicine so clob will be effective. Good luck and hope you find some success in treating it.
I also found that the lack of information among my doctors to be disturbing. I even had one give me Premarin to apply to aid the condition of the skin, and then another finally did a biospy and identify the LS. He gave my Clob and referred me to this site to learn more.
I had a removal of my ovaries and uteres for cancer about 7 years ago and then after that was when the LS developed. I tried over the counter meds for a few years then I finally ask the doctor to help me. I think the dietary into is important also. I am off gluten and dairy, and try to stay off sugar. When I do eat veggies more I think I am better. Good luck and keep reading.
So sorry to hear your suffering. I was diagnoised about 2 years ago. My GYN put me on Clobestro l cream in a tube 2 times a week. It helps a lot and will stop the spread. I use a very gentle soap on the area, never soap with detergent, I use baby wipes that only have viamin E after each time I use the bathroom. I also developed Hypothroyid, choking while eating and many bladder infections. I use a salve like vasoline after the wipes to keep the area from cracking and tearing. Many of these other problems appear to affect many of the women. KEEP THE AREA SPOTLESS, most important. I wish you the best from Florida, USA
Those who have walked a bit in your shoes may be able to better understand, they say. My biggest help came from baking soda baths and rinses and application of coconut oil for moisturizing. Glob for maintenance twice a week.
Trying to live a life without too much stress (a bit of a challenge at times) Cutting out food items like sugar, alcohol, gluten, caffeine and most dairy. Plus hormone replacement. Supplements may have an added affect - vit D, C for instance.
Wow, thanks for all the replies and information...I finally got the guts to write to you all late last night and now I am very pleased I did so thank you!!!
Couple of quick questions:
In terms of hair removal (keeping it neat), I haven't been able to do much but does it help to keep things shorter or should I just leave alone?
Coconut oil - as in the stuff I use in the kitchen?
Can I use normal aqueous cream that comes in the tub?
Food stuff - trying to cut down on sugar and carbs...not so sure I will manage cutting out the caffine and alcohol with two incredibly active (naughty) little boys - I do need to survive
Barrier cream - do I use baby barrier cream or is there an adult one?
I was told that my ovaries (eggs) were old - hence the fertility (even though I eventually fell pregnant naturally with both boys)... I suppose this could mean that I going to hit menopause early...therefore the hormone changes?
Stress...job, husband, small kids...LS...creating a lot of stress in my life at the moment. Not getting to the gym as much as I would like. I have also had 7 knee ops and both ankles which doesn't help so swimming at the gym pool is the best excercise for me but LS flares up when I do a lot of training!!! *angry face*
Thanks again, so pleased that I have finally got the courage to face LS and to actively do something about it...need to do a lot of work...
'When women support each other, incredible things happen!'
could the chlorine in the pool be causing flares? there was a thread about that a while ago, maybe you could search it. I'm having to rush out, sorry so I've only got time for a quick reply.
Nappy cream is good. I used Weleda Calendula nappy cream to good effect, others use a barrier cream with Zinc and find it soothes. Coconut oil - I use organic raw food grade from my local health food shop, and keep a tub in the bathroom to use after every visit. I've got young kids too but found that I drastically reduced coffee, and have now managed to cut it out. I still have the ocasional glass of wine and don't flare. And REALLY enjoy it for the rarity!
Normal aqueous cream ok but check for perfumes and avoid if there are any. I found something called Epaderm much better, if you google it you could find out if there's an equivalent where you are.
Got to rush off now, hope that's helpful. We're all different and have the things that work best for each of us, but you'll get to find your own favourites as you go.
I am intrigued yor GP/ Doctor referred you to this site...... That speaks volumes - i hope lots of doctors ARE reading our threads too!
There is a theory that oestrogen cream on the vulva when the hormone levels are depleted witll plump up the tissue in the area- hence the Premarin I suspect- however if you are on HRT it is thought to be unnecessary
As a matter of interest when i was on the 5:2 diet last year i was so much better LS wise and there was an article that said after a fast of 72 hours the immune system was rebalanced after going into a decline during the fast - but I havent read any more on this subject recently
Thanks Sue... a lot of useful info. I have some time off work tomorrow so need to get a few products...
Love the commando...hee hee... but we are heading for winter so starting to get chilly here!
I much prefer the cooler months as I have rosacea (on my cheeks) which is worse with heat so no hot showers or baths or hairdryer as it makes my cheeks bloodred (so does alcohol).
Excuse my ignorance but is it fusing of the walls or the vulva? The tightening (and therefore cracking) that I experience in between my vagina and anus and that skin has become quite hard underneath but very fragile on the surface...??? I actually thought for a while that it felt like a growth.
Thanks...I am going to get some vasoline...always worries my when applying creams and ointments that some goes on the inside too much and that is not good?
I definitely think it could be something in the water but I also think the friction on that area in a swimming costume in liquid for extended periods of time (1 hour) doesn't help...would be nice to know the answers!
Another question: should I be seeking advice from a specialist other than my dermatologist? I don't think I would ever take pics of that area myself but maybe I should ask my dermatologist (like when she does mole mapping pics)?
Started watching the webinar but only got 10 mins in before I was called away so definitely on the agenda tomorrow...having information overload as it is but maybe not a bad thing...
