New to site, LS, live in Cape Town
Posted , 10 users are following.
Hi,
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)
1 like, 46 replies
kasiaj LeahRSA
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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.
I wish you well and I hope I helped a little
Kasia
LeahRSA kasiaj
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Chat soon, Leah x
suedm LeahRSA
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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
Read the New to LS
keep your pecker up!!! take care Sue
LeahRSA suedm
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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).
Thanks for all the info... Leah x
hanny32508 LeahRSA
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suedm LeahRSA
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t1992 suedm
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suedm t1992
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t1992 suedm
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suedm t1992
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t1992 suedm
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Octopus_1289 LeahRSA
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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.
Good luck and take care.
LeahRSA Octopus_1289
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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 for the info... Leah x
Octopus_1289 LeahRSA
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LeahRSA Octopus_1289
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My citrus is 'disappearing'...so is sensation and a lot more difficult to have an orgasm. The skin at the 'back' of my vagina is thin and tears and bleeds after sex...is this fusing?
Should I be seeing someone other than my dermatologist?
Thanks...x
LeahRSA
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Octopus_1289 LeahRSA
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suedm LeahRSA
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you are having tearing the subsequent scar tissue becomes more fragile and likely to split again- so the ideal is not to split. This is the area to which you should be applying your Dermovate .
If you are splitting enough to bleed then you should nt be having penetratie sex for the time being
The problem we have is that Dermatologists dont understand the vulva and wont look at the area - gynaecologists are surgeons and dont understand the skin condition
your best bet if you can find one is a specialist in the vulva- a branch of the gynaecologists speciality
LeahRSA Octopus_1289
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So, do I go to the gynaecological who didn't know what it was (and who I went through both my pregnancies and births with) or do I try and find another who has more knowledge?
Oh I really should have had the guts to ask people for help sooner...It would have been easier...I was just so shy and thought I was doing something to cause the itchy pain!!! Crap....staring to feel disheartened.... x
Octopus_1289 LeahRSA
Posted
As for which doctor you need to see, I would go with the one who gave me the most help.
Like you, I was so shy about discussing this. I thought I could handle it with over the counter creams. It took years to get diagnosed and only then because I asked a Dermatologist to remove a black mole from underneath my breast. I asked him if it looked cancerous and he said that it did not. But he said that he knew what it was and would be calling me when the biopsy report came in. He looked at me and then asked if I ever have any itch and soreness "down below." God bless him. He was an older man, and shy too. He directed me to a gynecologist and that is where I got the diagnosis of the genital area.
We, as women, have to speak out about this and share like we are doing on this forum. I have learned a lot from this site and there seems to be a lot of common threads here.
I have found that soaps, any scented moisturizers, tight clothing, especially containing spandex are a no-no. I am sure that there are foods too that contribute to flare-ps. I am beginning to avoid yogurt and other dairy products one at a time to see what happens. We have to be masters of our own bodies.
Sorry to be so long winded!
LeahRSA Octopus_1289
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So I am making an appointment with my gynae because even though he didn't diagnose it because of lack of knowledge he is a good gynae and I trusted him with every decision of my two complicated pregnancies and with the c-sections etc.
I will ask him to have a look and also to do some research of his own of which collegues are seeing patients with this and who I can see...he owes me that much with a misdiagnoses!
I agree with you, it is going to be a matter of research on my part...my dermatologist did say to me that I need to keep a diary of the flare ups and try to see what is causing it...
Leah xXx
Octopus_1289 LeahRSA
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Hugs
hanny32508 Octopus_1289
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hanny32508 LeahRSA
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Baking soda baths and rinses plus coconut oil richly is what I recommend.
Octopus_1289 hanny32508
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