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Have just been diagnosed with Lichen Sclerosus and think I am getting bad advice from Gynacologist

Posted , 17 users are following.

mary10218
mary10218

On initial diagnosis by gynacologist I was told I had had the condition for a long time (a year maybe) -to use a sitz bath, steroid cream and hormone cream for one week. The itch disappeared. I was then told to use only hormone cream twice daily and to return in 4 months. I felt fine although I feel half my vulva has disappeared and I am finding it very distressing. However, I feel the itch is returning after 1 day and I am concerned as everything I read says hormone cream has no effect on lichen and that the treatment regime should be steroid cream for 3 months daily then twice weekly. I am living in spain so not any choice for medical care and it is very expensive which I can't afford. I am 59. Desparately need some advice. Feeling very overwhelmed.

0 likes, 39 replies

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  • JoHarvey
    JoHarvey mary10218

    Posted

    We are in the UK and my daughter was given steroid cream and it was to be daily for a month, then every two days for a month and then every three days for. Month. We have just finished this treatment and so waiting to see what happens now. We weren't given any hormone cream. I hope this helps a little, not sure what strength your cream is, ours is called dermovate ointment. I hope you get it under control, Jo
  • suedm
    suedm mary10218

    Posted

    Hi Mary

    How much steroid cream do you have left?Perhaps if you use what you have and ask for another appointment....? a pea size amount is normally the maximum recommended. There is a link between loss - or change in female hormone levels- stress and low thyroid function. Others on the site also believe that diet has an affect too.

    Are you able to request a repeat prescription from your doctor? - here in the UK  the consultant prescribes and informs the gp who will carry on withthe repeat prescriptions.Is that the same in Spain?

    IT is aslo VERY important to keep the area moisturised- in the UK a cariety of moisturisers are used - i use Diprobase- but a cheap option that is very good is aqueous cream - again available here very cheaply...A couple of pounds for a large tub. Use it to wash with. Others on the site use coconut oil.

    I know how you feel about disppearing parts of you....I look in horror...but then think at least only I see what is happening to the undercarriage! So try and keep the stress levels down  When I have The Itch I go commando and wear long skirts...again only I know this! Others on the site also will say how urine makes matters worse - so using a barrier cream makes sense. I am a blonde and when i think I am given advice I want to ignore I do so and say ...Oh whoops must be the colouring! Are you sure the advice to you was to use the hormone and not the steroid on a regular basis, and not the other way around???

    The advice from medics here is if you are worried come back for a check up, but maybe you can phone the clinic for advice. Which day of the week did you attend?the clinics are normally held at the same time and location each week. Can you talk to one of the clinic nurses? or the consltants secretary?

    If all else fails are you coming to the UK soon? because you can always see a doctor here as a temporary resident  for a nominal fee. Dont be afraid to challenge the doctors telling them you have been researching the subject and telling them you beilieve  the "received wisdom is....."

    Do keep examing yourself to spot any changes and let the meidcs know. Health is so important Do try and get the matter sorted so that you feel comfortable

    Take heart The Itch can be reduced - for short periods anyway

    Best wsihes

    Sue

     

  • Runnerduck123
    Runnerduck123 mary10218

    Posted

    Hi Mary,

    Sorry to hear you have LS, I have had it about 6 years.

    I use Dermovate cream when I'm sore. I wash with aqueous cream in the bath every night,which keeps everything soft and I think forms a barrier, I buy a tub at the chemist about £3 . It takes some adjusting to mentally, sex is not comfortable, although my husband is really good about it. I've also given up riding as I get very sore. The forum is very good, it's made me appreciate that I maybe don't suffer as badly as a lot of ladies out there. Good luck with your treatment. 

  • margaret289
    margaret289 mary10218

    Posted

    Sorry Mary failed to post a longer reply, but the crux of it was this.  You really should use th Dermovate.  Apply it very sparingly on the sore areas or whiteness only (a pea sized ammount o the end of your figer will be enough for the whole area).  I've had this for about 7 years and it truly is the only thing which does work.  As others have said, keep the area moist and clean yourself only with water, especially after bowel movements.  I tried a squeezy bottle when I was away from the shower, but this left me a bit damp, which seemed to make things worse.  After you are clean apply barrier cream (or the Dermovate) - do not be tempted when out and about to use the barrier cream after peeing, becaus this can trap irritants next to the skin an make things worse.  I am extremely choosy about wearing comfortable cotton knickers, which don't have a lacy edge (feels like a hacksaw blade if I have a flareup) and I have had to forgo tight trousers, especially if they are synthetic.  I am managing by using emolients most of the week, but dermovate (alone) about three times per week.  Keep your spirits up, but don't take chances with wierd creams.  I too am looking into diet, stress reduction and excercise, but I will not be stopping Dermovate any time soon and I do not say this lightly, because I hate taking something as strong as this, especially in that area. 

    all the best and keep your spirits up

    Margaret X

  • doreen17521
    doreen17521 mary10218

    Posted

    My experience is that one should have the steroid cream for a month and then reduce to twice weekly and then once a week and go on emollient. This should take 3 months at which point you will be seen again. This has worked for me and was much better but now it has spread to the anal area and i have begun again. Follow this pattern and you will feel better
  • cazblue
    cazblue mary10218

    Posted

    Hi Mary, I was diagnosed this time last year. I found the steroid cream made the pain and itching worse and stopped after only 3 days. I went back to my GP who thought that HRT might work. She gave me pessaries initially and 2 weeks later everything had started to calm right down. She gave me another steroid cream that I never used and put me on HRT patches. I have cut sugar and bread and alcohol  from my diet and a year on I do get the occasional flare up that I treat with sudocrem ( zinc nappy rash cream) that really helps but you can now hardly tell I have it at all. Colour has returned fusing is still evident but it is certainly not any worse and in the grand scheme of things I have only been on HRT since October so still early days. 

    Very best wishes and I hope everything settles down for you. 

    The ladies on this sight offer the best advice out there and support as we are all in the same boat but unfortunately it would appear what works for 1 doesn't always work for another but don't loose heart keep trying until you hit on what works for you. But definitely cut out sugar!!

  • suedm
    suedm mary10218

    Posted

    Hi Mary you will see that there are many differing thoughts about the condition.Take care not to go down a quirky clinically untested route, unless it is non invasive. I looked at LS several years ago and found an American website where the participants were self referal to a research group. There were LOTS of untried and untested theories- many were frankly dangerous. Stick with the sensible advice offered - but extremes are not a Good Idea especially when you are desparate and vulnerable. The practical advice about clothing moisturising cleanilness and stress levels all have a base in sound advice. Some people find changes in diet works FOR THEM but it could be a placebo affect - or just that the condition is in remission for some reason- or perhaps their diet was so bad that changes have made a difference to their   health. As with all things take what you want from this site but dont be beguiled into stopping the steroids- they work Yes there are side effects but the received wisdom is that their use isnt as problematic as previously thought - re skin thinning- and it is better NOT to have constant inflamation- which can cause much worse  outcomes that steroid usage. Take care and you will see there are many people out here with LS and, as with all conditions, there are those who have a mild level and others whose health is badly affected. It is the same with most illnesses diseases or conditions - I hope that yours is a mild form. But Do Not Worry- tis the worst thing you can do

    Good luck and Best wishes Sue

  • suedm
    suedm mary10218

    Posted

    PS I am sure you have been told by your doctor LS is an auto immune condition. Where the immune system is "attacking"  the body. It is NOT infectious, it is NOT a fungal infection, any more than asthma, excema etc. are. Do look up auto immune conditions on the web - it may help you get to grips with LS a bit better- and check out what stress does to the body

    SXX

    • suedm
      suedm nikkibabie

      Posted

      Hello Nikkibabie, thank you for your reply to me. As has been said many times on this site each person has an individual experience of the condition, and the treatment that helps them. You are lucky to have found what works for you. However it may not work for other people, and disregarding conventional medical practice often can delay the relief current ointments can bring to the sufferer

      I hope the following helps.

      Lichen sclerosus et atrophicus was first described in 1887 by Dr. Hallopeau.

      As with many medical conditions the naming was made  when first identified by describing the appearence, and  it was thought that the skin had a lichen  like appearence.

      Lichen sclerosus (LS) is also known as lichen sclerosus et atrophicus (LSA), balanitis xerotica obliterans (BXO), Csillag's disease, Lichen albus, Hypoplastic dystrophy, White Spot Disease and kraurosis vulvae. Typically it's called LSA or BXO when it affects men, LS when it affects women or in referring to the disease in general, and pediatric lichen sclerosus when it affects children. LS is usually found in the groin area, but sometimes on the upper leg or thigh.

      Since not all cases of lichen sclerosus exhibit atrophic tissue, et atrophicus was dropped in 1976 by the International Society for the Study of Vulvovaginal Disease (ISSVD), officially proclaiming the name lichen sclerosus.

      Autoimmunity is a process in which the body fails to recognize itself and therefore attacks its own cells and tissue. Specific antibodies have been found in LS. Furthermore, there seems to be a higher prevalence of other autoimmune diseases such as diabetes mellitus type 1, vitiligo and thyroid disease.

      One day we will find out WHY this condition occurs- as with other inexplicable changes to our bodies, and perhaps you could write an article so that the medical journals could publish your findings- or get a university research department to undertake a trial , the outcomes  verified and the results disseminated responsibly throughout the world.

      I wish you continued good luck with the  "reversal" of your condition

      Sue

       

    • Chrisy
      Chrisy suedm

      Posted

      Thankyou.  Someone who talks facts and sense.
    • suedm
      suedm Chrisy

      Posted

      Thank you Chrisy, It feels as if I am an ostrich  / dinosaur with some of the comments I see on these responses aimed at convential wisdom.

      I would be alarmed if advice is taken by strangers from strangers who do not know what each individual's circumstances are, especially when there is a desire to drive home a particular message, and of course these responses are now world wide- Canada Australia  New Zealand Europe and the US. 

      When diagnosed we  are fearful and very vulnerable clutching at straws that may of may not be therapeutic value to each person indivudally. We are all unique with a lot of complex physiologial, pyschological and emotional variations (and digestions!) In my belief there is not one answer that serves all So I hope that readers will do what feels right for them - take advice from those they have met and know their actual history and then read with interest other theories. I have read some "advice" that to my mind is frankly dangerous and should be treated with tremendous caution.

      To read your comment was so reassuring Thank you again

      SueDM - PS There is another Sue who signs so I need to return to my full "ID"

    • Chrisy
      Chrisy suedm

      Posted

      It is such a relief to hear from someone who thinks like me that we should all be careful and follow our own needs but to be cautious with any "advice" given by others.  You are so right that some advice is dangerous and all advice should be treated with caution.  Even mine!!!!  What suits one does not suit everyone.
    • suedm
      suedm Chrisy

      Posted

      Chisy I also wonder what redress is available to those who do take unconventional advice that then  goes wrong..... We are all anonymous...I hope those who do give non standard often forceful advice have a good insurance cover as well! I am sure the moderator would pass the responsiblity forward!

      And in spite of the danger of being mutually admiring of sympatico thinking,  i agree that we should only be stating what applies and has affected, our own story, and not extroplate that to others, no matter how well meaning.

      We all want to help others cope with LS and to allay fears as far as possible, but we must be responsible in the way we do

    • anna80050
      anna80050 suedm

      Posted

      Hi Sue..I was diagnosed with LS a few weeks ago. I am having a biopsy done tomorrow and I am terrified! Do you have any comforting words??!!

       

    • marey
      marey suedm

      Posted

      i dunno sueDM and there is another sue so i'm slightly confused but had thought i was fairly in tune with the sue i was speaking to and with your good self i would like to think...and sincerely hope and trust also.

      i am medically trained as are many of the staff now at the forefront of a revolution away from 'conventional' thinking. The new think is towards self care and peer care...simply because no-one has all the answers and a lot of damage has been done by top down directives were self interest and financial interest have dominated. The highest incidence of mortality arises from allopathic medecine and failed operations let us not forget. HOWEVER it is not my wish to scare anyone or to undermine confidence in conventional medecine...but rather to invite healthy questioning. nikki may not return to defend herself and i was unable to make contact through the site she mentions...however I would very much like to encourage her participation...after all giving up sugar is not such a radical concept....!! 

      I can see however that nikki was quite forceful towards you and I think you were very polite and measured in reply but what i would also observe is that your emphasis was on a further description of what the disease is and how its defined and a lot of really interesting information which in other words is re-inforcing of the, almost obsessive interest in diagnosis, which doesn't necessarily get us very far and in fact with respect to LS leads only to a deadend  at the moment.... rather than in cure and i hope you won't mind if i suggest that this way is the conventional mode and that it doesn't get us further down the road towards reprieve, cure, reversal, remission or whatever term people prefer. I am sure you will accept this as fairmindedness. What concerns me is that we might be losing participants who have something creative and thoughtful to offer and who...on themselves and not on helpless and imprisoned creatures.... are experimenting and reporting back. I value your contribution I hope you value mine but i don't want to lose anyone.

      As far as i'm concerned we are now family we may squabble and jockey but i want all to stay on board. Please can we agree on a future policy of mutual encouragement! also not attacking, as you were on the receiving end of, but bravely i felt, did not take too personally!!

      love marey xxxxxxxxx

    • suedm
      suedm anna80050

      Posted

      Hello Anna, terror is no one's friend. When people are frightened they tend to tense up. If you hold your hand in a fist for a few minutes you will find at first the fist aches and if held for even longer it begins to REALLY hurt. SO try and relax. let go of every muscle - try it while in bed or sitting in a chair - but NOT when driving!!! see what  being really very relaxed feels like. Practice that between now and tomorrow

      So when the time comes for  the medic to get you into position....yep that wonderful undignified unbeautiful position remember to RELAX.

      CAN you imagine what I felt like when a GORGEOUS young blue eyed surgeon masked up got me into THAT position when about to induce my first baby to come into the world and WINKED at me!! boy did I blush! Back to the procedure. an anaesthetic gel may sting a tad. Jut think of a paoinful wee AND RELAX Then a needle is popped into a place you dont look at too often i suspect. If you feel a prick let the sensation wash over youDont tense up- the sensation will be intensified and that may not be so good Then you will be told to get dressed While they are "fumbling " around your undercarriage do some deep and slow breathing and concentrate on relaxing;  and IF POSSIBLE think of the funniest thing that has happened to you- or even start to compose a letter to someone - either close - or even hated. Tell them what you think- Could be good could be bad - but concentrate on your letter. The underlying message is try not to anticipate the worst cos that isnt fun but try and relax and think "I once i know the best treatment for me life will get back to some level of normality"

      Take care good luck and dont worry

      SueDM

       

    • anna80050
      anna80050 suedm

      Posted

      LOL!!!!!

      Made me laugh!! I remember when i gave birth, the obstetrician told me that I had good legs...oy.

      Will def try all the above mentioned..thanks so much.

    • marey
      marey anna80050

      Posted

      Good Luck Anna....you will be fine!

      Thinking of you

      love marey xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    • suedm
      suedm marey

      Posted

      Hello Marey I reverted to SueDM as I  noted a post from another Sue who advocated CMO -I had NO idea  what that was so I looked it up and i do not understand  why one would want to use an anti arthitic, muscle pain relaxant on the vulva.

      It was I who mentioned the Dance of The itch

      There is so much misinformation about  LS, particularly when it is suggested that keeping away from fungi will help the condition as if eating mushrooms will exascerbate the disease, hence my hopefully gentle rebuttal and history lesson!

      The level of knowldege the average " lay" person has about their anatomy is not that high. Even when I discuss bodily functions with highly intelleigent and well edcuated friends I am often amazed at their poor understanding of what I would consider a pretty basic level. (The use of the word vagina when vulva is meant as an example)

      I beliieve that we should treat people individually and holistically and that does mean that cautiion should be taken when offering complete strangers advice.One doesn't know their level of knowledge or even intellect never mind their experiences or mental or emotional state

      If one has a theory about how to relieve a conditon then perhaps one should state how that experience has affected oneself but not extrapolate that on to others without a full history of their experience / conditon being taken.

      Thinking out of the box can be useful- but historically many strange experiments have been undertaken before a way forward has been found, but perhaps this is not the forum for being too assertive. I suggested to Nikki that to write an article would be a good way forward & have a proper analysis of the findings. I hope that allows you to understand where I am coming from. Sorry the reply is so wordy

      I think this is a forum where we exchange personal support and empathy, and a forum to grumble and grizzle to let off steam

      Best wishes SueDM

    • marey
      marey suedm

      Posted

      Hey sueDM....really appreciated your reply your level tone and your detailed careful and considered response. 

      not at all wordy 

      MORE give me more ...is what I say ...lets dance the itch away! Of course I remember you now...thanks for the nudge.

      IL6 is both a pro and an anti inflammatory. I'm not one for sticking plaster cures but whilst working on the core problem if it grants relief as it is for others ...brill. What I really admire is the heroic effort of trying it out on self....anyone who does that is my complete hero. Hi suedbagal ...you are my hero....and reporting back to us her experiences is absolutely responsible and the way to go. We are at the forefront we will undoubtedly find the way. i CAN'T WAIT TO BE ON LOOSE WOMEN (sorry shouting) with was it Chrisy? who has been promoting such a brilliant proposition. Lets do it.

      Hey hey no restrictions on this site please....out of the box is a good turn of phrase thank you....please come out of the box too...you're a dancer...you get it. not everyone is an academic. nikki is perhaps more of a feeling person ...she just got impatient with you!! but sueDM you have very broad shoulders and of course i understand where you are coming from . Actually what you said in reply was very encouraging and supportive i see that about you. please be you and likewise.

      love marey xxxxxxxxxxxxxxx

    • marey
      marey suedm

      Posted

      PS don't get me started on strange experiments...you should see what happens behind closed doors in respected medical establishments!!
    • suedm
      suedm marey

      Posted

      I know only too well I regulated them for years!
    • marey
      marey suedm

      Posted

      ok...so you've worked in an inspectorate role...well you will understand my passion to get on the patient's side ....to advocate and inform . But on here I'm working on myself and hooking up with other women wishing to work on themselves too. Am having a blast!!

      I certainly don't see the site as an outlet for moaning for me but for other women including yourself who wish to ventilate in this way...very healthy...

      however lets not create any restrictions...! lets reach for the sky and all get what we need....no scarcity ...no restrictions...but lots of encouragement....especially to women like nikki who wanted to share valuable info with us as to how she has reversed her condition...there are a growing number now who have suceeded and been discharged....so lets encourage them to stay with us and to share their perspectives too! anyway i'm sure you get me and that nikki will be back and we'll all be friends again. i am really enjoying getting to know you and all the women on this site....its fascinating and i'm really getting straightened out about how i come across....which is invaluable....for example i've been told very straight not to be a know it all !!!!!!!! I'm listening and learning ....I hope...well trying to anyway.

      so can't wait to hear back from you and more about your perspective. 

      love marey xxxxxxxxxxxxxx

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