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Lichen Sclerosus

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Pinny54
Pinny54

How frustrating is this horrid disease.  Have suffered over 15yrs now and am in my 60's.  How so many of us suffer in silence as we rarely speak about it to anyone, no-one not experiencing it would understand. It took some years to diagnose, 3 gynocologists couldn't figure it out.  Finally my GP sent me to a Dermotologist who indentified it immediately.  The usual steroids were prescribed but I too felt unsure about the long term effects of them.  I stumbled across Perrins Complete and Perrins Blend while searching on the internet.  I felt excited and ordered some immediately.  That was at least 2 years ago now.  It has been extremely efficient.  My dermotologist was bouncing off the walls with delight.  I have continued to use it faithfully since.  However, in the past month or two I am experiencing the worst outbreak of this wretched disease and have moved my appt with my Dermotologist from November to July.  I am starting to wonder if diet plays a part and perhaps stress/anxiety which I have had a lot of in the past few months.  I am continuing with the Perrins Blend at night and Perrins Complete during the day.  With the Blend it does stain so get yourself some old nickers and pj bottoms for when you are using it at night.  As the Blend is extremely thick get an empty container and place some Blend into this and add just a tad of the complete.  This makes it easier to apply.  I have still used the steroid cream once or twice a week.  I also use no soaps or talcs and wear cotton nickers.   Just feeling a tad flattened right now with this condition flaring up as it has to the worst it has ever been,  Has anyone tried anything else with any reasonable success?  Will be interesting what the Dermotologist says.  Will keep you posted.  Hang in there girls.  If we all communicate and discuss our experiences we might stumble across a cure.  

2 likes, 17 replies

17 Replies

  • viv15674
    viv15674 Pinny54

    Posted

    I actually tried the Perrins Creme Complete as well because I had read some good reviews from people who claimed to have had success with it and it burned so badly that I couldn't continue.  I pushed through for about 3 weeks, wanting to give it a good try, and saw absolutely no improvement and just added discomfort every day from the intensity of the creme.  I've instead found that emu oil several times a day along with my regular regimen of clobetasol ointment three nights a week has actually caused me to have my longest stretch ever without any flare ups.  The pharmacy once gave me clobetasol cream instead of ointment and I tried it, but hated it--it didn't give me nearly the amount of coverage and comfort as the ointment.  I also wear only 100% cotton underpants, no underpants at night, wash only with water (never soap), and occasionally soak in a baking soda bath to help with itching.  I always rinse off in a warm shower after sex because semen is a horrible irritant for LS, and I've been using emu oil as a lubricant rather than a regular brand name lube.  I do agree that this disease is horrid and frustrating.  My husband and my mother are the only people who I've told about it.  I don't think my mom really "gets" it, but my husband understands and is very supportive.  I don't see a dermatologist about my LS, but my gyno is actually very knowledgeable and has dealt with many cases of it over the years.  I see a dermatologist for regular skin checks every 6 months and have mentioned my LS to him, and he agrees that the course of action my gyno prescribed is what he would prescribe as well.  My biggest concern is that this may be hereditary and that my 6-year-old daughter may one day suffer from this awful disease.   
    • Pinny54
      Pinny54 viv15674

      Posted

      Thanks for your reply virginia, I will be seeing my Dermotologist early July but saw my GP last night.  I asked her about diet etc and she felt that one would have to dramatically have changed their diet to have caused the disease to relapse.  She said often diseases relapse just because they do.  Just the same I have decided to reduce sugar not that ate much anyway.  Having noticed for the first time the white lesions I attacked it with Perrins Blend and in two days they are gone.  It really is a successful product but may not be for everyone.  As it is strong product it can cause burning.  As my skin is irritated I just go back to using the Perrins Nutra creme which is a gentle moisterising creme.  In fact they advise that you start with this creme and work up.  So I was happy to see the white lesions disappear but will still see the Dermotologist to be sure everything is under control.  Hopefully this itching will start to settle again as well.  I am not sure if this is hereditary or not, I haven't read anything to suggest that so I really do hope that it isn't and your precious little girl does not experience it in her lifetime.  Hopefully as the years progress an actual definite cause will be diagnosed,  Keep up with what you are doing because if it is working it maybe just the ticket for another anxious sufferer that will work for her too.  I think all of our experiences and successes are valuable.  Thanks again.

       

    • AnneMarie4321
      AnneMarie4321 Pinny54

      Posted

      Hi, Pinny! I hope you've been reading some of the LS threads here and the personal experiences of other LS sufferers has helped you. Many of them have figured things out on their own that their doctors can't figure out or have no clue about. My point being that it's fine to listen to your doctor, but you have to be your own advocate as well. Plenty of ladies here have figured out that a change in diet -- small to drastic and everything in between -- HAS helped. I include myself in this. Giving up wheat and sugar has kept things quiet "downstairs" for months. (Plus other tips gained here, such as coconut oil, etc). Further research I've done on my own about wheat in the diet has validated why it wreaks such havoc in some people. One of them ME.

      I don't know your doctor's definition of "drastic", but what we put into our bodies has consequences-- some more than others. Each person has to find the unique combination that works for them. Doctors should be sensitive to that fact.

      So, yes, find a doctor you trust and work well with -- but ultimately listen to your own body. The anecdotes here are what helped me figure out how to get back on track. Even better than my doctor, because there are so very few experts in this condition. This site has been a gold mine for me.

      I wish you the best with it.

  • Okpeeps
    Okpeeps Pinny54

    Posted

    Hi Pinny54 yes it is a hellish condition. I'm pleased you found something that works well for you. Although you're going through a tough spell at the moment I have to say that stress and worry dies have an effect on it. When my husband became terminally ill that's when this started. It was particularly bad just after he died and that's when I was diagnosed. Steriod cream helped me but now I only use that twice a week for maintenance. Aqueous Cream for washing cotton underwear like you and coconut oil after the loo. So far it's ok not as bad as it was. I can sit down or get into the car without being in agony. There is still the odd day when it feels a bit nippy down there but that's not often. The worst though is that I have now met a lovely man and sex can be more than difficult. It upsets me as I feel less feminine in that situation. He's very patient and gentle and there is far more to being with him than just sex but I'm sure everyone on here will know exactly where I'm coming from.

    Very difficult to not be stressed in real life and diet dies play its part too. I hope your specialist can offer some further advice and help to relieve your suffering. What would we do without this site ? I have no idea. Take care and let us know how you get on

    • viv15674
      viv15674 Okpeeps

      Posted

      Okpeeps, I've found that the best way to make sex bearable and even enjoyable is a lot of foreplay, the right lubricant (I don't use any regular lubes anymore, even the most gentle water-based ones didn't cut it, so I just use emu oil), and finding the positions that don't rub too much against your worst problem areas.  For me, my worst area is the perineum, and I've found that the best position for me is to be on top facing away.  I know others have had success with having a thick pillow under their lower back, and that has worked for me, too.  It's taken me many years of trial and error to figure out what works in the bedroom.  You're so right about stress having an impact--unfortunately, this condition can often be the source of the stress, so it's kind of a vicious cycle.  I'm so sorry about the loss of your husband, and I'm glad that you have found someone new that makes you happy.  I hope that you can find comfort in your relationship with him, both physically and emotionally.  
    • Okpeeps
      Okpeeps viv15674

      Posted

      Thank you so much for your reply. Some good advice there which I will try. I have it in the exact same spot as you and it can be agony (even when you want someone so much). Thankfully there are different ways to enjoy each other but I will take your advice and see how we get on

      Thanks again

    • Pinny54
      Pinny54 Okpeeps

      Posted

      Thank you Okpeeps.  I too believe that stress must be a contributor.  To have flared up just at a time when life has been throwing some curve balls.  We just have to find what works for each of us and share our experiences in the hope that we can help another sufferer and what works for us may well work for them too.   Keep well.
  • AnneMarie4321
    AnneMarie4321 Pinny54

    Posted

    Yes, diet can absolutely play a role. I gave up wheat completely, and my LS is in check. another added benefit us I'm losing weight and cravings are gone. Lots of salads and protein is best for me. Lots of info on the net about giving up wheat. Here, too -- several posters report that it has helped them. I wish you the best in your search for the right adjustment so you can find relief.
    • jeanniej
      jeanniej AnneMarie4321

      Posted

      Hi AnneMarie - although new to LS I had to go back to the gynae yesterday as I was worried the Dermovate may have made things worse and I was in a lot of pain. I asked about diet - specifically did he have an opinion on excluding wheat and sugar - and he advised against it! I realise we are all different and what works for one doesn't work for another - but I feel really confused. In the past I have improved my health in general by being on an "elimination" diet so I think I will give it a shot anyway. I have itchy patches of skin on my chest and patch which have been there long before the start of LS so a diet overhaul might be wise, even if the gynae doesn't support it. I can't see it can do any harm to try?

    • AnneMarie4321
      AnneMarie4321 jeanniej

      Posted

      What I tell myself is "They are not God" -- there is plenty of anecdotal evidence that can be helpful. Doctors are so busy -- they have personal lives, too. I hardly think they're combing the Internet for treatment testimonials from regular folks and disseminating the information in their quest to help their LS patients. Placing total and blind trust in doctors is something I can't fathom. I double check to make sure I'm following the best regimen I can for the LS. Also have read about what wheat does to the body. As LS is thought to be autoimmune, there are plenty of anecdotes about people giving up wheat and sugar and their autoimmune conditions markedly improve. Doctors tend to want to load people up on medications. If my doctor dicounted the role of diet in our health conditions, I'd find myself another doctor. I'm not saying anyone else should feel that way, but it would be a definite red flag for me.

  • Guppy007
    Guppy007 Pinny54

    Posted

    Hi Pinny, creams and potions can work for a while but if you are eating foods high in sugar it can undue all the good work, I'm guessing you must know that as there is a lot of information on this site regarding the implications of diet for LS.  

    All the best.

    • Pinny54
      Pinny54 Guppy007

      Posted

      Yes, I asked my doctor last night but she thought that you would have to have dramatically change your diet to have caused the disease relapse.  But just the same I have read a lot about sugar so have decided to reduce sugar whereever possible in my diet not that I really eat a lot of it but it is usually hidden where you least expect it.  I don't add it to anything or eat a lot of sweets but occassionaly I have been known to have a splurge or two. ha!

      Thank you

    • Guppy007
      Guppy007 Pinny54

      Posted

      Pinny, I noticed your post  "I asked my doctor last night but she thought that you would have to have dramatically change your diet to have caused the disease relapse" 

      This is the kind of information people get from their doctor which is just not correct, it is just plain wrong, the doctors don't know this and yet will give out such wrong information, and women new to LS don't realise it either.  Most women on this site know that if you are one of those that are affected by diet then it can take less than week of eating  the wrong foods to trigger a flare up, a weekend of indulgence can do it.   I just had to mention this.  I think almost everyone with LS is completely clueless as to how little sugar they need to trigger a flare up.   

      I think this is the number one reason  why most women continue to itch, have flare ups etc because they simply dont realise that and continue to think they are eating healthily when they are not, not really, not for Lichen Sclerosus. 

    • Okpeeps
      Okpeeps Guppy007

      Posted

      Have to agree with you Guppy.... Apologies for sounding like a broken down record but diet is key with this condition ... We all can't be wrong. We will try anything to ease these symptoms.

  • jeanniej
    jeanniej Pinny54

    Posted

    Hello Pinny; I am new to this condition (diagnosed one week ago) - so am interested to hear that you have had success with Perrins. I understand the feeling of being "flattened" - as that is how I feel now that I know a little about the condition. One week in, and I was feeling optimistic about the steriod cream which seemed to have improved things, but yesterday things took a definite downward turn and I have had such pain and discomfort that I don't have much confidence going forward. I will try the Perrins as so many seem to recommend it. Hope your current flare up is soon under control and thanks for your advice.

     

    • kay70189
      kay70189 jeanniej

      Posted

      Hi jeanniej

      I was diagnosed 1 year ago. It can take a while to get LS under control. I found Zink and castor oil cream works really well whilst you are getting the balance of steroid application right.

      Hope this helps.

      Kay x

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