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How chronic will this disease be?!

Posted , 6 users are following.

carolina80209
carolina80209

Hi all again... I was hopping you could help me with something...

I recently joined this chat since I was diagnosed with LS a month ago, I am 26 years old. I still hope every day the diagnose was wrong, I live in Ecuador, is sad to say this by doctors here are too incompetent..I have waisted all my money attending various doctors to see if I can have some answers. The biopsy was made of the skin in the vestibular area right at the entrance of the vagina, I discovered I had the disease because when I had sex that part splitted and it was impossible to have sex for me...I have HPV and presented warts in that exact area, a gynecologist make sure to destroy my skin with acid to get rid of the warts I have no idea that it could destroy my skin....

What is so rare to me is that my skin doesnt itches, is red and very thin not thick and it doesn`t have white patches, could it be that the skin in the vestibular area is atrophied but does not mean I have LS?? The idea of knowing that this is just the beginning drives me crazy, does anybody started just like me and then all the deterioration started??

I have read several researches that say that the only way to stop the process is to use steroids properly.. I can`t use steroids because it will cause an outbreak of HPV again, but maybe if there are used in a propper way maybe it could help me but I cant trust the dosis that doctors here prescribed me I believe it could only cause irreversible damage, I also have schelud with a dermatologist something called Plateled rich plasma, but he has never done the procedure in the vulvar area I'm terrified that he would made it worst!! but I have to try...

So I beg to any of you to please, please when you go to your doctors ask about my case I am sure they would give much valuable information than the information I have received in my country...I know is  too much to ask but please I'm desperate I don´t know what to do anymore.

Also please tell me if someone had a similar case to mine so I can have a better idea of what will happen in the future =(

Thank you very much, take care

1 like, 15 replies

15 Replies

  • renee77108
    renee77108 carolina80209

    Posted

    I'm so sorry that you have this terrible affliction. Unfortunately it can be for a lifetime.  For washing use a non-scented coconut or olive oil soap...it helps keep down the irritation. Even though you don't have the itch...99% pure or higher aloe vera gel does help condition the skin. Pure coconut oil is also very good as it has healing properties as well. There are two rinses you can use after toileting...the most gentle is the bicarbonate of soda...2 pinches in about 8 ounces of water in a spray bottle.  Witch hazel will help you heal faster...but will sting momentarily. I put that in a spray bottle as well. You can also soak small flannel pads in witch hazel and tuck them in place at night to assist with healing. I started out like you...the itch came later (the aloe vera gel will also stop the itch). Intimacy will often  be a problem.  When using lubricating gels be certain to wash them off as quickly as possible as they will often be irritating and cause the condition to worsen.  Self care will become very important to keep your symptoms as well under control as possible. One woman is keeping her LS clear by applying manuka honey and rubbing it in each evening. I used this for the first time last night and found that it caused some irritation...but will continue it for the next week or so to see if that calms down and there is some improvement. It's about $36.00 US dollars for a tiny jar...so expensive...but I figured it it didn't work I could use it up in baking...ha, ha.  You have to have some humor with this disease. We are all looking for answers...so that you are coming to this site is a good thing...with all of us searching for relief or a cure there is bound to be something that will help you. Please let us know how the plateled rich plasma treatment goes. Wishing you well.
    • carolina80209
      carolina80209 renee77108

      Posted

      Thank you very much for your comments I guess I feel worst knowing what would happen and of course is not your fault... If only I was older lived more gotten married I dont know it would still suck but at least I had lived something I just need a psychiatrist

      I will take note of your tips thank you very much

  • hanny32508
    hanny32508 carolina80209

    Posted

    At your age it is possible that LS stays away for some time.  But it will still be in your system and when the conditions are such (stress, too much sugar intake perhaps, change of estrogen level may have something to do with this) it will return.  

    Because you are young, an early detection may be to your advantage;  early treatment may keep the progressing at bay.  

    Make sure you get yourself well informed about LS;  I encourage you to read many of the discussions on this forum as well.  Many people here have learned to live with this debilitating disease, though too often by trial and error.  

    Keep a food diary for a while - are you consuming too much sugar?  Alcohol?  (My LS is triggered by eating cheese, for instance.)   Stress also has a serious affect on things.  

    No one knows for sure what will 'cure' LS.  Doctors have limited knowledge this far.  So we learn from each other here.  Meanwhile hoping that some smart person will find us a way out.

    I have been greatly helped with bicarbonate/baking soda rinses and baths, and a mostly alkaline diet.  Coconut oil, emu oil and baking soda are my 'staples'.  Globetasol an important ointment.     

    Wishing you WELL Carolina.

     

    • carolina80209
      carolina80209 hanny32508

      Posted

      Thank you very much for your comments, I have always suffered from stress and depression since I have memory..this of course affects my immune system, also I have a hormonal issue high testosterone, I think low strogen levels as well but the doctor has not been able to discover the estrogen issue because my periods are too irregular, since I was a teen that area has alwaays been so dry and thin, I am taking adalctone at the moment... plus the HPV and LSE... looks like a never ending vicious circle.. 

      Could it be possible to treat all my problems naturally, you probably read about that girl that cure LS with a special diet, rasperry leaf and coptidis rhizona herbs, and also a women that used clobetasol for years eventually made it worst, she discovered by accident a half saline and half peroxide solution that cure all the symptoms and hasn´t use clobetasol again..

      I am starting with triderm and then my doctor says I must use dermovate..I am so affraid of steroids that I am considering the use of protopic instead..

      Regardless what I decide I will definitely use the emu oil and baking soda I am sure it will help a lot

      Take care!

    • hanny32508
      hanny32508 carolina80209

      Posted

      Don't be too afraid of using steroids Carolina.  Make sure you use no more than a pea size amount.  Thin applications.  Are you already at the maintenance level - which means only twice a week?  During the in between time I use coconut oil or emu oil, richly.  Sometimes I use a product that has witch hazel and beeswax in it.  And I reapply after every bathroom visit, after baking soda water rinse.  
    • suedm
      suedm carolina80209

      Posted

      Hi Carolina, the girl you mention said she was cured of LS - she probably went into remission - it is often the cse with auto immune conditions, one can be in remission for years . IF there WAS a CURE there would be a LOT of articles in the medical journals about the case history. There are none that i have found

      PLEASE do NOT put peroxide on to you undercarriage - think of peroxide like bleach...it is used to bleach the hair ....even dilute doses would not Be a Good Thing

      Change what you eat if you like - but keep a food and mood diary to see if any physical changes DO reflect your diet  or your mood or your hormone levels, (you mentioned that you have erratic periods so they will be unstble at the least). Make sure if you go down the alternative route that you find out the qualification - do not be beguiled into lots of letters after one's name - a 6 week correspondence course is NOT the same as a 3-6 year medical degree!

  • suedm
    suedm carolina80209

    Posted

    Have you watched the much discussed Dr Goldsteines webinar? it may be a good idea to take the link and ask your medic to watch it after you have done so...may be saying something like you have seen this and want his/ her opinion- that way feathers arent ruffled!

    You possibly have scar tissue from the wart removal treatment, have the doctors told you your CAN'T have steroids in that area?

    Some others on this site are beginning to use a treatment called Protopic...that may be an answer

    As a matter of interestI looked up Platelet rich plasma treatment :

    Platelet-rich plasma (Abbreviation: PRP) is blood plasma that has been enriched with platelets. As a concentrated source of autologous platelets, PRP contains (and releases through degranulation) several different growth factors and other cytokines that stimulate healing of bone and soft tissue.The efficacy of certain growth factors in healing various injuries and the concentrations of these growth factors found within PRP are the theoretical basis for the use of PRP in tissue repairThe platelets collected in PRP are activated by the addition of thrombin and calcium chloride, which induces the release of the mentioned factors from alpha granules.

    It would appear you will have this injected- if so it could be a good idea to request an anaesthetic gel to apply several hours before  the procedure.

    I think if i were to be offered this treatment I would also ask what what the rationale for the treatment is and what success or otherwise has been recorded in the medical journals.....

    You will see that itching usually happens after the menopause, the superficial skin is thin but the deep tissue is thickened scar tissue, and it that the stroids are aimed at - to allow th e therapeutic components to get into the area that needs treatment

    Good luck and if you can do not fret - it only makes things worse. Do look at the New to LS page on this site you will gain a lot of information

    Sue

    • carolina80209
      carolina80209 suedm

      Posted

      Sue thank you so much for the information!! I have watched Dr Goldstein webinar like 5 times.. And today I was finally able to contact the office at D.C just the consultation alone is 1,450 dollars if you want a bipsosy or something else it could be like $2,000 plus travel expenses for me it would be like $5,000 that is so much money the basic salary in my country is $300 so that you can have an idea of how impossible it is for me to go any time soon... I would use what he says on the webinar but there are so many things that I dont understand and he does not give any reference of a case like mine, many dermatologists in my country tell me that I should use steroides when the disease is more advanced because it would only make my skin thinner and both protopic or steroids can cause hpv warts and it would be worst others tell me that nothing will happen and that I should use sterois, I dont know whom to beleive! Should i just put ointments and wait until my skin is thick and itches to try protopic?

      I have heard many times that you can stop the process of degeneration with steroids or calcinerum inhibitors I am soooo confuseed if only I could fine a doctor that really knows what to do with my condition right now!

      I am doing the PRP treatment next week it seems the only thing to do safely at the moment, I will tell the group how it goes

      Take care!!

    • suedm
      suedm carolina80209

      Posted

      Hi Caroline - that is a huge expense and an enormous percentage of your salary

      Can you screen shot the slides in Dr G's talk - i printed them off for my GP's surgery - if you could take them along to your dermatologist and ask for him to explain in lay mans terms what it is you dont understand - you may want to sit  down and write out all those questions you have - May be the nursing staff will be able to help you understand too.

      As to using the steroids when the condition is well advanced I understand that the current medical advice is to treat early to prevent further scarring.

      Please look at your "undercarriage" with a mirror in a bright light regularly so that you will see any changes as soon as they appear. If there are areas that do not heal  - go to you doctor and take a photo  - on a camera NOT your phone - they can be hacked - it is important that LS is treated seriously to prevent further long term damage. i will try and look up the effect steroids have on HPV and warts

      Best wishes

      Sue

       

    • suedm
      suedm carolina80209

      Posted

      I have just looked up HPV

      "Many women worry about becoming infected with HPV again after they have had treatment for abnormal cervical cells. Viruses are difficult to treat and your body gets rid of them by developing immunity to them. This may take from a few months to a few years.

      Some women worry about whether their partner has the virus and could reinfect them. Men aren’t routinely tested for HPV because the only way for a man to find out if he has the virus is to have several biopsies. Even then, a negative result only means that HPV wasn’t found on those biopsies and not necessarily that he doesn’t have HPV at all. Our bodies clear the virus. So, even if a man has the virus when he is tested, his immune system may get rid of it before the test result comes back.

      As there are more than 100 types of HPV, it is possible to be immune to one type but not another. So it may seem that you have been reinfected but in fact you may just have a different type of HPV.

      Another site a man questioned the medic about using steroids when having HPV :-

      "As for steroids, while steroids may compromise a person's ability to fight certain infections while one takes them, they do not act in the same way to greatly increase vulnerability to infection, thus I doubt that being on steroids increased your risk for HPV acquisition.  Further, there is no reason to think that steroids harmed your immune system".

      I typed in' Do steroid affect HPV? ' Lots of answers available, so do check yourself and be reassured hopefully

      Try not to get too stressed, find ways to calm your thoughts, the worst thing you can do is to increase the unwanted cortisols floating around your body causing further damage

       

    • carolina80209
      carolina80209 suedm

      Posted

      Thank you sou much Sue for your answers, I found a doctor who told me that I should not worry about HPV because I am young and haven´t had any symptoms in a couple of years..so we should just focus on the LSE (I am hoping he is right)

      We are starting with triderm and then dermovate.. since I am worried about steroids thinning the skin I will suggest protopic, I have made a promise to myself I would give it a go for six months, I guess after that the only way of knowing if my skin gets better is by another biopsy since I don´t have any itching or white marks. If it doesn´t work I don´t want to use any more drugs I am tired (I use adalctone, acnotin, alercet, herbs for depression, analgan, and compensial for the liver) I will give it a go to try something more natural like rasperry leaf tea and coptidis rhizoma for the LSE, aside from the natural ointments.

      This disease is terrible, but I'm glad about the existence of these forums that remind us that we are not alone

      Take care!!

    • suedm
      suedm carolina80209

      Posted

      The itching normally only appears after the menopause as i understand it. I was also told it is a change, often lowering, of the hormone levels that affect LS

      when you watched Dr Goldstein's webinar you will have seen WHY thinining of the scar tissue is so important, and not to be feared. There are side effects that may also be troublesome at some stage caused by the steroids but not just yet.

      Thank you for your comments and yes these sites are a tremendous help to all of us.. as new contributers join daily I wonder just how prevelant the condition really is!

      Good luck

  • kasiaj
    kasiaj carolina80209

    Posted

    I am so sorry to read this and to hear about how difficult it is for you. The pricing is ridiculous. 

    You seem to be very knowledgable about it all from looking at the replies and more so than me. 

    I am 18 and was diagnosed a few days ago so I know what it feels like to be so young and get this life long disease. It isn't nice. 

    If I were you I would definitely try the coconut oil as that apparently helps reduce the fusion / reverse it. Try not to be scared of steroids as I am using them at the moment and I THINK they are helping. I will have to let you know. I did use a weaker steroid cream for a few months which helped with the symptoms of itchiness etc. but I'll let you know how dermovate goes. I can't give any advice with the warts though. 

    I'm really sorry to hear about all of this. 

    If I were you I would do each thing one step at a time so that you can really monitor what is working for you. If you start doing everything at once, it'll be terribly difficult to figure out what is working. And it seems different things work for different people. Whether that is steroids, dietary changes, stress levels or oils. 

    I really hope things get better for you and wish you luck. 

    Kasia

  • renee77108
    renee77108 carolina80209

    Posted

    Another person in these forums suggested LS and OLP are related to vitamin D deficiency. I know some women here are taking a Vitamin D3 supplement...but are you taking enough? Folks on holiday in sunny climates are noticing that their symptoms are declining. I just came back from sunny South Carolina and the LS on my legs totally disappeared in just a few days. I've just upped my D3 to 5000  in the morning and 5000 in the evening and have already noticed after only two days that my oral LP has improved...gums no longer red and swelling is down. I looked up some info....here it is:

    Symptoms of Vitamin D Deficiency

    Vitamin D isn’t an optional nutrient, our bodies need it, and without it, problems can arise. Many people go through life with nagging aches and pains, allergies, malaise, and a general lack of vitality. Such nonspecific symptoms can be the result of one, or several factors, and vitamin D deficiency is one of them. Specific symptoms related to vitamin D deficiency include:

    Muscle weakness

    Joint aches and discomfort

    High blood pressure

    Inability to concentrate or focus

    Urinary incontinence, bladder issues

    Constipation

    Headaches

    Cold/flu, immune system decline

    Mood disorders

    More serious diseases linked to vitamin D deficiency include:

    Osteoporosis

    Heart disease

    Autoimmune diseases

    Periodontal disease

    Gout

    Diabetes

    Obesity

    Psoriasis

    Neurological diseases

     

    • hanny32508
      hanny32508 renee77108

      Posted

      Thanks Renee, I'm one of the people taking vit D3.  Recommendation from my nature path.  No idea that there could be so much linked to insufficient D.  I have difficulties with my immune system via Adrenal gland problems.  Never thought it was linked with LS as well.  The whole bundle of things weI do make a difference then. 
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