Have just been diagnosed with Lichen Sclerosus and think I am getting bad advice from Gynacologist
Posted , 17 users are following.
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
JoHarvey mary10218
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doreen17521 JoHarvey
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suedm mary10218
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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 mary10218
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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 mary10218
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all the best and keep your spirits up
Margaret X
doreen17521 mary10218
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cazblue mary10218
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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 mary10218
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Good luck and Best wishes Sue
suedm mary10218
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SXX
suedm nikkibabie
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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 suedm
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suedm Chrisy
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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 suedm
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suedm Chrisy
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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 suedm
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marey suedm
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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 anna80050
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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 suedm
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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 anna80050
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Thinking of you
love marey xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
suedm marey
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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 suedm
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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 suedm
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suedm marey
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marey suedm
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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