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New to site, LS, live in Cape Town

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LeahRSA
LeahRSA

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

46 Replies

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  • kasiaj
    kasiaj LeahRSA

    Posted

    Hello 'Leah' :-) 

    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 smile

    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 smile

    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 smile 

    Kasia

    • LeahRSA
      LeahRSA kasiaj

      Posted

      Thanks for replying and for all the information...it is all rather daunting as you are finding out too!  Good luck for your exams!!! 

      Chat soon, Leah x

  • suedm
    suedm LeahRSA

    Posted

    Briefly Kasia is right - but other  thoughts are

    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
      LeahRSA suedm

      Posted

      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! smile

      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
      hanny32508 LeahRSA

      Posted

      Leah, you can use coconut oil on your cheeks for rosacea.  Worked with a friend of mine.  
    • suedm
      suedm LeahRSA

      Posted

      No tight trousers or tights* - wear long skirts and long warm socks -  or Ugg boots - *the friction is not good news for the undercarriage
    • t1992
      t1992 suedm

      Posted

      Hi could i ask what barrier cream/s you use as I find bodily fluids make me worse, thanksx
    • suedm
      suedm t1992

      Posted

      I use Diprobase, it is prescribed  I wash with it and use it as a barrier...it works for me. I use it for washing all of me too
    • t1992
      t1992 suedm

      Posted

      thanks suedm, do you use it before/after/during using steriod cream? 
    • suedm
      suedm t1992

      Posted

      20+ minutes after the steroid and after every trip to the loo if possible, I do have small bottle of Diprobase for a handbag .....when I remember to pack it
  • Octopus_1289
    Octopus_1289 LeahRSA

    Posted

    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.

    Good luck and take care.

    • LeahRSA
      LeahRSA Octopus_1289

      Posted

      Hi Selina85391,

      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
      Octopus_1289 LeahRSA

      Posted

      Tightening and fusing is between the vagina and anus and also over the clitoris. I have anal fissures too, and have an ointment made up at the pharmacy for that. I had a surgeon commit to cutting the webbed skin, but then he changed his mind and told me it was only a matter of time and it would fuse again. I am in danger now of interference with urinating, if the fusing becomes much worse they will have to do something. Scary. Hope you are not this bad. I keep using clobetesol but as I said I can't use that forever and ever on a daily basis. (sigh)

    • LeahRSA
      LeahRSA Octopus_1289

      Posted

      Thanks Selling...difficult to explain so tell me if I am not making sense...

      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
      LeahRSA

      Posted

      Sorry...my silly phone has started doing predictive text...Selina not Selling wink
    • Octopus_1289
      Octopus_1289 LeahRSA

      Posted

      You are making sense. That is the same problem that I have. The tearing and bleeding began 8 years ago for me. My dermatologist doesn't treat that area. For the genital area, I see a gynecologist. Hope that you get help. I was misdiagnosed for years, and the disease got too far advanced to stop some of this from happening. Good luck and keep me posted.

    • suedm
      suedm LeahRSA

      Posted

      Fusing is when the lips - the labia- fuse to the walls of the vulva- or it may look as if the lips- labia - are disappearing, the skin starts to cover the hood of the clitoris reducing sensation- the nerves are still there but they are buried under scar tissue- that too is where you are fusing

      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
      LeahRSA Octopus_1289

      Posted

      OK, so my dermatologist inspected that area as I had to tell her that I had so much itching and pain I would literally just go to the bathroom to relieve the pain by stratching...I have never had such an uncontrolled urge to eliminate pain even if it caused pain...again hope that makes sense. So only once I had been misdiagnosed by my gynae did I go to her. She doesn't normally 'treat' that area but I think she was interested as she had knowledge of it but probably hadn't seen too many cases? She put me on the Dermovate.

      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
      Octopus_1289 LeahRSA

      Posted

      Leah, I sympathize w ith you. Where I live, we have to wait months to see a specialist and sometimes a year. I feel so helpless at times having no one to turn to. My general practioner is doing all he can, but it's a disease that flaress and not much can be done. We basically have to find out ourselves what triggers the flare ups and then try to document it, next time a flare up occurs, try to remember what we were doing or eating, whatever at that time. I just went through a terrible bowel blockage which stressed out my body. That's when the flare up started. I am in blisters all over my body and they are inflamed and have to heal from the inside out. To add to that, now I am getting a flare up in the genital area too.

      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
      LeahRSA Octopus_1289

      Posted

      Thanks Selina, I am very fortunate that we have private medical aid here in SA and we are currently on one of the top medical aid plans as both my young boys have chests that are very bad...it pays to have good medical aid here as the government hospitals are shocking...not months by years for a specialist.

      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! wink

      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

    • hanny32508
      hanny32508 Octopus_1289

      Posted

      Selina, ask for a dilation procedure.  Much better than cutting.  I have had it done in October last year and am doing much much better.  (In addiiton - baking soda baths and rinses and coconut oil keep me well)
    • hanny32508
      hanny32508 LeahRSA

      Posted

      That's fusing.

      Baking soda baths and rinses plus coconut oil richly is what I recommend.

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