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My first vulva dermatologist appointment

Posted , 12 users are following.

janet62990
janet62990

I was diagnosed with LS in October last year.  I was very distraught after seeing all of the pictures online but now realise they are the extreme cases. I applied dermovate for a few weeks and that relieved the itching and soreness so I then progressed onto 'baking soda' sprays and coconut oil with occasional applications of dermovate (approx twice a week).  At my first appointment with the vulva dermatologist/gynaecologist this week she has told me to apply dermovate twice a day for three months and then go back to see her. She said this will blast the LS and not get rid of it, but hopefully control it and then I should be able to apply dermovate just twice a month. My doctor told me I should expect a biopsy however the consultant said she didn't need to do one as she could tell I had LS and there was no signs of cancer.   I had read it was an autoimmune disease and presumed that I had a low immune system so I was trying to boost my immune system via diet etc however, my dermatologist said it was my immune system working too hard and looking for something to do so it started attacking healthy cells. I wondered why I hadn't caught all the coughs and colds my family inflicted on me over Xmas !! I now feel very optimistic about my future with LS. Ps.  I am in the UK 

1 like, 24 replies

24 Replies

  • hanny32508
    hanny32508 janet62990

    Posted

    Mixed message - do I understand it right that you didn't get cold's and flue's because your immune system is working overtime?  And therefore you have LS?

    I have a malfunctioning immune system and cought every cold and flue bug there was and I got LS.  Earlier on we talked about the possibility that there may be more than one variety of LS.  Maybe you and I form the two opposites?  

    Or is there something entirely different at play?

    Be careful not to use too much glob.  But you knew that already, don't you.  I hope that your LS will soon be under control and that you have to only use the maintenance level of glob.  Wishing you well.  

    • janet62990
      janet62990 hanny32508

      Posted

      You know what!: I think that I would prefer to listen to a professional than listen to a bunch of people in the us who are obsessed with stress and diet. If I took everyone's diet advice I would be eating lettuce and fish!
    • hanny32508
      hanny32508 janet62990

      Posted

      I'm sorry?  You choose what works best for you Janet.  Our bodies do not all react the same to various treatment options.  As you will find out from the discussions here - what works for one can work totally the opposite for another.  

      Listening to the various experiences here, we have often come to the conclusion that the professionals have varied opinions. Then who is right? The reason why on this forum we try to learn from each other, since the cause of LS is still unknown, and there is no permanent cure.  All of us having first hand experience with LS, we may discover or know something that the medical world is not aware of.  Kind of working together.   

  • alison54950
    alison54950 janet62990

    Posted

    That makes sense about immune system as my family have had colds, coughs etc and I have not!! I'm currently waiting on results from biopsy, I'm still burning and raw. Hopefully get advice in what I'm treating soon.
  • nannylin
    nannylin janet62990

    Posted

    Hi I was interested to hear how you are treating the condition. Lots of people on here have talked about baking soda sprays and I asked my dermatologist and she was very against it something to do with the Ph of your skin. What did yours say. I have started to use coconut oil which I have found very soothing .
    • janet62990
      janet62990 nannylin

      Posted

      My dermatologist didn't say much about baking soda as she hadn't heard about it she just said it would neutralise after urinating x
    • hanny32508
      hanny32508 janet62990

      Posted

      A bit more about baking soda:

      When I discovered that baking soda seemed to stop LS fusions in their track and later made the fusions 'melt away', I went to my doctors to have a scientific input.  Both explained that it affects the accidity/alkalinity balance.  Later I learned that another doctor, in the 1920's had discovered that a good ph balance would be beneficial against skin growth/skin disease.  In fact, he said, it may well prevent cancerous growth.  My GP earlier had made the comment that my LS behaved like cancer, but it was not cancer. Combining all these thoughts and observing that the immense fusions I had were slowly disappearing I started to make this observation known to this forum.  Furthermore, my gyno said - keep doing what you're doing.  All starts to look good down there.   

    • karen12004
      karen12004 nannylin

      Posted

      Hello there, pardon my ignorance but how do you use the baking soda sprays ? I have never heard of this before and I really am open to try anything to assist in this constant uncomfortable itch and irritable situation.

      Thank you

    • hanny32508
      hanny32508 karen12004

      Posted

      It's fairly simple actually.  I fill a Perin bottle with three pinches of baking soda and add warm water.  After every bathroom visit I rinse with this bottle and dab dry.  Then cover with coconut oil.  

      To a full bath I add one third of a cup. No more.  To a sitz bath two teaspoons.  

  • winifred02134
    winifred02134 janet62990

    Posted

    Hi Janet , When l first got LS my dermotoligist said to use dermovate twice a day for three months then once a day for three months them once a day for 3;days every month. If it flared up twice a day for three days. This worked for me very well along with hydronol on all the other days forfive years. Then after a time of stress it all stopped working .lve had a biopsy which acted as a clean up down there , since then lve just put vaseline on as per instructions from consultant . LS is an odd thing and different things work for different people

    I am not a diet fad person l just eat as healthly as l can l dont like sugar so l suppose thats good and l font drink anymore because l take medication for other things . I did stop dying my hair because it is putting toxins into the body , l dont know if it helps but might. L S hurts, so if a thing makes sense in my mind l will give it a go . I have an under active thyroid and get loads of colds . The bottom line is nobody knows what makes LS tick, until then we try to help ourselves and we share our thoughts and fears on this forum and l am very grateful this forum exists. I wish you well , take care .

  • eileen23152
    eileen23152 janet62990

    Posted

    Hi I am from the UK and have been diagnosed with LS and LP. I was advised this condition seems to be lumped with amune system or low thyroid or stress but not exclusively, I don't think they have any clear foundations.

    I think mine is more stress related as this does make it flair up for me.

    They are having problems getting mine under control, I asked about diet and thesome of the remedies on here and have been advised against it. 

    I have 2 friends who also have it, 1 is managing to keep it under control. The other 1 has had the cancer cell now removed. 

    We we are all different and react differently, the only thing that gives me relief whe I have a bad spell is the dermavate (glob) I use hydromol wash and cream to improve the quality of the skin.

    my x husband has been using (glob) for 60 years without any side effects.

    i wish you well, I know how frustrating it can be

  • Guppy007
    Guppy007 janet62990

    Posted

    One thing is certain and that is that the immune system is out of whack.

    There is an "overdrive theory" in that there is a problem which means that the immune function is not able to turn itself off, and cascades out of control causing inflammation which ultimately causes the damage to our Vulva.   It's not that the immune function is incredibly strong, but that it can't regulate itself to calm down, (maybe once an infection has been dispelled) who really knows for sure what triggers L.S.  it appears to be hormonal for some, and sometimes its something entirely different for others, and that's why we need research on LS.

    I think that when you have an auto immune disorder diet, supplements, Meditation etc  can only help make your immune system healthier, and  that's kind of different than "boosting" 

    One thing is clear, and that is that Doctors and experts are VERY confused and unclear about all of  this as well, which is why I am always open to listening to other peoples point of view. 

    • patricia86334
      patricia86334 Guppy007

      Posted

      You are right, guppy.  I am grateful for all I have read and learned on this forum.  The Dr. who was treating my LS told me it ONLY affects vaginal tissue, no need to use the Clob. around the anus....wrong.  She also told me to use the Clob anytime I felt an itch or irritation, every day if needed....wrong.   She never said a thing about keeping the area "oily"...I had to find out on my own that LS skin is sort of "sticky" and has to be kept from attaching to itself.  I learned on this forum that LS DOES indeed affect the area around the back, that Clob should not be used everyday, after the first schedule has been passed, and  there are lots of things to keep the skin soft and from sticking to itself.  And by the way, that Dr. is an ob/gyn, a specialist in women's health, she is not just a GP.  Now I go to a Vulvar Specialist, but I am not going to accept that she knows every single thing about LS...I am going to keep reading here and learning.  Also, I am pretty sure that it is not only people who live in the US who have stress and worry about diet!
    • eileen23152
      eileen23152 patricia86334

      Posted

      no you are absolutely right we british people also suffer with stress, I have LS around the back and also OLP. I have just has an operation for a prolapse and now have a fissure at the back, and all this is beginning to get me down.

      Because mine keeps returning I have been advised to use Clob twice a week and I have found Hydromol wash and intensive cream works for me at the moment. It does help when you have a considerate specialist who is prepared to listen to you.

      I am always willing to try anything new, but am also mindful that we all react to things differently

    • patricia86334
      patricia86334 eileen23152

      Posted

      one thing that is so distressing about LS, to me, is you think everything is going pretty OK, then pow! another symptom appears.    I just now read a letter on the forum that a lady had a big change overnight in  her clitoris...that is distressing.  This LS has a mind of its own.  I know there are things we can do, but we are somewhat helpless about some of it.  I don't want to be a downer here and cause anyone to fret, so I am not saying too much or details, but this is not like anything else we could be affected with..The fact that there is no internal medicine for it makes it seem as if it will never be over with, know what I mean?  Oh well, I have just been depressed lately.  Here in North Carolina, Spring is really to pop.  This afternoon I have been putting china plates together to make "flowers" for my garden.  That's about the only kind of flowers I can grow!
    • Guppy007
      Guppy007 patricia86334

      Posted

      Patricia, I think it is awful that your Doc (a specialist in woman's health)  gave you such bad advice, not once, but over and over again, its a disgrace!  Bad advice with a condition like LS can cause a lot of serious long term problems for woman. This is why you have to keep an open mind and not entrust yourself to just one person.  My ob/gyn seems smart, but she never pressed upon me how serious this condition could be, she never mentioned fusing, and she definitely never mentioned keeping things oiled,  and so I left her office feeling okay, not really alarmed.  I am English living in a third world country and believe me my options and choices are very limited here, and so I am just grateful that she at least knew it was Lichen Schlerosus, as she is the best I can hope for out here.

      I hope you are feeling a bit better now.

    • patricia86334
      patricia86334 Guppy007

      Posted

      thank you, Guppy

      Know what is sort of scary?  I really would not have known I was getting bad/no advice if I hadn't found this forum.  It was reading so many experiences here that I realized there is hopefully an alternative to surgery, and since I did not want surgery I searched for a Vulvar clinic in my area, and there I found a woman Dr. who specializes in LS.  I would not even have tried to find a different Dr, I would have just assumed the Dr. I had knew what she needed to know about this condition.

      Since you are living in a place with very few real choices for treatment, it is great that you, also, have found this forum.  But if your LS starts progressing, is there any way you can get to a specialist at all?  I was wondering about something else:  I am Irish, born in Belfast, even though living in the US most of my life, and most of the people here, at least the ones writing in, seem to be of English origin..I was wondering if this condition affects  women of our ancestry most?  I know some diseases affect certain races more than other races, and I wondered if that might be true of LS.  Maybe some researcher would be interested in that and do some research.  Maybe not. 

      eek

    • Guppy007
      Guppy007 patricia86334

      Posted

      Sorry Patricia I forgot to reply, its because I am not feeling too great at the moment.  

      I wish I was living back in the UK!! apart from my many health problems I have quite a stressful life with my husband who is an alcoholic and receiving therapy as I type this.  The strain of living with someone like that has taken its toll and  has contributed to my ill health, if I was in the UK it would be easier, but that is not an option for me at the moment, maybe in the future. 

       It certainly would be interesting when they finally get around to doing some research on LS who this disease targets the most.  Lets hope that happens sooner rather than later.

    • angie222
      angie222 Guppy007

      Posted

      Just wanted to say hi and hope that your health and happiness improves soon Guppy. I have also dealt with the stresses of being with someone that is an alcoholic. I believe it brought on my LS problem in the first place.

      Sending my best wishes, x

    • Guppy007
      Guppy007 angie222

      Posted

      Thanks angie I appreciate your comment...sometimes you just get sick and tired of pretending that everything is Tickety-boo!!

      As you say stress is really bad for this condition which is why I try not to let things get on top of me, but it is not always that easy.

    • patricia86334
      patricia86334 Guppy007

      Posted

      No, don't worry.  It is perfectly fine that you didn't reply immediately.  I see that lots of times letters are spaced out of order...or sometimes not replied to at all...I guess all of us just read whatever is posted next.  I am so sorry that you have extra stress in your life.  I do believe that serious problems  affect our health.  None of us can control what another person does, yet we live with the consequences of the other person's actions.

      Yet how can we ignore what is happening in our own home?  I hope you can find a way to cope each day, and I hope you feel much better tomorrow!!  Everyone here is on your side   exclaim

    • Guppy007
      Guppy007 patricia86334

      Posted

      Hey thanks, I think mentioning the UK in your other post made me feel a bit home sick actually.  

      My husband  is what you would call a functioning alcoholic, someone that goes to work every day with no problems....so most of the time its fine, but then some days its not.  biggrin

    • patricia86334
      patricia86334 Guppy007

      Posted

      I hope today and tomorrow and as many days as possible are the good days then.

      lol

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